This has been a stressful month. My disabled husband developed a horrendous rash, which he described as being attacked by ants. I had three infections and injured my back while lifting him. A manuscript I’d been working on disappeared from my computer, and back-up systems failed. I asked an office store to scan the manuscript to a file I could edit, but the file was such a mess, I gave up. The only thing I could do was retype the manuscript.
No wonder I developed a case of the blues. This wasn’t like me, and I was used to caregiving. In fact, I’ve been in the caregiving trenches for 20 years, nine years as my mother’s family caregiver, seven years as my twin grandchildren’s guardian and caregiver, and close to four years as my disabled husband’s caregiver, with more years to come.
I don’t know what is hardest about caregiving for you, but isolation and loss of identity are hardest for me. Although I counter isolation with emails, giving talks, and volunteering, they aren’t the same as personal contact. Besides, I have little time for these things. While I’m caring for my husband, I’m maintaining a writing career, and marketing my books. What’s my problem? Keeping my identity as a writer is a biggie.
A disabled person requires extra care. Even with two hours of paid care a day, I’m always behind. “I’m not trying to push you,” my sweet husband declares. His comment doesn’t make my task list any shorter, or give me an energy boost, or make me feel better. The “To Do” list is often a “Not Done” list.
The Caregiving, Mothering Mother and More blog discusses the identity problem in a post, “I Don’t Know Who I Am Any More: Losing and Finding Your Caregiver Identity.” The author is a mother, school director, writer, and family caregiver, a new role. This role included driver, health advocate, cook, and dedicated companion—a combination that made her feel like a dog “with a choke collar on a very short chain.”
Jack M. Rosenkranz, J.D. writes about identity in his article, “Caregiver Identity Theory,” published in the “Jewish Press of Tampa.” Caregiver identity theory originally came from Dr. Rhonda Montgomery and Dr. Jung Kwak, he notes. The idea behind the theory is that caregivers’ needs are multi-dimensional. “Caregivers themselves often require individualized plans to maintain their own health and quality of life,” he concludes.
Well, my plan is to keep writing books and articles. But publishing has changed. All publishers—traditional, independent, and hybrid–expect authors to market their work. This is a huge job by itself. Add that to caregiving and there are times when I feel like I’m drowning. However, when I see my books on the Internet, and hold them in my hands, stress and work hours are forgotten.
While wife, grandmother, and family caregiver are part of my identity, at this time of life, writing is most important. I’ve made some changes in my writing schedule, including getting up earlier, posting daily on the Internet, and taking online marketing courses. Writing is my self-care and salvation. What’s yours? We can’t let caregiving rob us of our identities. Keeping our identities makes us better caregivers!
Being a family caregiver is stressful. Unless action is taken, stress will continue to build. Family members, even the loved one you’re caring for, may not understand your stress. Some family members may think you’re exaggerating. What’s all the fuss about?
“I’m not rushing you,” my husband declared. “Take your time.”
My sweet husband can tell when I’m stressed. “I’m not rushing you,” he often said. “Take your time.” But I can’t take lots of time because there is so much to do, and I’m always behind. This makes me feel like I’m not a good caregiver. This is my 19th year of caregiving and they have taught me to keep an eye on stress.
Knowing the sources of stress helps caregivers to cope with it.
“Just as the nature of chronic, progressive illnesses makes it normal for you as a family caregiver to experience stress, the situational losses stemming from the illness make it normal for you as a family caregiver to experience grief,” she writes. And grief takes many forms.
Anticipatory grief –- a feeling of loss before a death or dreaded event occurs -— is also a source of stress. There are many symptoms of anticipatory grief and each one has an impact. My mother had a series of mini-strokes and, according to her physician, they added up to Alzheimer’s. I was her family caregiver for nine years and felt like she was dying cell-by-cell before my eyes.
Never-ending tasks can also cause stress. A “To Do” list may change gradually, as a loved one improves, or rapidly, as a loved one fails. Calling 911 can change tasks—and life—drastically. Although I’m a list-maker, sometimes I just go with the flow.
Financial worries are a source of stress and can plague caregivers day and night. Many fear they will run out of money and I understand this feeling. My husband and I live on a fixed income and the rising cost of living scares us. To cut down on expenses we’re eating less meat and rarely spend money on entertainment. Going to a movie is a big deal for us.
Personal health problems can cause stress too. I have arthritic hips and am stiff when I get up in the morning. In short, I’m getting creaky. We will have to hire more help or move to assisted living if my hips get worse. Thankfully, this hasn’t happened and we hope we can life here for several more years. What can family caregivers do about stress?
We can start by identifying its sources. Next, we can practice self-care. We can take steps to reduce expenses, always have a Plan B, and be on the lookout for anticipatory grief. Don’t let grief spoil a day. As author Leo Buscaglia noted years ago, “Worry never robs tomorrow of its sorrow, it only saps today of its joy.”
