Medication management for seniors

Medication management for seniors

If you help care for an aging loved one, or are advancing in age yourself, you are probably aware of the importance of medication management. As people age, they can develop multiple chronic conditions, which may require several long term prescriptions. In fact, nearly 40 percent of elderly adults living in their own homes are prescribed more than five medications. In turn, follows an increased risk of drug interactions, side effects, and accidental missing or doubling of doses. Medication management is a set of practices to prevent these events from happening. Polypharmacy, the term used to describe the usage of five or more drugs at once, can pose potential dangers for aging loved ones. Adverse drug events, or ADEs, due to negative effects of polypharmacy are to blame for 700,000 emergency room visits and 120,000 annually, resulting in $3.5 billion in medical costs across the country. Comprehensive medication management is no small task, and here are a few tips to get you started.

Courtesy of BrightStar Care

Vets bill to keep veterans choice program afloat is signed

Vets bill to keep veterans choice program afloat is signed

Donald Trump signs vets bill to keep veterans choice program afloat

President Trump on Saturday signed a bill that will pump funds into the Veterans choice program to keep it up and running, while Washington continues to fight over how best to give veterans the care they earned – but which the government has sometimes failed to deliver. Approved in the wake of the wait-list scandal that… (more…)

Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Fans ‘didn’t care if he messed up’: Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Glen Campbell’s decades-long musical career came to an end Tuesday, when the 81-year-old country music superstar died after a six-year struggle with Alzheimer’s disease. He leaves behind a sprawling songbook and one candid documentary, 2014’s “Glen Campbell … I’ll Be Me,” which follows the singer as he deals with his diagnosis and embarks upon a farewell… (more…)

When betrayal is freedom

When betrayal is freedom

For fifteen years I cared for him.

His accident was days after our engagement. My mother pulled me aside and said I could still walk away if I wanted. I knew it would be a hard road of nursing him back to health. No one knew if he’d recover or what recovery would mean. It meant putting my career on hold. Putting my family second. Putting my fiancee first in all things.

And I did. I stayed with him. For weeks in the hospital. For months of being home bound as he regained his strength.

I married a man who was still, we hoped, getting better. He has gotten stronger. Or perhaps simply better at adapting to his circumstances.

For fifteen years we lived like this. With me bearing the burden of responsibility for both of us in so many ways. With me still letting him be the man of the house. With me always putting my husband first.

I finally decided I couldn’t live like this anymore. With my identity all wrapped around his. Subsumed by his.

My nephews are in that phase where they’re obsessed with favorites. What’s my favorite food? Color? Hobby? Animal? I realized I didn’t know any of the answers for myself any more. But I knew them all for my husband.

I didn’t do anything dramatic. I decided to join the local gym and take a class once a week with some other ladies from church. To make sure we attended church together every week. To take a little time each week doing something for me, even if something else feels more important. That’s three or four hours a week for myself, after fifteen years of ignoring myself in favor of someone else.

He didn’t like it. He met someone new at church. I should have known something was wrong when he stopped trying to make excuses to not go. I was so excited when he stopped protesting, when he started getting ready on his own. I was thrilled to see people every week, feel connected to something. He felt connected to something else.

The thing is, part of me is thrilled. To be free, finally.

Sometimes the bitterness wells up in my throat. I gave so much to him and it was never enough. Does he even realize what I did for him? But I know it doesn’t matter. I know what I did. I know how much of myself I’m willing to give. And I know he would never do that for me.

It’s as if a weight has been lifted off of me. It has been, really. The weight of a man who I’ve supported all of these years.

Moving forward, I can finally support myself.

D.L.

Depression Among Heart Attack Survivors Can Be Deadly, Yet Is Often Ignored

Depression Among Heart Attack Survivors Can Be Deadly, Yet Is Often Ignored

Clyde Boyce has been hospitalized 14 times in the past four years.

Boyce, 61, survived two strokes and five operations to unblock arteries around his heart, including three procedures in which doctors propped open his blood vessels with stents. He takes 18 pills a day and gets injections every two weeks with a powerful drug to lower cholesterol.

Yet the disease that came closest to taking Boyce’s life wasn’t a heart condition. It was depression, which led him to attempt suicide twice in the year after his first surgery.

One in 5 people hospitalized for a heart attack or chest pain develop major depression — about four times the rate in the general population, according to the American Heart Association. One in 3 stroke survivors become depressed, along with up to half of those who undergo heart bypass surgery.

Heart disease patients who become depressed are twice as likely to die within the following decade as other patients, according to an unpublished study presented in March at the American College of Cardiology’s annual meeting.

Depression increased the risk of death more than any other risk factor in the study — even smoking, said lead author Heidi May, a cardiovascular epidemiologist at the Intermountain Medical Center Heart Institute in Salt Lake City.

Relatively few heart patients die from suicide.

Most often, depressed heart attack survivors die of physical causes, partly because they’re less motivated to take care of themselves and take medication as directed, said Dr. Martha Gulati, a spokeswoman for the American College of Cardiology.

People suffering from depression are also more likely to smoke but often less likely to exercise and follow a healthy diet than those who are not depressed, Gulati said.

“You may be told to change your diet, but if you’re depressed, you may think, ‘This is too overwhelming. I can’t even process this information right now,’ ” said Kim Smolderen, an assistant professor at the University of Missouri-Kansas City.

The American Heart Association has recommended that cardiologists screen all heart attack patients for depression, using a short questionnaire, since 2008.

Yet nearly a decade later, relatively few cardiologists screen patients for depression, Smolderen said. In May, she published a study in Circulation of younger heart attack survivors, most of whom were women, showing that only 42 percent of depressed heart attack patients received treatment.

Overall, only half of all Americans diagnosed with depression receive care, according to the National Institute of Mental Health.

Many cardiologists say they don’t have the time or the expertise to handle mental health care, Smolderen said. Critics note there’s little to no evidence that depression screening prevents additional heart attacks.

Yet many doctors also fail to refer patients to cardiac rehabilitation — a program of supervised exercise and education — which has been shown to both reduce depression and help prevent heart attacks and deaths, according to a 2015 study in JAMA Internal Medicine.

Although the American Heart Association strongly recommends cardiac rehab, doctors refer only 2 out of 3 heart attack survivors for the program, the study found.

A fraction of patients referred to the program — which involves three sessions a week for 12 weeks — actually show up. Due to cost and other barriers — such as long drives to hospital rehab centers — just 23 percent of patients attended one or more sessions, and 5 percent completed all 36 recommended sessions, the study found.

Cardiac rehab programs include stress management and teach relaxation techniques and coping skills similar to those used in some types of depression therapy. The programs can reduce the risks of heart attack more than standard rehab.

In a three-year study published in Circulation last year, which included heart patients ages 36 to 84, nearly half of patients who didn’t attend cardiac rehab died or had a heart attack, stroke or hospitalization due to chest pain, compared with 33 percent of those who attended rehab.

Among those whose rehab included stress management, only 18 percent suffered one of these heart-related complications, the study found.

Ignoring The Warning Signs

Boyce — who said depression sent him into rages that tested his marriage — said no one screened him for mental illness after his heart procedures, although he had suffered several debilitating depressions since adolescence.

He wasn’t prescribed antidepressants, Boyce said, until after his first suicide attempt.

“The system failed him,” said psychologist Barry Jacobs, a spokesman for the American Heart Association, when he heard Boyce’s story. “What you’re describing is not the way it’s supposed to work.”

After Boyce’s second heart procedure, he stopped taking his heart medications for five days — a move that his doctors viewed as a suicide attempt. His doctor committed him to a state psychiatric hospital for almost a week, prescribed medication and referred him to a psychiatrist.

Yet Boyce’s depression deepened as the bad health news piled up. Doctors diagnosed heart rhythm problems that required a pacemaker; congestive heart failure, caused when weakened heart muscle allows fluid to build up in the lungs; as well as asthmatic bronchitis, which affects the lungs. Boyce began to dread that he would suffer a fate similar to his mother, who died after six months in a coma, brought on by a long battle with heart disease.

A year after his first suicide attempt, Boyce tried to overdose on prescription medication. His wife found him and took him to the hospital, where doctors committed him to a psychiatric ward.

“Everything was happening so fast,” said Boyce, a former advertising executive from Murchison, Texas, who retired due to his health problems. “I was just convinced I was going to die. I thought to myself, ‘I’m going to end up on a ventilator, unconscious, just like my mother.’ ”

Boyce, 61, of Murchison, Texas, shows his smallest and largest pills — two of 18 he takes every day for various conditions. (Sarah A. Miller for KHN)

Boyce received help from a variety of sources: medication; counseling with a psychologist; a “mindfulness” stress reduction program, which borrows techniques used in meditation; and cardiac rehabilitation.

Exercise helped him feel stronger and less disabled, Boyce said.

“I do think the rehab raised my spirits … feeling like I could still do some things,” Boyce said.

What helped Boyce turn the corner, he said, was a conversation with God.

“It was the night before my third or fourth operation, and for some reason, I was sure I was not going to live through it,” Boyce said. “I said, ‘God, all I ask is that you give me one more day, and I will try to be a better man every day.’”

Boyce lost his fear of death. Although he occasionally still gets depressed, Boyce said, he’s able to manage his fears and anxieties better than in the past.

An Expensive Problem To Ignore

Cardiologists are divided about whether to screen heart patients for depression, but many primary care doctors have embraced the idea, said Dr. Ken Duckworth, medical director for the National Alliance on Mental Illness.

Both the American Academy of Family Physicians and the U.S. Preventive Services Task Force, an expert panel that advises Congress on health care, now recommend that doctors screen all adults for depression. The family physician group also singles out heart attack survivors for depression screening.

Studies increasingly suggest that the most effective care comes from addressing physical and mental health conditions together, rather than forcing frail patients to make separate trips to a variety of specialists, Duckworth said.

Successful approaches have involved “packages of care,” rather than individual services, said Dr. Bruce Rollman, a professor at the University of Pittsburgh School of Medicine.

The team approach is key.

In an approach called collaborative care, mental health nurses or social workers serve as care managers, who reach out directly to patients, often by phone, to educate them about their disease, suggest ways to manage their depression and make sure that treatments are working, said Dr. Mary Whooley, director of cardiac rehabilitation at the San Francisco VA Health Care System.

Care managers work with primary care doctors to quickly adjust patients’ medications or other treatments as needed. They consult with a psychiatrist, often over the phone, Whooley said.

“You can’t stay home and get depressed … they won’t let you,” said Dr. Anita Everett, president of the American Psychiatric Association. “They reach out to you.”

A 2014 study in JAMA Internal Medicine found that collaborative care could be delivered over the phone. Patients in the study had blocked arteries, heart rhythm problems or heart failure.

Even on the phone, care managers “develop a trusted relationship with our patients,” said study co-author Dr. Bruce Rollman, a professor at the University of Pittsburgh School of Medicine.

An earlier study of collaborative care, which focused on patients who had undergone bypass surgery, found that telephone care not only improved depression, quality of life and patients’ physical functioning, it saved over $2,000 a year per patient. Rollman is now studying ways to treat depression and heart failure together.

Keeping depression under control can save money if patients stay healthy and spend less time in the hospital, Rollman said.

Depression costs the U.S. more than $210 billion a year, with much of the cost coming from reduced productivity at work, according to a 2015 study.

“There are very, very few things in health care that save money,” Rollman said. “A mild decrease in depression led to a big decrease in cost.”

Officials at the University of Pittsburgh Medical Center Health Plan were impressed enough by the results to include depression screening as part of a checklist of care for patients who are sent home after a heart attack.

Medicare, the federal health insurance program for Americans age 65 and older, began paying doctors to deliver collaborative care in January. Medicare has covered depression screenings in primary care settings since 2012.

In that time, Medicare payments for depression screening have grown from $1.7 million a year to $9.5 million a year, according to a Kaiser Health News analysis. While those screenings make up a small fraction of Medicare’s annual budget of $646.2 billion, Duckworth called the services “a noteworthy trend in the right direction.”


Elizabeth Lucas contributed to this story.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

Featured image courtesy of Time to Change.

Alzheimers, Loss, and What You Can Do to Help

Alzheimers, Loss, and What You Can Do to Help

Impacting roughly 5 million senior Americans, Alzheimer’s has made a name for itself in the elderly community. Little is understood about the cause of the disease and even less is known about the solution. What we do know is that it’s effects are heart-breaking.

Disrupting basic cognitive functions, altering personalities, and clouding memories, Alzheimer’s Disease is simply explained as the decline of the brain. It primarily affects the elderly age group, but it has a direct impact on the overall family lifestyle for all of those connected to a loved one diagnosed with the disease. It quickly becomes the family’s responsibility, specifically the spouse’s task, to care for the affected senior and a new set of challenges are presented almost daily as the family members learn their roles.

During an early stage of Alzheimer’s, the senior will typically need reminders to complete routine activities like eating regular meals, taking medication, managing hygiene tasks, and remembering names. As this stage progresses, the senior may struggle with incontinence as well as facial recognition. More severe stages of the disease may eventually require total care for all of their needs.  

So what happens when a senior facing Alzheimer’s Disease experiences the loss of their spouse? With such a complicated and variant diagnosis, there is no specific instruction for how every situation should be managed. But there are a few tips that will ease the process for those left to care for their loved one in the spouse’s place.

Firstly, someone will need to share the news of the passing of the spouse with the senior. The news should be offered gracefully, and presented in a manageable format that lends itself to the stage of the seniors Alzheimer’s diagnosis. The family member or caregiver responsible with this undertaking should know which triggers to avoid, and should also consider having another family member with them in the case of an unexpected, negative reaction. Grief already yields so much pain, and to a senior battling illness the news will more than likely be overwhelming. 

Emotional symptoms are at the forefront of the issue, as grief is already known for bringing a variety of emotions to the surface. But Alzheimer’s brings a few specific emotions that could be heightened during the mourning and adjustment period. Anxiety and stress are common emotions that could easily come from the confusion of missing their spouse or not recognizing a new caregiver. As for the caregiver, patience is key and they will need to find a way to share the daily responsibilities with other family members in order to relieve their own stresses and anxieties. Whether family member or hired caregiver, this person will be challenged with physical and mental oppositions.

