The Agony and the…..Agony of TBI

The Agony and the…..Agony of TBI

A traumatic brain injury is a game changer in life. We are now seeing a lot more attention devoted to brain injuries in the news and in health care due to the high profile athletes who are suffering from traumatic brain injuries, and for sake of readability referred to as TBI’s. Now we see a lot more discussion about the hard hits football players get in the game, and their plights are often publicized. As a result we now are getting more information out to the general public. But TBI’s do not just happen to football players and star athletes! They occur all the time in a wide variety of occupations and of course in accidents.

I would often think about how life would have turned out for me if Traumatic Brain Injuries were not in the mix of my experiences. It is hard to imagine at this point, because I am nearing 60 years of age and life has been eaten up with living with what I was dealt.

One thing I can say is that I gained a lot of understanding through my experiences of the issues facing people who have survived head injuries. Because the experiences I had were so life changing and often could not be described in words, I would understand patients who couldn’t quite voice their feelings either.

My father told me that success for a citizen of this world was to have a large bank account and a very good position with a lot of clout and a huge retirement fund. But I have found that success is better measured in how effective I am in helping someone recover from the impact of an accident or health problem that brought on a TBI and how my ministrations were effective in getting someone back up on their feet. But I was woefully ignorant of all of the issues that result from a TBI and I had survived two at a relatively young age. I assumed that the results were the same for everyone who survived one. That was a terrible assumption! It hampered my ability to help a few people effectively in the first five or six years of being a voluntary caregiver. Fortunately for me, I learned fast and adjusted course and I became more aware of individual differences, reactions and responses to what a patient might be experiencing.

I reacted much differently than my father expected. He had high hopes of my taking over the family farm and also running his outdoors sporting goods business and carrying on his legacy. But he removed that plan in from my future at the time he lost his temper (a frequent experience during my childhood) when I was just thirteen and swung a push broom at arms length to connect with the side of my head sending me into the air and flying sideways and ending a split second later with my landing half in the kitchen sink. He had often complained that I was as hard headed and stubborn as my G–D— mother, and I half believed I was hard headed as the blow to my head should have killed me. If that had not been enough he had beaten all desire out of me a few years later with his fists when I sold a job in our gun-shop a little too low for his tastes and I ended the day with my ears ringing, eyes swollen nearly shut and some very terrifying thoughts that I would not survive to adulthood.

Thanks to a very goodhearted couple I escaped and started a new life in a different town working for a sporting goods store in the hearts of the prime fishing lakes area of Minnesota. That life of new happiness was cut short when I was riding with a friend at age nineteen and a priest who had enjoyed a little too much sacramental wine ran a red light in front of us and we collided with him rolling at better than 35 miles an hour. Our compact car crumbled like a cheap tin can when we hit the big Plymouth Fury III the priest was driving and I went through the windshield. So at age nineteen I was dealing with the effects of not one TBI but three, and each had crippled me a little more.

The cumulative damage was too much to handle all at once and I found myself trying to adjust course and just stay on top of life. It seemed at the time that I would go through a time of convalescence and recover and go to work full time and still realize my share of the American dream. Well! I was naive! TBI’s can haunt a person for the rest of their life.

My experiences with TBI did not end with those three incidents while I was a teenager. I went on to have several construction accidents and I had a pesky heart and blood pressure problem that seemed to crop up from time to time. It was during the times that I dealt with strokes that I learned that a stroke in the brain is also a TBI because it does cause a traumatic brain injury. I was blessed to have moved to New Mexico to work and live and I was very committed to ministry as a pastor and an evangelist. In the tasks of being a pastor and assisting members of the churches I was often called on by parishioners who had experienced accidents or strokes or were caring for a family member who had experienced a TBI. I gained a lot of knowledge through hands on caregiving and experience with dealing with the needs of those people who came to me in need of assistance.

TBI: Traumatic Brain Injury, the fallout

TBI: Traumatic Brain Injury, the fallout

If someone had told me that I would be dealing with the effects of a car accident years after it occurred, I would have immediately assumed it would be due to the obvious damage to a person that results in broken bones and wheelchairs. I would never have thought of the injuries that are internal, and especially brain injuries that are not visible except in the way they affect a person’s function. Now I am much older, I have sustained brain injuries that took years to overcome and I am married to a woman who is also dealing with TBI’s. I also have found myself as a volunteer working on access for disabled residents local to Albuquerque and the surrounding area who are also dealing with TBI’s. One does not realize the impact of such an injury until one is a survivor or caring for a survivor.

If I had not first experienced a brain injury myself as a teenager and had the long recovery experience in my past as well, I would not comprehend what was happening with other people that I know who are also dealing with the effects of head trauma or TBI.

The ways that head trauma can occur are as varied as our fingerprints. Usually no two experiences are alike and even similar experiences will produce different results in people. We have one friend whom I built a ramp for and remodeled his bathroom a few years ago who was injured in an accident while driving home. His car was broadsided by a drunk driver in an intersection traveling at approximately 105 mph. At that speed one would assume the impact would be fatal. But in spite of being hit on the drivers side of his car, our friend survived. He was nearly decapitated by the twisted metal of the door coming through his left side, (stopping just short of his trachea, esophagus, and spine) and the glass shattering and slamming in on him nearly took his eye as his head was impacted on the left side. His body was pushed through the center console and mixed with it and all of the metal and the front end of the drunk driver’s car were shoved to the passenger seat. What is visible is his wheelchair with the braces and straps to hold him upright, his backup oxygen strapped to the back of the chair, and his joystick to control his chair and a TV remote that his caregiver has provided for him.

The invisible wounds are the loss of memory and the majority of normal function such as social skills and cognitive thinking. It takes hours to get through a simple conversation with the poor man. My heart breaks for him. He was a successful businessman in sales and doing well with a wife and children and now he is sitting all day in a chair with no interaction or social enjoyment except in terms of what he can do with a phone. Once he got my number, he began to call me as often as every quarter hour. He was unaware that he had called just fifteen minutes before, and so I would patiently explain that we had just talked and would extract myself from the conversation and go back to whatever I was doing. Sure enough, fifteen minutes later, he would be back on the line. His live in caregiver would explain that the man would just go through his contacts and dial each one and continue to rotate through all day long. Which drove most people nuts! Some people blocked his number, others reported him, and others would try to make time for him. It is heartbreaking to be in proximity to the situation.

Going out and working on ramps for years and remodeling bathrooms for access for the disabled brought me in contact with many like our friend in the above situation. I also encountered combat vets from WW II forward that had suffered TBI’s and some were especially frightening to deal with. There is nothing like a combat vet trained in hand to hand and still strong assuming during his flashback that you are the enemy and finding yourself having to try and defuse the situation without being injured or even killed. And the situation is not limited to men anymore. With Desert Storm in the early 90’s and Enduring Freedom in these past conflicts, we now have female vets coming home with the same kind of injuries as men. One of the women, a nurse I assisted was riding in a Humvee with her medical team, when a IED exploded under the vehicle.

The explosion was so powerful that it drove the floor of the vehicle up and pushed her head into the top of the cab. She suffered a head injury, broken hips and legs as the floor came up into her body and her spine was fractured in multiple places with a accompanying compressed disc issue as well. The attractive and vivacious young woman is now barely ambulatory, (her doctors insist it is a miracle she can even walk) and hobbling about with a guide/companion dog and trying to integrate into society. She can no longer be a nurse due to memory and reaction time delay but she is getting a degree in business and accounting and is longing for the day she can be normal. I did not have to build a ramp for her floor level apartment or remodel her bathroom, but I had to open up a doggie door for her guide dog so he would have freedom to exit the house and be in the yard for his pottie breaks etc. Once she is in bed at night she cannot rise in the morning without putting on braces and going through a intricate maneuver to get out of bed. So with that in mind I recommended and the landlord installed a fire suppression sprinkler system in her residence to protect her and buy time for her in case of fire. We have to not only accommodate the immediate needs for the people suffering from the aftermath of injury, but we also must anticipate possible disasters that might occur.

Another gentleman whom I worked with would flinch, and often react violently when thunder sounded nearby or if fireworks were set off in the summer celebrations. I learned the best thing to do for him was to provide him with very good stereo music and a cable TV package with the sound fed through a set of headphones. That way he was able to block out the sound of July Fourth celebration or bad storms, (during which time the entertainment center was powered off batteries to avoid the possible damage by power surges from lightning) and he could insulate himself from the loud explosions and thunder. I had to improvise often. Sometimes trial and error were the only tools I had to work with. But with the wide variety of aids available today and the many electronic items available, I do eventually find a solution.

These are the things that we can be aware of as we observe people who are dealing with a TBI. What you cannot see unless you are in their shoes is the feelings, frustrations, disappointments, and the many failures to launch after starting the recovery process. If you are a caregiver, the clues are not always clear and so our response is not always appropriate for the situation. A million and one good times and right responses by a caregiver are forgotten often in the one failure. For the person in the bed or chair or even able to walk and move on a limited basis is this one issue, COMMUNICATION. When the person suffering the aftermath of a head wound-TBI, it is often very difficult to communicate what he/she needs at the moment. Even when able to talk, the victim of TBI is often having trouble articulating what is needed. If the caregiver is harried, tired, over extended, short on time, long on chores left to do and the list goes on, the caregiver will often begin to get short tempered, impatient, and frustrated. Especially if a task has to be tried and repeated multiple times in order to stumble on the right or desired response.

I started out married to my wife, married to a woman who was otherwise fully functioning other than being in a wheelchair. After four car accidents in 5 years and two major falls backward in her wheelchair on improperly laid out and maintained walkways, we began to deal with the after math of the multiple TBI’s. Life changed. A LOT!

I am still finding a new normal and I confess I feel a dismal failure at my progress so far. Our normal relationship is gone. In it’s place is a minefield of new experiences, feelings, and of the supposed normal marital relations other couples enjoy, they don’t exist anymore. We are finding our way in a labyrinth of difficult new challenges. I think the greatest problem is that loss of memory that was an issue with the first friend at the top of this article. What can we do except improvise? There is no other option! We find new ways to get around the challenges we now face.

What I never thought I would encounter in the past is the need for support myself in a very different way that would address the unbelievable stress levels I have had to deal with. I can even explain or describe what it is like now to most people because they simply don’t comprehend what is happening behind our closed doors. When I had my accident in July of 2014 and needed surgery myself and also could no longer pick my wife up or help her move, we had to bring in outside help.

But with the loss of my contribution to our finances, we could not hire someone so we asked my wife’s daughter to stay with us and make up what I lacked in being able to lift move or help my wife reposition. My wife’s daughter is 25 years old, and even though she is studying medicine, her life is on hold while I recover and my wife is needing extra care. The benefit for us in having her help is that she is able to monitor and dress wounds, and help with other minor medical needs. But the fact remains her life is on hold. And she has her own health problems to deal with that have often immobilized her.

I now look back on the previous years when I was the lone caregiver and honestly do not understand how I was able to stay sane and functional. Whether from the accident, or the compounded stress, or the depression I dealt with after losing my own mobility for two years or any number of other issues, I have found that I can function much better if I have a way to retreat and have some ‘me’ time. I did not have it for a long time. But now I am finding it necessary to have the private time for my regeneration or I cannot function in the roles and shoes I fill.

But that is the challenge, isn’t it? We do not have replacements. We are often alone and unsupported. What happens to us is a result of sacrificing and laying aside our own lives to care for someone who cannot fully function without help. An outsider would say there are rest homes. Well yes there are. We have all heard about those homes that abuse, neglect, or mistreat the residents. For many people the fear of their loved one being mistreated in any way is a powerful motivator for the caregiver to drop their own life in order to at least give some semblance of normal home life to the invalid. But there is that fallout, isn’t there? We find yourself without income of our own, without proper medical care, often misunderstood as to our intentions, and many times too exhausted to care anymore. We will meekly give ground when our own care is at stake and give up our own rights, but when our loved one suffers due to outside forces, neglect, or abuse our claws come out. I heard a friend remark a few months ago that because I was a Christian, I was an easy target for anyone to subvert and take advantage of, but then he said, “I would hate to be in the shoes of the person who hurts your wife”!

We are like that though. And we must be careful. Because just as the TBI of our patient is often invisible to the world around us, so is our own stress and internal issues that can destroy our health. We are more likely to suffer a heart problem or stroke than the general population. We are more likely to have exhaustion. We are often battling depression, simply because of the many issues that overwhelm us each day in the care of our loved one. We also lack our ‘me’ time, because we often are needed 24/7 at home and if we are working outside the home and also pulling a full shift at home we are usually suffering sleep deprivation and exhaustion. Those are deadly when sustained over an extended period of time.

The problem with TBI’s which include stroke victims by the way, is that they create an environment of worry and fear for the safety of the patient. I wrote earlier about a former pilot from WW II who was cared for by his wife. She eventually was freed from his care simply because he could not be left alone for even a minute after his Dementia was more progressed. In his mind he was still flying missions against the Japanese in the war and he was living those days out over and over. He was eventually placed in a nursing/secured facility and his wife, a dear friend was recovering from a heart attack and the stress brought on by his mental deterioration. Now they have both passed on and the house they lived in is gone and all is as if they did not exist except in a few family members’ memories.

I think that is what some of us fear the most insofar as our personal situation is concerned. We leave no mark on the world when we pass on. Our only claim to notoriety is that we loved, we cared, and we stood for the defenseless and helpless when all others walked away. Maybe that is the best kind of impact to leave in the world anyway.

May I present ‘the most beautiful girl I ever met, so I married her’ Story

May I present ‘the most beautiful girl I ever met, so I married her’ Story

I had been building a wheelchair ramp for a Vietnam Vet who had his adult son visiting while I was working on his home. At the point where I needed the Vet’s input on the pitch of his ramp and the space required for him to access his bathroom door, his son leaned over the man and whispered to him.

The Vet immediately exclaimed, “Of course!”

P1000861The Vet then turned to me and told me I needed to go help his son’s school teacher. Now imagine the impact this woman made on students that when they are in their 20’s and 30’s that they still refer to Patti as their school teacher! I was impressed.!

I finished the projects for that Vet and set out on a quest for this school teacher who had made such an impact on her student that he was still thinking of her years after he had graduated high school. I wanted to meet her simply because she was so impressive in the young man’s description. I searched for her online and I searched for her in county records, but I was unaware that the name that the young man had known her by was no longer her last name. She had remarried and had been widowed since he had been in her class.

When I did find her, It was because she had joined an online social website and she was on Facebook. She wanted to make sure I was legitimately trying to help her and not take advantage of her so we went through a period of time where we used Windows Live Messenger to chat with each other and get to know one another. We had both had unpleasant experiences and I was okay with getting to know her first as I had also had people playing on my sympathies to convince me to give them all kinds of services. I would pour out all kinds of effort only to find out that they had plenty of resources to cover the cost of their own needs and thus shorting someone else I could help that didn’t have resources.

The photo at the head of this article was taken the very first time I met Patti. It was that day in front of her house when I saw her, that I knew I had found my wife. I made up my mind that I would marry her.

I went through a huge adjustment in my life when Patti and I married. I had assumed I could handle anything, but I found that many things in life are so trying and frightening and difficult that they can overwhelm our senses and break us down emotionally. I found just like Patti that it was those times that only my Faith would carry me through. We had some very dark times dealing with infections, ulcers, cancer, Traumatic Brain Injuries and three car accidents. Through it all Patti would lose more ground and when she recovered she has not come all the way back to the place where she was before. So there has been a steady decline in her health and quality of life.

When I fell through the open manhole, which I have written about in earlier articles, we had just come through a very rough very difficult time dealing with a family member who is suffering from Paranoia. Patti had also come through a particularly trying time with her health again. She indeed had been in one of her darkest struggles. In the following article written by Kevin Parker the editor of the Baptist New Mexican, a state church newspaper, she referred to being in a deep pit a couple years ago. That was the deepest that we would have to go I hoped. But my health was no longer good, as I was struggling with my severe back injury and it was becoming more and more clear that I would need surgery.

After my surgery, Patti and I became each others caregiver. I might be feeling better than her one day, and the next day she might feel better than me. Thus, we muddled along at times, and sometimes we both felt good and were able to enjoy a day together. Recently we have been able to start doing more things together. Patti has to rest a lot more than the first years we were married. She gets tired much quicker, and she can succumb to infections much faster. But we know we are going to do okay. There is not much that can worry a person after they have shaken hands with disaster over and over. Things are still hard, still difficult, and still very frustrating. But we have known each other in the worse of times. It makes the good times that much sweeter. And for me, it has renewed the dedication and love that I have for my sweetheart.

As you read Kevin’s article below, you are reading about what the world sees from the outside. The people on the outside do not see what we as caregivers see. They do not even for a moment comprehend or understand the hours of sitting and waiting for doctors to declare a prognosis or diagnosis. The world around us does not have a clue of what it is like to go for weeks on a few hours of sleep per day and quick catnaps. But they will never know the feeling of triumph we feel either when finally we see a light at the end of the dark tunnel and hope comes alive again.

This is Patti’s story as written by Kevin Parker, in the Baptist New Mexican. I am still the proudest husband in New Mexico too.

Paralysis stirs Patti & her husband to compassion

by Kevin Parker, posted Monday, March 28, 2016 (4 days ago)

ALBUQUERQUE (BP) — A message about compassion resonated with David and Patti Waterman at New Mexico Baptists’ 2016 State Evangelism Conference.

The speaker, Sonny Tucker of Arkansas, had no idea the Watermans were in the audience as he told story after story of reaching out to people who many Christians avoid.

Patti is a wheelchair-bound paralytic.

Baptist New Mexican staff encountered the Watermans, members of Hoffmantown Church in Albuquerque, in the exhibit area on the last day of the Feb. 29-March 2 conference.

The table at the information services exhibit had a pneumatic cylinder, so, as the conversation turned serious, BNM staff lowered the table to accommodate Patti in her wheelchair for a microphone and recording equipment. The conversation turned into a spontaneous interview for an upcoming podcast.

Thirty-eight and a half years have passed since a motorcycle accident left Patti paralyzed from the chest down. Reaching 40 years from the accident “will be a great landmark,” she said.

“I praise God every day,” she noted, smiling and delighted to share her story. “Thank you for asking.”

In Elgin, Ill., she recounted, she had been a cheerleader through both junior high and high school. She also had run cross-country track during high school, something that made soon-to-occur events difficult to understand at age 17. Four months after her graduation, the motorcycle accident in which she was a passenger changed everything. She flew over 80 feet through the air, landing on her head and shoulder. The choices she made that day have shaped her life.

In the hospital, the medical staff told her family Patti likely would not awaken from her coma but, if she did, she would be little more than a vegetable. The doctors were being honest and sincere. Yet, Patti indeed woke up and was not a vegetable.

Doctors told Patti she would never leave the hospital. “They told me I should have died,” she said. Yet, she both lived and left the hospital, though struggling through the new experience of being a teenager in a nursing home filled with elderly people.

The journey of her recovery required resolve. People Magazine ran a story in May 1978 about a Rehabilitation Institute of Chicago chaplain who served Patti among her patients. Nina Herrmann briefly chronicled Patti’s struggle with patience after her 18th birthday. “I’ve been arguing with nurses and doctors because I want to do things for myself,” she reported Patti saying. “If you can hang on to your patience,” Herrmann counseled Patti, “you have the key to discovering yourself and God.”

Thankfully, Patti had become a Christian at age 12 as her parents were going through a divorce. “I was able to find my strength in living,” she recalled.

After her accident, and as a former cross-country runner, Patti had asked God, “What’s up with this?” She recalled telling herself, as she sat in bed, that she would never be able to work or have a career. “I’m never going to marry. I’m never going to have kids. I’m never going to go to college. I’m never going to get a job. I’m never, never, never.”

Before then, Patti said she had been an optimistic person, positive and hopeful. Then, “All of a sudden my world fell apart, I saw no hope in living.”

Patti began to see some light in life because of her faith. Ultimately, she experienced all those things she thought were lost.

Her story and dramatic progress attracted the attention of television star Barbara Walters, who interviewed Patti in 1979 and released the inspiring story of her determination to a national audience.

After graduating from college with a degree in teaching, she taught in southeast Texas and northwest New Mexico, impacting kids. She also married and became a mother to two children.

Her husband recalled meeting some of the students she influenced and hearing their stories. David called the stories “glowing accounts,” and recalled one in particular of a young man who told of how Patti, unknowingly, kept him from committing a school shooting.

But Patti’s successful recovery from her motorcycle accident didn’t mean leaving hospitalizations in the past. During the ’90s she had one surgery every year for seven years. Between 2007 and 2009 she spent another 18 and a-half months in the hospital with her life deteriorating. Despite the effects of serious infections and multiple surgeries, she survived again. Most recently, she’s suffered several additional injuries. Through it all, she trusts God. David describes her as “stubbornly optimistic.”

The impact of compassion

The evangelism conference message by Sonny Tucker, Arkansas Baptists’ executive director, resonated with Patti and David because they know what it’s like to need compassion, yet be avoided.

David recounted, “When I met her and started courting her, my friends would tell me I should look for a woman who could walk because I would be dealing with all the issues that ‘crippled’ people have.” They suggested he avoid her.