I try to live in the moment, find joy in each day, and savor this time with my husband. We are blessed to have each other!
“The 10th anniversary of Helen’s death is coming up,” I told my husband. “I think we should do something significant—write a large check to the food bank or the public library.” John nodded his head in agreement. Helen died from the injuries she received in a car crash. There were audio books in the car and I was the one who returned them to the library, told the librarian Helen had died, and the books were overdue.
“I owe you money,” I said.
The librarian’s reply: “You owe us nothing.”
As soon as I finished this story I began to cry. What was going on? The 10th anniversary of Helen’s death was really an anniversary of four deaths. In 2007 four family members—Helen (mother of our twin grandkids), my father-in-law, my brother, and twins’ father—all died. No wonder John and I think of this year as the year of death. Thankfully Helen, who was divorced from the twins’ father, had a will and it listed us as the twins’ guardians. The court followed her wishes.
When the twins moved in with us they were 15 years old and we cared for them for seven years. Life was hard for us all. John and I tried to be upbeat for the twins, yet at the same time, we were grieving for multiple losses. Helen died of blunt force trauma, words I hate to say or write. On a snowy night she entered a highway from a rural road and her car was hit broadside. Helen suffered severe external and internal injuries. Her daughter, who was in the car with her, had a mild concussion.
The 10 year marker of Helen’s death took us back in time, back to trauma, back to emotional pain.
Bob Deitz, in his book Life After Loss, writes about grief anniversaries. Grief can be a time of self-discovery, according to Deits. As he explains, “Grief is as much about finding as it is about losing.” John and I understand this sentence. We think becoming GRGs, grandparents raising grandchildren, is the greatest blessing of our lives. Over time, the four of us evolved into a “grand family” and our lives meshed. Each of us recovered from grief in our own way.
Sonya Lott, PhD, writes about grief reconciliation/recovery in her article, “Finding New Meaning in Your Living After a Loved One Dies,” posted on the Good Therapy website. The path to integrated grief involves three convergent processes, notes Lott, accepting reality, finding new meaning in life, and staying bonded to the deceased. John and I went through all three processes and life settled down for a while.
But crisis struck in 2013 John’s aorta suddenly dissected. He was bleeding to death and surgeons operated on him three times in an attempt to stop the bleeding. During the last operation John suffered a spinal cord injury that paralyzed his legs. He was hospitalized for eight months and during this time I moved us out of the house we had lived in for 20+ years, put the house on the market, visited him three times a day, and maintained a writing career.
Our love is stronger than ever, yet I grieve for John’s disability and its impact on our lives.
John knew he might not survive the last surgery, but was willing to “roll the dice,” as he put it, because he wanted to see the twins graduate from college. Although he wasn’t able to be there, he cried when he learned both twins graduated with high honors and Phi Beta Kappa. Because he “rolled the dice” he was able to be in our granddaughter’s wedding and escorted her down the aisle in his wheelchair. The minute I saw them I started to cry and noticed many wedding guests were crying too.
Grief anniversaries are times of remembering. Toronto poet Maureen Scott Harris writes about her memories in “The Tenth Anniversary of Your Death.” Thoughts of the past prove “it is not fading,” she writes. Helen and the twins have not faded from our lives and we are still connected to them. Our granddaughter works at The Salvation Army headquarters in St. Paul, Minnesota and is an independent photographer. Our grandson is a student at The Mayo Clinic School of Medicine and will be the third physician in our immediate family.
All of these experiences—John’s health crisis, raising grandchildren, multiple losses, and Helen’s death—were part of the 10th anniversary. Similar to a highway mile marker, the anniversary of Helen’s death was a life marker, and proved my resilience. I had made it this far, created a new life, and learned many things. I know I’m a strong person. I know writing is a source of comfort and knowledge. I know giving to others helped me survive tragedy. I know goal-setting is an ongoing task. I know each moment of life is a miracle.
Most important, I know I made good things from grief.
You’re a family caregiver and need outside help. These days, most large and mid-size towns have caregiving agencies. Before you sign with an agency do your research. Keep in mind that it can you weeks to adapt to a paid caregiver. That’s because you are creating a partnership.
My husband’s legs are mostly paralyzed and I’m his primary caregiver. With help from therapists he learned to stand, stand and pivot, and walk 50 steps with the aid of a walker. Still, he needs lots of support. I’m on the job 24/7 and rely on paid caregivers. A caregiver comes each morning and stays for two hours.
The training and expertise of paid caregivers varies widely. Retired nurses, nursing assistants, and nursing students are an ideal match for our situation. Just as I want the best for my husband, I want the best for paid caregivers. You probably want the same and these tips will help you forge a partnership..