Emotions can also quickly escalate to physical and behavioral reactions, especially where Alzheimer’s is concerned. Even without the added grief, physical aggression is common with Alzheimer’s patients. On any given day, the senior may be physically uncomfortable, experience medicinal side effects, or become overstimulated by their environments. A few tips for a caregiver to ease a rising outburst, include: conceding to an unnecessary argument, changing the topic, and speaking quietly instead of raising your voice. In emergency situations, calling for help may be necessary.

There is no doubt that the issue of Alzheimer’s and losing a spouse are two of the toughest battles a family can face. When both of these are combined, the road is even harder to walk. And yet, as the family of their beloved senior works out the difficulties associated with Alzheimer’s, they inadvertently provide an atmosphere of support that the senior really needs during their time of grief. As Alzheimer’s Disease affects your beloved senior during their time of loss, be the help they need most.

Author: Michael Longsdon (ElderFreedom.net)

How did we become professional caregivers?

How did we become professional caregivers?

A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.

The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.

So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?


At first I really want to work in the hospital. Since I was in primary then my secondary school, I made my decision to study nursing. Unfortunately, I got married when I was only sixteen.

I’ve been a good mother of seven. I went to school just to inquire some other details for my kids.

Its just so happened that I saw caregiving course. Really don’t have any ideas about it. So I enrolled the class for almost nine months. So excited to finish my class despite of all challenges, circumstances and even lack of transportation expenses.

I just gave my all just to get into the finishing line. And yes I did it!! Passed the exams!!

After a year one of my colleagues called and introduced me to her client (patient). Got my job!!

From 2009 up to present (my patient passed away 2012) they still kept me and they also allowed me to work. But I will still stay with them.

Billy Jean

I started caregiving in 2008. I went to work for a company that cared for
folks with developmental​ disabilities. It is a rough field but managed
stay for a year and a half. I decided to leave there when I realized my own
physical capabilities. I was 57 at the time.Kathy


For me becoming a caregiver came with my profession which I chose, but I think I would become a caregiver anyway.

Amanda


31 years ago I helped a lady I knew from a restaurant I worked at! Then after gaining much life experience and skill I decided to start my own company!

Rich


My mom’s first open heart surgery happened when I was 12yrs old. Became a caregiver then…. Became a live in caregiver for an elderly lady at 18. Going on 36 now and am currently on my 8th person don’t know that I’ll ever stop.

Cameo


Going to see my Grandpa in a long term facility. Then I was trained as a CNA at the same facility. Then I was trained as a nurse at another facility. I found I really enjoyed working with the elderly. I loved to listen to their stories about when they were younger. When I go see my Oma, I still love to talk to the resident’s and hear their stories about when they were younger. I had to retire completely when I was 32 due to MS.

Krissy


 

Physicians need to openly discuss medical mistakes and near misses

Physicians need to openly discuss medical mistakes and near misses

<blockquote class=”repubhubembed”><p class=”rhexcerpt”>Like many surgical problems, compartment syndrome must be recognized rapidly. Failing to do so may lead to a patient’s losing function in a limb, losing the limb altogether, and, in extreme cases, dying. A physician-in-training I work with missed it. Her error made me realize that medicine is suffering from its own largely unrecognized compartment syndrome.…<!–more–></p><style scoped>.repubhubembed{display:none;}</style></blockquote>
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Mourning the Imagined

Mourning the Imagined

I can see my father in vibrant colors. He’s got snow white hair, earthy brown skin, and a speck of light reflecting off one of the lenses of his eyeglasses. Behind it is a tiny sparkle in his eye. Except that it’s an artificial sparkle. Years ago, in his 40s, his eyesight deteriorated and he had an implant surgically placed in his eye. He’s an old man. One who still likes to cook, and who is a hero to his grandsons: My 2 sons. He’s taught them everything that he knows. They can retell all of his stories from his Air Force days, and they can imitate his heavy bristly voice. He pretends that it annoys him, but secretly he’s entertained. That’s how I imagine it would be.

My father died almost 3 months ago after a long term chronic illness. He just missed his 60th birthday. My children are too young to understand what’s happened. My 3 year old knows that something has changed in our family dynamic, but he cannot articulate what it is. In his brief but wonderful life, he’s only ever known his grandfather to be sickly, either bedridden or planted in the living room or kitchen. For a long time my father was upset because his first grandson cried when he tried to hold him, or wouldn’t go to him once he began to walk. He was crabby about it. He wasn’t the type to take rejection well. So he did the only thing he could do to get the child’s attention: he offered him snacks. They spent their time together seated across from each other at the kitchen table, eating cheese crackers and applesauce, and whatever else he had that week.

The evening before my father passed away, I ran home to tend to both of my children before returning to the nursing home where he lay dying. I was in a quiet frenzy to make sure that the evening routines were kept. Dinner, baths, bedtime story, prayers. My son found every reason to run through the kitchen noisily, disturbing every object in his path, until I realized that my husband and I had been too quiet that evening. Intuition had told my child that something was wrong, but being just shy of 3 years old, he didn’t know to ask the question, “what’s going on?” I looked him in the eyes and explained to him that his grandfather was very sick and in a hospital, and that we needed to take care of him. He looked up at me and immediately I saw in his eyes that he understood, not about dying necessarily, but that something was changing. As recently as this week, he’s asked about his grandfather. But no sooner than he asks does he catch himself and confidently say in his well rehearsed best grown up tone, “Paw Paw’s in heaven!” He knows his grandfather is gone. When we visit my mother, I sit where my father used to sit in the kitchen, across from my son, and we eat snacks.

When you love someone, you have dreams for them even though you don’t realize it. And when a caregiving journey begins, particularly for someone with a long term or incurable illness, those dreams die. And you can experience a very real sense of grief and mourning, even though the person is still alive. You mourn the imagined life, the one in which things take a “natural” course and allow you to plan our your life. You mourn the loss of that person’s contributions to the family, whether it be a special recipe, or wise counsel, or them simply being the backbone of the family unit. You’re forced to let go of how things are supposed to be, and live for the moment. You constantly think about them dying. On the difficult days, you may even ask yourself if dying would be the best thing for them. You don’t want to be without them, but you can’t stand to see them living without quality of life. You mourn the loss of parts of your own life.

My grieving process didn’t begin the night my father died. It began years ago with one hospital admission that changed the course of the lives of my entire family. I grieved for my myself, being an only child without a father. Even though I’m an adult, that still is a painful thing. Maybe adult children don’t say it enough, but we still need our parents. We need their help to navigate adulthood and even to save our asses every now and then. My father was very ill but I always knew where to find him. He was a constant in my world of otherwise fluctuating circumstances. I didn’t want to ask for his help, but if I needed it, I knew where to find him at any time of the day. Now that he’s gone, I’m hyper vigilant. The world feels less safe, less worthy of my trust. Parents are our first protectors, and when they do their jobs right, you’ll find a large void in your universe when they’re gone. I regret not being able to save him. Of course I know that it’s not my fault. But blame finds it’s way into the worst of situations.

This has been a difficult month for my family. My father has a birthday in June, and then Father’s Day was last Sunday. I called my grandfather, my father’s father, and talked to him for a little while. Since my father died, I see my grandfather as the prototype. He is the snowy haired old man that my father did not age to be. I hear my father’s voice in his. They both are great story tellers and always end with a lesson or punchline. I can see my father’s roots in my grandfather’s smile. And I can see his life in mine and in both of my sons. My youngest child, just 7 months old, looks a lot like a man who he will never know in person.

Life doesn’t always turn out the way that we imagine it will, and when it doesn’t, we will be sad, and we will feel the loss deeply within our souls. Mourning isn’t something sad that happens suddenly and concludes. It’s a steep mountain to climb. A large part of being able to cope with being a caregiver is to know that mourning the imagined life is natural. You cannot move forward or make sound decisions until you deal with the fact that your dreams for that person have died. The light is that new dreams can always be constructed. All hope isn’t lost. But we have to let go in order to move into the next phase of our journey.


By D. Southern

D. Southern is a freelance writer and the creator of Caregivers’ Village

What makes caregiving meaningful?

What makes caregiving meaningful?

We know that an easy life doesn’t necessarily make for a good life. People who feel that their life has meaning tend to be more fulfilled overall, even if their life is incredibly challenging.

Different people are driven by different things. Here’s a quick quiz you can take to see what sort of things might be the most meaningful to you. Many people find having a sense of purpose, close community ties, and helping others gives their life meaning. Of course, sometimes caregiving can pull us away from the things we found most meaningful.

Do you find your role giving care meaningful? What makes you feel that way? Has your life become more or less meaningful since you’ve started providing care?


Any meaning or purpose derived from anything I do is always contextual and enhanced or depressed by the, sort of, ‘fluid’ biology of my ‘human-ness,’ if that makes any sense. Everything day is different, and meaning varies, even with repetitive tasks.
Perhaps a little too existential here, but – you asked😜

Melissa


My life is immensely meaningful because my husband is disabled. Without my care, he would be in a nursing home. With my care, we are in a wheelchair-accessible townhome, which I built for us, and live independently. To conserve my own health, a paid caregiver comes each morning for two hours to get my husband up for the day. Our marriage is stronger than it has ever been. The fact that my husband is alive is a miracle. His aorta dissected in 2013 and he had three emergency operations. During the third one he suffered a spinal cord injury, and was told he would never walk again. Today, my husband is able to stand, stand and pivot, and walk the width of our townhome with the aid of a walker. We are grateful for every day, every hour, every moment we have together. In August we celebrate our 60th wedding anniversary. We are blessed.

Harriet


Yes, I think caregiving gives me meaning. I am not always able to change the outcome, but caregiving is showing someone you are “with them in the trenches”.

Amanda


what makes caregiving meaningful? caregivers speak out


Nothing. It is just one long slog.

Lee


Knowing no-one can care for my kids like me.

Tena


Sacrificing “self” for others. Expecting nothing in return from anyone. Knowing that you gave caring and compassion in desperate time of need. Just as Jesus would and has done.

Roy


Knowing that Mom can count on me for the best care. Yes, it’s sometimes frustrating and exhausting but she’s amazingly grateful so the love on both sides outweighs the bad days. ❤️

Doreen


 

How do you manage aggressive and challenging dementia behaviors?

How do you manage aggressive and challenging dementia behaviors?

One of the most difficult aspects of being a caregiver is having to cope with aggressive or other challenging behaviors that the person you care for exhibits. Other examples of challenging actions includes hallucinations, verbal abuse, anger, running away, taking clothes off, swearing, agitation, lack of appreciation. One of the secrets is that as a caregiver your response is a key on managing them and can influence the future reoccurrence.

The first thing to do is understand why these behaviors are occurring. The answer lies in 3 areas for people with dementia. People react in this way because of fear, confusion, and pain. They feel helpless or afraid and react to protect themselves. The first thing to do as a caregiver when these difficult behaviors erupt is take a step back and try to understand what is happening that is triggering them.

Dementia directly impacts the brain. It causes people to act in uninhibited, unfiltered ways. It directly impacts our ability to think, find words, or control feelings or what we do. It causes confusion. Take a moment and imagine what that would be like for you. It also tends to exacerbate the personality traits the person had prior to the onset of the dementia.  If you were a mean person before your diagnosis, those men traits may come out in a more intensified way as your condition worsens.

As caregivers we have to remember that people suffering from dementia still need to be respected. They want their wishes to be considered. They also want to feel they have some control over their environment. What may be surprising is sometimes they even regret these negative behaviors. They might not be able to express those feelings but it is important for caregivers to be aware they are there.

Caregivers can do some things to help manage these incidents when they occur:

  • Try to identify the cause of this behavior. Why are they reacting this way? What are they afraid of? What are they feeling? Try to make sense out of the reaction of a loved one.
  • Respond in a calm and comforting manner. Don’t argue. That will trigger more aggression. Don’t force the issue to prove you are right and they are wrong. Nobody will win that battle. Remember your body language. Smile and appear relaxed. Use direct eye contact. Be aware of the tone of your voice and the messages you are sending both conscious and unconscious.
  • Take a moment and imagine not knowing where you are. People often become combative and want to leave a place because they don’t recognize where they are. Try to gently redirect the confused person. Play a favorite song, go for a walk, take out a photo album. Use pictures or other concrete, tangible cues to help them focus and understand where they are at and why they are there. Keep your responses simple and direct. Say something to acknowledge their feelings like “I know it is confusing”, or “we can’t go now because it is very late or it is pouring rain” or whatever makes sense for you. Think about a response that will help them feel safe, cared for, and gets to the root of their fear.
  • Pay attention to patterns of behavior. Do these episodes occur at a particular time    regularly?  Some people experience sundowner syndrome where they get more confused as it gets dark.  Did something happen to trigger these episodes? What happened before they got agitated?
  • Look at the environment. Is there too much noise or stimulation? Is it too hot or too cold? Are there certain people that seem to upset the person receiving the care? Is being in a new place problematical and perhaps confusing?
  • Validate their feelings. Be understanding about what they are trying to communicate even if it is difficult to perceive. Try to collaborate rather than confront the person you are taking care of. If you overtly challenge what is being said or express doubt about it that can trigger an angry episode.
  • Become a master of distraction.  Try to use distraction as a technique to manage negative episodes and outbursts. Think about their favorite foods, hobby, music, photographs, clothing, or television show. Sometimes talking about people they like can ease the tension. Pay attention to what works and have it on stand by when a new outburst occurs.

 

This is very hard but also very important: Try to separate the person from the disease.

Dementia damages the brain and so people experiencing it are unable to control their thoughts, actions, feelings, and behavior as a result. Try not to personalize the negative interactions. Set boundaries for yourself and the person receiving care regarding physical safety. You cannot permit violent behavior that might potentially harm you or the person you are caring for. If this happens consult a physician about how to manage this issue. Take a time out for yourself if you need it. You must take care of yourself as a caregiver. That may be the most important tip of all.