David, himself wheelchair-bound temporarily in the past, noted that “sometimes, in spite of the fact that society and the church really know very little about the life difficulties of the disabled, most really don’t want to know.” He believes that “the families of disabled people can be won by how we treat the disabled in our midst” — winning them to Jesus with compassion, just like Tucker was preaching.

Today, Patti sees her unique situation, surviving and living in a wheelchair, as creating opportunities rather than limiting them. Because she is disabled and coping both spiritually and emotionally, she was invited to help run a Bible study for disabled people called Living Hope through New Covenant Church not long after moving to Albuquerque. Just before the opportunity arose, she had been asking God, “Where do You want to use me? Lead me.” After spending 25 years in Farmington, N.M., she was new to Albuquerque, with few connections and few opportunities.

The Bible study role excited her, enjoying the activities of leading and helping others. “God has your life set up, that whatever ails you, whatever you feel nobody else has, God has a plan for everything. No matter what happens … it doesn’t go by without Him decreeing, ‘Yep, that’s OK; that’s fine; she’ll do fine or he’ll do fine; she can make it through that,'” she said. She knows. She’s been there.

The Bible study includes people in walkers, people with physical issues and people with various mental and emotional disabilities, each having encountered some debilitating obstacle in his or her life. Patti calls their obstacles isolating setbacks. “They are having a hard time getting over it and moving on,” she said. “God uses us with setbacks in life to move forward in the most beautiful way where He will be glorified.”

David thinks the biggest message his wife brings is that “by being there, they look at her and see that she went and got a teaching degree and did all of this stuff. Suddenly, people have this hope that starts to grow, ‘Hey, she did it; I can, too.’

“If we can show them that they have worth as Jesus sees them and that they can contribute to their family and their community, that gives them hope,” he said.

After telling about a recent injury stemming from her condition, Patti described “coming closest to God in her deepest pit.” She wants others to know they can find Him there, too. In such moments, she talks to God out loud. She feels His presence and knows she’ll be okay. And she hopes her struggles open doors for others to interact about the struggles of disabled people. God has given her the kind of compassion she and David hope others will discover as well.


EDITOR’S TAKE:

Patti and David’s story is packed with many takeaways for every Christian. They especially bring to mind the Bible’s story of four friends who dug through a roof and lowered their paralytic friend down to Jesus. They (1) had a friend who was a paralytic and (2) wanted to take him to Jesus. Each of us needs to look for the “paralytics” around us — people who are different from us and need our compassion. We need to befriend them, and we need a heart that wants to bring them to Jesus. So, who do you see around you? Who is avoided? Become a friend. Take them to Jesus. What can your church do to extend compassion to people hungry for it? What can you do? Read. Ponder. Plan. Then do something.

Kevin Parker is editor of the Baptist New Mexican (http://bcnm.com/bnm-current-edition), newsjournal of the Baptist Convention of New Mexico. The recording of the Baptist New Mexican’s interview with Patti will be released as a podcast at www.bcnm.com/bnm. If you’re interested in having Patti share her story with your group personally, contact the Baptist New Mexican at 505-924-2311.

Accompanying Boxed Text:

Albuquerque’s Patti Waterman appeared in many news reports from 1977-1980
under her maiden name of Flannery. The following appears to be a public service
announcement she did with CBS during 1980. She tells the story of her teenage
accident in her own words.

“I am Patty [sic] Flannery, and at 19 I have seen more and done more than most
people at 60. I had made the drugs and drinking scene by the time I was 17.
Then came that fateful Labor Day – September 4, 1977. I became a holiday
statistic people read about. My accident was right out of one of those crazy,
wild, movie chase scenes.

A group of us had been partying on drugs and wine just before I hopped on the
back of my friend’s motorcycle. We were going 70 miles an hour in a 30-mile
zone when I joined hands with my sister who was alongside me on another
cycle. We dropped hands just as we approached a curve. I was thrown 85 feet. I
was luckier than my friend. He will never walk again. The doctors say I have a
50-50 chance to someday stand and walk with braces. Two years is a long time
to spend in a wheelchair, especially when you are a teenager. Now, I have a
lifetime to regret my foolishness. There is no dumber combination than drugs,
wine and motorcycles. Don’t let it happen to you.”
Reproduced from a CBS radio transcript printed in an Ann Landers column
during July, 1980.

I have found that as much as we have struggled in our lives, and as much as we had to deal with, that when I was in the Rehab Hospital, I met people who were in far worse condition than we are. So I will continue to take care of my sweetheart and I will continue to help those who are also struggling. We who are caregivers are our own best resource. We can all tell of how we overcame the tough times, and even though those people who have never walked in your shoes don’t understand you, we can all strive to understand each other and encourage each other.
But it does not stop there. We also need to educate the public and the people around us in our immediate circle. I have found that in spite of family members often being nearby every day and others being in touch by phone or email, they don’t always grasp what is necessary to take care of the patient. I was often very frustrated that I could not get the point across to relatives that I needed help. I have learned that family is often the people who are closer than blood relatives through friendship and compassion. We have learned to look to that ‘family’ more than we look to relatives for help to deal with the hard times.
David
It has been a while since I posted anything, but I was involved…

It has been a while since I posted anything, but I was involved…

I work with a lot of different people to help bring attention to the disabled in our area and to especially shine a light on the caregivers that care for the disabled.

But it the midst of doing for others and caring for my wife, I was knocked down myself. I fell into an open manhole at a City of Albuquerque Recycling station on July 27, 2014. That started a new kind of life for me. I went from being able to pick my wife up and put her in the car and to lift her from bed to her chair and countless other tasks to laying beside her in our bed and hurting—–a LOT!

The fall did some damage to my spinal column and one vertebrae slipped a small amount to start putting pressure on the nerves to my legs. The pain was excruciating! I suddenly found it hard to walk without gasping at the sharp jabs travelling up my spine. I also found I could no longer lift my wife into her chair or move her in bed or a myriad of other tasks that I would do before without any effort.

I not only sustained a severe injury that eventually  caused so much trouble for me that it required surgery, but both my wife and I sustained a severe blow to the quality of life that we had enjoyed before. Our joint mobility was damaged as much as my mobility was restricted. Things that we had been able to accomplish before in spite of my wife being wheelchair bound for years are no longer possible. What is worse, there is no magic extra cash flow to cover the cost of hiring a caregiver to come in and assist us.

As a result many of the things we enjoyed are gone and we are still working out ways to regain lost mobility nearly two years after my accident.

Being an older man, did not snap back from this injury like a young man would. I had some complications during the surgery that was done to correct the damage from the fall. In the entire time I have been disabled and unable to even function normally on most days, I also have had near zero income except for when I could sell tools that I had formerly used on my jobs.

I very quickly went through the small amount of cash reserves I had, and along with the need to purchase medications and to see doctors, specialists, and therapists, I also still had my share of the bills to pay to keep the household running. We are not wealthy. Just like all of you, being a disabled person and a caregiver married, we are running just above empty most of the time.

But we have adapted. We have grown in our consideration and love for each other. We have learned that in spite of our disabilities and setbacks, we are by no means the worse off. I spent nearly a month in hospitals after the surgery. First I had the surgery on October 8th of 2015, but I had lost over 700 CC’s of blood. That required I have transfusions, which led to other issues which included blood clots which caused a stroke. I went from a walking wounded person to a wheelchair bound person. It was not a new experience. I have had times in the past when serious accidents put me in a wheelchair. But this time, I did not really have the use of my right side due to the stroke. It complicates things. I was placed in a Rehab hospital for a few weeks to help me regain some control of my body and to be able to up and apout on my own.

My therapists said that I needed to get back on my feet to care for my wife. They used this as a motivator to inspire me. For one of the things that happened was a severe depression hit me. Perhaps partly from the stroke and partly from a lot of meds as well as the very restrictive effect of the sudden disability. I could not get myself out of that hole! I wanted to get back to writing, to do artwork and to at least doing something for my wife, but I couldn’t get unstuck!

Human Services of New Mexico determined that I was eligible for medical assistance through Medicaid at least for the time I am recovering the use of my body, so I didn’t have to worry about my medical needs as much, but there is still no compensation for the loss of income and the huge increase of other costs to replace my contributions I formerly made to the household. And to complicate matters even further, I am scheduled to meet surgeons again as it appears scar tissue is growing in to restrict the nerve channels in my spine again.

I had a fusion in the surgery on October 8th, and there are now rods and screws in my spine just above my hips. It is different to not be able to bend as much. For one thing that area is stiff. Not that I want to bend because the pain is unbearable. But I also wear a brace that prevents me from bending to much. We cannot afford to have the bone implants and the rods and screws pulled loose or crushed by me moving too much before healing is complete. So I wait.

I am working again a little. It is not much, but I paint small little ceramic figures for a lady who runs a arts and crafts business and does quite a volume of business. My therapists were very excited about the ‘job’ because it is helping me to revive a nearly unmoving right hand and bring it back to life and use again. The pay is per piece. It adds up to less than a 50 dollar bill per week. But I am not doing it so much for the money as I am for the fact that it is working wonderfully to restore the use of my hand. My insurance only covered a specific amount of therapy so I had to find ways to continue the process on my own. When my therapists found that I wanted to recover and I did not want to sit around feeling sorry for myself and quit living an active life, they gladly found ways to use my former job tasks to revive my damaged nerves. They described something called nerve memory. After an accident, our bodies will ‘remember’ all the movements we did before an accident or stroke. So if we can duplicate those moves or even just try, sometimes our brain and nervous system and muscles ‘remember’ the movement and the brain rewires and reroutes signals and new nerves may grow in the damaged area as well as some existing nerves will heal, bringing at least some of our movements back.

It is March. The Occupational therapist explained that we have come to the end of the window where the plasticity of my hand, arm, and leg are still good and likely to fully recover. But I can still recover some more movement, it will just take a lot longer and will require an acceptance of some long term disability. In my case, a comparison between where I am now in terms of mobility and ability between now and before the accident is like a car sitting in a scrap yard fit only for salvage and a vehicle on the road that starts and runs flawlessly.

The week just prior to the accident I was working for a large commercial property manager and was able to carry up to 180 lbs on my shoulder either from my van to a place where I would be working or even up a ladder. Contrast that with not being able to even climb stairs now unless there are handrails and especially wide and shallow steps not requiring I have to lift my foot very high.

It is a huge difference between before and now. It has required that my wife and I be creative. We need help now which is partially provided by my wife’s 24 year old daughter. At her age she should be dating and going to school somewhere and building her life. But she is staying with us and filling in the gap at least to some extent. A girl that weighs less than 11o lbs is not able to pick up a woman her own size or heavier than her without endangering damage to her own back.

I wrote this article to let you know I have not quit writing, but to take a breather first of all. I needed to adjust. And I also needed some me time. I have been working hard for several years. I enjoyed the praise sometimes gushing praise of employers who insisted I could walk on water, and make no mistake! I can walk on water when it is frozen! LOL but I suddenly went to a dead stop. Emotionally and mentally it was very difficult. I can drive streets in Albuquerque, Santa Fe, Los Alamos, Las Vegas, Espanola, and other cities and towns and point at buildings I repaired, houses I repaired or built, roofs I put on, signs I painted and when I was drilling water wells I set records for drilling the cleanest and most wells per week while working for a Well drilling company based in Santa Fe/Espanola area. I was urged by building inspectors to increase the size of my operation, go into business for myself and I was labelled the Master builder in one town, the  Craftsman in another, and the Do anything or miracle worker in other areas. I was the trouble shooter and the do anything guy that everyone turned to as a last resort and I could work a couple hours per day to make the money other guys had to work 8 to 10 hours to earn so that I could be available for my sweetheart when she needed me. I donated wheelchair ramps and home remodels to disabled and repaired wheelchairs and vans for handicapped people who could not afford to pay the shops and contractors to do the repairs. And life was hard, very hard, as it always is for caregivers, but we managed. And then it all collapsed and I was sitting in a wheelchair in a hospital and I could not walk without a walker and a nurse holding me up. The end of an exciting and satisfying and fulfilling construction career that I had enjoyed as much as I enjoy any other activity.

We have survived, but we have struggled a lot to do so. The refrigerator was often nearly empty or empty. We often looked at nearly empty pantry shelves. and we counted pennies and nickels and dimes and quarters at times to find the money for copays for my wife’s meds. But we survived, just like you do, because there is nothing else we can do. Just keep going on and keep striving to gain a little ground each week.

I would have given up a few times, but I have an excellent doctor and above average surgeon’s staff and pain and spine specialists, and I have some great therapists. Plus one of the finest Psychologists I could ever have found. So I made it. Not out of the woods yet. But I am back. Looking for ways to get this pair of tingling numb legs to continue to recover, and for ways to keep the process going to wake up my right hand. Part of the credit if not most of the credit for my recovery goes to some great people at a Presbyterian Rehab Clinic on Southern Blvd in Rio Rancho New Mexico. Thank God for people like them! The medical staff members we all depend on are often the only reason why the people we care for are doing as well as they are, and when we go down for the count, they help us get back to where we can be the proactive caregiver again.

Glad to be back! I have a lot of new articles rattling around in my head begging for ink and paper. So I will get to writing again.

When the Caregiver needs a Caregiver

When the Caregiver needs a Caregiver

I work with a lot of different people to help bring attention to the disabled in our area and to especially shine a light on the caregivers that care for the disabled.

But it the midst of doing for others and caring for my wife, I was knocked down myself. I fell into an open manhole at a City of Albuquerque Recycling station on July 27, 2014. That started a new kind of life for me. I went from being able to pick my wife up and put her in the car and to lift her from bed to her chair and countless other tasks to laying beside her in our bed and hurting–a LOT!

The fall did some damage to my spinal column and one vertebra slipped a small amount to start putting pressure on the nerves to my legs. The pain was excruciating! I suddenly found it hard to walk without gasping at the sharp jabs traveling up my spine. I also found I could no longer lift my wife into her chair or move her in bed or a myriad of other tasks that I would do before without any effort.

I not only sustained a severe injury that eventually caused so much trouble for me that it required surgery, but both my wife and I sustained a severe blow to the quality of life that we had enjoyed before. Our joint mobility was damaged as much as my mobility was restricted. Things that we had been able to accomplish before in spite of my wife being wheelchair bound for years are no longer possible. What is worse, there is no magic extra cash flow to cover the cost of hiring a caregiver to come in and assist us.

As a result, many of the things we enjoyed are gone and we are still working out ways to regain lost mobility nearly two years after my accident.

Being an older man, did not snap back from this injury like a young man would. I had some complications during the surgery that was done to correct the damage from the fall. In the entire time I have been disabled and unable to even function normally on most days, I also have had near zero income except for when I could sell tools that I had formerly used on my jobs.

I very quickly went through the small amount of cash reserves I had, and along with the need to purchase medications and to see doctors, specialists, and therapists, I also still had my share of the bills to pay to keep the household running. We are not wealthy. Just like all of you, being a disabled person and a caregiver married, we are running just above empty most of the time.

But we have adapted. We have grown in our consideration and love for each other. We have learned that in spite of our disabilities and setbacks, we are by no means the worse off. I spent nearly a month in hospitals after the surgery. First I had the surgery on October 8th of 2015, but I had lost over 700 CC’s of blood. That required I have transfusions, which led to other issues which included blood clots which caused a stroke. I went from a walking wounded person to a wheelchair bound person. It was not a new experience. I have had times in the past when serious accidents put me in a wheelchair. But this time, I did not really have the use of my right side due to the stroke. It complicates things. I was placed in a Rehab hospital for a few weeks to help me regain some control of my body and to be able to up and about on my own.

My therapists said that I needed to get back on my feet to care for my wife. They used this as a motivator to inspire me. For one of the things that happened was a severe depression hit me. Perhaps partly from the stroke and partly from a lot of meds as well as the very restrictive effect of the sudden disability. I could not get myself out of that hole! I wanted to get back to writing, to do artwork and to at least doing something for my wife, but I couldn’t get unstuck!

Human Services of New Mexico determined that I was eligible for medical assistance through Medicaid at least for the time I am recovering the use of my body, so I didn’t have to worry about my medical needs as much, but there is still no compensation for the loss of income and the huge increase of other costs to replace my contributions I formerly made to the household. And to complicate matters even further, I am scheduled to meet surgeons again as it appears scar tissue is growing in to restrict the nerve channels in my spine again.

I had a fusion in the surgery on October 8th, and there are now rods and screws in my spine just above my hips. It is different to not be able to bend as much. For one thing, that area is stiff. Not that I want to bend because the pain is unbearable. But I also wear a brace that prevents me from bending too much. We cannot afford to have the bone implants and the rods and screws pulled loose or crushed by me moving too much before healing is complete. So I wait.

I am working again a little. It is not much, but I paint small little ceramic figures for a lady who runs a arts and crafts business and does quite a volume of business. My therapists were very excited about the ‘job’ because it is helping me to revive a nearly unmoving right hand and bring it back to life and use again. The pay is per piece. It adds up to less than a 50 dollar bill per week. But I am not doing it so much for the money as I am for the fact that it is working wonderfully to restore the use of my hand. My insurance only covered a specific amount of therapy so I had to find ways to continue the process on my own. When my therapists found that I wanted to recover and I did not want to sit around feeling sorry for myself and quit living an active life, they gladly found ways to use my former job tasks to revive my damaged nerves. They described something called nerve memory. After an accident, our bodies will ‘remember’ all the movements we did before an accident or stroke. So if we can duplicate those moves or even just try, sometimes our brain and nervous system and muscles ‘remember’ the movement and the brain rewires and reroutes signals and new nerves may grow in the damaged area as well as some existing nerves will heal, bringing at least some of our movements back.

It is March. The Occupational therapist explained that we have come to the end of the window where the plasticity of my hand, arm, and leg are still good and likely to fully recover. But I can still recover some more movement, it will just take a lot longer and will require an acceptance of some long-term disability. In my case, a comparison between where I am now in terms of mobility and ability between now and before the accident is like a car sitting in a scrap yard fit only for salvage and a vehicle on the road that starts and runs flawlessly.

The week just prior to the accident I was working for a large commercial property manager and was able to carry up to 180 lbs on my shoulder either from my van to a place where I would be working or even up a ladder. Contrast that with not being able to even climb stairs now unless there are handrails and especially wide and shallow steps not requiring I have to lift my foot very high.

It is a huge difference between before and now. It has required that my wife and I be creative. We need help now which is partially provided by my wife’s 24-year-old daughter. At her age, she should be dating and going to school somewhere and building her life. But she is staying with us and filling in the gap, at least to some extent. A girl that weighs less than 110 lbs is not able to pick up a woman her own size or heavier than her without endangering damage to her own back.

I wrote this article to let you know I have not quit writing, but to take a breather first of all. I needed to adjust. And I also needed some me time. I have been working hard for several years. I enjoyed the praise sometimes gushing praise of employers who insisted I could walk on water, and make no mistake! I can walk on water when it is frozen! LOL but I suddenly went to a dead stop. Emotionally and mentally it was very difficult. I can drive streets in Albuquerque, Santa Fe, Los Alamos, Las Vegas, Espanola, and other cities and towns and point at buildings I repaired, houses I repaired or built, roofs I put on, signs I painted and when I was drilling water wells I set records for drilling the cleanest and most wells per week while working for a Well drilling company based in Santa Fe/Espanola area. I was urged by building inspectors to increase the size of my operation, go into business for myself and I was labelled the Master builder in one town, the Craftsman in another, and the Do anything or miracle worker in other areas. I was the trouble shooter and the do anything guy that everyone turned to as a last resort and I could work a couple hours per day to make the money other guys had to work 8 to 10 hours to earn so that I could be available for my sweetheart when she needed me. I donated wheelchair ramps and home remodels to disabled and repaired wheelchairs and vans for handicapped people who could not afford to pay the shops and contractors to do the repairs. And life was hard, very hard, as it always is for caregivers, but we managed. And then it all collapsed and I was sitting in a wheelchair in a hospital and I could not walk without a wlaker and a nurse holding me up. The end of an exciting and satisfying and fulfilling construction career that I had enjoyed as much as I enjoy any other activity.

We have survived, but we have struggled a lot to do so. The refrigerator was often nearly empty or empty. We often looked at nearly empty pantry shelves. and we counted pennies and nickels and dimes and quarters at times to find the money for copays for my wife’s meds. But we survived, just like you do, because there is nothing else we can do. Just keep going on and keep striving to gain a little ground each week.

I would have given up a few times, but I have an excellent doctor and above average surgeon’s staff and pain and spine specialists, and I have some great therapists. Plus one of the finest Psychologists I could ever have found. So I made it. Not out of the woods yet. But I am back. Looking for ways to get this pair of tingling numb legs to continue to recover, and for ways to keep the process going to wake up my right hand. Part of the credit if not most of the credit for my recovery goes to some great people at a Presbyterian Rehab Clinic on Southern Blvd in Rio Rancho, New Mexico. Thank God for people like them! The medical staff members we all depend on are often the only reason why the people we care for are doing as well as they are, and when we go down for the count, they help us get back to where we can be the proactive caregiver again.

Glad to be back! I have a lot of new articles rattling around in my head begging for ink and paper. So I will get to writing again.