Start with a home “tour”
Even if your place is small, the caregiver needs to get a sense of the space. Caregivers need to know where the linen closet is, where incontinence supplies are stored, which drawers contain underwear, and which contain socks. I store towels in baskets with labels: towel sets, hand towels, floor towels (for the shower wheelchair puddles and drips).
Explain your daily routine
Our routine is so detailed that the agency created a task list for caregivers, a practical idea and one you may wish to use. I think a routine helps caregivers and care receivers alike. It also helps with time management. Spending too much time on one task deletes others.
Take advantage of perks
Most caregiving agencies allow caregivers to do light housekeeping and you may as well take advantage of this. I ask the caregiver to dust, vacuum, clean mirrors, etc. The caregivers know where my cleaning supplies are stored and I keep them well stocked.
Follow agency rules
Paid caregivers aren’t allowed to dispense prescribed medications or apply prescribed lotions. Always heed these rules. Still, I tell the caregiver about the medications my husband is taking because some cause sleepiness.
Frame concise, clear sentences
Caregivers must adapt to different settings, people, routines, and equipment. Often they race from one client to the next. To save time, be as concise as possible. For example, “Please carry the laundry basket to the laundry room.”
Share special needs
My husband wears a brace when he practices walking and getting ready is a process. The nine steps: 1) put on support socks; 2) put on shoes; 3) put brace on left leg; 4) put lift on right foot to equalize the length of his legs; 5) put half sock on left shoe so the paralyzed leg can slide; 7) get the walker; 8) brace the walker as he stands; 9) Be ready to catch him if he falls. I help my husband stand and follow behind with the electric wheelchair.
Follow the Golden Rule
Treat caregivers as you would like to be treated. When the caregiver leaves I say, “Thanks for your help.” According to one caregiver, we’re the only people who do this. Without paid caregivers I would be an exhausted, aching, discouraged wife. Paid caregivers make my days easier. Cheers for them all!
Every morning a paid caregiver comes to our home to help get my disabled husband up for the day. Although caregivers can change, one caregiver comes most often, and we love her. “What are you doing today?” she asked as she walked in the door.
“Nothing,” I answered. A puzzled expression came across her face. An experienced caregiver, she knows caregivers have never-ending task lists, and there’s always something to do. “I’ll do my caregiving tasks,” I continued, “and that’s it.”
The idea of a Nothing Day came to me during the holidays when I was rushing around. Although I average seven hours of sleep a night, I was still tired, and my arthritic hips were giving me trouble. Doing nothing—a day of rest—sounded very appealing. What might the day be like?
I wouldn’t go to the grocery store. I wouldn’t prepare future meals and freeze them. I wouldn’t do five loads of laundry. I wouldn’t dust or vacuum. I wouldn’t sort mail or pay bills. I wouldn’t do any heavy lifting. And I wouldn’t worry about our messy garage. This is my 19th year of caregiving, and I can tell when I need to slow down and rest for a while. Other caregivers have come to the same conclusion.
In The Caregiving Wife’s Handbook, Diana B. Denholm devotes a chapter to “dos” and “don’ts.” She asks caregivers to take a respite. “Do create a chance of pace for yourself one day or night a week,” she advises. Gail Sheehy, in her book, Passages in Caregiving, offers similar advice. “Whenever you feel overwhelmed by caregiving responsibilities, take time out to sit still and breathe calmly and deeply for at least ten minutes,” she writes.
I’ve followed her advice. Instead of deep breathing, I practice diaphragm breathing, a skill you may wish to learn and perfect.
My first Nothing Day was a huge success. Lunch was leftover bacon quiche and winter fruit salad from Christmas brunch. Dinner was French dip sandwiches and salad, leftover from a previous dinner. I did one load of laundry (my husband’s clothes) and left the rest for the another day. I read some Christmas magazines. I watched holiday programs on television. I sat in a rocking chair and meditated. I posted a video of me reading an excerpt from my affirmations book for caregivers on YouTube, something I’ve wanted to do for weeks. But the most beneficial thing I did was to take an hour and a half nap.
Of course a Nothing Day isn’t a blank day, and essential caregiving tasks still need to get done. Yet days like these force us to practice self-care. We can rest our bodies and our minds. In quiet, restful moments we rediscover ourselves and rekindle creativeness. A Nothing Day is really an everything day, time to think about life, assess our caregiving, and take credit for all we do.
From now on, I’m going schedule Nothing Days, and hope you will do the same. Write Nothing Day on your calendar now!
Have you ever sat in a waiting room, stared at a picture, and realized it drove you nuts? Our loved ones may feel the same way if they don’t like the artwork in their home or room. Some artwork is actually upsetting. We can make loved ones feel at home by paying attention to the art.
In fact, many believe art can heal. That’s why hospitals display paintings, sculpture, place artwork in gardens, and have volunteers that distribute art. If the patient doesn’t like the artwork in their room he or she may choose a different picture from the art cart, a decision that makes them feel more in control of their life.