Don’t Let Me Be, Forgotten

Don’t Let Me Be, Forgotten

The Art of losing isn’t hard to master, so many things seem filled with the intent to be lost that their loss is no disaster.

Lose something every day. Accept the fluster of lost door keys, an hour badly spent. The art of losing isn’t hard to master. Then practice losing farther, losing faster: places, names, and where it was you meant to travel. None of these will bring disaster.

I lost my mother’s watch, and look! My last, or next-to-last of three loved houses went. The art of losing isn’t hard to master.

I lost two cities, lovely ones. And vaster, some realms I owned, two rivers, a continent. I miss them, but it wasn’t a disaster.

Even losing you (the joking voice a gesture I love) I shan’t have lied. It’s evident the art of losing’s not too hard to master. Though it may look like (write it!) like disaster.

Elizabeth Bishop


As far back as I care to recall presently, I have been ‘lil girl, to grandmama at least. “Say your prayers ‘lil girl,” “Wash dem dishes lil girl, I don’t aim to play housekeeper all day.”

I was ‘lil girl before I began straightening the curly afro I sported in Elementary School. I was ‘lil girl when I discovered ‘lil boys who possessed parts that could replace my magical fingers. And, as you might have surmised, I am two and a half degrees later, still ‘lil girl.

I am not unique in this. That is, this is no pet name. It is not a name that is exclusive to me. All of my male cousins are ‘lil boy. Similarly, all of my female cousins are ‘lil girl. It is an ongoing joke between the lot of us, at least it was, until it wasn’t.

Yes, it was quite hysterical until we realized what it was. Grandma was only 76 years old when they brought her home. They- two patrons of Walmart who’d found her wondering around the parking lot, alone.

“But where is her car?” My mother asked, holding the front door ajar, clinging to it, to reality, normality.

“Why it must still be there,” the gentleman answered, “when we found her she only said she couldn’t remember where she was going. My wife,” he gestured towards the woman holding onto grandma’s arm, “asked for her ID and we, well, we thought it best to just get her home straightaway. “

“Yes, of course.” My mother forgot her shock and remembered her manners.

“My father had Alzheimer’s too” the woman whispered, with a wink.

My mother looked stunned. This, Alzheimer’s, hadn’t occurred to her. Grandma had been forgetting for years, but we all forgot, every now and then.

“Never mind what we thought.” The husband stuttered. Silencing his wife.

“Why yes,” The woman smiled at grandma. Patted her hand and relinquished her arm, “you just get yourself inside and get some rest.

Grandma walked obliviously through the door that was still holding onto Mama. Ma mouthed a “thank you” to the strangers, but stood in place.

I remember driving grandma’s car home from Walmart later that day, an old Mercedes Benz her deceased son bought her brand new over a decade ago. The car was one of her few cherished possessions, never mind how old it was now. She was a simple country girl, and 5 kids and countless years later, it made her feel as though she’d finally arrived.

Never mind how her son attained the car, or the dismal fact that the same streets that carried him would slurp him up and bury him in the cement. Be that as it was, she’d arrived. She’d finally arrived.

She’d bought hats in every color with the Mercedes Benz emblem imprinted boldly on them and she wore them over a crooked wig. Wore them to church to pray for her wayward son and wore them to the bank to deposit the checks his sins brought her.

A generation later, she would present one of the hats to my younger brother when he purchased his first car with stained money, it was a newer but similarly colored Mercedes Benz.

“Which one you want” she asked?

“Whichever grandma,” he answered with a chuckle as he tried on the black, white, and red hats, one after the other. “Well, if you really don’t mind, I think I like the red one best” he smiled.

“The red one then,” she laughed as she collected her remaining hats, the remnants of her youngest son, and tipped away with them slowly.

Grandma lives with my parents now, and every day she forgets. The loss of names seems trivial now, she’s lost larger things. She forgets to eat, to shower, and why she can’t drive that old Benz parked out in the grass beside our home. Even larger still, her siblings are dropping one by one, and she forgets them too.


 

“This says John Henry Ivory II” she reads the emboldened letters she’s memorized loudly. “Sunset: January twenty-fours,” she adds an s onto the number four and glares at it suspiciously. Then, “come read this ‘lil girl.”

I read her brother’s obituary aloud.

“Born in Fort Valley, Georgia.” She shakes her head at my recitation. “He was one of thirteen.” She nods affirmatively. “A farmer and a carpenter.” She nods slower this time. Leans back in the leather/cowhide chair that looks much too large for her. Stretches her right leg all the way out so that the joints in her knee can breathe.

“So how many left? Me, Ethel, Mary” she counts off her remaining siblings, one finger at a time.

I stop her. “Mary passed a few years back actually, Mary and Dot.”

“Dot,” she chuckles, “Dot prayed to pass. She didn’t wanna live past 80. Didn’t wanna smell ole age and suffer’in. Dot been pray’in that prayer for years, and God took her right in.” Grandma smiles.

As the story actually goes, Dot prayed to live at least until she was 80 after watching both of her parents die young- her mother to cancer, her father to himself. Grandma always tells the story this way, however, and these days it seems fair to let her tell it however she’d like.

“I’m not going to ask God to take me. I’m not ready for that. I wanna leave when God wants me to leave, and I might not be ready then.”

We laugh for a bit and by default circle around the deaths we’ve witnessed in our backwards family.

“You know how daddy died?”

“Suicide, yes.”

“Drowned himself, in a bucket.” This too is wrong. Her father hung himself.

“I think you have that wrong,” I suggest softly. She shakes her head in dissent. Recalls his legs shaking on both sides of the bucket, “like an animal.”

I persist in trying to make her memory logical, “did he tie something around his neck first, perhaps?”

She gets up and limps to the kitchen. “You just stay right there, “she calls. She walks and her one bad knee follows as she scavenges the kitchen looking for an exemplar. She settles for a ceramic vase that is much too thin to house a human head.

She stands before me with the vase. “Now you don’t believe me.” She looks forlorn. “Dot could’ve told you,” she snaps. I smile, disheartened, we both know the trouble is Dot is gone. Long gone, gone like a runaway slave trekking north for freedoms he may or may not receive.

I think about Dot, John Henry the first and second, and my dearest grandmother, Essie Maude Harris. And I prayDot’s prayer for her. It felt like sorcery, it felt like empathy.

As I say the prayer, I know it will not save her, just as her prayers did not save those before her, but it feels right to say it anyway. It feels right that she should go dignified, like Dot, not kicking and screaming like her father, John Henry I, legs flailing “like an animal.”

The truth is she’s already kicking and screaming, in her own way.

 


Winter 2015

“Stop, shhh” she insists. We stop our correspondence at once. It seems urgent.

“The baby is sleeping” she whispers, pushing her open palms down against the empty air as if to suppress the vibrations of our voices.

“What baby?” My mother asks.

Tipsy from our eggnog, we cackle at the question. We don’t have any babies, no babies live here.

“Now you know,” grandma throws both her hands up in the air in frustration; she’s through with us. My mother is the first to realize that in grandma’s mind, today, there is a baby. Ma strikes a deafening look in our direction and we hush up directly. Today, there is a baby.

Ma follows grandma on soft heels. Peeks her head into grandma’s bedroom. I peek over her shoulder. We don’t see much; just a cluttered room, a bed with stuffed blankets and TBN blasting from the television set.

Ma tiptoes over to the bed. Grandma’s chest rises and falls next to Ma’s lifeless wooden nutcracker. The two are wrapped tight underneath grandma’s quilt.

Today, grandma sees a baby, grandma hears a baby, we have a baby.


Fall 2016

Sometimes our baby gets out of hand. This past Thanksgiving, we learned that Alzheimer’s often leads to paranoia. The thoughts in our baby’s head get all jumbled up and she loses sight of reality.

She’s starting to see things that don’t exist. There are men watching her in her bedroom, and she must escape them, but not without herself.

She grabs and relocates the things that remind her the most of herself; expensive jewels she inherited when she was a registered nurse to wealthy white people on Star Island, fancy church hats that were a little too nice to ever actually be worn.

We watch in disbelief. She ignores us until, “Grandma, come have a coke with me” I suggest. I pour her a can of coke. I pour the soda into a glass already filled with a shot of Jack. I don’t listen as I cut her a slice of store bought pie, but I know she is declaring her love for coke. An adoration that stems from her childhood when, “daddy used to us home colas from work.”

She sits at the dining room table and nibbles on the pie. Sips the coke contentedly. When she starts to scrunch up her face, I pour more coke into her glass. That settles it, softens the secret ingredient. She drinks happily, though she has never had a drink in her life. We come from a long line of Christians who serve apple cider as champagne, even at weddings.

“I used to make pies like this,” she says.

I tell her I remember. I don’t remind her that that was just last year, she’s only recently forgotten how to cook.

I pat her hand, “you used to make pies way better than this.”

 

Sometimes our baby is sweet as pie. I facetimed her from Orlando a little while ago. The concept of cellphones is entirely lost on her. She smashes numbers into the confounding device, holds it upside down, tilts her head to get a good look at me. Today, she doesn’t recognize me.

“Who’s this ‘lil girl?” She asks my mother who’s stumping around the kitchen throwing supper together. Ma doesn’t answer straight away.

I smile into the device, “it’s me grandma.”

“That’s Tiffy,” Ma yells from the kitchen. Grandma misses this, shrugs, “well, whoever she is, she really is a beautiful girl. Ain’t she Tracie?” She sits the obscure device down and wonders after my mother’s voice. Leaving me and the confounding device behind.


Spring 2017

Sometimes our baby is rather wicked. My father recently purchased a parrot. The bird speaks Spanish, we speak English. He says “good morning” and “what cha doing” too loud while we are either still sleeping or too groggy to be proud of his expanding vocabulary. When we wake, we open his cage and he walks around on four frail toes as if he doesn’t even know flying is an option. His wings were clipped for so long, he doesn’t know they’ve grown back. He won’t bother to try them out. Grandma tiptoes around him, petrified.

When we put him back behind bars, she’s content, happy. She is bigger, stronger, and she wants him to know it. She pokes a spatula through the bars, taunts him with a smirk. I stop her and she laughs hysterically. “I beat him down earlier,” she tells me, “he took it though, like a lamb.”

My temper threatens to escape me, but instead of a harsh admonishment, tears come. “You can’t do that grandma,” I whisper.

She is still smirking at the caged bird. “I’m not a bad person,” she says, and I don’t know if she is speaking to me, the bird, or herself. But no, she is not a bad person.

The morning after is always difficult. Filled a combination of repressed rage and guilt. She walks into the living room where I am still lying on the sofa. Grandma moved into my room when I moved out,  so I spend my vacations sleeping next to the bird on a sofa in the living room. I don’t mind, much.

“Morn’in ‘lil girl” She greets me sincerely.

My answers are short, my tone clipped. “Morning” I whisper back being cautious; careful not to make eye contact, lest she think we’re companions and take up the empty cowhide chair sitting across from me and my feathered friend.

“How’d ya sleep?” She’s trying to make small talk. She’s forgotten what she’d done, why I am angry with her. I, however, have the gift of remembering.

“Fine,” I mumble.

She tips over to the chair, unpeeling a brown banana. “What cha writing?”

I sigh, “a story.”

As she walks past, I am aware that she soiled herself in her sleep. I scrunch up my nose. Somehow this makes it easier to hate her.

“What’s your story about?”

“Nothing,” I reply as I close my notebook. And I suppose I too am a bit wicked. I could say I am regretfully wicked, and I am, but I doubt that changes things. Wicked, is, well wicked.

I pray Dot’s prayer for her, again. But this time, it isn’t for her really, this time I pray it for me, for us. I come from a long line of cowardly Christians, that is, people who ask Jesus to fix their problems in lieu of rectifying them themselves. So, I pay Dot’s prayer for my mother who is working nights to avoid having to fight with grandma about taking showers or hiding soiled pants. I pray Dot’s prayer for my father who is raising my mom’s mother while Ma’s avoiding her at work. I pray Dot’s prayer for me, so I can keep my mom and dad home, together, in love, together, as it has always been.

I pray Dot’s prayer as a clueless child would, but I am not clueless, nor am I a child, so I am not exactly sure what that makes me.

The morning after is always difficult. Filled with a combination of repressed rage and guilt.

I think of the God I used to know. I think of the baggage grandma has carried; a widower with five children, no formal education, no established relations- a homemaker for a mother and a father who murdered himself. The ceremonies she planned for the two children she buried. The two sons she has left fighting my mother for control of her estate, for what remains of her.

I think of the God she made me pray to as a little girl, and I imagine him bigger, stronger, prodding her feeble body with a stick. I wonder how it must feel to her, but mostly to him. If he swells with pride as she calls out to him, “the one who gives, and takes away.”


Summer 2017

Grandma walks over towards the sofa. My mother suggests she kick her heels up in the leather chair across from the sofa instead. Tells her the chair sits up taller and thereby will be easier for her to maneuver her way out of later. The truth is, the sofa is fabric and the chair is leather. These days, grandma wets herself often and the leather chair is easier for Ma to clean.

I am visiting again. I have brought with me an old teddy bear my boyfriend gave me when we first began dating. He sprays the bear with his cologne and I carry the stuffed toy with me when I am away. The bear is sitting in the leather chair. Grandma picks him up and sits him on her knee.

“You take him with you everywhere you go?”

“Not everywhere,” I smile.

“What do you feed him?”

“He’s just a toy, grandma. I don’t feed him anything.”

She nods in consent, but continues bouncing the bear up and down on her knee. When I look up from my laptop, I see her whispering baby talk to the stuffed bear. Today, grandma sees a baby, grandma hears a baby, we have a baby.

 

Sometimes our baby wants to be an adult. This Saturday morning, our baby has decided that she wants to make her own breakfast. We’re proud, elated as we watch her limp around the kitchen. She must be feeling like old herself again.