A most unfortunate situation…

A most unfortunate situation…

I had decided to join a mission team to the Navajo Reservation one summer. I was in my early twenties and I had assumed I could handle anything that life could dish out. I might have had that attitude partly from my experiences in childhood, and several very serious accidents that had threatened my life as well as finding that I had ‘inherited’ physical problems that would prove to plague me all of my life to the present.

The missionary team I had joined was headed up by a portly (very well fed) evangelist who was of mixed Native-American and Caucasian descent who had an affinity for the people living on the reservation that was obvious to even my inexperienced eye.

We set out on a route through the reservations from the Wind River Reservation in Wyoming to the Jicarilla Apache Reservation in New Mexico until we finally arrived in a remote corner of the Navajo Reservation in Northeastern Arizona. It was there that I was introduced to other team members recruited from across the US that had been invited by our group leader, Lee. Lee had spoken to me privately that many of the would-be missionaries apply for the chance to work with missions efforts on the Reservations but are usually gone after the first week due to the privation and sacrifice of the comforts of home on the altar of necessity. So it was that the first exit off the paved road on a dirt trail that wound over 60 miles into the virtual wilderness of desert in Northeastern Arizona culled out a considerable number of people along for the ride. One elderly lady stayed for some time and more than pulled her weight and was especially comforting to the young single women who had decided to stick out the mission effort. Those young women stayed in spite of the available running water being about 60 miles away near that highway we had left when we had entered that dirt track. Through that elderly lady, I too was encouraged, for she reminded me of my own mother and her resourcefulness almost matched my own mother’s!

It was on that trail through those Reservation stops from Wyoming to Arizona that I was first introduced to a totally unfamiliar way of life and different kinds of religions. For each tribe had their own beliefs and religion. I also would eventually be introduced to my next care giving job. The elderly lady had a name, of course, but all of us younger missionaries called her the Iron Lady. I have no idea anymore if we named her after the famous Maggie Thatcher of England, that astonishingly well-known Prime Minister of England! Like Thatcher she was so strong and self-assured in everything she did. Eventually, she had to return to her home to take care of some situation there, but before she left she invited me to come to her home church and preach for the congregation she was part of. The invitation was pending the assent of the church leadership of course.

It was over a year before I began to do an evangelistic tour across the nation and since I was passing near the town where our ‘Iron Lady’ lived I contacted the church pastor and asked permission to stop by and preach at least one service and possibly expand to a weeklong revival crusade if the church would have me. Little did I know that I would be drawn into a care giving situation that would develop into so much more and leave me much more experienced in care giving while being deeply encouraged on the one hand and deeply wounded on the other.

Those were the days that traveling Trailways and Greyhound buses were my main mode of travel. I could sit back and let them do the driving and I could read and study only having to watch for bus changes and routes. I arrived in the town that was closest on the Greyhound route and called the church to let them know I needed the promised ride back to their church. I waited around until my ride arrived and there was the Iron Lady herself and with her a young man and woman that were in their 20’s whom I learned were two of her children. We spent the 45 minute trip to the church and town catching up on what had happened in the last year for each of us and it seemed like no time that we had arrived back at their church. We stopped at the church so I could meet the pastor and after I had made the obligatory greetings and meetings to the pastor and deacons I was told I would stay in a spare bedroom belonging to one of the Iron Lady’s sons. Since she was 61 years old at the time her son proved to be about 40 and he had a daughter.

Well! It was not love at first sight, but perhaps there was some lust involved! I was not prepared for a meeting with someone who was so beautiful and at the same time so unpretentious, as if she were not even aware of how she looked and how she could affect the guys around her. I was usually rather tongue tied and stumbled terribly when in her presence much to the amusement of her father. He evidently did not think I was a threat to his daughter as we were asked to pitch in and help together to do the chores on the farm he worked outside that little Missouri town. I learned she was a second-year college student and that she was home for the summer from school and scheduled to go back in the fall. I eventually found a way to control my vocal cords and managed to converse with her without stammering and stuttering too much! We eventually decided we liked each other and we promised to write and stay in touch as we both went on with our lives.

I preached the first six nights of the revival and was scheduled to ‘close’ out the week with the final sermon on Sunday night. It was a hot muggy evening with the humidity so high that I felt like I had just stepped out of a sauna! I soon found as I was sitting on that platform in that small wood frame and sided church that I needed to shed my sports jacket. When I took my jacket off, it seemed to be the cue or unspoken permission that everyone on the platform could also do the same. I felt rather unqualified to be a young twenty-something like me that could influence a church music team in front of a rather stoic reserved leadership, but it was something I got used to over the coming years. The music was wonderful, the pastor’s words were strong and encouraging as only a farmer who relied on faith to farm could do, the offering was taken, and it was time to preach.

I preached a sermon that was one of my favorite themes titled when the ‘Devil hands you a stick of dynamite’. I wanted to leave this wonderful closely knit congregation with a last message of encouragement. I had been treated with the utmost respect and care. I was going to miss these people in this little rural town with its old-fashioned buildings and customs! So I preached my best effort. I shared how sometimes the currently wildly popular prosperity gospel was not always true to life. I reminded the congregation that the heroes of the Bible had serious and often time’s life-threatening trials and tribulations and their great triumph was that their faith did not fail. They hung in and stood in the face of life’s battles. I finished the message and rather exhausted stood waiting for the line of people coming forward to hear a word of encouragement or prayer from the evangelist. This was another custom of the charismatic church services I did not particularly enjoy or relish. When I had traveled with Lee he would cynically refer to this time as ‘the time that we slap a sweaty hand on the empty heads and bless them’. That was a side of Lee I did not like to think about! It would always come to mind ever after whenever I stood receiving a ‘prayer line’. But I stood and listened as each person who came forward shared their prayer requests quietly and sometimes desperately voicing things no one else in their church or even their families had ever heard about.

Bringing up the end of the line was Ellie, that wonderful new friend I had spent the last week working with! We had fed the livestock, drove tractor and baled hay, cut, pulled, and gathered weeds out of the garden together and generally kept close. This was so I could sneak another peek at some surprisingly symmetrical curves crowned with an amazing river of red hair that seemed to shine like deep red copper and could make me quite lose my entire train of thought. Sometimes even the caboose disappeared on that train of thought!

Ellie stood in front of me trembling and starting to cry. As she started to talk, she began to sob. Her shoulders were heaving and shaking while suddenly her father’s eyes were boring holes into me as I listened. She had been date raped by a football player from the college where she attended. She had been to her doctor when she noticed some problems starting to show in her health. She was diagnosed as HIV positive. She was already losing ground and some things would soon be impossible to hide from her family. I stepped back in shock. My surprise and shock must have shown on my face. So much so that her father half stood up from his seat but Ellie’s mother put out a hand to hold him. My mind briefly marveled at how the gentle touch of a woman could hold a man who weighed at least 200 pounds and was almost all iron and muscle. My thoughts quickly turned back to Ellie. I felt helpless.

I looked up and with my eyes I sought out the face of the Iron Lady. When I caught her gaze I put all my feelings in the look I gave her. She stood up and came forward to stand about 10 feet away from Ellie. She hummed an old hymn under her breath which let Ellie know she was there for her. I leaned over and told Ellie I was going to pray for her. It seemed so completely inadequate at the time, but I was to learn over the last many years since then that it was the only viable solution. Ellie sat down in a front row seat, still crying.

I walked over to the Iron Lady and very quietly whispered to her what had been shared by her granddaughter. I watched the Iron drain out of her face. Her shoulders sagged. She told me she would like me to cancel my plans to leave the next morning that she wanted me to stay and talk to Ellie’s parents. She stood for a long time with her head bowed and finally leaned forward to whisper, “What a most unfortunate situation….” She finally turned and walked back to Ellie’s parents and asked them to allow me to stay at her house that night. She told them we had a discussion to take care of the next day.

I sat and talked to my friend into the night. She had regained her old strength somewhat and shared with me that her son respected me very much and had the moment I had come to the church. I found that hard to understand! I did not feel that special or unique! But she explained that I had looked directly in the eyes of the pastor and deacons and worked as hard as any in his family in spite of wearing ‘church clothes’ and I had carried my weight. So, she explained that it was through his influence that the small congregation had raised over 1,400.00 in that week long revival crusade for my support on my trips to my future engagements. I didn’t know that for myself  that evening, but sure enough, Ellie’s father handed me a check the next day for 1,400.00 from the church treasury. He gave it to me with the comment that I had preached it real and I had not been like those stuffed suits on TV. Perhaps he is the reason I have always tried to preach it real from that time on. I have avoided the gimmicks and the false hopes and promises that became popular among evangelists for awhile and tried to share just the messages that I could lift straight out of the Word. Real was what he called it. I hope that is my epitaph!

The ‘Iron Lady’, Ellie’s parents and I all sat around the older woman’s table the next morning. Ellie was still sleeping. Her mother said she had cried herself to sleep. Her parents still did not know what she had shared with me. When her father heard what the problem was he sat like he had turned to stone. Ellie’s mother sat as though the whole world’s weight fell on her and crushed her. The sparkle went out of her eyes. With that sparkle she had looked young and vibrant, now she looked like a worn hard working and defeated farmer’s wife who had just had her every hope ripped from her.

Ellie’s father started to mutter under his breath, and his wife touched his arm again at which point he subsided. I again marveled at that woman’s power over her husband that her touch could instantly calm him and cause him to sit calmly. I had a glimpse of a love bond that was other worldly and it was amazing to me! We talked for a long while, but it was obvious it was an issue beyond our ability to handle by ourselves. The Iron Lady had again completely regained her old appearance and she finally brought our discussion to a close with a request that we pray together. Ellie’s father prayed for all of us and part of his prayer was that he asked God to keep him from going to his old ways and hunting the rapist down to ‘deal with him’. That had a hint of danger in it for the as yet unnamed football player. I took note of that and vowed not to anger this big strong farmer who was obviously also very capable of carrying out whatever he wanted to do.

I finally was asked my input by Ellie’s father and I explained that first and foremost I would normally not share what was shared with me in confidence in a prayer line. To breach a trust as an evangelist or a pastor would violate the very basic rules of ministry! But I felt that the family needed to know so that they could properly respond to Ellie’s needs. They assured me they were very grateful for my wisdom. I did not feel so wise, I felt completely out of my area of expertise!

I prepared to leave, all the while hoping that Ellie would make an appearance. But her mother said she was too embarrassed to face us. Her dad offered to drive me to the neighboring town where I could catch my bus and as he did he also offered to help me cash the check from the church that he handed to me. I was surprised and overwhelmed by the size of that check! It was very seldom that a church the size of that church would raise such an amount!

As we drove to the Greyhound station, I sat in stunned silence as Ellie’s father told me that she had told him she had fallen in love with me. I expressed my doubts to that information given the short time I had been there in that community and I wondered if there was anything to a saying among evangelists that we were considered the rock stars of the church communities. But in spite of his skepticism as well, she had insisted that he accept me. I was now very confused as to what I was to do with this new information and at the same time I was more than a little excited only to quickly realize in spite of this news that she would not have a very long life. So began a tug-of-war in my heart. My feelings must have shown on my face because her father in a surprisingly gentle voice told me he understood how I felt. He told me how he and his wife had met and how she had tamed him from being the town rebel to church deacon simply by being her sweet gentle self. She had always been able to calm him with just a look or a touch and he was now in his 21st year of marriage and it still mystified him as to how she could do that. I agreed that his marriage was something that I marveled at as well.

At the bus station, he asked me to stop back in on my way through at any time. He asked me to consider his family my family and then he asked me what I felt about all the things that had happened. I told him I needed to have some time to think. I explained that I had lost a fiancée to a car accident just before I had moved to Colorado from the Midwest. I did not know if I could handle this situation without some time to think and pray. He suddenly rested his head on the steering wheel and began to cry. I left him there in the parking lot sitting in his pickup, sobbing and hugging the steering wheel. I got out to board the bus that had just pulled into the station.

As I worked my way east, first into Ohio and down through Kentucky and then back up to Baltimore. I sometimes only stayed at one church for three nights before moving on to the next engagement, other times for only one night, and occasionally I would preach a week long crusade. I thought about Ellie as I traveled and often would daydream of what life would be like to be with her on a beautiful little farm in Missouri. But I was convinced it was just fantasy and would never be. I really did not have the faith that God would ever do something like that for me. I gradually worked south into Florida and finally headed back west after nearly two months on the road. Coming to my last church engagement in Mississippi, I decided to head north and visit my adopted family.

I was staying overnight in a motel after preaching that revival meeting and before going to bed I placed a call to Ellie’s folks. Her Dad answered the phone. As soon as he heard my voice he told me it was good to hear from me and that I had been missed. I was overwhelmed that he was calling me son. I found that a new experience and somehow very comforting. It was good to be part of family somewhere! I looked forward to being able to see the people from that little church and the Iron Lady as well. I found myself unable to study or read on that bus ride north to that little town where Ellie was waiting. I didn’t know that she had any idea that I was coming. Her father had decided to surprise the whole family with my arrival. I arrived at the final stop and there he was waiting in his pickup truck. As I stepped off the bus, I was rushed and given a bear hug that lifted me off the ground!

We headed back to the farm. As he drove he explained that since the family had been informed they were able to help Ellie start medical treatment and although it would not save her, she would possibly have a longer life. The drive to the farm was soon over and we pulled into the farm yard and parked. Ellie was out in a stock pen feeding some cattle, her brother was out in a corn field cultivating the crop while her mother was bending over the rows of vegetables in the garden and pulling some for the evening meal. When I had been there nearly two months earlier, it had been hot but now it was sweltering. It was one of those late August summer days that would melt butter and fry eggs on the sidewalks! I was glad to be where I could get out of my clothes and change into something lighter! We went into the kitchen and sat at the table. Ellie’s mother came in and stopped in a momentary confusion which suddenly was replaced by a half laugh half scream and she rushed me. I never could get used to this Missouri family that wore their hearts so close to the surface! They just could not contain or hide their real feelings! It somehow made me feel right at home.

Ellie’s brother was next and then she came in right behind him. As she came through the door from the screen porch they all yelled “Surprise!” She stopped in shock. And then she sat down in the nearest chair and began to cry. I can never understand women! They cry when they are happy and they smile at a guy when they are thinking of how to kick his butt for some infraction he committed! I finally understood through her sobs that she was happy to see me. Her brother was making faces at her as only brothers can do! Rolling his eyes at her and shaking his head in mock disgust.

I spent a very happy week there on the farm. It was a lot of hard labor, as there was hay to bale and get in the barn, and weeds were growing as only weeds can grow, while fences waited for mending and the milk parlor needed some electrical work. When I admitted that I knew how to do electrical work and assured my hosts I would not burn the barn down, I was drafted or forced enlisted into rewiring the barn. Oh, what fun! When I was asked if I needed help Ellie volunteered before her father could finish the sentence! We were well into the second week of my visit and one afternoon Ellie’s brother walked into the barn and announced he was going swimming and asked us if we wished to go along. Before I could even get an answer off, Ellie had dropped the roll of wire she was holding and was climbing down the ladder out of the hay loft yelling to wait for us as she needed to get her suit. Her brother was waiting at the big wood double doors and tossed a pair of swimming trunks to me. He laughed. “Wouldn’t want you running around with my sis in your birthday suit!” I was introduced to another fun family tradition, swimming to wash off the dust and chaff from working on a farm! I think the feeling of family was growing so much stronger than any cable to keep me there! The whole family loved each other, and supported each other. They all obviously were welcoming me into the family with open arms.

As for me? I was still struggling with self-esteem issues. I had grown up listening to my father criticize everything I did and often delivering the ultimate condemnation that he could muster. That was the statement “You are just like your G–D— mother! Hard-headed, and stubborn, and refusing to do things right!” That was only one of many condemnations hurled at me if I was not doing what my father wanted and to his most exacting demanding standards. Contrast that to a family that seemed to never voice a condemnation toward one another and often went out of their way to make me feel at home!

The guest bedroom began to be referred to as my room which made me feel even more like family rather than guest. There were other small incidents that drew me into the family. One afternoon, Ellie’s father realized I had trouble with my right hand. He asked what was wrong that I couldn’t do certain tasks with that hand and I spent about an hour and half at his urging talking about growing up in an extremely verbally abusive home with a continual threat of physical abuse sprinkled in. I admitted that staying with his family seemed so strange and foreign to me. That it was an amazing wonderful experience that I would always remember. He sat quietly with tears in his eyes. When I had finished talking, we sat together in a peaceful quiet time. Finally, he spoke.

“I grew up the same way son!” He was talking very matter of fact and his tone was soft, gentle, and not boisterous as he usually could be. “You can beat this thing!” he said. “I did, but the wounds take time to heal. Don’t expect them to ever leave your memory. They just don’t hurt any more after a while. It takes time to learn how to handle the memories and not let them make who you are. Try to understand that our dads grew up in a different time, it will help you to forgive him.”

I didn’t answer. He moved over and sat beside me on the plank I was seated on.

“I would have enjoyed helping you get started with Ellie! She is really attached to you! I don’t understand it myself. She is a lot like her mother and we were married after only two weeks of dating. Never thought when I saw her that first time that she would snare me for life in just two weeks and that I would enjoy it so much and want it to last forever!”

I finally told him that I was having a hard time knowing whether I was returning the same care and love for Ellie or if I was in love with her curves. I couldn’t believe that I had just confessed to Ellie’s father that I was very attracted to her appearance! Part of me was holding back, and screaming in my mind, “NO, NO, NO!” While another part of me wanted so much to be able to talk to someone who could be a father figure to me. And this man was as good of a father as I could ever hope to find!

There were other days of work in the sweltering August heat and another swim. That time Ellie’s brother left early leaving Ellie and I alone. Once she knew he was gone, she dove back in and came back up treading water out in the middle of the farm pond we were swimming in. When she came close to me I realized she had shed her bathing suit! There followed a serious discussion about what was right and what was allowed. This ended finally in her leaving the water and toweling off to walk back to the house alone leaving me to follow after I had dried myself and dressed. When I got back to the house Ellie’s family looked at me with thoughtful expressions and sidelong glances. Ellie was in her bedroom and did not come to the supper table. The conversation went as normal as usual on the surface but I felt an undercurrent of something different and it was uncomfortable to me. I went to my room and felt uneasy. There came a knock on the door and when I opened it, Ellie’s mother was standing there. There was no look of reproach, quite the contrary she had a certain warm welcoming look that was something I had not seen her direct toward me much during the time I had been there. The look made me feel special and cherished. I had assumed her strained look in the last weeks was due to her concern for her daughter.

After asking if we could talk and getting my assent, she came in and sat in the armchair while I sat on the bed. She explained that she had talked to Ellie alone and she was able to learn what had transpired at the pond. She had realized that Ellie thought that I had rejected her. I felt very uncomfortable talking to Ellie’s mother about this subject but I did manage to explain that I had felt compelled to obey my mother’s teachings even though I had not seen my mother in several years. She put me at ease and explained that she had already told her husband and he suggested we find a preacher so that we could be together for as long as we could before Ellie’s time to die. I was rather taken aback by the directness that this family addressed issues with.

I explained that I would have to settle my situation in my home base in Colorado and I needed some time to think and sort things out. She asked me if I wasn’t attracted to Ellie physically. And she asked me if I had any physical defect that would prevent me from being ‘married’. I again found myself in the most awkward of conversations. Again I was talking to a woman I did not know well yet, and discussing very personal feelings and issues about my future relationship with her daughter.

(I have often wondered what I should have done over the years. I often went over this whole period of time in my quiet times when looking back at my past. That situation has influenced and shaped every relationship I have had with women ever since. I have been since that time very open and outspoken about my feelings and my issues in a relationship. That family taught me it was better to put our feelings out in the open to be addressed in compassion and love rather than stuffing resentments and hurts and wrongs which then could break a family up later and make it nearly impossible to reconcile. I find that characteristic very rare in people I have met since that time!)

Ellie’s mother then asked me if I would want to marry Ellie. She explained that it would be difficult for me because Ellie would die eventually, most likely long before I died. This was back when the cure for AIDS was a distant dream and nowhere near reality yet. I told her I had no cash flow to handle a wedding as I was an itinerant preacher, not sure of any stable income and that income I had was dependent on the good will of the churches I ministered to. She said that wasn’t the question, whether I felt I had enough money, the question was would I want to marry her, did I want to marry her?

I sat there on the edge of the bed and pondered that question. The question for me was could I handle the emotional pain and the sense of loss that would definitely come if I did marry her? It was during that conversation that I truly realized she was going to die. I said as much to Ellie’s mother.

She sat there in the chair and gazed at me for a long time. Finally she spoke. “My husband wants her to be as happy as possible ‘til the end, ‘til the very end.” She said it while blinking back tears. “So I am giving you this!” and with that she took off her engagement ring leaving only her wedding band on her finger. “You go to Colorado and New Mexico and you forward your mail to here, and you get back here as soon as you can! I watch how you look at my daughter! You look at her like her father looks at me!” With that, she got up and quickly left the room.

I left for the bus station with Ellie’s father and brother both in the truck. We got out at the station and Ellie’s brother grabbed me and hugged me. “You get back here, brother! Sis needs you.”