Mayo Clinic in Rochester, MN thinks there is a connection between art and healing. In its pamphlet, Art & Healing, the clinic describes this connection. “Mayo Clinic has always believed that restoring the mind and spirit is an important part of making the body well—and that art and science together play a role in the healing process.” The pamphlet goes on to say that Mayo’s art collection, which includes all branches, humanizes its medical environment and can be a source of hope in a time of uncertainty. Mayo Clinic’s art collection is extensive: paintings, murals, mobiles, sculpture, fabric art, furniture, seasonal displays and more.
While family caregivers like us can’t develop extensive art programs, we can tap the power of art. Asking our loved ones some questions is a good place to start. What kind of art do you like best? Do like lots of different colors or prefer one color? Which do you prefer, traditional art, folk art, modern art, paintings, different kinds of prints, photos, or sculpture?
The answers to these questions help you determine which art to display. These suggestions will also be helpful.
Use art to prompt memories
Years ago, family members chipped in and took Pampa, the patriarch of the family, to an historic Civil War battle site. As we walked along pathways, we came to a monument honoring Minnesota soldiers. Dad wanted to take a family photo here and we flagged down some passing Boy Scouts. I had the photo framed and Dad loved it.
Hang pictures lower for the disabled
My husband spends his days in a wheelchair. I built a wheelchair accessible townhome for us. When I hung the pictures I positioned them lower than usual so my husband could see them without hurting his neck. Instead of putting the television above the fireplace, which is a popular trend, I placed it on a shelf to the left of the fireplace.
Display holiday artwork
Seasonaldecorating can boost a loved one’s spirits. Because we have to keep traffic patterns clear for my husband’s wheelchair, we don’t have a large Christmas tree. Instead, we have a huge poinsettia (a gift from a relative) and display family decorations. Our home looks festive.
Changing artwork keeps loved ones interested in their environment. Put a picture away for a while and replace it with another one. Unify mismatched artwork with similar frames. Black frames always seem to work well. So do wood frames.
If you don’t have any artwork, take out art books from the library for your loved one. Discuss the books together. When we pay attention to artwork we are expressing love. Being smart about art makes loved ones feel better and we feel better too.
This is my 19th year of caregiving and I can hardly believe it.
After a series of mini strokes my mother developed memory disease. I was her family caregiver for nine years. In 2007 my twin grandchildren’s parents died from the injuries they received in separate car crashes. The court appointed me, and my husband, John, as the twin’s guardians/caregivers. We did this for seven years.
In 2013 John’s aorta dissected. He had three emergency operations and suffered a spinal cord injury during the last one, which paralyzed his legs. John was hospitalized for eight months and finally released to my care. I’ve been his caregiver for three years. While my past caregiving experience has been helpful, caring for a disabled person is different, and comes with its own challenges.
For example, venturing out requires detailed planning. I have to check the weather, dress John appropriately, jockey the cars, move our wheelchair van into position, help John roll aboard, and secure his wheelchair. I feel like I’ve done a day’s work before we’ve left the house. Yet once we’re underway I feel good.
Recently John offered to help me with grocery shopping. “I know where many items are and could bring them to you,” he explained. His offer came from love, yet I wanted to groan. Much as I love his company and conversation, grocery shopping would take longer than usual, and my day was already crammed with tasks.
Still, John needs to get out and about. One time we went to a home improvement store together and John had a ball. “I haven’t been in this store in years. Everything’s changed,” he declared. John marveled at the displays, examined new products, and had so much fun you would think I’d taken him to a theme park. For John, home improvement stores are a theme park.
Another time I took him to the new Aldi’s grocery store in our neighborhood. For me, this was an ordinary shopping experience. For John, it was a revelation, and he loved seeing the array of goods. He examined the produce, peered into frozen food lockers, and lingered at the odd display of products in the center of the store, everything from shower curtains to pliers.
These experiences have taught me an important lesson: Our loved ones need the ordinary stuff of life. Grocery shopping. Folding clothes. Baking cookies. Things we think of as ordinary can be extraordinary for loved ones, especially those who are disabled. This realization made me wonder if family caregivers are missing benefits of ordinariness.
In her book, The Gift of an Ordinary Day, Katrina Kenison tells how she slowed down to the rhythm of life, the “days when nothing momentous happens, no great victories are won, no huge disappointments suffered, no milestones achieved.” According to Kenison, these are the only days we have, “days in which we simply attend to the humble business of life.”
It’s taken me too long, but I finally get it: John missed ordinary things. So I’ve changed my routine. When I have to run errands, I tell him what they are, and ask if he wants to come. If he comes along I don’t rush him. Why rush? Now that we’re in our eighties, ordinary days are numbered. We’ve vowed to enjoy every one, and the miracle of being alive.