I watch her rather intently, then I worry that she may feel my gaze on her. I turn my head and glance at her periodically through the corners of my eyes. Just yesterday, she retrieved an old candle from the trash and tried to microwave it as a snack. I am cautious, lest she make another blunder.

We worry that she may burn the house down, so my father shuts off the breakers when he is away. It never occurred to us that ostracizing her from typical daily functions would assist her mind in breaking itself down faster. She grabs the eggs from the refrigerator, then a pot.

“What kind of eggs are you making, grandma?”

“Scrambled,” she says.

I suggest the skillet that’s in the dishwasher instead of the pot. She thanks me and grabs the skillet. Sets it down on the stove.

We resume our correspondence momentarily. Mom is the first to realize that grandma’s disappeared. She saunters down the hall after her.

“What happened Mommy? I thought you were making yourself some eggs?”

“Well, I was gunna but then I figured I’d probably mess ‘em up. So, I left it alone.”

My mother pauses. “Well there’s nothing wrong with trying. You almost had it.” Mom walks back to the kitchen and makes our baby scrambled eggs, grits, and toast saturated in apricot jam.

 

 

In so many ways, we have failed, and continue to fail, our baby. There is something unnatural about begging your superior to shower, so we don’t. Yet, we stay far, far away from her when she doesn’t. We limit our visitors because we don’t know what kind of day she will have on any given day. I am not sure if we do this for her or for ourselves. We down play her mental ailments. Again, I am not sure if the shame is hers or ours.

It is difficult to process and deal with mental illness when you are an African American and a Christian. I only recently learned that grandma had a mental break in her early thirties, a hiccup that my mother dutifully kept secret from me and the remainder of our family. I too have suffered from metal complications: anxiety, depression, and the like. I recall revealing to my mother my obsession with self-harm when I was a teenager. I recall her telling me to pray more. To pray whenever I got the urge to slice razor blades into my flesh.

My mother is not the villain here. As an African American, mental illness is a weakness. A folly that befalls only those who are not strong enough to stare down their own demons. As a Christian, we are to believe that God will redeem us and save us from even the darkest parts of ourselves, so we kneel and we pray harder. Then, we wait. Some of us are still waiting.

There are two halves of my grandma. The half I knew and the half I know. The halve I knew, loved church. Not just on Sundays for a few hours in the morning. I am talking full blown, screaming and shouting, hooting and hollering from the noon to night, from dusk to dawn. Pentecostal church. The grandma I know, loves TBN, church tv. My new grandma loves her bed. She leaves it sparingly, mostly just for food. She and her food lie in her bulky Victorian bed and watch TBN from morning to noon, noon to night, dusk to dawn. Sometimes I try to convince her to leave the bed, to walk to the church next door with me. I hate church, but it is the one thing the grandma I knew loved. The grandma I know is always promising me tomorrow. She’ll go tomorrow. We’ll go tomorrow.

I wish so many things for grandma. Practical things that I fear are already beyond her reach. I wish the sun could shine on her. I wish she would lie in the wet sand on her flabby back and bask in the Florida heat. I wish she would imprint herself in the sand and stand in the ocean. It has only just occurred to me that I have never seen her at the beach.

I have seen her at church, at home. I thought I’d known her. We have traveled to family reunions, stood in the sun at funerals. I wonder if the halve I knew is even less than that, if perhaps it is only the halve I thought I knew. Because there must be something more to a person than family and faith. That cannot be the whole of a person, any person, can it? I fear the halve I knew is the only halve she ever knew. I fear she will die only knowing that small, tiny person.


Tiffany Knowles is a doctoral student at Murray State University. Tiffany studied creative writing at the University of Tampa and English Literature at Flagler College. She currently teaches Developmental English at Barry University. Tiffany resides in Florida where she assists in providing care to her grandmother who’s battling Alzheimers and Dementia.

Create a Medications Management Checklist

Create a Medications Management Checklist

My mother was getting forgetful and I was worried sick about her. On the phone, my mother’s conversation was confused and fragmented. Finally, I flew to Florida to assess her physical and mental health. One morning my mother said she wasn’t feeling well. She walked into the bathroom, opened the medicine cabinet, grabbed the first bottle she saw, and took a pill. “What did you just take?” I asked.

“I don’t know,” she admitted.

When I looked at the label, I found that the medication had been prescribed for bladder infection. One problem—my mother didn’t have a bladder infection. This error was the beginning of her decline. Shortly after my visit, I moved my mother to my hometown to be closer to family, and monitor her meds. I was her family caregiver for nine years, and witnessed her slow, steady, relentless decline.

Sandra Ray writes about the medication issue in her article, “Keeping Track of Medications Safely,” posted on the Today’s Caregiver Magazine website. According to Ray, the management of medications includes awareness of drug interactions, throwing away outdated meds, never borrowing or lending medicine, not shopping for meds, taking all medications as prescribed, and constant checking. “Drug interactions are especially a concern for seniors,” she adds.

I was my mother’s family caregiver for nine years. Today, I’m my disabled husband’s primary caregiver. He takes so many prescription meds I can hardly keep track of them. I sat down at the computer, studied the medications list, and created a checklist for daily use. Each morning I enter the date, and print out the checklist. Before I give him any pills I check the label to make sure it’s the right medication. I put a checkmark by each medication as he takes it.

This simple system works well for me, and may work for you. This customized checklist makes tracking meds easier. What should be on your list?    

  • The current date
  • Name of the medication
  • Generic name of the medication (if one exists)
  • Dosage (number of milligrams, one pill, one teaspoon, etc.)
  • Reason for medication (high blood pressure, skin rash, cough, etc.)
  • Stop date if there is one

Free and fee medication checklists are available online. Some lists ask you to describe the pill—pink, white, yellow, etc. This sounds like a good idea, but it can lead to trouble because many medications are the same color. If you choose to describe the medication, I would add a qualifier, such as oval white pill, white capsule, or large, round white capsule.

For quick access, I write the name of the medication on the top of the bottle with permanent marker. Of course, I make sure the right top gets on the right bottle.

Safe medication management is an issue that pertains to everyone, not just care receivers. We live in Rochester, MN, home of Mayo Clinic, and go to Community Medicine for our health care. My husband’s last appointment was preceded by a consultation with a pharmacist, something we hadn’t requested. “Why are we meeting with a pharmacist?” I asked. According to the nurse, Mayo devised this plan because so many patients were taking medications incorrectly—skipping doses, taking extra pills, or even stopping pills.

A loved one’s health hinges on safe, ongoing medication management, and that’s part of your job. Create or download a medications checklist today!

What does caregiving feel like?

What does caregiving feel like?

When people talk about overcoming disease or disability to live an incredible life, so often the caregivers are left out of the story.

Many caregivers don’t identify as caregivers — we’re so absorbed in the needs of whoever we’re caring for, we forget what it’s like to be us. We take our own work for granted sometimes.

What does it feel like to be you?


Exhausted. Learnt bucket loads of patience over past 8 years. Lonely. Really grateful for current medical schemes in Australia. Sad for those without same privilege.

Janet


I don’t think people want to feel the way i do.

To be me is to be sad, angry, depressed, lonely, irritable, short tempered, sometimes confrontational with strangers, cold hearted, withdrawn and just don’t care about anything and anyone.

This is only for this week. Never would’ve i thought that being a full time unpaid caregiver to my parents for over 21 yrs would be this hard.

Bob


How does it feel to be me? Wow, that’s a challenge. Most of the time, I really like myself. I like the fact that I don’t cringe in the face of adversity. I meet it head on. I believe firmly that there’s no such thing as a stupid question. I also believe in repeating my question to many people in order to get an understanding of the best course of action for my family and myself.

I have learned that taking care of myself is as vital as taking care of my loved ones. I have made conscious decisions in what I eat every day. I take the time to walk, often with music that makes me smile. That’s a very important thing too. Music must be able to make you smile. I avoid music that makes me frown. I see a counselor to take care of my mental health too. I am not afraid to admit this need.

I know without a doubt that I was blessed with a kind heart and do my best to be nice to others every day.

Mimi


I’m a partial caregiver to my married son in Cal. I’m in Dallas. He’s post 2 liver transplants 17 yrs again at 16 yr, severe ulcerative colitis and depression with suicidal thoughts. His wife has trouble understanding so he calls me. I’m an RN also. I’ve flown out when he’s in depression crisis. It’s very frustrating because of distance and stubbornness. Feel helpless over phone.

I’m caregiver also to my 30yr old daughter who is 3 yr post third liver and kidney transplant. She shattered ankle over Xmas in car wreck had 3 surgeries and 4 admissions. That just added more stress. This daughter doesn’t work goes to school part time, too afraid to do too much alone, no friends, no social life and messy to boot. She gets SSI and still on our insurance which is blessing. But she’s my biggest headache. My other two younger daughters have been out on their own since college.

Then they diagnosed my husband last summer with possible dementia. He’s 64 and retest this summer. Been told it might just be him. God willing.

I had to quit work as home health RN because it was too much stress to caregiver at work and at home. I feel lost very alone and all I want to do is complain to people. I go to counselor, take anti depressants and anti anxiety pills. Sometimes I just want to scream or curl up in a ball and sleep. Have other health issues myself as we all seem to and I feel like my tolerance is slim.

Becky


No matter how much support I receive, I still walk this path alone. So I would say a general feeling of isolation is how it feels to be me.

Melissa


I am exhausted, overwhelmed, and frustrated some days and some days are so very rewarding. I do it for love.

Barb


Before I became my disabled husband’s caregiver, I was my mother’s family caregiver (9 years), and my twin grandchildren’s caregiver and guardian (7 years). I am my disabled husband’s caregiver now (close to 4 years). From this experience, I learned that I need to keep doing what I love, and that is to write. So I’ve continued to make my writing career a priority. This decision led me to write four books for family caregivers. Another book, about raising grandchildren, is in production now. Writing makes me happy and when I’m happy, my husband is happy. He is my biggest fan and wants me to keep writing. I will admit, however, that two roles—caregiver and author—keep me jumping. Writing can be difficult because I’m constantly interrupted. Thankfully, I am a disciplined author and have good work habits. These work habits carry over to caregiving.

Harriet


It’s an honor to be able to be my wife’s caregiver and I take pride in how I take care of her. I appreciate the kind words from family and friends about how well I do with my caring for me wife.

On the flip side though, I’m tired and I don’t know what my identity is anymore. I’m so wrapped up in her needs I admit that mine take a back seat, in fact they’re in the trunk. Please understand that I’m not bitter, she didn’t ask for MS.

I know that I should get some help, but in my mind who’s going to do it, and better yet who’s going to pay for it. So I’ll do what I always do and keep moving forward, I realize this is on me and for me to get the help I need. I just wish that we can go back before MS and stay there, when the most difficult thing to do was to figure out what to have for dinner. Thanks for letting me vent a little.

John


This is how it feels to be me.

I first became a caregiver in 2011. When I started I was in a size 10. Now I’m in a 14/16. Stress shows in my face and body. I look in the mirror and don’t even recognize this person. I was married and just became a divorced woman.

I have found out that I cannot depend on my siblings to help take care of our Mother. They have not stepped up at all. I feel angry and resentful. But I also feel strong because although it’s the hardest thing I’ve ever done and I’m doing it.

My Mother battles a horrible disease and it’s in my face everyday. My siblings have not seen one ounce. I know I’m doing the best I can and I know I’m helping my Mother that once helped me. You never know what you can do if you don’t try. And you do whatever it takes when it gets tough.

God has not abandoned me but people have. It is very isolated when caregiving and you are no longer “available ” to others the way they expect or want you to be. You will sacrifice much. And it’s hard to find time to take care of your own needs. But I’m working on that.

I plan to find time to go for a walk everyday. And to drink the water I need everyday. And lose the stress weight. Cortisol stress hormone please stop attacking me. I’m already battling LBD.

Anonymous

Creativity and Dementia

Creativity and Dementia

I recently visited my husband at the long term care facility where he now resides and I was impressed by his latest creative work of art. This time he had all of the things out of his bathroom cupboard, his mouthwash, hair brush, plastic glass, soap and toothbrush arranged in an interesting manner on the counter by the sink in the small “kitchenette” area of his room.

It looked like a small city scape, I thought, with the brush acting like some kind of bridge between the glass and the soap. The mouthwash had the toothbrush carefully balanced horizontally on it in the background.

“Well this is nice” I said. “Why is all of this out here?”

I received the usual response, which was really no response, as he cannot effectively articulate what he was trying to do with the items. This was not the first time I have arrived to find modern day sculptures around his room. Often the Styrofoam cups and plates that snacks arrive on are stacked in an interesting and sometimes gravity defying pile on the headboard of his bed. The toilet paper rolls and the paper towel rolls (full ones and empty ones) always seem to need to be balanced upon one another in a precarious manner.

My husband has vascular dementia and that has robbed him of the ability to remember his friends and family. He knows that I am his wife, I think, but he does not remember my name. After caring for him for several years at our home it became a matter of safety for him and sanity for me that he be moved into a long term care facility.

He had wanted to be an architect when he was young but circumstances led his to being an accountant for over 40 years. I can only guess that the creative part of his mind now wants to express itself when other forms of communication have become difficult.

He also amuses himself by re-arranging the various stuffed animals that occupy his room. There are two stuffed dogs – a black and white one that has long ears and a small white poodle replica. These dogs are often in unique positions and are sometimes on the bed in the middle and sometimes they are tucked into the top. The smaller poodle dog can be found whispering into the larger dog’s ear or on occasion it is the other way around. The dogs may be sitting back to back on some days or they might be in a face to face position. They are usually on the small table that is in the corner of the room and my husband encourages me to say hello to them when I enter the room. He often asks me what their names are and I tell him that their names are Spot and Fifi.

spot and fifi

Recently the dogs have been joined by a hand knit bear that is sporting a pair or red pants and a multi coloured sweater. The bear does not seem to interact with the dogs but rather enjoys sitting on his own chair or sometimes he is on the headboard of the bed. I have no idea where the bear came from but he seems to be a permanent resident now. I now have to state his name each time I arrive – I have decided to call him “Beary”.