Ellie’s father came around the front of the truck as I gathered my luggage. “I just want to tell you, I would have understood if you did, so I am very glad you didn’t because that would have hurt me! You know what I am talking about.”

I went ‘home’ to Colorado and told the postmaster in the little village where I had headquartered near Lee that I was going to be on an extended evangelistic tour in the Bible belt. I ordered my mail to be forwarded and turned the key to the little adobe house I rented back to the landlord. I sold my old International Scout, my Dodge Van and anything that I did not need to take with me. I reduced all my possessions to what I could carry and ship on Greyhound. And with that, I rode with my landlord into Trinidad and boarded a Greyhound bus that would take me back to Missouri. I visited friends I had made along the way and after a few stops I was back at that bus station waiting for Ellie’s family to pick me up.

Ellie’s brother showed up this time. He was so obviously glad to see me. That was an experience that I was beginning to like! Being greeted when I got off buses certainly felt wonderful! He stopped at a little diner and offered to buy lunch. While we sat and ate, he explained that his folks were waiting to see what I would do. They knew I could just run away from the situation and pawn that ring which was rather valuable, and they had agreed if I did, they would not retaliate or track me down. But they did not think I was going to do that.

Ellie’s brother explained that they were so sure I was going to return that they had created an apartment out of two rooms of the house. I was startled. He saw that. And then he got serious and told me, that Ellie was still well enough that no one would suspect she was sick, but she was going to be worse and probably sooner than later. He explained that things were done efficiently in his family. On the drive home he continued to mention that things were done efficiently in his family as if he was trying to prepare me. We arrived on the farm and he drove around the house to the back door. We got out and as I turned toward the house Ellie appeared in the doorway. I felt in my pocket for the ring her mother gave me and with all the bravery I could muster with heart pounding a hundred miles an hour, I climbed up the steps into the screen porch I knelt and asked her to marry me.

A few days later, there was a little wedding in that house with the pastor from that church I had preached in doing the honors. A friend of the family and his wife were witnesses. Ellie’s cousin stood as her maid of honor and her brother who was now going to be my brother in law stood as best man. She wore the same wedding dress as her mother had worn at her wedding and Ellie looked incredibly beautiful. Our honeymoon was actually a revival crusade and honeymoon down into Louisiana. The revival was in a church made up entirely of black people. The pastor was a very close friend I had met while traveling with Lee and his church almost smothered Ellie and I with attention and stuffed us with the best southern style cooking I have ever tasted! We were able to sight-see and also fellowship with people who did not have a mean bone in their bodies! For a week, we had bliss and did not have to think about a disease silently lurking in Ellie’s body that would eventually claim her life.

We went home to the farm and lived together in that two-room apartment in the back of that farmhouse surrounded by family that clearly loved us both and loved each other. We had several months of married life before the disease would start to be more obvious and begin to show it was there to stay. After awhile the illness caught up to Ellie and as a result, to me as well. I knew very little about AIDS. (I lived with a fear for quite a few years that I would get that terrible disease or had picked it up while being with Ellie.) We used the normal precautions, but it was much later that I learned that the AIDS virus was not prevented from transmitting by ordinary latex, whether condoms or surgical gloves. We had both given up our virginity when we were on the honeymoon, but it was a rare event if we were able to repeat that part of marriage after her illness started to go into full blown AIDS. During the early months of my life with this family, we were like any normal young married couple. I also enjoyed the increasing warmth and companionship of a loving family.

As Ellie’s condition worsened she requested that she not be put in a hospital or a rest home. Those were two of the choices for people who were terminally ill in that area. So the bedroom began to look more and more like a hospital room as Ellie continued to decline. She kept telling me nearly every day that she did not want to die in a rest home for the elderly, she wanted to be with her family and with me.

I took a trip one day to the Missouri University where Ellie had been raped. Ellie’s father loaned me his pickup and I took with me a letter from Ellie to that football player telling him she forgave him and that she was dying and that he had been her only partner. He was now aware he was HIV positive. I left him crying on the bleacher seats on the sideline of a football field and drove back to the farm.

I learned how to insert a catheter, how to set an IV, how to feed an invalid, how to make sure that she wouldn’t choke on food, and I learned about bedpans and pads and all the other issues that occur when a woman is no longer able to get out of bed. I learned a new definition of love that had not been in my dictionary before I met this family. I learned that I could not walk away from this woman who eventually became skin and bones and was so weak she could not sit up. But every time I would wash her off and gently clean her up after those bodily functions had soiled the pads and the bed sheet, I still saw that amazingly beautiful girl that had climbed out of a swimming hole one hot summer day and had dressed while I couldn’t take my eyes off her. We finally got to the day when she could hardly whisper anymore she was so weak. Her family gathered around as I and her mother held her in a sitting position while she said good bye. The Iron Lady stood and reached her hand past my shoulder to cradle the back of Ellie’s head and told her, “Go home, child. Your Heavenly Father is waiting for you.” The Iron Lady often used a certain religious terminology that I found a little out of place at times, but that time it did not bring my usual reaction!

Ellie turned her head painfully back and forth as she looked at each of us, and then she asked us all one by one if she could let go. We each in turn gave her permission to go ahead and go ‘home’. I was so fearful of this moment, so grieved and at the same time relieved that she would not suffer anymore that I could only nod when she turned to me. She took a very long deep breath and suddenly she lit up and seemed to glow, she was so happy. She exclaimed in somewhat of her old voice, “Oh Daddy! It is not just a Bible story! He’s real!” and she slumped into our arms and was gone.

People say I was used by Ellie’s family to give her happiness while she died with no regard to my needs or feelings. But I don’t think so. I had never had a gentlewoman put her most prized ring in my hand and send me across several states with the trust that I would return! I think God used all of us to comfort each other and to heal me of some very terrible childhood memories that had haunted my every step up until that time. To be sure! The memories still come back, but as Ellie’s father had said, they no longer hurt as much. For that, I am forever grateful to him and to God for bringing us together! In a way, I was Ellie’s caregiver and her family was my caregiver. She was carried into heaven during that time, and I was carried out of old terrible memories.

My short-lived brother in law was in Kuwait during Desert Storm and he returned to waste away until death took him too. Burning oil fields set afire by Sadam’s retreating troops got many of our boys in uniform sick.

Ellie’s parents passed away and I probably should have claimed Ellie’s share of the inheritance, but there were uncles of Ellie’s that were very good men, and I handed my house keys and the vehicle keys to them, gave them each a hug and walked away. I closed the door on that part of my life when the Iron Lady became an empty clay shell and she too found herself in a real place which was not just a Bible story for her grandchildren. She is also resting in perfect Peace. I miss my brother in law almost as much as I missed Ellie.

I married a woman in New Mexico a few years later, and realized that Ellie’s memory did not threaten the marriage. I was very afraid it would at first! Rather, the memory helped me start working on being a better husband. That is a task that I still have not finished and goes on to this day. That wife went through a gang rape in the northern Chama valley where we were building a church mission. She also passed away and I am now married to a woman (Patti) that somehow is been able to make my heart do flip flops and pitter patters no matter how terrible she thinks she looks! She has had more than her share of illnesses. Being 38 years in a wheelchair takes its toll. There is one similarity between Ellie and Patti that I really like! Both of them have a heart that shines through and makes them forever beautiful. Patti never seems to understand that, so she is always faithful to apply her makeup even if she is in the hospital and she tells me she wants to be beautiful for me. I just can’t ever understand women! You know? I don’t know what words to use to tell her that she is so beautiful she moves my heart.

Ellie’s family taught me faithfulness and loyalty like my mother did. Because they lived it out with me, they affirmed all the wisdom my mother shared with me. I was able to deal with some terrible childhood memories and it was a safe haven to do so. The hole in my heart that was there when Ellie died was filled later when I remarried in New Mexico. I discovered that caregiving was as natural for me as any other occupation that I could ever indulge in. I found I was fulfilled when I was giving to people in such a way that they were truly cared for. I also found that no matter how terrible the old memories were, that they could no longer erase that sense of well-being and confidence I had by the work I did to give real care to those who needed it. That does wonders for self-esteem. Even if we do burn ourselves out in the doing of it!

Gertan / Shutterstock.com

I fell in a manhole but that is not the whole story

I fell in a manhole but that is not the whole story

I fell through an open unsecured manhole on July 27, 2014, and that began a year plus a long time of dealing with chronic back pain, visits to doctors and a Presbyterian Pain and Spine Clinic. Complicating matters is the fact that I am my wife’s caregiver as well as her husband. I once was able to pick up 180 pounds and swing it over my shoulder and walk up a ladder to a rooftop and lay a roof. Or I could shoulder my end of a heavy beam and put it in place overhead with the use of work platforms or scaffold. Lifting my wife was no problem and setting her in the van seat or in her chair from bath or bed. Now I couldn’t tie my shoes without being in intense pain. Twisting and turning and bending without effort or pain like I used to do were all taken away when I fell through that manhole.

The accident happened at a City of Albuquerque recycling site, and when I first notified the city through email, it appeared they might settle amicably, but such was not to be the case and they said I didn’t notify them properly. This was after I had emailed the mayor and entire city council informing them of the fact and after I had been treated at the site by Albuquerque Fire Department techs and medics and a city police officer came and checked out the incident. But that is typical government response to circle the wagons and try to avoid liability. I hired a lawyer to handle that end and have concentrated on getting well.

My treatment started with the ambulance crew who determined that at least I had not broken anything as far as they could tell. But I had a furious painful tingling spreading down through my lower legs and back. They advised I needed to go to the emergency room at the hospital. I didn’t think it was so serious at first. I just thought that the tingling would subside because it might be shock and the hard impact jarred me a little more than I was used to. But that proved to not be the case. I did go to the ER and found I had dislocated a vertebra. I knew that was not good. Nerves can be pinched and even damaged or crushed or cut when that happens. I got worried. I went home from the emergency room and found that thieves had stolen tools while I was in the ER and my van was parked in the hospital parking lot, and that too is normal for Albuquerque anymore. Kind of makes it depressing to try and make a living but it was a thief that stole the manhole cover for the scrap value of the metal, and a thief was invariably hanging around any given parking lot to see who left their car in a vulnerable place.

I went to the Presbyterian Pain and Spine Clinic on a referral from my PCP and I began treatment there. I found that the heavy narcotic type pain medications left me feeling totally doped like a zombie so I opted for non-opiate pain control to try to retain some degree of function. I needed to be able to care for my wife when she had her down times. Those are frequent as her Migraines hit and drive her to bed. In addition, she is in a wheelchair and although very self-sufficient and independent there are still times when she needs a lot of help if she is ill.

The recommended treatment at the pain and pine clinic was to have epidural injections and to have certain exercises in the pool to try and heal over time with the injections meant to buffer the nerves in my spine to reduce the pain while I recovered. I was also on anti-spasm meds and an anti-inflammatory med to keep the swelling down. It just didn’t work. For months, the pain continued to increase and get more stressful and cause me more and more restrictions in movements. I got to the point where walking across a parking lot was hard to bear and long walks were entirely out of the question. That for someone who loves long hikes and snowshoe hikes in winter is a terrible sentence.

After 11 months had passed, I found myself back in the doctors office and being referred to a surgeon. We had a conference after another MRI was done and the damage was clear in my spine. It came down in a nice smooth line until L5 Vertebra which appeared to be stepped out of alignment just a little. But that little was a lot judging from the excruciating pain that was then radiating down my back and into my legs. I knew that regardless of what else happened, if I did not choose surgery I would have to find something soon. Pain can become unbearable and overwhelming and dominate a person’s every waking moment which is what was happening to me.

I had the surgery on October 8 of this year and it proved to be challenging for the surgeons. I lost 700 cc’s of blood and needed transfusions to restore my blood levels to close to normal. Things were going well otherwise. Due to the blood loss and the doctors fear of blood clots that could form I was kept well past the normal discharge time of the next day. I was released the following Monday evening instead.

A good friend took me home to ease the stress on my wife and I settled in. It was wonderful to be home and I was able to spoil the family dog and enjoy my wife’s amazing cooking and everything was right with the world. I had intense pain from the surgical incision but that throbbing burning back and leg pain from before the surgery were gone. I could have hugged that surgeon!

I enjoyed my supper and went to bed early as I was tired from all the stress done to my body in the process of surgery and the after effects. Early in the morning at about 4:00 AM I got up at my usual time and went to the restroom and then sat down at the table in the dining room to write. I felt a little nauseous so I decided to lay back down. At 8:30 the hospital called and checked up on my progress. I realized my right side had gone numb. I had a stroke.

I was sent for in an ambulance by the nurse who called to check my status and I found myself in the cardiac unit back in the hospital. I felt defeated and depressed. But it didn’t last long. I have always preferred Presbyterian to other health care providers and my choice proved to be a good one. I was treated with blood thinners and scanned for any other clots that might have formed and the incident that had happened was checked out thoroughly.

This time, I was not discharged home but transferred to a rehab hospital where I am now. I found several things have helped me recover some of my mobility already. First of all, I am active and I do not like nor do I sit still much. I like to be doing things. Perhaps that is why I am still working a craftsman’s trade instead of sitting in some desk chair somewhere. I also do not smoke nor drink alcohol, which makes my body assimilate more oxygen and am healthier overall, so my healing will not be so difficult. Next and just as important, I have to watch what I feed my wife and ensure she has healthy diets so I applied the same eating rules to myself. By doing those three things, I know from my time here in the rehab hospital with people also being treated who did not live healthy lifestyles, that I have a higher than normal chance of full recovery. Which is my fervent hope and prayer.

Doctors and nurses say I am very lucky, that I could have easily died. I don’t believe in luck, I am a Christian, I believe that I was blessed.

One of the greatest blessings was the compassionate and dedicated care provided by the nursing staff at Presbyterian Hospital downtown, Albuquerque. Another thing that was a blessing was the people who visited from church and good friends who took time off from work to come and visit. And I believe the greatest blessing was the various doctors who were professional and also very attentive to what I was feeling and through their careful treatment of my health issues and surgery have contributed to a better recovery. In spite of the complications, I am beginning to feel more of my right side and even some small amount of improvement in hand grip and mobility is happening. My doctor in the rehab hospital adjusted meds and using a new treatment brought some symptoms to a stop. I’m blessed!

Caregiver in a hospital, new experience

Caregiver in a hospital, new experience

I fell through an unsecured manhole last summer and severely damaged my back. I had surgery on the morning of October 8th and developed complications and had a stroke early Tuesday morning.

I will be writing of a whole new set of caregiving experiences where I will be rehabbing my damaged nervous system while still caregiving for my wife. For the Christians on this site, I would definitely appreciate your prayers.

Tonight I am a little out of sorts and still in the hospital so my next article will be a few weeks away. But it will come, I am down for a little bit but not out of the fight yet.

Extreme caregiving, drug rehab counselor, part 2

Extreme caregiving, drug rehab counselor, part 2

Caring for and helping drug addicts and alcoholics can take a terrible toll on the family. We often do not realize the extent of the damage in a family due to drug or alcohol abuse, nor do we see the huge impact it makes on mental health.

I was recently arrived in Albuquerque in 2001 and working part-time as well as taking care of a close friend who was terminally ill with cancer. My first attempt to re-enter the workforce full-time was delayed or postponed as my friend’s cancer continued to spread and develop new tumors and growth. My friend was trying to keep a certain amount of normalcy alive in his family and friends relations, but in many ways the whole existence punctuated with all the medical emergencies and the increasing need for more and more intensive care were taking a toll on me.

A deacon at a church where I was Singles Ministry Director asked me to join him and attend a Promise Keepers event at the local indoor stadium. I was rather stressed and very exhausted and accepted the invitation even though in order to attend without paying an admission fee, I would have to work as an usher.

Thus, it was that I found myself in the lobby/foyer area in the building housing The Pit, our university basketball stadium. I was passing out program schedules and directing people to the various sections they needed to be in when a very well-dressed man with two teenage boys walked up to me and asked a question.

“Do you remember me?” He stood there in front of me and I could not remember him at all. I shook my head. No, I did not remember him at all. He said, “Let me refresh your memory!”

He began to talk and slowly I came to the realization that this man standing in front of me was not the same person emotionally or even physically because he was now free of drug addiction. The transformation was truly amazing. He stood in front of me with a crisp white shirt very neatly pressed and wearing a red tie. His slacks were a cut above the ordinary and were also neatly pressed and creased. When I looked at him from head to toe, his shoes were noticeable for the very bright mirror polish and shine. Overall, he was the epitome of the successful man’s image. If clothes and dress made the man, he was certainly made up in style!

He shared his story, and with his son’s and some people clustered around, he reminded me of how we had met. I was working in Espanola New Mexico at the time he came into my life for a brief six-month span. While in that area and working for various water well companies, I also was deeply committed to reaching drug addicts before it was too late for them. Espanola at that time had the dubious honor of holding a drug addict record. Espanola had the highest per capita percentage of Heroin addicts in the world. Not something you would want to put on a city’s web page!

The man who had come to me and asked if I remembered him was a man who had first been assigned to a Faith-based Christian Rehab Center in Espanola administered by a local church.

He had come in with his hair nearly down to his ankles and his beard had obviously not been trimmed or washed in a long time. His body odor was so strong that I felt like I was standing over an open sewer to be next to him. He was not truly coherent nor able to carry on a normal conversation, such was the toll that the addiction had taken on him.He was sentenced to one year in the rehab facility where I was working as a result of armed robberies he had committed. Now, I remembered him!

When he had come into the home, we first had to clean him up. He was so damaged by the drug abuse he had indulged in that it was much like bathing a paraplegic. The Judge who had sentenced the man to our rehab center was hoping that somehow something would happen that would remove this man from the streets and addictions and restore him to his family. That was a tall order for us to fill on the Judge’s behalf.

So, bathed and shaved and with his hair cut, Marvin sat on the edge of an iron bedstead with a utility grade mattress. I sat down with him and explained some of the basic rules of the home. He did not seem to hear me nor pay attention. I decided to work with him and informed my fellow counselors I would be his mentor/counselor.

We followed certain rules and modes to rehab addicts and alcoholics. We realized very quickly that drugs can cripple and also cause serious brain damage. We also knew that we had to set house rules and regulations to establish respect for law and order and also to set a routine that was regular. This is so essential in drug rehab. Without the standards, addicts do not have any way to measure progress, but with the rules, as they progress in recovery their violations and infractions decrease until the day comes when they are living a ordered responsible live again. Given that drugs do damage the nervous system and the brain, there are a percentage of people we could not really help except to get them off the drugs and at least living clean. People think that drug overdoses always cause death. Not true, sometimes drug abuse leaves the user disabled physically or mentally and forever after handicapped, as to what jobs or tasks they can perform. It is often heartbreaking work to pour many days of effort into someone’s life only to see them fall back into the old filth as soon as they are on the street again. My heart goes out to parents and families of addicts, as there is sometimes no remedy other than a miracle that will undo the damage of drug abuse.

The first one to two weeks of working with a Heroin addict is spent sitting with and monitoring the patient until they have successfully broken the addiction cycle. It is especially difficult for Heroin users because they go through an agonizing withdrawal process. They suffer physical pain and I have never seen any of those I worked with able to eat while on withdrawal. We did not substitute Antibuse for Heroin. For all practical purposes, it is merely the substitution of one drug over the other. The addict is still an addict. Our program took people from addiction to completely clean and ready to mix with society as a normal and functioning human. It is extremely hard to deal with life when there is a huge burden of addiction coloring every action and behavior and influencing every decision the addict makes.

In the drug culture, there is one constant. That is whatever made one high last year is probably not strong enough to have the same effect this year. So while working with the men who came into the home, I encountered people who had sniffed glue or paint, huffed gasoline or paint thinners and tried any manner of other things that were on the shelves in stores. Hairspray was a favorite of many people and just one example of the way a drug addict would try anything to catch that next high. Some of the most difficult and heartbreaking situations were those involving people who had started using drugs as a way to ease the pain of a past traumatic event. There might have been an accident which caused constant pain, or a family member died and in a few cases a client would be feeling a deep sense of guilt because the addict had hurt of killed someone else in an accident or fit of rage. Included in the number of clients in the home were gang members who a Judge might have felt hope for.

Dealing with drug addicts is not for the squeamish or faint of heart. It is intense and stressful. When a family deals with a family member who is an addict, they will often pass the addict off to society to let someone else deal with what they cannot handle nor have resources for.

Marvin went through a typical withdrawal period. At one point a few days after we had admitted him, I went to get a bowl of stew in the kitchen and returned to find him using the headboard from that iron bed frame to batter a hole through the wall to escape in order to find a fix. The first week I worked with him, I may have gotten as much as seven hours of sleep for the entire week. I slept or tried to sleep in the room with him in another bunk. This was so I could monitor his activity and make sure he did not hurt himself.

Over the space of six months I taught him how to take care of himself, to shave and to do some writing. I was eventually able to take him through getting his GED as he had never graduated High School. He tested me constantly, but addicts respect firmness and consistency and once you give in, they no longer will respect you. Parents, remember this! It especially applies to teenagers. Once we have lost the respect of an addict, we can very seldom recover it.