Take care of yourself. We’ve all heard this advice. A short walk may be one way you care of yourself. You may bake a batch of cookies. Going to bed a half hour earlier may also be self-care. Or if you’re like me, you may sit down and read for pleasure. But knowing you need self-care and practicing it are two different things.
I know self-care is important, but it became more important after I fractured a bone in my right foot. I wish I could say I hurt my foot water skiing, or hiking in the mountains, or playing tennis. None of these are true. My excuse is boring: I hit my foot on a chair leg. “Well that hurt,” I muttered to myself.
Five days later my foot started to swell. It turned red and my toes looked like fat sausages. The swelling moved to my ankle and then half-way up my leg. My right foot continued to swell until it was twice the size of the left. Since my primary care physician was out of town, I saw a Nurse Practitioner, and she was excellent. She ordered an x-ray and, as often happens with a stress fracture, the x-ray didn’t show up. The Nurse Practitioner suggested another test.
“If the test shows a fracture, you will tell me to wear a boot for six weeks, right?” I asked.
“Yes,” she answered. The test is expensive and, to save time and money, I decided not to have it. Besides, I already had a protective boot in my closet, leftover from a fractured ankle I had last winter. The nurse practitioner told me to take over-the-counter pain medication, and stay off my feet as much as possible.
“Good advice, but I’m my disabled husband’s caregiver,” I replied. She nodded her head in understanding.
Hobbling around in a boot is tiring, and out of necessity, I added new self-care steps to my list. I plan driving routes more carefully. I elevate my feet in the morning and again in the afternoon. I wash dishes at lunch time, and stash the evening dishes and pans in the dishwasher, a surprisingly helpful step. I asked the church Caring Committee for ready-to-eat meals, and a member of the congregation delivered enough food for three dinners.
“You have to stop breaking bones,” my sister-in-law declared in an email. She was right. So I took the most important step and made an appointment with my primary care physician to discuss osteoporosis therapy. According to the Nurse Practitioner, new medications have been developed that slow the progression of osteoporosis. I hope my doctor will prescribe medicine that helps me.
Did you injure yourself? Did you catch a bad cold? Were you diagnosed with a chronic disease? If so, it may be time to add new self-care steps to your day. To care for your loved one, you must care for yourself. Small self-care steps can have a big impact on your energy and health.
Whether it’s called self-compassion or self-kindness, the premise is the same: Treat yourself as kindly as you would treat others. This concept is especially important for family caregivers, who can get so caught up in daily tasks that they neglect themselves. To let this happen puts the caregiver at risk for exhaustion, a case of “the blues,” symptoms of depression, or medical diagnosis of depression.
You may be wondering how to cultivate self-kindness. What steps can you take? Can you stay on this path?
Self-kindness is related to self-esteem. Neel Burton, MD, cites 17 ways to develop self-esteem in his article, “Building Confidence and Self-Esteem,” posted on the Psychology Today website. A suggestion from Burton, “Do at least one thing that you enjoy every day, and remind yourself that you deserve it.”
Now in my 19th year of caregiving, I realize that self-kindness is a journey of its own. I know I must be kind to myself in order to care for my husband. Some self-kindness steps worked better than others. When I reviewed my caregiving experience I became aware of how I created my self-kindness path. These are the steps I took.
Learn about the benefits of self-kindness
Many articles on this topic are posted on the Internet. One benefit is the reduction of stress, something all family caregivers need. Being kind to yourself helps you feel good about yourself.
Promise to be kind to yourself
This pledge keeps you moving forward on the self-kindness path. When things get too busy, self-kindness may ebb, and you may need to jump-start it.
Make a list of your needs
A health and wellness author, I know quiet needs to bepart of every caregiving day.What do you need? You may wish to make a written list of these points.
Consider your wants
Maybe you’ve wanted to take up golf for some time, or want to see the latest movie. Thinks about your wants and make a list of them. These two lists, wants and needs, will help you balance your life.
Test self-kindness strategies
A step that sounds good may turn out to be not so good. If a strategy isn’t working for you, move on to something else. You are worthy of this effort.
Keep what works and discard what doesn’t
Because self-kindness is a trial and error process, identifying steps will take some time. As you explore self-kindness, however, you start to develop a routine. The goal is to make self-kindness a daily routine.
Be willing to change course
As life changes, your self-kindness steps may alsochange.Monitor your feelings and know which self-kindness steps work best. Don’t be afraid to try something new.
Finally, be persistent about self-kindness
Just as a schedule is part of each caregiving day, kindness needs to be part of your day. Self-kindness improves your life and your loved one’s life.
Amit Sood, MD, in his book, The Mayo Clinic Guide to Stress-Free Living, thinks the kindness we show others is fueled by the kindness we show ourselves. “Self-kindness helps knit your tribe together,” he continues. Don’t wait for self-kindness to find you. As Sood explains, “Waiting for others to send you positive energy will put you at the end of a very long line.”