I find it quite amazing that he is able to entertain himself this way when there are so many other things he can no longer do. I would never have thought that he would have anything to do with stuffed animals as I am sure his sense of masculinity would have precluded that when he did not have this disease.

My husband does not want to interact with the other residents doing crafts or exercises but he does seem to like his activity of using items in his control to build structures. He shows no interest in the Legos or the Lincoln logs out in the common area.

If you have someone in care I would recommend that you try to find something in the creative vein that they might like to do. It could be as simple as putting photos in and out of the photo album with the pockets that you slide pictures into easily. If you have photos of family members or things that the resident likes such as golf pictures, landscapes or cityscapes, dogs or cats or perhaps certain types of cars. It might help to write on the back of each picture in large printing who or what the pictures are. A fun activity could be to sort out all of the people pictures from the pet pictures.

Perhaps when you visit you can empty out a drawer and the two of you can fold the clothes and organize them and put them back in the drawer. I know that my husband is a very tidy folder and we can spend some time getting that task done. It seems to give him a sense of accomplishment.

I also have brought a target and some bean bags that you can throw through the holes in the target. We do not keep track of the points but it is always fun to see how far away we can put the target and hit the holes with the bean bags. Even more interesting is finding the bean bags for this activity since they sometimes end up in very different places from where they were last placed. A good game of “Hunting for the Bean Bags” usually starts this activity.

If you have a person who used to like to knit then a large ball of wool and large needles could be brought in and the first couple of rows done on a simple knitting pattern, I saw a show where a person got all kinds of seniors in care facilities making squares of knitting and she then felted those squares and made them into purses and other things.

On my next trip I plan to bring in some poker chips that are various colours and have them all mixed together in the box and ask that my husband sort them out into the proper colours on the rack they go in.

If you have a person that you care about in a long term care facility with dementia then I would encourage you to try to find their creative side. It may surprise you to find out how they can still be imaginative. Dementia may have robbed their mind of many things but it seems it cannot quite put out the spark of creativity.


You can learn more about Lee’s experience caring for her husband in Dementia in the Family.

Is there a better term for caregiver burden?

Is there a better term for caregiver burden?

You’ve heard the term “caregiver burden”, right? It’s the stress and strain that comes with caring for someone who is ill, elderly, or disabled. Lots of people don’t really like it, since it can easily seem like the person you’re caring for is a burden.

I was thinking about this while reading the story of The Perfect Servant. She’s really honest about what a burden caregiving can be, but it’s also clear that the love her and her husband share is incredible. We don’t want the person we’re caring for to feel like they’re a burden or to further stigmatize their condition.

Is there a better term? How can we talk about the stress of caregiving without placing blame on the person we care for?


I am reaching a new level of care for Deb as she is incontinent of bowel and bladder to the point that she has lost all control. Her MS is putting her body thru some new changes. Her fatigue is such that a lift may now be getting close. My own ability to care for her as a 66 year old man is being called into question. I bring this up to address the word “burden”. Is it now a burden to care for a woman I have been married to for over 32 years, who has always given more to me than me to her and has been in a w/c for over 7 years and I am her nearly full time caregiver. To say it is not burdensome physically and emotionally is naïve and dishonest. However, this burden is filled with that intangible gift of love we have been given and I want to share and honor that with her.

Jerry



It’s like I have been trying to instill in my son, there can’t be blame. It’s an awful word to start with, when you consider the meaning. Things happen, it’s called life. It’s called what God and Jesus hand to you and expect you to do right by. I firmly believe in both God and Jesus. God picks who we are, boy or girl, short or tall, autistic or not. Jesus gives us our heart and soul, and expects us to love unconditionally always.

My son didn’t ask to be autistic any more than my dad asked to suddenly grow weak and unable to take care of himself 100% of the time. I certainly did not ask to deal with chronic pain, PTSD, have my neck fused, and more. Blaming or saying someone is a burden disrespects God, Jesus, and the person who has become dependent on others in daily life.

I would encourage someone to seek counseling because it really helps. If not counseling, find that someone who would not mind being a sounding board. Not to give advice as much as there to listen to the struggles, the
fears, the joys and the frustrations of being a caregiver.

Most important of all, find that time for yourself. 15 minutes here, 15 minutes there. Read, listen to music, watch a favorite tv show, it doesn’t matter as long as you are giving yourself time to focus on something other than the person you are caring for. Balance is key to not feeling the need to use the word blame.

Mimi


How about “moral responsibility”? Caregiving applies to the circumstance but the heavy feeling of a burden comes from outside the role of a caregiver. These emotions stem from a desire to believe in hope for humanity. That no matter who or what we are, when faced with a need, at the stake of human condition, we will take action… We care cause we relate to the fact that might easily be the one in need and I hope the same moral conflict in others will still exist and someone will be kind enough to help me!

Ashley


As a caregiver to a loved one, there are different levels of emotion before the sense of burden comes along. And once it does, then there’s guilt for feeling burdened. That comes from not getting those much needed breaks for ourselves.

Teresa


There is a wide range of emotions that come long before one falls into the ‘burden-guilt’ trap…but something we don’t talk about often for caregivers is the need for self-care. I was fortunate enough to hear an interview with a caregiver (on CBC – Sunday Edition) just a few months before my caregiving journey started in earnest. I learned a few things: the importance of accepting help and the importance of taking time for myself. I’ve only faltered when I didn’t do one or the other (or both!)

Honestly – I don’t feel burden or ‘why me’ … I feel blessed that I have so much support in my life. For my husband, I only feel love. As much as I’ve been his caregiver, he is my rock in so many other things.

I know I am so very fortunate. and for that I’m grateful. For me, there is no burden, just love and gratitude.

Sylvia



I am a nurse practitioner. In the field of nursing we call it “burnout” when the burdens of caring and providing for others fatigues you to the point of exhaustion and inability to often meet your and/or your family’s needs.

Donna


It is a challenge.
It is a burden.
Above all of that it is a responsibility.
Caregiver Responsibilities.
We are the capeless heroes that never get a casserole.

Kim


I have given care for years to various ones. First as an RN and then as a mom who had a terminally ill child, then, my parents. Still in the midst of caring for my mom. I liken the fatigue I felt with my son, as PTSD. I didn’t realize it at the time. Burnout is another term I’ve used. Fatigue is yet another term. I don’t think I’ve ever placed blame on the person I’m caring for, but more on myself for not being able to meet all the challenges.

I love what I do, I would not want it any other way. What we, as caregivers extraordinaire, need is the ability to find time away to regroup and recharge. We need the ability to not go broke in caring for our loved ones. That alone, would remove stress from our lives. Tax laws should be changed to give us a break on this. We are keeping our loved ones from becoming a burden on society on the tax payers dime. I try to remember that I am serving my Lord and Savior as I care for my mom. I am honoring my parents, as is commanded. May God bless each of you, as you care for your loved ones.

Sherelyn



It does seem like any concern is a complaint when it is not. It is just a plea for how something can be done better or easier for both. This is definitely a learning process but one that has no room for error on either side.

Diane


I place all the blame on myself, why not everyone else does. I’ve been taking care of my parents for 20 plus years, I even bought the house next door to them for convenience.

My dad passed away last March on my mom’s birthday so now it’s just mom. She has COPD and its very bad. She only goes on 3 rooms of her house and has anxiety issues that prevent her from leaving her house, period. This is a constant battle with her because she does not allow me to be gone because she will panic. My family is headed out the door at the moment to go on a much needed fishing trip and I get left behind. I do not resent my mother for this.

I am sitting here waiting for her to ring the wireless door bell I have for her letting me know she up so I can do our daily care routine, I do not resent her for this. I love my mother and would never leave her in a million years, but it’s exhausting at times because she has no zest for life, all she wants to do is smoke (she’s been quit for a while now ) she asks and I say no, she resents me for this, I feel guilty because I am not giving her what she wants, it’s my fault she’s not happy and she lets me know about it to, this is where I resent her attitude towards me.

If I give on, she will end up in the hospital just like every time before and its my fault, my family says so, and so do I. Its not burn out exactly, it’s not knowing what to do when she gets like this and no matter what choice I make it comes down to her health or her happiness.

Genie


My burnout and frustrations came from family not working with me as a team to help take care of Mom … And accusing, ridiculing and blaming me for the dysfunction.

Linda


I’ve been a caregiver for six years for my,now, 91 year old mom. Once she said to me; “I feel like I’m a burden to you.” I knew that denying that would be a lie so I said in a soft and loving way; “yes, sometimes caring for you is a burden just like I was to you when I was young and you were raising me as a single mother. But that doesn’t mean we give up just because something is challenging. Our love, commitment and loyalty means we stay and we persevere. My dog got me up three times last night and that was a burden but that doesn’t mean I give her away or that I don’t love her.”

My mom nodded and replied; “I’m so grateful to you.” And my response was; “I love you and I’ll always be here for you.” Something my two older sisters know nothing about.

Kellie


Caregiver stress syndrome is a much better term. There are degrees of it just like any other syndrome. Burden allows the greater society to continue to ‘blame the victim’. We blame the person who took on the role of caring for another person instead of providing adequate services and supports.

And for those who don’t want to be called caregiver: this is why we do it: in order to access services and supports we have to call the person giving of their love, time and effort something. The political will to support ‘grand daughter’ or ‘husband’ or ‘wife’ doesn’t exist in the US.

Those of us in caregiving research often wore the same shoes and walked the path. We use the term caregiving or care partner or dyadic care in order to try to get the local, state and federal funding to assist those who provide care. We don’t do it without thought.

Jeananne


It is what it is. And it’s not the patients fault, but we have to acknowledge the true weight of what caregivers go through.

Michaela


You can come up with something a little more tactful, yes, but there’s no positive spin on what it really is.

Penny


 

What does it feel like to be me?

What does it feel like to be me?

What does it feel like to be me?

The first word to come to mind is “full”. Frustrated is a close second. My 91yr. old mother has lived with me for six years. Her dementia has stolen her reasoning, memory, logic and ability to track what I’m saying. Some have told me that “caregiving” is my identity.

I don’t want it to be. I want it to be what I do and not be so encased in who I am.

What does it feel like to be me?

Sad a lot of the time as I get covered in anticipatory grief. The grief ebbs and flows in phases and I’m just now realizing that those phases will pass. I know life will have challenges and struggles but I can choose whether to be miserable or not.

What helps is focusing on the moments of joy I have with my mother today or in a brief moment. Those moments will be kind to me after she’s gone and bring me solace.

What does it feel like to be me?

Tired. Mentally, physically exhausted. I try to make time to do what refreshes and restores me, like gardening and going to church, lunch with friends, a massage, the gym, weekend away with my husband and the kids. It’s difficult when I’m so fatigued but once I push myself to do it, I always feel better.

What does it feel like to be me?

Lonely. Even when I’m not alone. Few people in my life truly understand what the experience of caregiving is. Friends ask how my mom is doing but rarely ask how I’M doing. And there are those times when I, too, get tired of hearing my own voice expressing my frustrations and irritations. Sometimes the loneliness is a loss of connection with myself. I’m an introvert and it is vital that I have time alone to reconnect with myself, my thoughts, to process what’s happened or be distracted from the chaos and unpredictability of it all. Those days to reconnect with myself are far and few between.

What does it feel like to be me?

Grateful. At the most challenging time in my life (caregiving for my mom) I experienced the greatest blessing in my life–I met and married my husband. My mom’s friend will take her for a few days to give me a break and I’m so thankful to her for that. I”m grateful for having good health to be able to continue caring for my mom. I’m still practicing acceptance for this struggle and pray for patience and stamina. This experience has brought me back to a connection with God and I don’t think anyone could be a caregiver without a connection to some higher power.

Thank you,
Kellie

Terminal Determination

Terminal Determination

The saga began Wednesday morning in March 9. Hours of screaming. Calling for the ambulance. Emergency room admission. Morphine drip for the pain. CT scan. Calls to calm his hysterical mother. Five-hour surgery I’d been told would just be a couple of hours. Surgical ICU for a week. Steve was put in an induced coma so all of his strength would go to healing. I sat in the alcove in his room and watched him for days; swaddled in white linen with tubes coming in and out of every part of him.

On Friday afternoon, our gastro doctor told me to go home and get some rest. His exact words were “Steve is circling the drain.” What? “He’s gonna have to fight to pull through the weekend. If he does, we’re in the clear. And you’re going to need your strength.” I couldn’t breathe. It was like I was punched in the gut. All the air was knocked out of me. I must have gone straight into a state of denial because “I knew” that Steve would pull through. I wouldn’t have it any other way.  I’d spend my days sitting beside him as long as needed to secure his complete recovery.

When he was rushed to the hospital, the doctors thought it was acute appendicitis. I told them he’d been self-medicating for diverticulitis for a week and the surgeon discovered it was peritonitis from his CT scan.

I’d sit and knit in his room from 10:00 a.m. until I left about twelve hours later. The nurses loved me. We’d bonded and I was a great help to them. Steve’s bed was right in front of the nurse’s station and the room had a little alcove I could hide in after visiting hours were over. No one ever kicked me out.

Steve looking like he doesn't have a care in the world, despite a terminal cancer diagnosis

On Friday morning when our internist was doing his rounds, I was already at the hospital. He needed to speak with me. The CT scan the surgeon had taken on Wednesday was shot a little high and shown cancer in the middle lobe of his right lung. After I caught my breath I conveniently “forgot” this until Steve had recovered from his surgery, was home healing and we began making visits to all of his physicians.

First the surgeon—Steve had done beautifully and was given a clean bill of health. Then his gastroenterologist—clean bill of health with instructions to change his diet and begin exercising. Finally, we went to our internist who also gave Steve a clean bill of health and told Steve to get dressed and meet him in his office—which was par for the course.

i look less relaxed than steve does. I knew I was going to have to live after he passed and create a new life for myself

But this time, he told us that a cancerous growth had been found on the middle lobe of his right lung and that he needed to find a surgeon and oncologist as soon as possible. Now that the wounds were healing from his surgery, it was time to address the cancer.