In the process of working with Marvin, I had taken him through our program step by step, allowing more privileges as he matured into a drug-free lifestyle One day he walked out the front door of the Rehab home a free man and drug-free. We had wrestled a few times as I had struggled to keep him from hurting himself. When he was well enough I taught him how to use a set of simple carpenters tools and repair the damage to his room. Often I would teach him through this kind of process that his decisions and actions would always bring consequences. This was another point that was important to teach to the addicts. All behavior has a consequence whether good or bad. Thus, we would require restitution and reparations from those who stole or damaged property, and for some, they would find themselves cleaning yards for elderly and disabled in community service. But we knew we needed to get this point across. No one can be an addict and not hurt everyone else who are close to them.

I moved on to other towns, worked in construction and often was involved with foster care of teen boys and also being a pastor. I forgot Marvin. In foster caregiving, I had a 14-year-old boy in my custody until his mother moved her family to Australia. He had been sniffing propane and gasoline, and it soon developed serious damage to his nervous system. When digging into his past to find the reason for him starting his death spiral into addiction, I found that he was being seriously and violently abused by his mother’s boyfriend. Unfortunately, the boy had brain damage as a result of the beatings and it was a miracle he was alive. He is doing well for himself now, but he and another boy I cared for at the same time had to be removed from their homes until the boyfriends were removed. But the damage had been done, and in the first boy’s case, a permanent disability was the result of the abuse.

In each of these cases, we were striving for as little dependence on medications as possible. There were legitimate needs of course and those were taken care of, but as we worked with professionals, we were able to bring people to the place where the mood and mind altering drugs were not needed for a person to be healthy. It takes time. It does not happen overnight. In most cases, we were given the task of reclaiming a destroyed life because the family members gave up too soon. So we would work with clients and patients until they were able to function well without added medications or continual support. The fact was, it reestablished the clients self-respect and self-esteem if they were able to function without the aid of narcotics. They would realize they could stand and although in baby steps at first, they would start stepping out to live life on their own.

Drug addicts can be reached and rehabbed. Insofar as caregiving is concerned, I would venture to say at least one third of the members of this site are aware of a friend or family member bing destroyed by drugs. Drug addiction and alcohol abuse will destroy the addicts health. And the addict often requires the services of a caregiver in their old age. We do not see all the damage when we look at physical appearance. But it is there and it will follow a family or family member all their life.

Many of the routines we use to care for patients with COPD, Emphysema, kidney failure, UTI’s and stroke victims are needed when an addic’s health fails. In terms of finance, families are even harder hit than normal caregiving situations, because addicts will steal and they will hurt people when desperate for a fix..

I know this is not the normal caregiving article I write. I do know that treating and caring for addicts is a huge hit to a family and most people don’t get enough help or any help that is needed to bring someone out and break them free from this horrible life style.

Marvin, standing there in front of me in that stadium was and is now a bank officer. IMAGINE THAT! He had been convicted of armed robbery of banks and quick stop stores, and now he a bank officer in Albuquerque. Completely transformed and completely new with sons by his side that he had not seen until he was clean and went home for the first time in 17 years. Needing a pick up after caring for a close friend as he died, this could not have been better timed!

I want to leave you with one thought. Your efforts as a caregiver is not wasted. Every act of love and dedication and devotion and loyal care is noted and watched by someone. It is to your credit even when you stand alone, that caring for another who cannot care for themselves is a wondrful thing. And even when we do not see what we want come to pass, and even when our patient dies, we still can know that we did the right and good thing. And every once in a while we catch a glimpse of the reason why we do this. All my reasons have names of the people I cared for attached to them. Nobody can take that kind of truth away from you. Keep on going and hold your head up.

Extreme caregiver, drug rehab counselor

Extreme caregiver, drug rehab counselor

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I started doing caregiving for a select few people while I lived in Colorado. My first client was Harold, a Korean War Vet who lost his legs when an artillery round went off near him in combat. Harold was a man wracked with pain, often unable to sleep due to the ongoing issues with wounds and the problems with prosthetics that did not fit properly. I often considered him to be a victim of the VA and not their patient. His care was dismal to put it mildly.

Harold’s pain control method was to use alcohol. It was not hard to tell when he was feeling good and when the pain was getting unbearable. The days his pain was increasing would be days he increased his alcohol intake to compensate.

During the time I cared for him, my days were spent changing bandages and dressings and adjusting the pads in his prosthetic legs in an attempt to make the act of walking more pain-free for him. It didn’t work. We never could find the good fit, and often he would just resign himself to sitting in his wheelchair. I had quite a few people in my caregiving days that were like Harold. I just could not find a way to make them truly comfortable.

But a group that truly caused me to truly feel inadequate at times was those few people I cared for who had damaged their own health through drug addiction. I had no idea sometimes how to make the proper presentation of a message of hope and motivation to help the patient see the benefit of quitting. I found that for many of the people in the grip of drug addiction, some early event in life had caused a serious shock or trauma bringing on PTSD. The problem was that if I had no idea what had happened or even if something had happened, I could not effectively minister to the person.

I encountered many of the people I worked with through my work as a pastor and evangelist. I often found when I was called to a church even in small prairie towns that I assumed would be drug-free that there was invariably the few people who were not coping with life and had lost their way sinking into drug addiction or alcohol. Of these cases I was involved with, the children who I provided foster care for were the most vulnerable and the most wounded. I often found that either a severe injury or illness, a loss of loved one or an emotional trauma would be found to be the issue that started the child’s decline into drug addiction or alcoholism. In a few cases, sexual abuse was the factor that had triggered the downhill slide.

Victims of childhood sexual abuse were especially difficult to work with for several reasons. First, if the person requiring care was unable to differentiate between love and sex, the patient would often take a rejection of their sexual advances as a rejection of them. I would have to first try to convey the understanding that real familial love and relationships based on healthy love is not always a sexual one. For a child who has grown up knowing only the wrong kind of relationship, this meant a complete relearning of relationships. Often the person would be tempted to just escape back to that drug induced stupor that numbed everything and wiped memories away at least for awhile. The problem is of course that a person cannot stay high and drunk continually. There is that inevitable moment when one is passed out or waking up with a hangover or the beginnings of withdrawal or coming down.

I was involved with a Camp program run by an independent Bible Church Leader in Southeastern Colorado in the early 80’s and his method was to establish a structure to the day, accountability and responsibility including chores and tasks that would help a child reintegrate into normal society. He would point out, however, that most of what we see around us is not normal society as there are a huge number of dysfunctional families out there. I have since found that to be very true, unfortunately.
Some things that worked extremely well to bring people out and help them heal were outdoor activities such as boating, canoeing, fishing, hiking etc. Another extremely effective tool for rehab was music. For some individuals, artwork was a huge release of the issues that were driving the addict or alcoholic.
As the years marched by, I found that there were an increasing number of sexual abuse survivors and more of those people who had been physically abused. I cannot help but think that with all the so-called new freedoms we have had that we have also had an increase in walking wounded members of our society.

The sexual abuse victims often were the most difficult to reach. They were usually unable or unwilling to trust anyone and often would make matters much worse for themselves by projecting the actual abuse that had occurred in the past on whoever they were trying to exclude in their present. Thus, a childhood rape victim would repeatedly accuse more people of rape. This was so commonplace that I almost came to expect it to continue until I could bring about a resolution of the original problem.
In one church in a major western city where I was Singles Director, I had encountered 189 prostitutes and all of them were addicts and/or alcoholics.

Many of the people in that group came sporadically to church on Sundays, and some were ordered to attend a fellowship as part of their release by a judge who was hoping that somehow they would find a way out of the mess they were in. For the addict who had gotten sucked in simply by seeking a thrill, I often was able to effectively move them from addiction to recovery just by helping them see the advantage of pushing through to recovery and reintegrating in society. Many knew they had lost the respect of family and friends and were seeking restoration back into a good relationship with society.

Two groups were much more difficult to reintegrate back into society. One was the wounded vets who had come back from combat still fighting the war in their mind, and the other were those people who had been abused. All efforts to rehab either of those two would usually fail unless I was able to reach back in their past and bring them through a healing from the event that had triggered their addiction in the first place. For some, that process was just too painful, and the best efforts of pastors, counselors, and social workers failed. Especially difficult were those who had brought the issue on themselves. One area where I found it to be very difficult to restore someone to normalcy were those women who had an abortion. Another group was those adults who had been the abuser of a child or spouse. And in one case I was dealing with a person who had committed manslaughter through a drunk driving accident where the other driver was killed. No amount of help would suffice to set such people free until first they were led through a process that would help them forgive themselves.

If the self-forgiveness was not there, recovery was not there either. Faith-based programs differ from the secular government programs in this area. Spiritual and emotional healing are part of faith-based programs and integral to them, whereas many government-run programs have a formula based process that is rigid and structured and in being so, excludes a certain number of patients from recovery. The evidence of this difference is seen in the central New Mexico area in the Heroin recovery programs operated by the government. Without the person truly brought through the healing process, it is necessary to substitute another drug for the heroin, and yet the addict is still taking a drug. No real recovery has been effected.

However, If a person has been led through a recovery and healing from the original event or trauma that caused the addiction, there is often a full recovery. The only people who do not make it through are those who cannot bring themselves to break free from the unforgiveness and the grip of the past. They are the most difficult of all to deal with. Without breaking the hold of the past, the person does not move on and stagnates.

The Song asks “What’s Love got to do with It?” EVERYTHING!!

The Song asks “What’s Love got to do with It?” EVERYTHING!!

 

We are ultimately motivated by love. Caregivers might say it is duty that demands they take care of family members, but ultimately it is love. Sometimes people will minimize the efforts we make. Some will do a comparison between us and them. But that is neither fair nor right.  Caregivers give their all and often sacrifice themselves for their patient. Very few people outside of our group understand that or comprehend that.

Consider that patients sometimes are the most verbally abusive of any group, especially when pain levels are high and stress is oozing out of the people in every encounter.

What does Love got to do with it? For us, it is everything. ALWAYS. We may lose every struggle, and fall under the crushing weight of bills, or be exhausted because of staying up all night, but as long as my wife is my sweetheart, my girlfriend, my honey bunch, my sexy hot chick on her blue spoked wheels on her chair, which prompted her son to call her Hot wheels (affectionately), we can handle anything.

So she might be bed for days with more decubitus ulcers from pressure sores gone wild, or she might be in the hospital with a fever making her unsure of where she is and seeing or hearing things that are not there, but as long as she is loved, and she knows it, she will be okay.

Things are not always perfect. Sometimes we have our spats, and our more difficult times might include a more strenuous argument. But we know who is in love. US. I cannot even think that our way is right for everyone. But, I am positive everyone has a love language. Things that will make each person feel loved and wanted.

This is the key. We have many people who need us in our lives. If you have a job, your boss needs you to show up at a certain time. Your efforts and your talents are needed to finish work for your boss. You are needed by creditors to pay your bills. You are needed when chores need to be done. But that is not the same as being wanted.

On one very trying period of time, my wife was beside me in bed and at 4:30 in the morning she woke me to tell me that she was not feeling good. When I checked her temperature she was already running a temperature of 102.5 and it was rising. She was soon not quite in her right mind, and she started seeing and feeling things that were not reality. I got her into our Dodge van which was not running good, because of a foolish neighbor who stole our gasoline and left debris in the tank causing engine trouble. My mechanical ability was needed to get the van running. My driving was needed to drive her to the hospital quickly, but my presence was wanted when we got there. Not that I was needed to take care of her, because the doctors and nurses began to treat her for Kidney failure, but I was wanted for her feeling secure. Loved. Not alone. Cared for and cared about. After the first day, I went home and slept for a long time. It was dark again when my phone ringing woke me up and I listened in a groggy half awake state while a nurse spoke in urgent tones, telling me that my wife was hysterical, that she would not sleep, that they had tried everything to get her to sleep, but she was babbling and wouldn’t sit still. She was still running a fever and she was asking for me. I quickly poured a cup of day old strong black coffee and struggled to wake up, and as quickly as I could, I got back to the hospital.

When I got to the room, a nurse spoke to me just before I went into my wife’s room and explained they had given her sleeping pills, sedation and had tried several other things including milk and other things to induce sleep. The nurse explained that my wife needed to sleep in order to get rest and they had not seen her sleep for the entire day and half she was there.

I walked in the room and my wife started to laugh softly and to smile and she changed immediately. A young intern and a nurse were standing there and the intern, observing her immediate calming down, shook his head and mouthed the word, Wow. I sat beside her bed and talked to her, but she still would not go to sleep. I held her hand and even sang to her. She still was not completely calm and was still not sleeping. A nurse came in and tugged my sleeve and whispered me to come into the hall. I walked out into the hall and immediately the nurse asked what worked at home for us. I told her there were times I had to hold her.

The nurse ordered me to get in bed with her. We are talking about a narrow bed in a hospital. We are not big people, but that bed is not that big. Good thing it had those safety rails. I laid down beside her and she fell asleep immediately. One moment she was telling me how glad she was I was there, and before she drew a second breath she was asleep. The nurse just smiled and walked out turning the lights out as she went out the door.

I spent a week going to the hospital to be with her. I sat beside her during the day and wrote or sketched in my drawing pad. I did some paperwork and made phone calls, but as long as I was there she was calm. I am sure that the high fevers had a lot to do with her panic and hysteria, but the situation also proved that I was wanted. Not just needed.

We lose sight of that from time to time as we are caregiving. We get stressed and are juggling schedules, dealing with meds and worrying over many things, and then we can say things that are not kind, or thoughtful or loving.

I have found that if I continue to court my wife, she is usually very loving in return. It is not hard to love someone. Face it, the reason why you are caring for your loved one, is because you love them. In my case, I am caring for my wife, but we are all there in the caregivers seat because we care about the patient. We may be caring for a child, a parent or another relative or even a friend. But we are doing what we do because we do care. Hey! It’s okay to take a bow here.

When I say to continue to love the patient, I mean if you are married, act married. My wife may be in bed for days, but she will still get the surprise flowers from time to time. She will get her favorite snacks, and she will get her compliments. Some of my methods I learned from Dr. Kevin Lehman and Dr. Randy Carlson. I listened to them when they hosted a radio program years ago when they were broadcasting on a local Christian station. One of the most valuable works they produced was a book titled ‘Sex begins in the Kitchen’. As you can probably assume, it isn’t talking about the normal concept of sex. The book is presenting a beautiful picture of loving one another all day. And just as important, how we treat one another during the day determines how we are treated too.

I think the biggest problem we deal with is that when the medical issues overwhelm us, we soon have our whole world revolving around those issues. That can make our relations shift from family to almost a professional situation, as nurse and patient.

I have found that when I am dealing with a patient who is also family, that everyone does much better when the relationship is preserved. It is easy to let the relationship slip. But it is not good to do so. Because as countless studies have shown, people heal better and faster when they are secure in the love of family and spouse. It is a given. And besides that, it is just so much better for all concerned.

So we have date nights as much as we can. If my sweetheart is bedbound, then we have our dinner on the bed with the blankets as a table cloth. She gets breakfast in bed a lot. Even though she is able to get up much of the time. It makes it special. She gets those words of compliment and praise for her appearance and her talents, especially when she is unable to get out of bed and move about. Depression is a powerful enemy, but it is not as hard to deal with if a positive reaction is manifested from us.

Pain can make people short tempered and very verbally abusive at times. Understand that it is the pain talking, not your loved one. The saying that people have to vent is an absolute in our situations. But vent safely. And help each other direct it safely. Verbal abuse of the other person from either patient or caregiver is just going to break a heart eventually.

I find it easy to compliment my honey. She has many good attributes that show through even on the worse of days. But if you can’t find a good thing to say, May I suggest you think back to how you became family in the first place? The qualities that your patient had are what drew you to them. And if the truth be told, those qualities are still true for you. So think on those things. I actually have a favorite Bible passage for that thought. Philippians Chapter 4, verse 8 “Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable- if there is any moral excellence and if there is any praise-dwell on these things. That is a good formula to avoid sinking into the lower levels of thinking such as discouragement, depression and negative talk and communication.

One final thought to take away from this, your patient is not personified in the bandages, the health issues or the wounds. Your patient is a person with mind and heart and desires and passions just like you. Love them for who they truly are. If you love the heart of another person and the attitude and the thinking, their physical appearance will matter far less than their mental and spiritual self. You would want to be loved and wanted for what is in your heart and soul. So if you love your patient that way, you will taste the real flavor of real committed relationship which is so far better than the shallow flaky stuff of the many selfish people in this world. Think about it and try it. It may take time, but real love does conquer a world of hurt and rejection. And above all be patient and let love have its perfect work.

Art as Therapy

Art as Therapy

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This is my favorite painting. It is titled After the Storm. It did not load to a resolution that is clean and sharp, but it is one of my works I did when the feeling in my fingertips began to return. I certainly had been through a storm in life. First I grew up in a home where verbal and physical abuse was the norm, not the exception. Then I started working in occupations that involved toxic chemicals and at times I was in dangerous construction jobs. As if that were not enough, my ancestors had a history of extreme blood pressure. That medical issue can and did trigger strokes in my mid-twenties and into my thirties that caused me to become very familiar with doctors and specialists.

It seemed like I was always watching other guys my age working in cherry jobs, making money and establishing careers while I struggled to find finances to buy meds for heart and blood pressure and keep the utilities on and the rent paid. I developed an affinity for people with chronic illnesses. I soon found that I could make a difference for at least one person at a time if I was a caregiver for people who were struggling. I could understand them, even if I did not have the same problem, I knew a lot of the frustrations and the fears that dog the people who are beat down by disease or disability. I could relate.

In the world where success is measured in money and cars and home value, I was beginning to learn real success is measured by a different rule. Real success was measured in my new lifestyle by whether I could help people understand how to cope with the issues they had in health or disabilities. In the late 80’s I was working for a well-driller in the North Central areas of New Mexico. On the job, I was exposed to powerful plastic solvent cement. I had already had several episodes with heart and blood pressure problems, but nothing compared to or prepared me for what I was about to experience.

I had been working on a community water system in a small mountain top village. Crawling back and forth in narrow and low ceiling tunnels running from access holes or manholes. I had a fan moving air through my work area, but it air locked at some point during the fateful day. I was working at a steady pace, cutting and fitting plastic water pipe and cementing it together with PVC solvent cement.At some point, I passed out, and I woke up almost seven full days later in an ICU in UNM Hospital in Albuquerque. I was there for quite some time and after extensive tests, it was decided by doctors that I had been overcome by the solvent fumes and that I was now doomed to be partially paralyzed.

Nutritionists taught me what to eat and how to use my diet to cleanse my body of toxins, and I also was sent to the Therapists to try and restore function and feeling in my hands and feet and legs and arms. To this day, my right side is weaker than my left, and when you consider that I am right handed and that was once my strong side, it can give you some idea of the way I had come down.

On one particular morning, the therapists came into the room with a sketch pad and a handful of pencils. She laid them on the table in front of me and told me to try drawing. I could restore some of my lost eye-hand coordination. I was very interested in giving it a try. I had started sketching when I was just six years old. Over the years, it had become my escape and my relaxer, my way of being able to meditate and think through issues and problems I might be dealing with. My hands and fingers were doing the sketch and my mind was processing the events and things I needed to deal with. Needless to say, first attempts are not too good when nerves are non-responsive and my hand felt like a mitten was on it preventing feeling. I was frustrated, but I kept at it. I had once turned out prize-winning artwork in school and competitions, and now it was a struggle to do anything. I also tried my hand at playing musical instruments again. Didn’t  do so well there. But in the area of art, I had little breakthroughs that were huge for me. I was eventually showing in galleries and in various shows and I was even able to make some money which helped with medical bills.

It did not take long for me to see the effect art therapy had on patients. I introduced old men who had been rough and tough to a world of sketching and painting and at first they might balk at the idea, soon they were deeply involved in trying new techniques and mediums. In my own case, I realized I could track my recovery by how my artwork was progressing. And as it worked for me, I found it particularly useful for stroke and brain injury victims. I could write a long discussion about how to set up an easel and or painting area, but it is better to try it first with your patient. It is actually something you can do together if you like to do artwork yourself. Try something small and easy at first. Biting off too big a task will cause frustration and feelings of failure for either you or your patient. Many times what I considered my simpler work was the pieces that sold for the most money in shows or galleries.

My wife is wheelchair bound and disabled due to a motorcycle accident. She did not quit on life at age seventeen laying in bed with lower body paralyzed but made up her mind to do something positive with her life. She went to college and earned a degree in Education with three endorsements. She then spent the majority of her career teaching school children. One of her favorite classes to teach is art.

I watched her take a special needs group of boys who were all diagnosed with ADD or ADHD and teach them how to work in clay.  Many of the boys in that group had never sat still for more than a few minutes their entire life. She had them all quiet and focused and doing a piece of sculpture for had peace among 32 boys for over three hours. The parents considered her a miracle worker.

It is not difficult to understand how it could be that those boys were so compliant. Artwork demands most of the brain function to be available. The combination of the various tasks helps the memory and cognitive and analytical and emotions to all work together to produce an image or play music or make a piece of art. It is very good therapy for people who have had a stroke. It can be frustrating, however, so it needs to be slowly introduced at a steady and slow pace at first until a balance is achieved. Sorry, I wish I had words that would describe this adequately, but at the point the artist begins to feel the artwork coming alive under the fingers, there is no need anymore to encourage the situation. At some point, it begins to draw a person in. At least that is what it does for me.