Surprise yourself with a new self-kindness step today!
Caregivers and care receivers may be about the same age. This is especially true if a wife is caring for her husband, or a husband is caring for his wife. While the caregiver is tending to the needs of another, she or he may develop their own health problems.
You may have arthritis, or osteoporosis, or diabetes—chronic conditions that require monitoring and professional care. Before you know it, self-care and caregiving have become a balancing act.
My husband is six months older than I am (I married an older man), and I recently discovered that I have osteoporosis in my knees, in addition to two arthritic hips. When I get up in the morning I feel “creaky” and can hardly walk. An hour later, after I’ve taken an over-the-counter pain medication, walking becomes easier.
For many caregivers the question is “How can I retain a balance between my own needs and my loved one’s needs?” Since I don’t know anything about your caregiving tasks of setting, I can’t be specific. Still, you may find the following tips helpful. At least, they have worked for me.
See your primary care physician
In her book, Passages in Caregiving, Gail Sheehy writes,“Being a caregiver provides many excuses for skipping your necessary checkups, but don’t do it.”After I felt and heard a snap in myleft knee, I contacted my primary care physician. She referred me to a Certified Nurse Practitioner, who recommended an x-ray. The x-ray revealed the osteoporosis. If you don’t have a primary care physician, now may be the time to get one.
Keep medications current
Don’t take any medicine that is out of date. Renew prescriptions if necessary. My husband and I are on a “worry-free” medication renewal program, and the medications come by mail. Sometimes, however, I have to call the 800 phone number and ask for a prescription to be renewed. The prescription service contacts the physician who wrote the original prescription—a big help to me.
Learn more about your chronic condition
Osteoporosis is a good example for this point. It is basically weakened bone strength and the person with it is more at risk of breaking a bone. To learn more I subscribed to a Mayo Clinic bi-weekly newsletter about osteoporosis.
Be kind to yourself
Tell your loved one when you aren’t feeling well. Apologize for the delay if you think you need to, yet be reassuring. Remember, you have to be in good health to care for your loved one. Mike O’Connor details self-kindness in his article, “40 Ways to Practice Self-Kindness,” posted on the Kindness Blog. One point caught my attention: Act on what you needand not what you want. Instead, O’Connor says we need to remain strong, centered, and continue to move forward.
Caregiving is a journey and practicing self-kindness will make the journey easier for you and your loved one.
Although I’m not a professional chef, I was a food writer for the original Rochester Magazine, (when it started years ago in my hometown of Rochester, Minnesota), learned basic and advanced cooking techniques, and created many original recipes. I’ve made airy soufflés, gallons of soup, tossed a dizzying array of salads, baked French baguettes, turned our kitchen into a biscotti factory, produced thousands of cookies, made egg roll wrappers, flipped countless burgers, prepared a wedding dinner for seventy, roasted a Christmas prime rib as long as a log, entertained my physician husband’s patients, and made cookbooks for family members.
These experiences have been a culinary journey, and I have enjoyed every moment of it—even the recipe failures.
I’m a “made-from-scratch” cook, an approach that halted abruptly in 2013 when my husband’s aorta dissected. After three emergency operations, two months in the hospital, and six months in a nursing home for therapy, my husband John was released to my care. His dismissal was a nutrition wake-up call. For eight months I had been eating on the run. Instead of eating complete meals, I snacked and made poor food choices. Much as I hate to admit it, I often ate standing up due to time constraints. I visited my husband three times a day, at breakfast, lunch, and dinner, and there was little time for anything else.
Your caregiving experiences may be similar to mine. After rushing to prepare food, using too many high-salt mixes, and eating too many frozen meals, many of them high in salt, you may yearn for something homemade…After months of poor nutrition, I knew it was time to return to eating healthy, balanced meals…I learned that the approach to cooking by a caregiver requires taking a lot of things into consideration that we didn’t have to think about before, including:
physicians’ recommendations and prescriptions
foods that inhibit or cancel effects of medication
medication management (including dosage times)
loved one’s daily routine
loved one’s appetite
food likes and dislikes
amount of daily physical activity
caregiving budget (including food)
food intolerances and allergies
Challenging as my scenario was, these changes were possible, and I was willing to make them for my husband and me. I deserved balanced, nutritious meals as much as John, and getting back to normal would be comforting…This caregiver’s cookbook is the result of my experience in providing nutritious meals for John and myself…
When I was writing these recipes I tried to imagine your caregiving day, the schedule you keep, and your time-management strategies. I tried to imagine the care receiver too—a child with chronic disease, an ill husband or wife, or a grandparent in failing health. Every meal you prepare can exemplify the love you feel. Fixing meals for a loved one is more than providing fuel for the body; it’s a demonstration of love. You can reduce salt and fat, monitor sugar, and avoid food additives, food coloring, and preservatives with unpronounceable names. Best of all, you can tailor the recipes to your loved one’s needs.