A big part of caregiving for me was having the ability to go with whatever was thrown at me. The 12 Step program’s Serenity Prayer—“God grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference,” saw me through.  It was that simple; that cut and dried. With whatever “Higher Power” I believed in, the prayer made perfect sense. It made it possible for me to go with the flow. To do all I could do to affect change acknowledging there were some things beyond my control.

That was the key. I didn’t relinquish control, I just needed to recognize when things were beyond me. All I could do was my best and then let go.

The word “cancer” rang out as a “death sentence, “ but I went to work finding the best oncologists and surgeons I could. We spent about two weeks interviewing leaders in the field in New York City and made our choice. We learned that if the middle lobe of his right lung was removed that Steve would be fine—for a while—but that this cancer would return and ultimately kill him. We heard that from eight different specialists.

Going through surgery for peritonitis and waiting for that to heal to be able to go through surgery to reverse the temporary colostomy he had needed to be able to wait for the reversal to heal to be able to have the middle lobe of his left lung removed took six months. After that, we’d be able to have peace of mind for a while.

Being told you’re going to die from cancer—eventually—doesn’t mean you just sit back and wait for it to take you. First there were scans every three months, then every six months and once we’d gone a year and a half cancer free, we got a little cocky. I was still doing research on new protocols, but with every visit to the oncologist we’d be told why “That’s not an option for Steve.” That didn’t stop me from looking for the best care available. After Steve’s second six-month scan, the cancer was back.

This, of course, did not make us happy, but we kept on plugging doing all we could to extend Steve’s life. Surgery in Boston (where his original surgeon had relocated), chemo and radiation in New York. It was his life but I was the one who was going to be left. From the time of diagnosis I knew that this day would come and other days like it, when we’d be told this or that protocol wasn’t working any more and the cancer was spreading.

In September of 2010 he started pinpoint radiation therapy. The cancer had spread to his spine. After this, there was a new chemo regimen. The one major blessing in all of this is Steve never looked sick. He never lost too much weight. He never lost his hair. His complexion was always ruddy so he never looked pale or sickly. For all the world, he looked like a healthy man and was treated as such.

Steve after the first three surgeries, but before the fourth

Steve did a weekly TV call-in show for 35 years and he had many regular callers. Because he looked so well, not one of them knew he was ill. For one hour every week, he could feel free of the disease. He could be “the old Steve.” He did his show until two weeks before he died. It was his best therapy.

Waiting for chemo sometimes took hours. We’d have to go through the motions and have Steve’s vitals taken and then sit until someone could see us. When his doctor saw him, Steve asked “How long do I have?” and when the doctor told him “Maybe three months” I didn’t believe him. I lived with this man. I knew whatever was going on, Steve had weeks left to live, at best. While he took his treatment, I slipped away and found a P.A. who knew me. I confronted her. “Tell me the truth. I don’t think he has months to live. I’m his wife. I’m the one who will be left. How can I prepare for what I know is coming if I don’t know the truth? I need to know. I won’t tell him.” She turned to me and said “No more than a month. Maybe less.” At last. The truth, though ugly and sad, was something to hold on to.

About a week later, the oncologist told us “The cancer has gone to your spine. There is nothing more we can do for you except make sure you’re not in pain.” I’d heard those words before right before my father died. “We’ll make sure he’s comfortable” was another familiar comment. We left the doctor’s office, went home and cried together. We’d both done all we could and both given it our all. The fact that we had gotten to a place in our relationship where there was no blame being assigned, much appreciation and open expressions of love. I was going to have to live with the remnants of terminal cancer, but I could live with myself.

All my work and efforts on his behalf had just been part of the natural order. Steve let me know how much more capable I was than he had ever realized. He let me know that the thing he felt worst about was leaving me alone. There was so much left to be shared. He was about to turn seventy. About to begin to take it easy and travel to all the places we’d dreamed about.

Of course the idea of what my new life would be like had crossed my mind. I felt no guilt thinking about the future without him. After all I’d done everything within my power to keep him alive and we both accepted there would be life for me after Steve. But I was grateful; grateful that he’d never really looked ill; grateful he’d had it easy compared to some other cancer patients we knew; grateful he wasn’t in pain. But when the dementia took hold, I knew it was a matter of weeks or even days. I hated the thought of living like this for too long.

My Steve only made brief appearances now and then. From midnight ‘til dawn I lived with a paranoid maniac. He slept during the day—pain meds exhausted him, as had his episodes of dementia the night before. Of course he didn’t know what was going on, which made it all the more painful for me. This brilliant man was seeing spacecraft outside out bedroom window; or Vietnamese women with cats padding about the front of our apartment, stealing things. Days later he was hospitalized and ten days after that he died.

I’d learned to “play it as it lays.” It was the only way for me to cope. I’d done my very, very best and had zero regrets. Steve’d given me permission to live a good life after he passed. He’d told me who I couldn’t date. He’d told me to ask for help when I needed it. If he couldn’t be there, he wanted me to feel taken care of nevertheless. I’ve followed his instructions. I have a life. I try to give back. I have a mission. I have wonderful memories; but I have a future too. Steve wouldn’t have wanted me to waste it.

How did we become family caregivers?

How did we become family caregivers?

A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.

The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.

So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?


I became a caregiver when I realized no one else was going to be able to fill the need.

I taught full-time in a tenure-track teaching position at a prestigious university. As I prepared my dossier to go up for tenure, my dad called to tell me that he had been in the hospital. He had had a TIA or “mini” stroke, but was ok. Meanwhile, my mom’s Alzheimer’s was progressing faster than expected. A week later, was spring break at the university, so went “home” to see the folks. As I walked around their house and saw how poorly they were managing, I knew I had to make a difficult choice.

I walked away from my career and put my life “on hold” as it were to care for my folks. It was a choice, but it was also true that choosing not to help them was not an option.

Andrea


Not a choice an obligation to the ones we love

Maggie


I became a caregiver for my Mother out of choice. Plus it was also a necessity. I was the only family member in the area and just sort of “fell into” the job.  It was never a “job” as I had promised Mom to take care of her.  I was able to do so as I am disabled so was not working.

The Caregiver Space was such a huge support for me, I received so much encouragement and generalized help.  The course the VA sent me through was also a huge help.

Since Mom’s passing, I have become a part time caregiver for my neighbor who had a paralyzing stroke. It is great to be able to help them as they were always there for me when I needed them.

JeanAnn


I became a caregiver for my widowed Father 4 years ago when he was 91. Although I have 4 siblings… no one stepped up and he was not doing well on his own. I was checking on him daily but when we moved out of state for a couple of years we had no choice but to have him come with us… 4 yrs later he is still here. We have moved back to our home state.

Dementia is getting worse and it is a lot harder to care for him. He is getting combative. Everything has to be planned around his needs. My poor husband is really over it. He is retired now and we can not enjoy our retirement. We can not just go out for the day or take a spontaneous trip to see our grandchildren and my siblings still have not stepped up. He does not have a lot of money so hiring help is out of the question… we are paying a CNA to come 3 days a week to bathe him now as he has refused to bathe but says he already did.

Barbara


I started caregiving in 2008. I went to work for a company that cared for folks with developmental​ disabilities. It is a rough field but managed stay for a year and a half. I decided to leave there when I realized my own physical capabilities. I was 57 at the time.

I started caring for mostly for my mom and my dad as his health declined. I made a major move to Colorado for them. My Dad passed away October 2013. I continue to care for my mom today. She is 84 and has physical
disabilities and so far I am able. We lived in my brother’s house and he took care of us. In July of 2014 he had medical issues going on and I cared for him too. He passed away in November 2015. He was the baby of our
family. After helping her settle things there, I moved my mom and I back to New Mexico. Closer to my daughter.

I think sometimes about how much I want to live my life but she would alone and where? I allow myself to feel the anger, resentments​, try to stay positive and do for me what I can. I don’t have the answers. I have a couple good friends in similar situations that are good support. I get up every day and put one foot in front of the other. None of us knows what life brings so it’s best to enjoy something in each day. Life is an adventure.

Thanks for reading and reaching out.

Kathy


I became a caregiver when my wife was diagnosed with Alzheimer’s.

There was no choice in the matter, I did what a husband is suppose to do.

Duane


I didn’t have a choice at being a caregiver. My sister was married with her own family. Since I was single, the duty fell on me to help my dad with mother and now, I take care of him.

Peggy


In my paper (delivered at the Alzheimer’s Association and American Society on Aging) the topic of the “Moral Dilemma of Caregiving” is discussed. The ethical dilemma comes when the caregiver is forced to choose between 2 wrongs. For instance, giving up a source of income to become an unpaid, full-time caregiver.

For myself, caregiving meant moving to our new retirement home and bringing Mother with us, instead of putting her in an excellent facility where I had worked.  I’m still paying for that decision in the lack that social support I have been able to nurture for myself in the new location.

Then Mother died, and my husband was given a terminal diagnosis.  In the space of a year I had lost my jobs, proximity to family, my tribe, my Mother, as well as my identity as an esteemed organist and a geriatric social worker with credentials in assessment and national presentations.  Gone. Now I lead hikes…and read emails on “caregiving”.

Marj


11 year ago my wife had a liver transplant, now we’re told she​ has cancer, plus heart problems. I didn’t ask to be a care giver, it just happened to me. Holding down a job and care giving.

Douglas


Death made me a family caregiver twice. After my father died, my mother struggled, became unsafe, and I moved her to Rochester, Minnesota. My twin grandchldren’s parents died in separate car crashes, and the court appointed my husband and me as heir guardians. We did this for seven years.

In 2013 my husband’s aorta dissected and he had three emergency operations. During the third one, my husband suffered a spinal cord injury that paralyzed his legs. I’ve been his primary caregiver for nine years. Sometimes I think I need a caregiver myself.

Harriet


When I got married I made a choice that I would always care for wife no matter what. Diabetes was newly diagnosed a month before our marriage. Over the years, the diabetes evolved into more and more issues (renal failure, kidney transplant, major stroke, breast cancer and finally seizures. Not once did I doubt my promise or commitment in the forty seven and a half years that we had together.

Bruce


It was something I had to do. My husband’s Atypical Parkinsonism impairs him but not fully enough to warrant outside help…yet. However, driving, dispensing drugs, some grooming/dressing, use of cell phone, tv remote, and computer all require assistance. Add to that the daily, ‘where did I put this,’ (many times a day) AND, last but not least, vision impairment from coincidental right eye retinal vein occlusion and neurological effects if vision in ‘good’ eye
….and you get spousal caregiving. 🙃

Melissa


I became a part time caregiver for my mother when she had a stroke in 2003, at that time I was working as a Licensed Vocational Nurse and would bring food to my parents and bathe my mother before I went to work during the week and then would go on weekends to care for her.

My father started having symptoms of Alzheimers disease a few years later and I became his caregiver as well. My father passed in 2010 and I moved my mom into my home and I was forced to resign from my job, as I could not find a qualified caregiver to stay with her while I worked.

That was 7 years ago, I continue to care for my mother and her health has continued to decline. This year she had a UTI in January and was in the hospital for a few days, I took her to her doctors office for a follow up appointment  in February and she got the flu, she became dehydrated and was hospitalized. I opted for her to have a feeding tube, but the doctor had to do a Hiatal Hernia repair first, this was a major surgery for a 95 year old. She came home and a few days later developed a bowel obstruction which required another major abdominal surgery.

She is home now and slowly recovering, she has had some TIA’s which has left her combative and confused. I became a caregiver as my parents did not have long term care insurance and could not afford  to hire quality caregivers. I had worked in a nursing home as a charge nurse and had decided that that was not an option for my parents.

I am fortunate that I have the training and knowledge to give my parents loving care in the home setting for many years. This has been a strain on every aspect of my life, my marriage my profession and my dream for further education. I am happy that I had the opportunity to provide the care to my parents, but hope and pray that my children do not have to do the same for me.

Theresa


I became a caregiver when my husband became seriously ill. That was 20 years ago and his health has declined dramatically over time with many added health conditions. I continue to be his caregiver and will be forever.

Linda


I became a caregiver when my middle daughter, Amy, was born. She has a chromosome disorder that has affected her physically and developmentally. She is non verbal and functions like a 2-3 year old. Amy is 33years old and lives at home.

When Amy was 4 years old, my husband and I adopted Ashley. Ashley has cerebral palsy, is deaf and nonverbal. She functions like a 9-12 month old. Ashley is 28 years old and lives at home. As my husband and I get older, the caregiving is getting harder and really taking a toll on us. I love my girls with all my heart but it is definitely hard!

Lisa


I had a choice to become my moms caregiver. It was either me or a home. I
chose me. She needs one on one care all day every day and the best way for
her to have that care , was for me to do it.

Carol

Caregiving and resentment

Caregiving and resentment

Resentment seems to be a regular companion for caregivers.  It comes in flash points when we feel presumed upon, undervalued, and unappreciated. That resentment, however, cripples us as caregivers far more than it negatively affects others.

A pianist for even longer than my three decades as a caregiver, I often find myself at the piano working out the kinks in my soul. The music won’t come, however, if my fists remain clenched with resentment. Something beautiful flowing from my hands and heart requires opening both, along with a willingness to let go of resentment.

Each time my hands open to play the piano, it signals to my heart that it’s okay to release grudges, slights, or bitterness.  It’s not easy, but the music flowing from that decision is soothing and healing to my soul—as well as listeners. We all possess the ability to make and enjoy beautiful music and art in our own ways. As caregivers, that beauty is not limited by the harsh circumstances we face and carry, but rather limited only by our unwillingness let go of resentment.

A goal I’ve set for myself as a caregiver is to one day stand at a grave. While I can’t guarantee outliving my wife and ensuring she and our sons aren’t left to deal with her massive medical challenges without me, I can, however, guarantee a better chance of doing so if I live a healthier life. Part of living a healthier life is avoiding carrying resentment. I don’t want to stand at that grave with clenched fists resentful at her, others who didn’t help the way I wanted, myself, or at God.