I have had several phases of fighting for life after severe bouts with strokes and heart failure, and also had to deal with more than one chemical poisoning. Artwork gave me a way to rehab my fingers and restore that eye-hand coordination that is so essential to working in wood and construction.

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The eagle was drawn more than once and painted more than once. Each time I produced a new piece, I would compare the latest with the one before, to see how my hands were improving. Above was the last painting, below is the last drawing.

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I tried to go out to actual locations and draw, but found our high country is seldom warm enough for my fingers to work freely. Not wanting to brave early spring days or midsummer heat, I resorted to cameras and the photos could be hung on my sketch board and used to inspire my drawing. It is not necessary to get an expensive camera or look for good shots out in the area where you live. If you or your patient is just getting started, magazine photos give great choices for inspiring drawing and painting. It is not about achieving perfection right away, but it is about achieving peace and joy and having a non-threatening way to revive nerves and muscles that would otherwise atrophy. It is one of my personal great joys in life, and I can often unwind and let off a lot of frustration, disappointment, and hurt while drawing and painting. It certainly is wonderful that my wife is as avid an artist as I am. We sometimes consider doing projects side by side. She is also a musician. So she can and does play guitar and piano and sing. That is a fun little way to de-stress as well.

I wanted to post a few more pieces here and give you an idea of how they were inspired so it might trigger your own creative juices flowing.

For those people who are in the battle for a loved one’s life, I realize that just like me, you might not have a lot of time. The beauty of artwork is that you can start a piece and just give it a stroke here and there and it will wait for you. Flexible timing is key. Some of my most intricate works are the pieces I did while sitting with my wife in a hospital room day after day. I could be doing something while the staff took care of her, which made me feel like I was doing something and also gave her reassurance that I loved her enough to sit with her and stay with her.

So here goes my gallery string,

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The red fox is a pen and ink drawing, felt tip and drafting pens were used, and the model was sitting at the end of a field and posed for my camera one winter day when I was a teenager. I drew his picture more than 30 years later.

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The clipper ship above was a pen and ink and took months to draw between taking care of my close friend. It took hours of painstaking detailing to render the ship. I did it because the designer of the ship was Captain Robert Waterman with John Griffith Naval architect putting the ideas down on paper to build the ship. This one, The Sea Witch set sailing records that still stand today. I was amazed that ships could be built that sailed faster than 60 miles per hour and could put more canvas in the air than what the area of a football field was in size. I did my very best to do the ship justice as it was a piece of art as well. Clipper ships were built almost as fine furniture.

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The windmill is another painting that took months to finish. I was taking care of a group of men in rehab who were kicking drugs. Their issues would fill my day and left me with little free time. I learned during this time that acrylics and water colors were much easier to break out and use than oils as there was a much less demanding method with acrylics and water colors. Colored pencils and pen and ink were also very easy to use as they too did not require so much setup time.

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Lefty and lightfoot of course, need no explanation as what inspired the drawing. A photo was shot for a magazine and I could not resist. New Mexico has a healthy movie industry tied to Hollywood, so I was able to make some use of photos of famous actors too. Try to guess which Carradine brother this is next!

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The wolf was photographed in the Yellowstone park and the little raccoon kit was just a couple weeks old and bathing in my mother’s watering can on the family farm when I photographed him and  drew his picture. Several of these drawings were produced when my mother needed a caregiver while she was dealing with a heart failure.

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All of these drawings were done in small snatches of minutes taken between feeding, changing beds, cooking meals and transporting patients. Sometimes I had good drawing pads and other times I used copy paper from a machine in a hospital. They were all therapy for me and many made me some spending money used to help cover expenses.

The masked bandit below says goodbye and that’s all for now!

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Just remember, this is not about being a perfect artist at the first attempt. This is about expression and unwinding and dealing with stress and having some way to feel that you are still able to do something from your heart other than changing beds and cooking and dispensing meds.

Enjoy.

Impossible to defeat, relentless enemy

Impossible to defeat, relentless enemy

050317-F-1234P-002This is an article I wrote for CNN iReports this morning. I think of all the people I have cared for or assisted, this particular family was the most difficult for me to watch as things unraveled in the mind of the husband/father of the family. It is not a cheerful ending. Alzheimer’s does not give much in the way of cheerful endings. But I learned a lot about the effect of the disease on a family and how it affected the people in a family. It was exceptionally difficult for me as the man who succumbed to the disease was a very close friend before its onset. I still remember much of that period of time which came when I was also a new father having just had a daughter born to my wife and I. My daughter would never know the man who actually blessed us with many things before his life changed for the worse. It made it doubly hard as this very brilliant and generous man slid away from us all. Especially difficult was the days when I realized he no longer saw me, but saw an officer who he served under many years before. His memory of David Waterman was gone, and had been replaced with the memory of a long since deceased World War II serviceman and officer in the Air Corp. Once that memory of me faded, our friendship was forever changed and had effectively become one way. I don’t know how to even put into words what that felt like. But I wish to not do it often, if ever again.

 


Impossible to Defeat, Relentless Enemy

When the person you are caring for is eating and drinking themselves to death

When the person you are caring for is eating and drinking themselves to death

In the past 35 plus years of intermittent caregiving I have involved in, there is nothing more heart wrenching, nothing more terrible, no ache deeper to me than watching someone refuse to do the things that will at least give better health. The first issue that comes to mind for me, due to my experience working as a counselor with drug addicts and alcoholics was, of course, the drugs and alcohol. But it does not stop with those two major glaring addictions.  There are the ‘innocent’ addictions such as smoking, food disorders, and the abuse of medications.

These issues were brought painfully back to my attention recently as a man our church ministry group had ‘adopted’ as a friend and a member of our group. At 60 years of age, he has been dealing with Polio his entire life. In spite of the very real and painful effect of the heroin he has used in the past, the hold it has had on him has been more powerful than his desire to avoid the intense pain it brings when he dips back into that lifestyle of the addict again. One of the pastors who is often very regular in his visits and help for the man has called me at times and just asked me to come and visit. When we sit down and deal with issues such as wheelchair repairs, cushions, shower chairs and all the other issues a 60 year old dying man is facing we will inevitably come to the place where we are discussing the heroin abuse, the drinking, and the smoking. My pastor friend will put his head down after awhile and weep for the man. It does not matter how much we ache and hurt, he will fall back into the bad habits over and over. So we watch him die, by self-destruction through the intake of the very chemicals that are aggravating the crippling deteriorating effect of the Polio.

I referred to the “innocent” addictions, but they are anything but innocent in their effect on the patient. We get shaken out of our complacency at times by the horror stories. One gentleman in our local area insisted on smoking even though he was on oxygen. He managed to go for several years wheezing through his Emphysema and COPD while smoking and having the oxygen feeding into his nostrils, when one day his cigarette ignited the oxygen and literally tore his nose and nasal passages open with the resulting explosion.

I have often felt frustration that bordered on despair when dealing with some patients because they would absolutely refuse to quit the self-destruction.

There is no easy decision or solution that will end the abuse of self by a patient. It is more than the addiction for most. There is a myriad of issues that cause people to self-destruct. One of the big causes is the pain some of the patients feel. If a person is dealing with constant and continual pain, the patient will often self-medicate.

One huge issue I have encountered is the issues that mental illness will cause and how those mental health issues will cause such depression and despair that the patient will give up on life.

I still struggle with knowing how to lead someone into a healthier lifestyle that does not contribute to health problems already happening. It is easy for those people who want to get well or at least maintain their health as good as it can be. The difficult ones are the people who have been told by every doctor who sees them that they need to stop the particular behavior they are indulging. That is hard enough when a person is a paid or contracted caregiver. But when the person who is destroying their health is a loved one, it is infinitely worse. Watching a loved one slowly self-destruct is brutal. It gives a whole new meaning to the subject of emotional and mental abuse. I confess that is often where I have been with people I have cared for.

From my mother who stayed with me for a period of time on two different occasions, and hated doctors so she wouldn’t go unless she was on the threshold of death’s door, and the close friend who smoked in spite of having cancer right up to the end when the fluid in his lungs actually drowned him.

I think the most painful words were, “Well, at least I am not an addict” or “At least I am not an alcoholic” or insert your own experience here. This issue of dealing with emotions and mental and willful decisions are real challenges to a caregiving/patient relationship. If the patient is dealing with chronic pain, the addiction is often going to increase the pain levels they are feeling.

I know we often don’t associate overeating with addiction, but it is another huge issue when dealing with patient health. It can also get dangerous. I have built wheelchair ramps for families where the invalid was so overweight that the caregiver was injured during the transfer of the patient from bed to wheelchair or from wheelchair to vehicle etc.

What can you do? Sometimes nothing! Not a thing, but just standing by helplessly watching death slowly brought on by the wrong behavior. But other times real solutions can be realized by checking off the factors that can trigger wrong behavior. There is some pain that is incurable. No medication can touch it and ease it, so trying to help someone control narcotics to ease pain is going to be difficult to impossible. But we should always try. Every patient is different. So sometimes a medication that works well for one person will not work for another. Talk to doctors treating the patient. Make sure they have a good understanding of the home life of the patient, and of when and how bothersome pain cycles are when they occur. Doctors can certainly do more when they are aware of the whole picture rather than fragments and bits and pieces of the patient’s life.

Here in New Mexico, many medical facilities are beginning to address mental health as they treat chronic illnesses. Thus, they are able sometimes to deal with the issues that trigger abuse of drugs or alcohol as a part of the overall treatment of the family. Depression and PTSD for soldiers returning from combat are big issues. If a soldier goes away in the prime of life and healthy and returns with crippling wounds, there will be huge issues with self-esteem and with self-confidence. Not a big deal for someone who has never really had their world rocked to the core but huge to a soldier who has suddenly found that many things are now out of reach physically.

And whether we like to think about it or not, the lack of self-esteem and self-worth with the disability will drive some to suicide. Many people do not have the will-power to kill themselves outright, but they will give up on life and they are committing suicide all the same. They give up and start to abuse alcohol or drugs or smoke or whatever the drug of choice is, and see no reason to stay clean because they tell themselves there is nothing to live for.

At the risk of appearing to be more pastor evangelist than caregiver here, one of the most effective solutions I have seen work over and over is the spiritual reconciliation of the patient with their new reality. A strong faith coupled with even a glimmer of hope has often transformed a patient I have helped on occasion. The most important thing to remember in all this is not try to force the patient to change. Instead, lead the patient by gentle and yet firm guiding standards and boundaries that let the patient know that you love them and care for them so much that you will be strong for both of you and set a course for the right life-style  and behavior that leads to better life.

Avoid going it alone. I have found I need the others in my support group as much as they need me. Above all, keep your own health good by taking care of you and in dealing with addictions, set the example by not indulging in the wrong things yourself. It will do wonders for a lot of patients  if they see the things you preach to them practiced in your own life.

Shopping for hardware, special equipment, and wheelchair accessories

Shopping for hardware, special equipment, and wheelchair accessories

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I spent a considerable amount of time, months in fact, trying to acquire the pictured Roho Cushion for my wife. I encountered a wide variety of issues that were enough to make me lose all faith in humanity at times and I questioned all of the answers I would receive after the first few weeks of fruitless efforts. Our efforts to acquire a replacement cushion for my wife began last August. They continued all through the fall and the winter until a month ago when things finally came to the point where I had enough.

Perhaps the greatest frustration was the fact that the people I was relying on to walk me through the process were not at all moved or touched by the fact that my wife suffered a lot more when she was not on the proper cushion. Those ulcers once referred to as bedsores are vicious and relentless and never ending……

I learned a lot about the system of Medicare and Social Security medical support for recipients. One of the first things I learned was that the paperwork is endless and if one line or entry was in error, we had to often go back and start all over from the beginning.

My wife’s doctor is not the same one she started with. The doctor she had up until December of  last year and a few short visits before he transferred this year was one of those doctors that will go the extra mile for the patient in their care. The doctor that replaced him was one that I used to go to years ago, and I had quickly moved on to a different medical provider because of his manner and seeming lack of attention to important issues and details in my care. But my wife is very loyal and sometimes too loyal to her current providers so she insisted on giving him a try. There was an immediate difference in her care and her general health. She deteriorated rather quickly when she had an infection. Martin, her former doctor would be aggressively addressing the infection with antibiotics and stepped up wound care. The current doctor would often delay response until the wounds were bordering on septic and sometimes causing a blood poisoning issue to occur.  That would often be immediately followed by an infection that would include UTI and often trouble with Kidneys being stressed and on one occasion a kidney failure for a few days.

The former doctor had written a prescription for her replacement cushion before he transferred to a neighboring town, and when the new doctor was treating my wife, he was not willing to do the follow up paperwork for Social Security/Medicare himself. Before he got around to doing that my wife had to be hospitalized for more ulcers and wound care as well as a Kidney infection that was causing dangerous fever spikes and creating a huge scare for me. Thus, I often alternated between this continual fear that an infection would flare that would require more resources and the frustration of dealing with people who at best showed a complete lack of concern for my wife’s well-being. What made matters worse was that I would often find myself looking at the fact that if she had her cushion she would not be bed bound for more than 22 hours per day and could reclaim some of her old freedom she once had with her wheelchair.

In all of this I learned that old adage that you should not change horses on the wagon in the middle of the stream. The fact that one doctor wrote the prescription and another replaced him and refused to follow through on the first doctors’ extensive notes and findings created quite a log jam in the process of keeping the paperwork flowing smoothly.

What actually worked in our favor was the assignment of an in-home nurse to come every other day and dress and clean the wounds that had formed in my wife’s body. Grant, a male nurse was very efficient and also had an awesome bedside manner, but we found he was also a very strong ally and advocate for my wife as well. Through his help and sometimes his well placed phone calls to the proper people we were finally able to acquire my wife’s cushion. The difference it has made is amazing. She is no longer

The difference it has made is amazing. She is no longer bound to a bed for all but two hours per day and she is able to go visit her son and grandchildren across town without having to rush home quickly so as to avoid aggravating the wounds in her hips and thighs. The opportunity to actually get out and visit for her is a life saver. She goes from being morose and moping and battling depression to being what her son calls a hummingbird or butterfly. a humorous description, I know, but it fits her.

I learned in a very real way, thanks to Grant the nurse that provided in-home care and a few doctors at Presbyterian hospitals in Albuquerque that it is not always who you know but what you know about the system that makes a difference.

After several months of arguing, pleading, cajoling and begging various care providers and medical suppliers of our need for an expedited cushion procurement, I started calling state agencies for assistance, advice and help. I found out from the state Disability affairs, advocate and assistance ombudsman office(Not the official title, but the description of what they can do) that we had certain rights including a fair and ethical treatment of medical and related issues. The information that the official from the state ombudsman’s office gave me agreed completely with what Grant the In-home nurse gave me. I was becoming better informed and better equipped to deal with the issue of the new cushion. But even with all of the facts and information, I was still not able to get the cushion delivered in a timely manner. By this time, it was a full ten months since starting the process. And I had heard every excuse imaginable to explain it. I finally received the cushion from a local medical supply and cut the miles of red tape by simply and firmly informing the front desk clerk at the medical supply that I had talked to the state ombudsman for the disabled and that I was also filing a complaint with Medicare and Social Security. I was given the cushion within minutes. Some paperwork had to be signed and I walked out of that medical supply with the cushion. Months of shuttling between the doctor, the medical supply and doing paperwork at home had finally culminated with the receipt of the cushion. A full ten months after I had started the process.

Maybe some of the things I learned will help others. The lessons learned are as follows.

First, keep the same medical people involved all the way through. Changing doctors midway through the process caused a huge delay and caused an unbelievable amount of additional legwork for me to finally acquire the cushion.

Two, make allies in the medical community. That, of course, requires that you have a real and legitimate need for the medical item or accessory, but if you do, it gives your doctors and nurses more clout. Medicare does cull through the claims and they do vet them for necessity and importance. My wife’s request this time seemed to have been minimized because of a lackadaisical attitude by certain medical professionals. The alliance of Grant, the In-home nurse care provider was invaluable, and I will always remember him with a certain amount of fondness, respect, and gratefulness.

Third, or maybe this should be first, but know your rights. I have had nurses and doctors tell me that they respect the medical bill of rights that determine how they treat a patient. I have heard many different versions of that list of patients rights, but it best can be summed up in the statement that you are or your patient is to receive the most effective care possible at all times. It is not wrong to expect a professional and courteous behavior from your nurses and doctors. Any behavior that does not reflect that standard should not only be noted but should be reported to authorities. Negligence is not as common as some would have us to believe in the medical professions, but it is not entirely absent either. So stay on top of the issues when they begin to be apparent.

Finally, keep notes. If a doctor says something, get it in writing. Demand it be written. I really appreciate this new system Presbyterian has in our area where we can go online to our own medical profile and see all the information for our case or the case of our patient. It is nearly real time in the system that provides my own personal care that it really helps me keep track of any new developments in my healthcare. Notes are important for another thing. I have an extremely good memory and can remember books quite well that I read while still a teenager. Sometimes I think it is a curse. Because when I not only have remembered something that occurred clearly and also have notes to support it, it makes it all the more frustrating to realize a person I am dealing with is contradicting or lying about a past discussion or event. But for those people who have poor memories, the note taking is especially valuable because those very important instructions and directions from the doctor can be forgotten and misunderstood if they are not recorded. And if you don’t understand a specific situation, please be firm and ask. It can truly be a life-saving action. I have had the unpleasant task as a pastor of having been called on to preach a funeral for someone who accidently got the doctors instructions confused and took the wrong medication or did something that did more harm than good.

In wrapping up, something as simple as the above pictured Roho Cushion seems to be not so necessary to the uninitiated in the issues of ulcers and bedsores, but the right cushion can make the difference between a life of constant ER visits and dealing with infections, and the much easier more freeing life of living without those open wounds recurring on a continual basis. In the same way, what seems to be minor in choice of shower chairs or mattresses for the bed of the patient, or the type of wheelchair to use to transport the patient all have an impact on the patient’s general health. Let’s face it, the need for you to be a caregiver for your loved one is proof that there is already an issue with health that is serious and long term. Anything you can do to keep the patient’s condition from getting worse is to be encouraged and done

When ADA Code issues are not followed or dealt with

When ADA Code issues are not followed or dealt with

My wife just had another bad fall while in her wheelchair. Having been a builder, I have often had to deal with building and rebuilding access areas and doors for the disabled and handicapped. This is not the first time my wife has fallen. But it has stressed her a lot, and she is in a lot of pain today as a result of the fall. We were able to go out and celebrate our anniversary.

We were able to go out and celebrate our anniversary by having a dinner at Zio’s Italian restaurant here in our area, but we are now dealing with the increased pain she has and the difficulties the head injury has created for her.

When we had these difficulties before I would often just take care of our immediate situation but now I have realized more and more people are having similar accidents in our area. Although our particular apartment is managed by professional and caring people, it is not the case with all apartments in our area and especially not true of the last one we lived at.

The following is an article I wrote for CNNiReports and it pretty much sums up some of the issues we are now addressing in our area. Sometimes, we need to look around and realize we are not alone. The sidewalk or the door or ramp that is a struggle for us is also a struggle for every other person who is disabled and in a wheelchair.

Sometimes we need to write a note to whoever is in the city government that represents us. It can be a Councilman or mayor’s liaison, or a specific public access office for services. But we must sometimes get involved with the local government to get effective change and improvements for the disabled and handicapped.

When the ADA Code is not Applied or Enforced in Construction

Have you ever had a day when you are just doing okay? You are not doing super nor are you failing, but everything is as good as it can be considering limitations and necessities. And then the awful and unthinkable happens and life is suddenly upsetting and things are no longer flowing smoothly.

Our family has a lot of those times. My wife is in a wheelchair and has been for 37 years plus. I am a former builder and am also now disabled as I wait for corrective surgery to repair some damage to my spine after a serious fall into an unsecured open manhole. I am hoping that I will make a comeback, but my wife is going to always be in that wheelchair.

Life is difficult for the disabled and handicapped. What is a normal routine for the average walking person is often a huge challenge for people in wheelchairs. I am often frustrated because of the fact that we as a society don’t recognize the obvious and we often do not apply the basic common sense to an issue.

One would think that after years of ADA Code revisions, to address the needs of disabled and handicapped citizens that we would no longer have obvious blatant and oft times stupid, failures to properly construct access to public places and safety rails and curbs.

The City of Albuquerque is a good example. The powers that be tooted their horns because the city placed in the top ten cities to live if a person was disabled. REALLY? I would hate to live in the others that are not so highly ranked! And I wonder just who ranked us there in that bracket? Because the fact is, we are not doing so hot in being safe for disabled people to be living here.

Having lived and breathed construction most of my adult life, I had to be aware of The ADA code. It is simply a set of guidelines and rules written under the American with Disabilities Act, that are to be followed when building public buildings, large apartment complexes and commercial properties and retail spaces. The code includes guidelines for bathrooms and restrooms, as well as door entrances to buildings and sidewalks.