I am my husband’s primary caregiver. Although a paid caregiver comes each morning to get him up, I’m the person on the job day and night. A while ago my husband was hospitalized for pneumonia and he spent three and a half days in the hospital. Shortly after he came home he had two more bouts of pneumonia, and his recovery has been slow.
I’ve been slow too. My husband needs more help than he used to, and often asks for help when I’m cooking a meal, writing at the computer, or doing laundry. “I’ll be there in a minute,” I call. But it’s never a minute and my husband knows this. Consequently, I often feel guilty for not providing instant service.
Guilt is the last thing I need in my overly-busy life. Gail Sheehy, in her book, Passages inCaregiving, asks caregivers not to succumb to guilt. “Guilt-driven caregivers and those culturally scripted to dedicate their lives to sick parents inevitably sacrifice too much,” she observes. At a time when we need to be lifted up, guilt creeps into our minds and drags us down. Your caregiving situation may be similar to mine. How can we make things easier?
We can tellwhat we are doing and how much longer it will take. You may be making pudding, for example, and have to keep stirring, pour the pudding into a bowl, and put it in the refrigerator. An example from my life, “I just stepped out of the shower and am putting on my clothes. I’ll be there in five minutes.”
Ask for specifics
Can your loved one wait a few minutes? Respond immediately if yourloved one has fallen, is in pain, or not making sense.I posted a list of emergency phone numbers next to my high-volume phone. (I have a hearing loss.) In addition, I know how long it takes to get from our place to the hospital.
Be honest with feelings
Married for nearly 59 years, my husband and I have an honest relationship. I’ve told him several times that I feel guilty when I can’t drop everything to help him. His reply: “I’m not trying to pressure you.” Still, I feel pressured when the person I adore needs my help and has to wait for it. Although he says he understands, our situation hasn’t changed all that much, and my guilt feelings don’t go away.
Swedish author Henrik Edberg, in his article, “Self-Kindness: 7 Habits that will Help You to Live a Happier Life,” posted on The Positivity Blog, thinks self-kindness include countering negative thoughts, finding time for ourselves, and focusing on the benefits of caregiving. According to Edberg some of these benefits are more perseverance, increased self-esteem, inner happiness, and positive relationships.
I think we have to accept the realities of caregiving and one is not providing instant service. We are people, not machines, and doing the best we can. That’s all anyone can do. Let’s give ourselves a round of applause!
In 2013 my husband John had severe chest pain. I drove him to the hospital emergency department. The diagnosis was aortic dissection. A retired physician, my husband made this diagnosis before he walked in the hospital door. He was bleeding to death and the health care team pumped blood into him as quickly as possible. Team members couldn’t keep up with the blood loss, so my husband had two emergency operations. They didn’t work.
John agreed to life-threatening surgery because he wanted to see our twin grandchildren graduate from college. It was a 13-hour operation with four surgeons. During the surgery he suffered a spinal stroke that paralyzed his legs. He was hospitalized for eight months and finally dismissed to my care.
John was thrilled to be home, but it wasn’t the home he remembered so fondly. While he was recovering I built a wheelchair-friendly townhome for us. Moving to a new place, three emergency operations, and life-saving medications affected his memory. His personality had also changed and, although John was polite, he could be quite demanding.
For example, as soon as I poured his coffee John would ask for cream. “You have to give me time to turn around, open the refrigerator, and get the cream,” I replied.
“I’m not trying to pressure you,” John answered, but his constant requests felt like pressure. Some examples:
“Move the over-the-bed table closer.”
“You have to line up the electric wheelchair with the bed.”
“It’s time to put on my socks and shoes.”
“We have to get some wine for our guests.”
All of these comments referred to things I was going to do, and I didn’t need to be reminded of them. Clearly, John wasn’t going to change, and the only person who could change was me, and I decided to mentally reverse roles with him. According to the online Medical Dictionary, role reversal is the act of assuming the role ofanother person to appreciate how the person feels, perceives, and behaves in relation to himself or herself and to others.
How would I feel if I was in a wheelchair? Frustration is the first thing that comes to mind. If I was honest with myself, I’d probably be angry. Having to use a grabber to position my feet on the wheelchair rests would be just plain annoying. I’d feel helpless, too, and have to come to terms with my disability. Lack of dignity also comes to mind, and I recalled John’s comment, “I gave up on modesty long ago.”
Mentally reversing roles with my husband enabled me to see things I had missed.. I realized that John’s comments were, and continue to be, a way of retaining some control over his life. The realization was humbling. My normally patient nature has returned and each day I awaken with profound gratefulness for John’s love and company. We love each other more than ever and I respect John for all the things he has done in life.
His comments are nothing when compared to John’s achievements and courage. I am so proud to be his wife.