Letting go often starts with the simple act of opening one’s hand. 

The heart will follow.

Second guessing family ties

Second guessing family ties

When my boyfriend came out to his family, his father attacked him. That was nearly 20 years ago now.

For a long time he’d make attempts to get in contact with his siblings or his mother every couple years. They never went well. They were only willing to welcome him back into the family if he renounced his life and married a woman. He would end up having to block their phone numbers after their disappointment turned into threats and condemnation.

A few years ago, he decided he wasn’t going to contact them any more. We’d gotten married, bought a house, adopted a dog, and surrounded ourselves with a great group of friends. We had our chosen family and that was enough.

Last year he started having vague symptoms that something wasn’t right. He went to the doctor a few times before things were taken seriously. We knew something was really wrong, but weren’t surprised that his generic complaints weren’t getting him access to the tests we thought he needed.

Finally we got a diagnosis. It wasn’t a “good” one.

We thought we’d put the family issue behind us. But now we’re back to mulling it over.

Do we owe them a last chance to make amends? Does he owe himself one last opportunity to have his family’s support? Or is it just inviting trouble into our lives?

While we’re legally married, we’ve heard enough horror stories of long-estranged family members suing spouses for assets or fighting to take back POA. The potential for danger seems high.

But I know he’s always held out hope that one day down the line they would learn to accept him. There is no “one day.” It’s now or never.

Is becoming a caregiver a choice?

Is becoming a caregiver a choice?

Becoming a caregiver just happened

I was 23, had a five year old and a 2 month old. My mother was diagnosed with stage IV colon cancer, and her “husband” decided he didn’t want to clean up crap, and I was already an “expert”. Sadly, she passed away 2 months later, and her “husband” left before her funeral. Look ahead 30 years later, and it was my turn at stage II colon cancer, and my two girls were thrust into being my caregivers. My oldest had three little ones under 10, including a newborn. My hope is that the pattern doesn’t continue. But … if it does, I know my grand daughters will pull their sleeves up and take care of their mom, too. – Joyce

It just happened, my sister asked if I wanted to quit my job to take care of mom and I said yes. I had 5 great years with her before she passed. 😇 – Terry

I went to visit my mother after I graduated high school and her caregiver said “oh thank god you’re here” and left and never came back!! So I got thrown into the role and did it for 10 years!! – Koren

It happened but i am thankful because no one would’ve took as good of care of them as me. God bless the staff at their nursing home. – Stacey

Just happened as my grandmother got financially destroyed by her youngest child/son! Her place was so in ruins & she was fallin fast in her health dementia/alzheimer’s! Its been a constant uphill battle not only with having to redo her home, but taking care of her & her health! Its 6am to midnight daily! I agree, we are so tired, my wife is now by my side through this journey! Never give up! 😥☝🏽🙏🏽☝🏽❤️ – Duane

My 26 year old daughter requires 24/7 care now due to Muscular Dystrophy. She does have nurses, but I am also a care giver for her. I had to give up my career. I love her more than anything in the world – but I will be honest – I am tired. I am 63, went through breast cancer treatment two years ago. I can’t afford the medical coverage or the medications. I have about $8000 worth of dental work that needs to be done. I took care of both of my parents until they passed. I have taken care of everyone through the years and not having any brothers or sisters – I have no one to take care of me. Yep. I am tired. – Debi

I was 25 newly married and my mother was getting lost driving to the same job she had for 20 years. 3 years later I’m sitting here frustrated I can’t get the stupid railing together from her falling out of bed. She doesn’t even know I’m her daughter these days. – Shanna

It just happened for me, when my husband had an accident and lost his job and went into severe depression. Neither of us asked for it. We don’t really want it now, either, but we have learned to accept. We are some of the lucky ones, as we are doing things that we love. Hubby potters in his garden, and in his shed making things. I do some sewing, making things for family and others. But, oh my, the years have taken their toll. Hubby’s physical health has taken a battering, and my physical and mental health has too……after all the stress of having to make some very big decisions on my own, which was new to me. We are coming out the other side, not sure of what the future will be for us, yet. Hubby is nearly retiring age, but I do hope his mental health continues to improve. – June

It just happened, I was a friend and saw someone needed help. I think God puts people in our lives for many different reasons and this must be the reason I’m there. – Mary

In my case, it just happened. I’m blessed that I am able to stay full time with my dad which enables him to stay in his home. My mother is in a nursing home and we visit daily. – Marie

An old roommate suggested I try in home care and that was 3 years ago. Now I’m HCA certified working towards CNA. – Jean

My son was born with a rare genetic disease; and now he is 22 years old and he is living at home and I was awarded the privilege to be his full time caregiver. – Brenda

It just happened. My husband had 2 strokes one week apart. I wasn’t prepared. – Tanya

It just happened….although frustrating at times, I wouldn’t have it any other way. Blessed to still have all these moments with my mom. – Penny

At a early age I had to take care of my little brother ,then my great Grandma, just over the years I became a CNA and Caregiver. – Anna

My husband became a wounded veteran. Life happens. We don’t choose for illness, disability, or old age to remove ability to daily living activities. It just happened to all of us. – Mary

When I got married and spoke my vows “In sickness and in health for richer or poorer until death do us part”. It’s been 8 years since my Bill’s illness and 5.5 years since he passed away. I had no help and held down my full-time job in the process and I was his primary caregiver and I’d do it all over again if I had to. – Lucy

It just happened! I did work as a caregiver and companion for the elderly about 11 years ago. Here I am doing it for my husband, and soon my mother. – Donna

My daughter was fell ill five years and was undiagnosed two of the five years. We found she had a rare genetic syndrome. She was only 13-1/2 at the time. Normal child until then. Something came and took her in the night…it seems. Sad, we try all the time to help her come back to us. But it is as if she is missing and everyone called off looking for her because she is rare and in a league of her own. I must cry every single day. The amount of daily grief is almost unbearable. But even worse is knowing how much she has lost. How much she suffers. How very hopeless the future looks. We just keep moving forward and praying for answers. Praying for her to recover. Praying for her not to suffer. It’s not as if I can say she lead a long happy life…ugh. This is her story and she is my hero. I pray God gives me the strength to continue walking with her until we get back her life. – Faith

It just naturally happened and was such a blessing. It allowed me to have more time with my best friend. Even on the hardest days, it helped me grow. Then God chose him to go to heaven. This is much harder now not being one. – Christy

Just happened found out my son had muscular dystrophy at 5 but our lives changed most at 9 when he lost the ability to walk. And now he is 20 and full time care. But I wouldn’t change a thing. This world could not handle my boy on his feet the place would be on fire. His wheels keep him grounded. – Erika

Just happened when hubby got cancer and now terminal. Then Mom got sick, too, and lives with us. So I have two now. – Cathleen

It happened when my husband was diagnosed with Alzheimers 4 years ago. We don’t have any kids so I am the one who is here for him. – Lynne

It just happened when my husband’s dementia was diagnosed and got worse. I love him and would do anything for him “till death do us part”. – Jenny

Caregiving just happened. I was 12 when my mom had her first massive heart attack and open heart surgery. When I was 18 I became a live in caregiver for a lady and lived with her almost 7yrs. Afterwards I became a live in for another lady for almost 4yrs. I just went from one person to the next leaving no space between patients and began caring for another woman for 2 1/2 and am currently a live in since Jan for another lady. This just seems to be my life’s purpose. I’m not married and have no children just a long list of “lil old lady loves” and wouldn’t know what to do if my life didn’t revolve around caring for someone. – Cameo

Just happen this time, my mother-in-law had a stroke, we moved in with her to take care of her, she now is in stage 3-4 dementia. I have been a caregiver 3 other times in my life to family members. – Diane

It just happened slowly. My husband stated to decline and I was there. 20 years later I am still taking care of him and trying to work part time. Not how we pictured our “Golden Years”. – MaryBeth

It just happened, hubby had a stroke July 2015, I didn’t even think about it, it was a given that I would give up my career to care for him, no way was I putting him in a home, hospital. Staff and social worker said I was “MAD” but I married him in sickness and in health, till death do us part! It’s hard at times but love him with all my heart! – Pauline

Becoming a caregiver was a choice

My husband and I made the choice to take care of his mom. She passed this past Dec. We are now helping out with my mom. You just do what you know is the right thing to do! – Linda

I decided to care for my mom. It was a difficult process but it was the greatest gift I gave myself. – Leuqar

Both I chose to marry my husband in a wheelchair, I chose to be a foster mom to possible special needs child and is getting more complex days before his adoption where we commit to be his forever home. – Kirsten

I made the decision to marry my husband, my prince, my best friend. Knowing that I would have to take care of him. Never occurred to me how much work it would be. Some days I’m physically and mentally and spiritually drained. But I made my vow. – Stephanie

I decided! I gave up nursing school to be the voice and the grunt of the people! I am a helper and always will be! – Michelle

I was an only child, who cared for her parents as they aged, while working full time in a high stress career, managing three daughters and helping in their lives, and married to my hubby, who already had parkinson’s. my parents passed, 5 years apart, while my hubby’s health deteriorated. he had a triple bypass and ablation (MAZE) procedure; later, a deep brain stimulator, shoulder surgery, etc. i retired early, 3 1/2 years ago to care for him. he was no longer able to do his own meds (things kept getting missed or screwed up), and getting his own meals (even after i prepped them) was too much for him. since then, he’s been diagnosed with “mild to moderate” dementia, probably from his parkinson’s disease. that explains much of the losses we’ve seen in his abilities. so, it “just happened”, but this part was anticipated. some days i think his disease is killing me faster than it is him, but we just keep marching on. – Marilyn

I was blessed 21 years ago with the very house next door to the one I grew up in. My Dad, Mom,& Grandmother still lived there. My grandmother then needed round the clock care and I stepped in because I knew it was hard on my mom with her own health problems but she helped where she could. I took care of her to the day she died. I took on a job caring for a woman who was a bit difficult for anyone else but she took up to me real quick, she was 103 at the time and was my dearest friend, I adopted her as my grandma and we were 2 peas in a pod, she passed away right before Christmas last year at the age of 105, I miss her. Then my parents and sister needed more and more care as their health deteriorated, my sister passed away last year on 2/18/2016 which was my other sisters birthday and my dad passed away days later on 3/1/2016 which is my mom’s birthday, we were robbed by our neighbors while we were standing in the room with my dad as he passed, then my mother’s health had gotten so bad this last year I am on 24 hour care at her house, as hard as it is to watch her struggle with her copd among other respiratory issues, I know the end isn’t far, I wouldn’t leave her for the world, for in fact besides my husband and 4 kids, she is my world❤ – Genie

I’ve been a hospice nurse for 7 years in SC/NC. I relocated last summer to be near my parents in Connecticut. They are both in their 80’s in great health. With the work I’ve done for years, I understand too well that one event can change everything. I am positioning myself to be available as their needs progress. Although not officially yet, I am choosing to be a caregiver. ❤️ – Kristie

Something happened and I made a choice

Mom was in the beginning stages of dementia for nearly a year when dad got sick and died last year. I am one of 5 kids, but the only one who didn’t own a home – so I was “free” to move in with mom (if by “free” you mean able to break my lease, move further from my kids and fiancee, and arrange a transfer to another job!). But, once the house is sold, mom will be moving in with one of my sisters, so I will be free to resume my life…but close enough to help sis with mom. – Judi

My brother and sisters had spouses and children, I didn’t want them to have to go through worrying as much keeping as much normally as possible, it’s the best thing I could do for my family and I know as much heartache we share they appreciate my decision. – Sophia

It just happened, but I made the choice to take care of my Mom. I could have put her in assisted living years ago but decided to take care of her in our home instead. – Kathy

I was out of work and my neighbor needed help with all types of things. So I would go there and help her. I also helped her with her dog Snowy. Well she had passed away that’s when I decided to become a care giver and I also took her dog so he would still be loved. She wanted me to take care of her baby. Before she pasted I told her that I loved her and I was taking Snowy home. I still miss her so much and so does Snowy we have a new person next store he still cries. – Peggy

I decided to be my mom’s caregiver, but my husband developed pulmonary fibrosis and later had a lung transplant, so no decision there. – Lucy

For me it was something I never thought I would be able to do. But I got a job at a care home and found something that gives me so much fulfillment and purpose. Side benefits are lots of smiles hugs and love. – Lesley

My husband was a incomplete c5-6 quadriplegic when we met. It was something I accepted from the start. About 6 years into our relationship he fell and broke both of his legs losing most of his independence. With this came a lot of health issues. Then in 2015 I decided to be his mothers caregiver too, she had Colon Cancer. Sadly we lost her in Dec 2015. My husband passed away last month. Now I have to learn to care for myself. – Staci

My husband became ill, my wedding vows said in sickness and health till death do us part.. I had been an EMT and an MA so I chose to do it myself, I have no regrets he passed at home March 18, 2016. – Linda

I decided to be a Nurse as a career, and then my Mom was diagnosed with Alzheimer’s, so that both just happened and I made the choice to move from MA to FL to help care for her and my Dad and continue working. – Stacey

I cared for my grandmother, mother and part-time invalid husband (deceased). Later on, when I couldn’t find an office job, it was suggested I become a private caregiver. God made me for this, and I never looked back! Then disability took my career, and now my husband is my caregiver. I am blessed with a caring hubby, but I miss my job. – Sylvia


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This advice on ALZ changed my life

This advice on ALZ changed my life

There’s a lot of advice on how to care for someone with Alzheimer’s without, well, losing your mind.

Not a lot of it works.

I was a very earnest child. My poor parents had to deal with me taking things very literally. I still want to correct every mistake and misunderstanding. Luckily, now I have a lot less free time to waste on hopeless battles.

This attitude doesn’t work very well for life in general. It certainly doesn’t fly with someone who has Alzheimer’s.