If you were out apartment shopping at all in the City of Albuquerque you will quickly realize that many places are not at all built to accommodate the handicapped and wheelchair bound person. Some of that is due to the fact that older structures are grandfathered into the approval because they were built before the code was written and passed into law. But that is only for the older buildings. New structures must have walks and entrances set up for handicap access. They must have an accessible restroom and bathrooms in the public areas, and sidewalks must have an access ramp for wheelchairs when the walk is elevated above the parking lot. Where there is a danger of falling there should be a railing or curb to prevent wheelchairs from going over the side and tipping.

My wife had another of those incidents last week. This is not the first time we have had her lose her balance due to uneven surfaces, but our treatment was definitely different this time. We were living in an apartment in Northeast Albuquerque and she flipped backward when her left wheel dropped off the edge of the sidewalk into a low area where landscaping had washed and eroded.

In that case her accident occurred on June 18, and we asked the apartment management to fill the low spot which did not get done until I threatened a lawsuit in September. That unit was a declared ADA Compliant unit. They had to meet higher standards and yet La Paloma Apartments of Albuquerque had not even taken care of many basics for tenants. When I googled their business I found pages of bad reviews and ratings. Wish we had checked that before we rented. The management have stonewalled us ever since that incident. Even though my wife flipped backward and slammed her head into the sidewalk and had a long recovery complete with swelling of the skull, slurred speech and the usual symptoms of a serious concussion.

When I protested to the city officials in the Inspection department, the situation was ignored. I photographed the hole and the other issues were documented, and we looked for a new place to live.

I was very frustrated that even though the City was literally bullying me on our own home remodel and talking of how the ramps and access to entrances had to meet the code, they were completely silent when it came to a place where there was an obvious and blatant code violation. Now we are living in a different apartment on the west side that is about a decade old. It should definitely be to current code, right? Uh, no. There is a failure by builders to add the required handrails in those danger areas and there is evidently no oversight by Building inspectors to ensure the code was followed. The builder got the Occupation certificate without adding handrails.

The usual reaction is to file a lawsuit and go to court. Or to write a petition and acquire enough signers to carry out a change in the administration of the code.

But why is that necessary? Why is it that we as a society have to wait until someone is crippled or killed before we get things right? Why can we not see the need to resolve issues before they erupt? It doesn’t take much in thinking to see that this situation was an accident waiting to happen. One elderly person losing their balance while using a walker, or someone in a wheelchair like my wife who goes over the edge when her wheel slips off the sidewalk, and suddenly someone has a life changing or life threatening event.

It seems at times we take care of pets and have more concern for pets in our courts than we do for human beings. That is sad! Don’t you agree? When we can cut so many corners and leave so many loose ends in our public access it raises serious questions about our priorities and values.

Before I had that fall through a city manhole that was unmarked and unsecured, I was employed by a Property Management Company. We were often working long hours to ensure the safety of people that shopped the stores we took care of. Having had that work experience only increases my frustration at the haphazard and irrational city reaction to code violations. As I said before, all through our home renovation, we have been harassed and bullied and threatened and generally mistreated by a few city officials. Not unlike the situation where a few foolish and arrogant cops ruined the reputation and the quality and integrity of the majority of the APD who are some of our finest people. But we failed to weed out the city employees that are making the messes and stepping out of line. WHY?

The question begs an answer! Councilman Dan Lewis introduced a bill in the city council to impose an ethics standard and training on city employees, but it is way past due and many years too late.

We are a little more fortunate this time. The current apartment home we have is managed by some good people. When my wife fell they were there to take care of her. They got an ambulance on the scene and she was properly cared for by apartment management staff until she was in the hospital. Pity there are not more such people. It would be so much easier for the handicapped in the area. But sadly, those young women in the office here are the exception and not the rule.

So we deal with the fallout. Swelling in the skull, staples to hold scalp together, and pounding throbbing headaches while she recovers. Of course, the long sleep and rest periods. all of which requires her being watched as too much sleeping and drowsiness is a sign of more serious issues. There is also the extra care and watching that must be done. The new doctor visits, and the new scans, MRI’s and the x-rays. The days get more filled and busier but the time remains the same, making caregiving even more stressful and wearing.

People say we should start a petition. I ask why should we have to? Don’t our city leadership have enough sense to hold Code enforcement accountable or to make sure the Building inspections are properly done?

What’s your experience been like? Share your story in the comments below.

Walk a while in my shoes

Walk a while in my shoes

I don’t always think of the other person. None of us do. We get so caught up in our own thoughts and feelings that we lose sight of the other persons’ feelings. I was feeling frustrated a few years ago as I tried to take care of all the errands, the pharmacy runs, grocery shopping, keeping vehicles running, and trying to hold onto enough work to pay the bills. Upon finishing one task, I would often find two more immediate needs that had to be taken care of to take the place of the one I had just finished. It was very frustrating. We were dealing with those ulcers that form from pressure sores and my wife was not a happy camper! She had to stay in bed and only lay in certain positions. There is only so much a person can do with a restriction like that.

I tried to provide as much entertainment as possible, but it was rapidly getting her frustrated, too. I made sure she had her computer, plenty of videos and snacks as well as liquids, knowing that it would all be rather inadequate by the end of the day to relieve her boredom. Off to work I would go, all the while worrying about her, wondering if she was alright and generally a bear to live with myself as the stress and frustration continued to build.

It is easy to get into arguments. And it is just as easy to have them drag out for a long time. It really boils down to how we choose to react to each situation that comes up. I would often hear the negatives that were spoken much more clearly that I would hear positives if I chose to do so. And by the same token, if I chose to listen for positive feedback I would notice and hear a lot more positive comments. The direction and type of conversation is always determined by how we react or respond to what is spoken to us.

On one particularly trying day, I was out repairing a cooler fan for a friend and earning some money doing it. He observed that I seemed to be a lot more stressed than I had been in church the previous Sunday. I gave him a rather lengthy description of all the things I was dealing with that week and how I was getting very frustrated with it all.

He broke into my long description of things to remark that he felt sorry for my wife. I paused and let that sink in a moment and then asked him what he meant by that statement.  He answered that if she was having to lay in one position for a long period of time, she probably was as frustrated as I was. Because my friend was a public school administrator, he was well aware of my wife’s teaching career. He pointed out as carefully as he could, (I think he might have thought I was going to react the wrong way) that my wife was used to being up and active and dealing with a classroom of students. He pointed out that she was probably going stir crazy by that time in the afternoon that we were working on his cooler. He then said something I have often heard and just as often lost sight of, which is before you get too hard in judging people, walk a while in their shoes. If someone else had said that I would have thought they did not have a clue what it was like to be a caregiver. But that was not true of my friend. His wife had Alzheimer’s and she was starting to lose ground rather rapidly. He definitely had been in some difficult situations with her mental health deteriorating as it was.

This conversation reinforced something I would often counsel the families of drug addicts to do. I was involved in working with drug addicts and alcoholics to help them get their lives on track and off the addictive chemicals. One principle I would teach the guys I was mentoring was to respond to situations, not react. When we react we tend to blurt out whatever comes to mind first and it is usually the wrong thing to say. But if we respond to what is happening, it means we are tailoring our words and actions to bring resolution. Anger, frustration, hurt feelings, emotional retaliation come out of those reactions that are not thought through carefully. A response is generally going to ease the tension or lighten the mood while a reaction in kind is going to escalate the friction and hurts.

Some principles are obviously good for any married couple or family relation. But when in a caregiver/patient relationship, the failure to understand the other person is going to greatly aggravate the discussions and conversations.

My friend the Police Officer who lost wife, mother and father over a few years to cancer once advised me to consider that the pain and frustration coupled with the inability to move or function normally will be especially difficult for the invalid. He said that as a Police officer, he had been called for domestic disputes. He would be accompanied by a social worker and would go on calls where family members were in loud or even violent arguments. The purpose of the calls of course, was to resolve the conflict before the people did each real harm. He observed that when people were normally active and busy and they found themselves immobilized by an accident or illness, the situation was especially hard for them to endure. Conversely, if a person was a couch potato before they were laid up, there wasn’t as much frustration on the part of the invalid.

Over the last few years, I have been involved in several counseling situations involving a caregiver/patient situation. All of what my two friends pointed out has proven to be true.

My Police officer friend also pointed out several other things that we often don’t realize. That is, we are dealing with someone that is soon losing track of time as we know it. The patient can ask for a bowl of soup and you the caregiver might be moving double quick in getting it ready, but to them you are dragging your feet. This is because a watched clock tells time slower, and a watched pot never boils. I know those are old cliche’s, but the fact is, time drags forever for the invalid confined to the bed, while the caregiver is struggling to fit all the tasks needing to be done into the day. And if you are a working caregiver, and are trying to make a living while caring for an invalid at home you are actually pulling a double header every day.

I often say a prayer of thanksgiving when I think about my wife. She is an artist, she reads, she can do a lot from her bed or wheelchair. Not only that, but she tries to see my side of a situation. I found that communication is key to keep the resentment from building. If you are caring for someone who is coherent and lucid, there is no reason why they should not understand that your world cannot revolve around them 100% of the time. However, for those who refuse to see your side, there is really not much you can do about it. It goes back to reacting or responding again. What you do with that reality will be what determines your thought for the day, your dominant feeling and your general outlook on life.

There are many issues that are manifesting in the care of an invalid. But one thing we often don’t recognize is the fear the patient is feeling. Surprised? Don’t be! It is a very real issue for the patient receiving care.

Twenty-five years ago, I had a chemical accident on a job I was doing. For a period of time I was hospitalized and on life support. As I got well enough to communicate with the doctors and nurses in the hospital, I asked that my family would be contacted. When the nurse placed the call to my wife, she made it clear she was not interested in carrying on the marriage if I was so sick. Her last words to me were, “I did not marry you to watch you die. You will never see me or your children again.”  The doctors next contacted my parents, and my dad said I would be fine, that all I needed was time to heal, but he did not want to take the time to come and visit or offer even to talk on the phone. That changed my perspective on things dramatically, I can assure you! But the fact is, whether we like to think about it or not, whether we like it or not, we fear being left alone. So again, walk a while in their shoes. The person you are caring for may be an older family member. But when you look around, the only person you see is the one looking back at you in the mirror. There may be aunts, uncles, cousins, brothers, sisters and other relatives close by. But you see very little help. Our reaction? We dwell on the fact and think about the fact that we are the responsible one, the lone caregiver and provider of services to the patient. We only see and think of what we are feeling.

What do you think mom or aunt or dad or uncle or grandparent feels? They too see only you. They too are aware of the number of people in the family. It might not come to mind for them right away, but sooner or later, the thought will occur to them that you might abandon them. That thought will grow into an oversized fear very quickly if you start getting short tempered. Then the real friction starts. As you get short tempered or frustrated, the patient gets more fearful. Responses are replaced with reactions. Tempers flare, Feelings get hurt, and things are said that cannot be erased from the other person’s memory. Trust begins to erode. You can easily find yourself locked in an uneasy truce that is only peaceful because you are both to fearful or tired to fight.

Looking at the memories again, I said before that the chemical poisoning accident I had was twenty-five years ago. But one of the things that happened was that I had a very difficult time trusting caregivers, therapists, doctors and medical personnel. I still do have trust issues. Things that happen like a family member rejecting you or walking out on you will cut deep and leave a bruise on the soul that can take years to heal. When it came to family, my reaction was that if my own wife didn’t want me, why would anyone else? I stayed with friends for several years. At first, I needed a lot of TLC. My body had been badly damaged. The chemical that I was exposed to had a deadly effect on nerves. I went for eleven years before I could feel my fingertips again. Because the chemical was a solvent based product, something as routine and simple as pumping gasoline into my vehicle could trigger a reaction so severe that I would find myself waking up in a hospital again.

Fear is a real issue in the patient’s mind. The patient knows that you are walking and mobile. They know they are taking your time. They know you are not out there living life like you would if they were not in your care. So the other enemy in their mind is an often overwhelming feeling of guilt. There is really nothing you can do about that. The fact is, it will be there. Both of those enemies to your relationship will be there. Fear and guilt.

On your part, the enemy is going to be the frustration and resentment. At least with some. Honestly, when I cared for my wife at first, I was proving to myself that I was not selfish like I saw my ex-wife as. That kind of crusade loses it’s appeal and warm fuzzy feeling fast.  But my wife became my wife because I fell in love with her. Because I loved her I married her. I challenged myself to express my love for her in everything we did together. I would look for ways to do things so that she would see that I was a willing participant in her life rather than a reluctant resentful partner. It is harder to live that way when bills are piling up, vehicles are barely hanging together, medical supplies are eating every spare penny and it is hard to set a schedule because of ever recurring health issues. But we do schedule date nights. Something that can be as simple as reading together, watching a DVD together or playing around with artwork. The point is to do things that are family and friendship building rather than just the constant caregiver/patient interactions.

I was talking to a friend just a few hours ago before starting this article, and I told him that at the point that I go to the mailbox and the medical bills with the dozens of fees, copays and charges total in the hundreds of thousands, that a person has to realize that the important thing is not what is happening, but how we are going through it. I don’t mean that in a fatalistic way, although it is not a very long step down into frustration, fatalism, despair, and depression. But what I mean is that you will not pay a bill or charge at the ER any faster by allowing it to overwhelm your mind with worry. But we can make our life, our living, our day to day existence infinitely brighter and more joyful just by concentrating on the truly important things that are eternal. I noticed that my wife can handle a huge amount of stress, fear, and doubt when she knows she is cherished, loved, and wanted. But if I am distant, short tempered, or noncommittal, she gets agitated far quicker when dealing with doctors, nurses, and medical staff. Whatever feeling we are allowing to dominate us is going to eventually affect our relationship with the patient.

I noticed that my wife can handle a huge amount of stress, fear, and doubt when she knows she is cherished, loved, and wanted. But if I am distant, short tempered, or noncommittal, she gets agitated far quicker when dealing with doctors, nurses, and medical staff.

One thing that made a huge difference for us was acquiring a dog. This is not for everyone of course, but for those who are able, a pet is often a stabilizer in the home. The attached picture is not a photo of Benji, but of another dog acquired earlier. We have a Schnauzer that is almost blind but very well trained. Benji, (I know! We didn’t think too hard to name him that!) has been a great source of comfort for my wife and has provided hours of entertainment for all of the family. Getting a pet is often a good thing, but having a pet that greatly increases your workload is not a good thing at all. So choose wisely. I know of several families in our area that have a lapdog or cat in the household to give the patient comfort and companionship. One lady I built a ramp for and remodeled the bathroom in her home is a cat lover. She has two cats that are absolutely convinced that they are the owners and she is the pet. But the fact is, they are able to get close and snuggle and she feels and has comfort from that. In spite of the fact that many family members live nearby, she seldom sees them and the only person she does see on a regular basis is a nurse caregiver from an In-home Patient Care agency. Her cats have taken on the personalities and there is a very real bond and comfort in that situation. The huge benefit for her is that because the two cats are litter box trained, they are extremely low maintenance. The only real cost is a sack of dry cat food once a month in the grocery shopping.

The death of any relationship is when the practical demands and needs completely replace the tender, familial, friendship based, love based feelings and attention. One of the contributors to the breakdown of the relationship occurs when all the patients’ acquaintances are reduced to medical staff and you, the primary caregiver.

I cared for a Korean War vet over thirty years ago and our relationship was made much easier because he had friends and former co-workers who would come and play checkers and Backgammon with him which would give me some time to rest and take care of me. I didn’t always leave, because I liked those old men who came over every few days. They would joke and kid around and swap stories and tall tales about fish they caught or elk or deer hunts and sometimes they would talk about their part in wars. They were not always talking of happy things, for memories of fighting in the Korean war were not pretty, but they were closer as friends than most families I have seen. The bond and support they gave to each other was more valuable than words can describe.

Again, if the patient you are caring for, sees only you and the medical staff, the patient may get rather reclusive, withdrawn or belligerent. Since you are the only one there, you will bear the brunt of all those bitter feelings they harbor in their heart.

But regardless of the situation you are in, if you do not get some time for yourself to recover and restore from time to time, you will burn out. It is essential that you take care of yourself so that you are able to care for your patient.

I am going to add this last point as a pastor as well as a caregiver. The people who are able to fellowship in a church or synagogue every week weather the storms of caregiving much better than those who do not have a place to go and just sit and soak in some brain and heart food. It is never good to be continuously alone and isolated.

Mourning in anticipation of the loss

Mourning in anticipation of the loss

You are there listening to the doctor tell you and your loved one that they have a fixed amount of time to live. If you are lucky they can stretch it out somewhat with medication, therapy, hospice care or a few other options. Going home the mind plays the scene over and over. Going through the daily tasks the futility of the whole list of chores continues to rear up and mock you. You might not realize it at the time of the death sentence pronounced by the doctor, but you have already begun to mourn the loss of the person you care for. Whether a paid care provider or a family caregiver, you are anticipating the loss and death of the person. It colors everything that you do from that point on. It lurks in the back of the mind and sometimes at the most inconvenient moment, the tears come. Not that there is a convenient time to break down. There is always something that needs to be addressed immediately, if not sooner. But there it is.

an image of the authorI have found myself in that place a few times. Then as if by a God sent miracle my lover is given a new grip and an extension on life. The first time that it happened was definitely the toughest time. It was hard to comprehend that a seemingly minor infection could threaten kidneys and internal organs so quickly and threaten brain damage due to high fevers. The feeling of helplessness is always along for the ride. So too, the depression and anxiety that stems from worrying about whether you are dressing the wounds properly, the fear of introducing another infection or bacteria into an open wound, and the constant waking to check and make sure that you hear that slow gentle rhythmic breathing that indicates everything is still okay during the sleep time.

This is a feeling and condition that you cannot explain or properly describe to friends, other family members, or church members. It is a place that feels so lonely that even though you are surrounded by doctors, nurses, possibly church members and pastor’s staff, you feel completely alone and solitary. You wonder if anyone understands. If anyone wants to understand.

So what do you do? How do you handle the stress, the fear of loss, the doubts and the anxiety? How do you handle the feeling of isolation and loneliness? The fact is, most people don’t handle it very well if at all. The largest obstacle, the biggest enemy is the chronic or clinical depression that settles in your heart, mind and soul, that overwhelming sense of defeat and futility that so envelopes your mind and feelings that you are on auto-pilot. Not really thinking anymore but just going through the motions. This is a very dangerous place to be. Depression shuts down our ability to see things clearly and rationally. This is where mistakes can be fatal. And if not fatal, they can be costly in time lost and financial costs too.

I have been a caregiver to more than one person in my working life. Early in the time I lived in Albuquerque, NM I took a year off from all work and efforts in ministry and cared for one of my closest friends. Ervin had melanoma Carcinoma. He had tumors forming in his body so quickly that the medical staff treating him could not keep up. One tumor on his shoulder ballooned so rapidly that it looked like a second head sprouting from his shoulder next to his head. Two others formed in his brain cavity and pushed his skull into a different shape as they grew. Still others formed in and on other parts of his body. He was given massive doses of pain killers to keep him from suffering. He refused to take them. He would only take enough to deaden the worse of the pain.

Ervin had been a member of a church I had pastored the previous year. For the entire nearly four years I was in that pulpit Ervin would come and sit in church and during the week he would invite me to come to his restaurant in a neighboring town to eat on his tab. He often said while he was slowly dying before my eyes, that he wanted me to get the mourning out of the way so we could talk of the really important stuff. We often sat into the night talking of science, theology, creationism versus evolution, construction practices, politics and a wide range of other topics.  We both read extensively and we both saw that we could always learn more. We would be in the middle of a conversation and he would interrupt with a reminder that he didn’t have long to live, so get to the point of the conversation. He said he wanted us to say our last words about him when he was alive, because when he was dead he wouldn’t be there to hear what we had to say. He thought it important to make sure that peace was made with everyone before he left us.

He asked me to watch over his wife and family during his final days. It was assumed he would be out of his mind with pain by the time he passed, but he was not. He was alert and coherent right up to the moment when he stopped breathing in my arms as I transferred him from the bed to his wheelchair. One moment he was talking about the drudgery of going to doctors and the next moment he took a deep breath and died. This was a new experience for me, to be there at the very end holding a friend when he slipped into eternity. But it was the most peaceful of all the times I have dealt with funerals. I arranged for his funeral on behalf of his family. We held it in the First Baptist Church in downtown Albuquerque. I expected some friction from family members because not all of them got along so well, but the funeral went very smoothly, and afterward, even family members who did not get along with one another were at peace.

This was a huge contrast with other caregiving situations where no one acknowledged the impending death of the invalid. I saw not only the danger of depression at that point but of denial too. Denial is so much more difficult to overcome. By it’s very nature, denial is a refusal to see or accept reality. Mourning is so much more difficult and deeper and has a much greater negative effect on the family. I have heard quite a few people over the years lay claim to a miracle. I have heard people espouse the virtues of positive thinking. I have heard people cling to statements by doctors that there might be a breakthrough and new medicine to combat the issue. I have also noticed that the people who hold on to unrealistic expectations when confronted with reality are deeply disappointed and very defeated and depressed after the invalid passes.