Then I read an article about a woman whose mom moved in with her and her husband after her Alzheimer’s progressed. Her and her mother butted heads, but her husband and her mom hit it off wildly. This caused its own problems, as it can be tough to watch your husband become your mother’s new golden child.

How did he do it? He loved improv and took every moment with his mother-in-law as a new skit, a new adventure.

Something clicked for me.

I’ve never taken an improv class, although it’s on my list of things I’ve been meaning to do for years, next to learning Spanish. I’ve circled the improv classes in JCC fliers more times than I can count, but I’ve never actually signed up. But, I did have an elementary school teacher who was obsessed with improv and taught our class the basics.

And, thankfully, you can learn just about anything online.

My grandmother, unfortunately, wasn’t as fun as the woman in the story. Most of my time was still spent facing accusations and demands, but at least now instead of feeling insulted, I was working out the next best line. How could I distract her long enough to change the topic? Could I manage to make her laugh? (Usually, no, I could not).

Even if she wasn’t having a good time, my experience was much improved. Instead of trying to convince her that this kitchen that looked just like her kitchen was, in fact, her kitchen, I humored her. I made up elaborate stories about where we were and why it looked so much like her house. There were all sorts of zany reasons why we were waiting there, but don’t you worry, you’ll be heading home shortly. And then we’d get her bundled up and do the equivalent of spinner her around in a circle before a game of hide and seek so we could take her “home.”

I did particularly enjoy her stories about her trip to China as a young girl (not a real thing), the other people she met while she was on her cruise (she was in a nursing home for respite), and her complaints about her boss (her feet were bothering her from standing all day in high heels, although she was bed-ridden and had retired long before I was born).

It made the days a lot more fun and a lot less frustrating.

I never could quite get the rest of the family on board. Everyone else was still trying to convince her she was at home, those were her red shoes, that was FOX News on the TV, they already fed her dinner, and they were her daughter/granddaughter/neighbor. You can’t win them all.

But it worked for me. Maybe it’lll make your day a little easier.

How to Efficiently Make Over Your Closet

How to Efficiently Make Over Your Closet

Let’s face it. We are regular people who do not live the lives featured in glossy magazines. We aspire to be neater, but to achieve this optic we would need to subsist on six interchangeable outfits of monochromatic khaki and white. What about winter clothes? What about navy blue? How can we whittle away our wardrobes to better suit the life we lead?

After moving fourteen times over the past thirty years, I have discovered I have a knack for the packing and unpacking process. When my college roommates marveled at how I organized, they often asked if I could help sort their dresses, tops, and sweaters, too. As I have aged, I have found organizing to be my great stress release.

This closet call for order has continued for decades because many of my moves involved tricky closet negotiation. An unforgiving space requires a “can-do” attitude. I once gave up a generous walk-in closet for a cute neighborhood with an “I Love Lucy” sized closet. The single shelf above a wooden rod that spanned the same narrow width as those 1950s refrigerators reminded me that everything back then was slim.

It was my greatest challenge. But I relished every moment of reimagining how I could make my wardrobe fit efficiently into this unrealistic space for a modern day woman.

Fortunately, by the time my Depression-era mother needed help managing her own home filled to the hilt, I was not at my wit’s end as I took in the mess of five overrun bedrooms and closets. I was in a state of creative delight, setting timers and working feverishly against the clock to clean sweep—ultimately giving her a home that she loved for its order and cleanliness.

Here is my tried-and-true go-to plan for an efficient closet makeover.

Step 1: Sort

The best way to sort a closet is to pull everything out at once. Set 4 zones to Keep, Toss, Dry Clean, and Donate. Set a timer, give yourself a two-hour window and have your sorting crates nearby. An old piece of luggage you want to donate, or a sizable box, or a Hefty sack can be used to stuff inside the clothes you no longer wish to keep.

Pile your contents onto the bed according to categories: all tops together, suits, pants, day dresses, fancy dresses, coats—all in separate mounds.

Do not be afraid of your disaster zone. I have seen this a thousand times before, and it does nothing short of inducing an adrenaline rush most athletes have to run five miles to achieve. I get mine without the sweat, or, sadly, the calorie burn.

Eliminate from your wardrobe threadbare or unnecessary multiples. Be selective. Do you need all of the black tops you have amassed? Keep only what you love and feel great wearing.

My 1950s closet meant that instead of being able to accommodate four pair of black boots (knee-high heeled, ankle-high heeled, knee-high flat, and cowboy style) I would need to make do with one all-purpose pair. I chose to save the knee-high heeled, which looked far better under trousers than the short boots ever did.

Step 2: Set-Up

My favorite 4 closet essentials are always the same:

1) Beige suede hangers, the thin kind. This will help to create a uniform look, and maximize the hanging space you have; bulky wooden coat hangers that curve have no place in a lady’s closet. All crooks to face wall uniformly when rehanging garments.

2) A good shoe organizer is key and the benefit of trial and error keeps me coming back to the same one: a vertical hanging style with twelve shoe-boxed sized compartments. Metal shoe racks on the floor, or hanging pockets over the door all end up hogging precious real estate or become buried beneath a sea of clothes, thus making your shoes inaccessible.

3) Storage boxes with lids. I always pick a couple of oversized hat boxes to contain clutter, or keepsake cards. Lids are key—you don’t want to see the mess. It disturbs the Zen of your new closet.

4) A double-hang rod is essential for keeping shirts and blazers above skirts and folded trousers below. If you are really Type A, you will correlate your wardrobe so like colors hang above like colors.

Step 3: Stage

Create a visual aesthetic. Hide clutter, loose bobbles, or love letters inside storage boxes. Wardrobe moves light to dark, ordered by sleeve length within palette. Top rung—hang blouses, jackets; bottom—skirts, pants, in corresponding hues.

Space beside double-rod is for dresses together according to color (light to dark), style, sleeve length; special occasion dresses come next; then swing coats; then winter coats, if you don’t have a hall closet.

If you have bonus space, move a dresser inside the closet, opening up the bedroom floor. A nice add-on: family and friends in frames of similar colors, varied styles.

With all of your clothes hanging according to style, and color, you have a better idea of what to shop for next, and what to avoid doubling up on.

Your timer should be dinging just about now.

“Managing the Paper Trail” will be the next blog posting here.


Stefania ShafferBy Stefania Shaffer

Stefania Shaffer, a teacher, speaker, and writer, is grateful her WWII parents raised her to do the right thing. Her second book, the Memoir 9 Realities of Caring for an Elderly Parent: A Love Story of a Different Kind has been called “imperative reading”. Funny and compassionate, this is the insider’s view of what to expect from your daunting role if you are the adult child coming home to care for your elderly parent until the very end.

The Companion Playbook is the accompanying workbook that provides the busy caregiver with the urgent To-do list to get started today.

www.StefaniaShaffer.com

Not the future I imagined

Not the future I imagined

My parents are too young to be facing old age.

They’ve reached that point of enjoying an empty nest. My brother and I are standing on our own feet, settled into lives of our own. Rather than have to parent (active verb) they can just be parents.

My mom and I go shopping and chat several times a day. She comes out with my girlfriends and I. My dad and I go for hikes together. He’s been helping me with the fixing up part of owning my fixer-upper.

I guess it did feel a little too much like being in a TV family. Or some Instagram lifestyle account. But I just thought we were all living our lives, doing our best, and enjoying a bit of smooth sailing after lots of hard work.

Then my mom was diagnosed with MS. Only a few months later my dad was told he has Parkinson’s.

Suddenly the retirement they were expecting evaporated. They’ll probably still be well enough to finish up their last few working years…and then who knows what will happen to them.

They can’t stay in their own former fixer-upper, the one they spent their whole adult lives tailoring to their tastes. The one that echoes with our memories. They’ll have to find a new place that’s handicap accessible — how much will that cost? Sure, they’ll probably make a nice return when they sell their beloved house. But the real estate boom that will get them a good sale price will also push up the purchase price of a new home.

None of the houses — even new construction — are accessible. Their only choice would be to build custom, make huge changes, or move into a retirement home. All of those are big bucks.

The life I was imagining has vanished, too. I was looking forward to having my parents around to help me when I finally have kids of my own. Now I’ll be raising my own kids just as my parents need more and more of my help. Can I do both? Should I have a baby sooner so they can enjoy having a grandchild before they get too sick? Should I not have kids at all?

I’m scared about how this will change my relationship with my brother. We’ve always been close, but he’s not really someone I’d rely on. Certainly not for practical matters like this. I’m so excited he’s finally living on his own and not mooching off of our parents. I’m worried about how he’ll handle all of this. Will it all fall on me? Will it pit us against each other? I don’t want his relaxed, doofy personality to be something I end up resenting.

My parents have always been so proud and self-sufficient. They don’t feel stubborn to me, maybe just because I’m so similar to them. I know they don’t want to be taken care of. But someone will have to do it. What happens when they need help with personal care, like bathing or using the toilet? I can’t imagine either of them allowing it.

None of my friends can imagine my concerns. They’re worried about getting promoted at work and finding a serious boyfriend. Most of them have grandparents who are still with us and they’re worried about them, not their parents.

I know I’m not the only one facing these sorts of problems, but sometimes it feels like it.

Judith S. Lane

How caregivers cope with stress

How caregivers cope with stress

Coping with stress is a constant challenge for caregivers. Coping mechanisms that are actually realistic for caregivers is a pretty frequent topic of conversation. Here are some of the suggestions that came up recently.

Small treats

After the day I had, tonight it was a glass of wine and later ice cream with a banana and chocolate syrup. I know, not good! But it helped — LOL – Deb

I make a cup of tea when I get home, then snuggle up with my cat & listen to her purr. If that doesn’t work, vodka! – Jen

I am not in a position to take time off. What this means is my brain will not let me rest by staying in a hotel room, or anything like this. It has to be short lived, such as being able to drive on my own to get stuff done, where I decide to stop and watch movie or pick up a treat. After 7 years of living like this, the means to cope with stress have been worked in. No, it doesn’t always work. I have found for myself, I need to give myself permission to fall apart and if it is an off day, so be it. I know, easier said than done. The bathroom with the handicap style shower, with a place to sit and rails, I have set up to have a spa feeling. I have similar relaxing plans for the garden. The porch on the other side is being groomed to be a place to sit and relax, since dad likes to read outside. – Brieya

Spend a few quiet moments in bed before getting up in the morning, using that time to scroll through Facebook and Pinterest. Do a daily morning workout and yoga in my bedroom in the AM while mom is doing YouTube chair yoga in the other room. Listen to some positive Pandora music when showering and getting dressed. Take mom to the park or the beach to soak up some Vitamin D. Read when I have free time. Enjoy an evening walk with my husband and return to a nice glass of red wine. – Paola

I cope with God, wine, and music!!! – Mayra

A nice long drive in my car 🚗 – Naomi

Tomorrow is another day and I will be there to help, no matter what the day brings. Some days I have a glass of wine or a beer before going to bed. – Mary

Play video games on my phone. Seriously. I am so the bomb at Cooking Dash. I’m amazing! – Kim

Yoga. Prayer. Chocolate. – Carol

Lots of prayer, reading posts on FB with encouragement and positive words, get enough sleep, walking several miles every day, take DHA fish oil and Sam-E, listen to music and sing along with the radio. – Sheron

Get lost in a good book, bike on my recumbent bike and sing loudly to favorite songs…and, of course, pray! – Susan

Bubble bath+ buttermint tea! And shopping!🤣 – Jona

I listen to music, talk to one caring friend, go feed my horses–they’re old so it’s all I can do. – Carol

Hobbies

I would LOVE to be able to garden again, but I have become physically disabled due to spinal injury, I can’t do that, so I try and get a little bit accomplished around the house, in addition to caring for hubby, before I mindlessly play solitaire on my phone. – Kathryn

I work outside about an hour a day in my flowerbeds and garden. And I tend to do it when my husband is napping. Therefore I have peace and quiet. – Stephanie

Writing. I hope to one day write a book on my experience as a caregiver. – Sara

Try to go for a run(as if)…try to do sewing for myself or my children…otherwise, go into function mode and get on with what must be done. – Tracey

Gardening! And the occasional shopping trip, on or off-line, and oh yessss the choc-o-lat-tayyy!!! – Wendy

Long hikes in the woods is the best way for me right now. – Penny

Pets

Chocolate and talking to my sweet golden retriever. Unfortunately he’s old and wearing down along with my hubby. I can’t even go there… – Debra

I have not de-stressed well at all since my best friend, my dog Diego died 2 years ago at 16.5 years old. He was my zen. He instantly calmed me. We went for walks and snuggled a lot. I’m a 6 hour drive from my husband and have only been able to see him 2-3 times a year for 4 years now. I’m considering leaving my mother (my whole family agrees) as she isn’t open to any options (move up with my husband and I, assisted living) and my mental health has bottomed out. – Salem

I don’t get to relax – my hair has all but fallen completely out – when I can I go visit with my horses which I haven’t ridden in over a year- and my dog sleeps on my bed with me and knows when I’m overdone. – Rusty

Sleep

I have always used sleep as a way to relieve stress since I was a small child. You could liken this to “freeze” in the fight, flight or freeze adrenal response. It’s harder to get sleep when you’re an adult though. – Jeannine

Real time off

Well after the past 4 years of first taking care of my dad at home until he passed away almost 2 years ago and then taking care of my mom with Alzheimer’s…my therapist suggested if I didn’t take this mere 3 days for just me, I won’t be able to continue at this pace. I really feel like I pushed myself to the edge. And instead of going over the edge I decided to listen to my doctors this time. For the very first time I have reserved a hotel on the beach for 3 days. Where I have instructed my family that during this time….I am not a wife, mother, daughter, caregiver, sister, friend, or anything else. I am disconnecting from my life for 3 glorious days by myself sitting on a beach while watching the waves! – Marianne

I make sure I go away completely by myself for a couple of weekends a year. I find some kind of conference I am interested in a place I would love to see and just go. I do not feel one bit guilty, because I come back refreshed and stronger to deal with life! – Susan


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