For the people who are in Bible-based, Baptist, or Word-based churches, death is not a terrible end to a life. It is a transition, a stepping through the veil to a new life and body that will never grow old or hurt. Of the last four funerals I have attended that were honoring church members who were friends, the theme has been one of celebration for the departed, that they have received their reward. They are no longer suffering, their pain is over, their race is run and they have inherited the crown of life. We do not mourn as others do who have no hope, and even though we miss the physical presence of the departed we know that one day we will meet again and be forever joyful. When we mourn, we mourn that we could not have done more, could not have shared more and we are reminded that we are all going to pass and so we try to live a life that will convince people around us of the hope we have.

When we mourn, we mourn that we could not have done more, could not have shared more and we are reminded that we are all going to pass and so we try to live a life that will convince people around us of the hope we have.

Our funerals are celebrations of the life lived by a friend or family member. We share the good times we had together, the challenges overcome, and the obstacles removed from our paths.

My mother passed away in 2008. Her heart had been under a strain for at least a year. She had lived through some terrible accidents in the past, and she was ready to go home. One night she asked me while being cared for at my brother’s house if I thought it would be okay if she could go home to Heaven. I told her it was okay and to answer Him when He came for her with a yes. When she passed on, my sister in law Kathy, told me that she asked her the same thing and then just said okay when Kathy told her to go ahead. She was assured that her children were well and would not be abandoned (A mother to her children to the very end) and Kathy said she just went home.

Religion does not give that perfect peace. There are many religions in the world that demand that the subjects die for their god. But many doctors I have talked with assure me that the great majority of people who go to their final rest peacefully sometimes gladly and eagerly are people who have a relationship with God. That I think is the greatest help in the passing of a loved one who has required caregiving. There is a knowing that there is a rest, a place of peace waiting. Mourning is greatly magnified by fear of the unknown and the sense of total loss. But as an ordained pastor/evangelist, I can assure my listeners, that we are not hopeless, we are not helpless, we are not alone, we are not going to destruction, but we are entering perfect peace. Those who do not have this hope in themselves wrestle with huge and overwhelming fears of the unknown and the finality of it all. One particular doctor who had witnessed numerous deaths in the hospital that he worked often said that the patient would suddenly express awareness of Heaven or of angels and some would say the name of Jesus with such peace and joy that he would be greatly affected by the emotion.

So for us who are with one another in fellowship, in worship of God, in the Bible based Christian fellowships, Death is a graduation. Mourning is not the same for us. It is an experience that is part of living. Just a step into the next life and for those of us who are alive and remain we have a great anticipation to join them who have passed one day.

Hard questions about hardware for the disabled

Hard questions about hardware for the disabled

I spent the greater part of a day last week trying to expedite the delivery of a Roho High Profile air cushion for my wife’s wheelchair. After several minutes of repeatedly explaining myself and this the fourth time that I had dealt with a medical supply company on the subject, I was a little frustrated. It seemed like this was the thing I always found myself doing. First, in order to get Medicare in the loop, my wife would have to go to a doctor and get a prescription for the particular item she needed. Never mind that she has been in a wheelchair for 37 years and is listed with every agency as permanently paraplegic. The thing that seemed to be the only absolute in any process was the amount of red tape, doubled and redoubled efforts to get something or acquire something that should have been routine.

My wife is a retired school teacher. She had opted to pursue a career in teaching in spite of paralysis from the chest down due to a motorcycle accident. For most of her adult life she has learned to cope and to be mobile without assistance. It was only recently that she started having more difficulties in negotiating herself through and around obstacles to her chair.  And as she grew older her body did not recover as quickly from infections or sores as in the past. That being said, it seems odd that the Medicare system is so disorganized or even inept that they cannot seem to ‘remember’  a patients’ files and status. Ditto for the VA which has been notoriously in the news lately and for good reason, as many vets are not getting the care they need.

I found the same ‘challenges’ when I was acquiring a new shower chair for my wife, and resolved that issue by just purchasing one for cash from a medical supply. I was assured there was ‘help’, but in fact it is more productive to watch paint drying than to deal with the government agencies at times.

The one area we did not have any trouble was with building a ramp for my wife. So urgent is the need for a ramp into a home that I am surprised people just don’t sit outside and camp in their yard waiting for the ramp to be installed. I work with local ministry’s and nonprofit agencies to provide ramps for the people who cannot afford one. I also widen bathroom doors, install handicap showers and rebuild and remodel homes for ease of access on the behalf of people who suddenly find themselves handicapped and disabled. To say that there is a lot to do is an understatement. I find very few people who are getting even the necessary things done in their homes.

So urgent is the need for a ramp into a home that I am surprised people just don’t sit outside and camp in their yard waiting for the ramp to be installed.

I built the ramp in the photo above for the granddaughter of a good friend. My friend asked if I could help out with this project because they had nowhere else to turn. Chrissy, or Christine (the granddaughter) had nowhere else to turn. At the age of 40 she had a degenerative bone disease that was so advanced that her feet were crumbling as she walked. She also had a case of Lupus and added another disease to that in Leukemia. Her husband suffers from Type 3 diabetes and is usually ash gray in color and usually drained of strength. Joe does a heroic job, but the fact remains that they collided with all the worse things that happen to working class people who are suddenly thrust unto social services for their medical care.

Christina had been a cashier all her working days and Joe a mechanic. Now they are struggling with just getting upright and mobile as each struggles with health and bodies that are shutting down. I am not going to go into the details of Christine’s struggles to get medical service and help. Quite honestly, it is too depressing. Because she was in a low paying job, her allotments from Medicaid and Medicare are low. When she needs another surgery she often has to go to multiple doctors to get all the facts together and build her own case for her need.

The ramp became necessary and was added to her mobile home a couple years ago. She had pins and screws in her feet holding them together and designed to prevent future breaks. But bone had crumbled so much that she suddenly had a screw nearly 3 inches long working out of her foot and the end had punched through the surface skin which necessitated another surgery and put her in a wheelchair.

What do we do when we are in desperate need and don’t have the material to provide the need? In the words of a Marine friend who had been a career soldier, “We improvise!” I had already built several ramps that year Christine was forced into a wheelchair and there was no money left in my coffers. I have tried to build every ramp and every remodel out of pocket. Simply because most people in the Land of (dis)Enchantment, New Mexico, are so short of cash that they often are not eating nor taking their prescriptions due to economic constraints.

But this is one area that miracles can happen. In spite of a very tough economy, many people are still generous here and we found a way to put the material together for a ramp for Christine. If you look at the photo it will quickly become apparent that the lumber is used and some is painted here and there. This is because this ramp is a combination of wood and lumber from several local businesses. The fir posts are from a well known barbecue restaurant. The treads or deck boards are from dismantled seats from a well-known restaurant that folded and closed. The rails are from glass crates that were used to transport window glass to local glass and window shops. The screws and nails as well as the wood preservative, which gives the joists that stained green look came from a local hardware store. No one business contributed all of the materials for this ramp. Because the floor of the mobile home Joe and Christine are living in was 32 inches off the ground, the ramp had to be 32 feet long to acquire the proper slope and be safe for a person to negotiate alone while in a chair. There is a ratio to use in determining the proper length and slope of a ramp. That formula is a 1/12 (One in Twelve) pitch. This simply translated means that a ramp is 12″ long for every 1″ of rise. Thus, a 32 inch high ramp at it’s head is 32 feet long.

In looking for help to build, consider contacting churches. And this is where you put your pride and shame aside and deal with things. Yes, I know. We all do that. We hate to admit we can’t take care of it ourselves. I am Southern Baptist in church affiliation. SO in my particular faith there are groups called Baptist Builders. They are volunteers that will help people by providing building skills and help as well as skill and expertise in building or remodelling for handicap issues. Are you going to hear someone share the Gospel with you? Probably! Baptists use their services to show people they are cared for and cared about by God. Here in New Mexico I have encountered another church that strives to help those in need. That is the Catholic churches. Again, many members are builders and will contribute labor and expertise to help those in the community with needs.

A third group that is sometimes available is the non-profit groups that will provide helping hands. And don’t forget the individuals that are out there who are good hearted. Craigslist has been a great source for material and help for us in this area. We find that if we are working with people and make the need known, that the best of society rises to the top like good cream.

We find that if we are working with people and make the need known, that the best of society rises to the top like good cream.

The fact is, regardless of how good your insurance plan is, sooner or later you are going to have the day that the help is not there in the traditional sense. It is at those times that you need to look around and be creative in your thinking.

Finally, as a caregiver, you need to be known as you truly are. This means being in community from time to time. Fellowship with people outside of the sphere or circle of the necessary. Find a church or support group where you are part of the community. As caregivers, we often view the world as suspicious because we convince ourselves that no one understands us. While that may be true, what is really needed is that we be known and remembered and missed if we don’t show up. When we are part of the community around us and not withdrawn and reclusive, we can often find these major tasks such as a wheelchair ramp or a bathroom remodel are not so difficult.

As caregivers, we often view the world as suspicious because we convince ourselves that no one understands us.

Christine’s ramp was built and finished with a collection of used and some new lumber. The property manager of the mobile home court she lived in was ignorant of her rights under the ADA code and I had to ‘educate’ the manager as well. While most people will show compassion, this particular individual was all about the homeowners association rules and the appearances of the properties. A wheel chair ramp, no matter how well painted and finished, was unacceptable to her.

If you are so unfortunate as to find yourself under the influence of selfish and uncaring people, please find the local building inspector and/or housing authority, planning director, or your elected representative and get support and help. The ADA code gives very clear guidelines when it comes to your needs and rights. Use the code and use the services of the local agencies to protect your rights. Life is tough for the disabled. When dealing with people who refuse to treat disabled people with dignity and respect it is infinitely tougher.

Perhaps the greatest piece of advice is that we should not put limits on where help comes from. If we look to only government agencies for help, we will soon find that we are forced into a holding or waiting pattern for far too long without any real relief. Be open to the services of other entities in your community such as churches and non-profits. They often can fill the need that would otherwise fall through the cracks. My wife often says that we need to stay positive. I am the first to say that is nearly impossible when staring at a huge need without the resources to deal with it.

Finally, I do something else that is not often thought necessary but is invaluable for future issues. Keep a log of your situation. When contacting people for services, write down who you called and what you were told and where or what you turned to next. It will save you from back tracking and doing the same things over and over and sometimes in the process of reading your own journal you can identify a new method or way of tackling a problem.

It is not always going to be easy. In fact as you well know, most of the time we as caregivers are in uncharted territory and we deal with a new list of unknowns every day. So when we have an opportunity to solve issues and problems with community support, we need to take it. Otherwise, we stand in danger of burning out as the many issues outside our expertise overwhelm us.

One of the things I am working on now is a design for a wheelchair ramp that can be emailed to those in need. It would be the design and specifications that a builder would need to construct a ramp for you or a loved one you are caring for. The drafting and illustrating is not ready for publication yet, but when it is it would be free to whoever emails and asks for it.

My wife and I are Christian, we attend a Southern Baptist Church in Albuquerque, and we have found that the need among disabled is great while the help available is sparse to very thin and often no help is available. After building 43 ramps in 2 years, we realized that the need is huge and very few people are properly cared for. Too often we have encountered former caregivers who are now being cared for as they attempted to carry their charge up or down stairs and in and out of bathrooms. The most recent was a woman who was caring for an elderly lady who had suffered a stroke. The nurse caregiver weighing about 95 lbs. was carrying an elderly lady who weighed about 110 lbs in and out of a house that was 36 inches off the ground. Every time the nurse took her aunt to an appointment she was carrying her up and down the front stairs of the home. On a wet and snowy day, the nurse was carrying the lady down the stairs and slipped on the ice on the stairs which caused an accident putting her in a wheelchair along side of the woman she was caring for. I don’t want to see that happening to someone else.


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wheelchair ramp

This is a ramp that I built for a schoolteacher who was diagnosed with cancer. It was a simple and easy to build (for an experienced carpenter) ramp that consisted of just a few pieces of lumber and provided the lady with access to her home while she was undergoing treatment and needed a wheelchair. At this point it is not used as much as she is recovering.

The ramp in this photo is made of locally donated material and cost less than 100.00 to make as we only needed to buy wood preservatives and screws and adhesives to assemble it. We added a hand rail on each side to finish it off.

USB mini drive 8 gig 001

Here is another photo of a ramp I mentioned earlier in the article. In spite of the size and length of her ramp, it also cost only 150.00 approximately to build and it was painted after completion to give it an attractive appearance.

I am working on schematics and prints to detail the steps necessary to build this ramp and more advanced ramps for those readers who are in need of one. If this is something that you have need of for your loved one, contact me and I can share the plans and instructions. I can even make suggestions or explain how to modify to fit your situation if you send a photo of your particular situation.

Have other things needing remodel like bathroom? Let me know and I will be able to suggest or coach you and you can utilize family talent or have the specifications you need to hire a handyman to do the work for you.

The issue of access is huge when you suddenly find yourself dealing with wheelchairs and power chairs and scooters.

 

Staying close when the money is tight

Staying close when the money is tight

I have been a Caregiver at various times for over 25 years. If I were challenged to put my finger on the one thing that causes the most stress other than the immediate health issues, I would have to say it would be the financial issues.

In my ‘normal’ line of work, I have been a Bi-vocational Pastor or Evangelist. By its very nature, bi-vocational implies two jobs or vocations. So I have traveled as an Evangelist and been a salesman at the same time. I have done long haul trucking and also done the work of an Evangelist at the same time. When pastoring a church I have done work as a well-driller, plumber, electrician, carpenter or job site overseer or manager. The thing that is so attractive in that secular work is that it is largely predictable. We know if we put in a certain amount of time per day that we can rely on our paycheck to be of a certain size, expenses for our household to take a usual amount of our money and the rent or mortgage to be the same from month to month. But when we are dealing with all the unexpected issues that can come at us in health and mobility we suddenly have a maverick expense budget. Our budget will not be the same as the average American household.

My wife and I have had times when a simple little scratch turned into an oozing sore that refused to heal in a matter of days. Then we would watch helplessly while the sore grew deeper and expanded in area until the inevitable trip to the hospital to have it treated which often mean she would have to stay overnight or even a few days to clear up the infection and bring healing.

If I were unemployed it would not be an issue to deal with that hospital time and the driving from home to hospital to visit, although unemployment would mean no income. But since I am employed albeit self-employed in construction it became a nightmare in logistics. I am going to interject here that if I had not been self-employed, I would have been fired or let go for all the absences I have taken. In addition to the numerous times work has been set aside, I have had to come up with extra cash flow to cover the extra expenses. Self-employment works for me. I developed the lifestyle while being more active in Christian ministry, and I transferred what I had learned to the life of caregiving. While the advantages to self-employment for me are clear, the fact remains that when I need to spend the most time being a caregiver is usually the times when there are more bills and I find myself trying to juggle the two demands on my time.

However, There are times when the flexibility and the need to take more time to assist at home cuts into a work schedule that causes certain jobs to be given to another person in a company or labor pool. When that happens, I find myself looking for extra sources of income from alternative jobs or situations and have even sold off property to pay the bills. The idea of selling off tools and equipment has been a last resort or final solution. It only happens when all other options have failed. Just because if an essential piece of equipment was sold, it prevented me from ever bidding that kind of work again in the trades.

Being unemployed and competing for work among other people in the same trades is stressful. The need to sometimes be up all night and pull an all day job is exhausting, and the added issues of keeping the schedule open for unexpected events or needs will add even more stress.

During a particularly bad period I was getting a few hours of sleep per night, hospital billing departments were calling at all hours of the day for money, utilities were past due, cupboards were bare, the gas tank was so close to empty the van was running on fumes, some of my tools were stolen on a job-site creating an even worse issue at work, storms were rolling through the area while I was desperately trying to repair roofs and my sweetheart was dealing with some more deep wounds. Wounds that were innocent looking when they first appeared, in some cases just a scratch or small puncture wound and turning into a deep frightening hole. I would sometimes have to work hard at keeping my fear of the situation under control. When doctors talk of amputations, and removal of large sections of tissue, it gets very frightening to my wife. If I yielded to the fears and worries it would usually pull my wife even further down in her feelings.

One day in June last year, I realized the stress was taking me down. I also realized that the loss of sleep was becoming dangerous, as I was beginning to doze off at the wheel while driving across town from one small job to another, I was forgetting things, I began to be irritable and short tempered and resentment began to build. Just when I thought that things could not possibly get any worse, we had other family members who were also dealing with health issues and things just kind of exploded. One morning I woke up after just three hours of sleep and my hand and leg were numb. I noticed while at work that day that my speech had began to slur and I was having some trouble focusing my eyes. I did not need to have a doctor tell me I had suffered a stroke. It was mild to be sure. I deal with a chronic High blood pressure problem and I realized I was going to be out of action myself if I did not slow down. As if that were not enough to deal with, I had an abscessed tooth caused by a guy who accidentally hit me on the jaw while swinging a board into his truck. As my wife continued to have issues, and the other family member continued to worsen it was obvious that nothing was going to change for the better soon. And things didn’t get better. There were issues with the ’98 Dodge Grand Caravan that is wheelchair equipped for my wife’s use. I was going down fast in my own health issues. I started developing heart symptoms, blood pressure was very high, and I had started getting some excruciating headaches.

All of this led to our marriage being more strained and our affection for one another was cooling considerably. I could not do anything for any of the other issues that were beyond my control, but I knew that when my wife and I were on the same page and standing together and pulling together that we could handle just about anything. We will always have to be careful and budget our money and plan carefully what we eat and how we run errands so as to conserve. But I began to practice loving her like we were when we first met. I began to look for things to compliment her on. That took my mind off those times when all I could see were the negatives. When things were especially hard I would look for all the positives. One thing was easy to do. I often tell friends that my wife could make a gunny sack look like a million dollar dress because she is so beautiful to me. It is not hard for me to see her beauty and it is easy to tell her. I don’t have to say anything I don’t mean. She still gives me little butterflies in the heart when she turns and looks at me. Not only did I look for things to compliment her on, I tried to get her something special each time I went for groceries. She has certain favorite foods. It is great that her most favored foods are very healthy and so when I am grocery shopping I will not only get the staples but also try to pick up those things that taste good for her too.For Christians, we are told to practice loving one another. It applied in the original verse in the Bible to church members loving one another. But it certainly can apply even more to marriage or family. It made the difference for us. Sometimes my wife is in so much pain she is just venting and the things that are said are hard to hear and take. But when a person is seeing all the good, and remembering all the reasons why love drew two people together, it is easier to roll the venting off and to keep a positive attitude. My wife is always talking about being positive. She taught school for over two decades and she has a lot of students that adore her in her past. Watching her deal with children, some of whom come from very abusive homes, taught me a lot about how to handle other people and how to handle situations with her when she was in pain and just letting all the fear, pain and frustration flow from her mouth.

For Christians, we are told to practice loving one another. It applied in the original verse in the Bible to church members loving one another. But it certainly can apply even more to marriage or family. It made the difference for us. Sometimes my wife is in so much pain she is just venting and the things that are said are hard to hear and take. But when a person is seeing all the good, and remembering all the reasons why love drew two people together, it is easier to roll the venting off and to keep a positive attitude. My wife is always talking about being positive. She taught school for over two decades and she has a lot of students that adored her in her past. Watching her deal with children, some of whom come from very abusive homes, taught me a lot about how to handle other people and how to handle situations with her when she was in pain and just letting all the fear, pain and frustration flow from her mouth.

Do you know that loving someone can be very hard work or it can be very easy depending how your own attitude is? If you enter into the effort with the attitude of “I have to do this to be able to cope” it will be a chore and drudgery and the resentment will build even more in your own self. But if you enter into this time of practicing love with the understanding that whatever is done in love and compassion and whatever is given in those attitudes is never lost, then you will find that even though the cupboard is bare, the pantry is empty, the gas tank is dry, the house might be too cold or too hot, that two people working and thinking together will win where divided they will fall and fail. It is far better to be looking at the world and your problems from a position of loving the person you are caring for rather than as a chore or a work sentence.

Life for caregivers is not an issue of the glass being half full or half empty. Because if we admit it to ourselves, often the glass is empty. The thing I learned while we loved one another and worked together to overcome the issues with my wife’s health and now my own is that it inspires and attracts an increase in assistance from others. While sitting in Emergency rooms, I noticed many times that people who were belligerent and critical and complaining or arguing with family would not be as well received as those who were being decent respectful and considerate. My wife will often and constantly thank doctors and nurses for their care and attention. Even when she is in pain and really struggling she will keep giving compliments and letting them know that they are appreciated. When we come in together and the doctors and staff see us obviously treating each other lovingly, it seems to make her treatment more gentle, there is more compassion shown, she is handled more gently and she will often be even more profuse with her compliments. Love does indeed make the world go around for us. Certainly it makes things easier to handle.

I realize that if you are dealing with a loved one who is not coherent or completely ‘with it’ anymore that this is harder. We have been through those times. And they are very hard. It is so much easier when we are at least able to communicate clearly and the fog of misunderstanding is not there, but we can survive even those times when we keep our eyes on the true reality. Which is that one truth that we should never forget. We married because of love, and there were certain traits that attracted married couples to each other. When I look at my wife, I do not just see the present, I also see the sweet things she has done for me in the past. I think of the times when life was going smoothly and I think on those things. When I think on the good, the lovely, the pleasant and the sweet things between us, the things of good report, it is easy to care for her in love. It is easy to keep my eyes on the relationship and keep it right.