As a health writer and caregiver, I understand the importance of self-care. I’ve written articles about self-care and discussed it in book chapters. In recent days, however, I’ve been falling behind on self-care. There’s just too much to do. At bedtime I’m well aware that some tasks are undone. Self-care is one of these tasks. What happened?
Sudden illness changed my caregiving role
My disabled husband hadn’t been feeling well for several weeks. He became so weak that he couldn’t use a transfer board. Worse, he didn’t know what year it was or what day. I called 911 and an ambulance took him to the hospital. Tests were run and the diagnoses were pneumonia and a bladder infection, two things that sap physical and mental energy.
There were new things to learn
A physical therapist prescribed leg and arm exercises for my husband. She showed me how to assist him and gave me two brochures. All of these exercises require help and encouragement. Indeed, I think my encouragement is as important as my husband doing the exercises. I feel like I’m cheering us both on.
New tasks were added to my daily schedule
Each caregiving day is packed: four loads of laundry, folding laundry, medication management, grocery shopping, preparing healthy meals, keeping our townhome clean, paying our bills, monitoring investments, and helping my husband with self-catheterization. Add exercises to this list and the day is gone.I have little time left for me.
Interrupted sleep takes a toll
I try to be in bed by 10 p.m. but this isn’t always possible. Although my husband is able to self-catheterize, sometimes he calls me in the middle of the night. Once I’m awake it’s hard to get back to sleep. Lately I’ve been waking up between 4:30 a.m. and 5 a.m. Once I’m awake I may as well get up for the day. Around mid-afternoon I start to get tired, and there are hours of caregiving ahead of me.
I worry about finances and family members
The ambulance trip to the hospital costs about $1,000. We received the hospital bill today. Three nights and three and a half days cost more than $10,000. Although our health insurance pays the majority of our medical bills, we still have co-payments and out-of-pocket costs. Several family members are facing their own health challenges and I am concerned about them.
To keep caring for my husband I have to care for me, and have made some changes. I started by studying the physical therapy brochures and memorizing the exercises. When I prepare a meal I fix extra food for future meals, and this saves me time. An afternoon nap (when possible) has been added to my daily schedule. Our financial advisor came to our home and updated us on our finances, which reduced some of my worries. Lastly, I connect more with family members and friends and this boosts my spirits.
Caregivers are worthy of self-care. Let’s practice it!
My husband is disabled and I’m his primary caregiver. I can be gone for a short time, but limit that time to one and a half hours. While I’m gone I worry about my husband constantly. Is he warm enough? Did he change the position of his wheelchair every 30 minutes, as prescribed? Returning home is always a relief.
The other day I went to get a haircut and color touch-up, a welcome break from caregiving. Before I left, I helped my husband transfer from wheelchair to hospital bed, positioned his over-the-bed table, and handed him a cell phone. I also moved his wheelchair close to the bed in case he needed it.
When I returned home from the beauty shop I was surprised to see my husband in his wheelchair, watching television. “Did you get out of bed yourself?” I asked.
“No, a fireman helped me,” he replied.
His answer puzzled me. Maybe I had missed a linking sentence, or my hearing aids needed new batteries. “What fireman?” I asked. Then he told me this story.
Shortly after I left the house a smoke alarm suddenly went off. This signal alerted our alarm company, and a representative called. The man asked if my husband was okay. “I don’t smell any smoke,” my husband said, “but I can’t give you any more details because I’m a paraplegic and in bed.”
According to the representative, the local fire company had already been notified, and he asked how they could enter our home. “Well, the front door is locked,” my husband explained. “I’ll give you the garage door code and they can come in that way.”
About 15 minutes lager a huge fire truck pulled up in front of our townhome. Three firemen (two stayed on the truck) came in the back door and entered my husband’s bedroom. They asked him some questions and my husband said he could be more helpful if he was out of bed. “If I try to get up myself that will take a half hour,” he explained. “If you swing my legs to the side, I can be up in a few minutes.”
The lead fireman swung his legs to the side and moved the wheelchair closer for easy access. Meanwhile, the other firemen checked all of the smoke alarms. They tried to disable the blaring alarm and, when that was unsuccessful, removed it from the ceiling. It turned out to be a defective alarm, and we had a new one installed.
Then I did something I needed to do. I drove to the fire station, which is only a half mile from our place, and rang the doorbell. A fireman came to the door. I handed him my business card so he would remember our address, told him the story of the malfunctioning smoke alarm, and asked him to thank the crew. “I didn’t work that shift,” he noted. “That was a different shift and I will thank them for you.”
“Thank you,” I replied, “because helping my disabled husband get out of bed was above and beyond the call of duty.”
The fireman smiled. “We’re here to serve,” he answered. Certainly, the afternoon crew served us. We are grateful to all the firemen who serve their communities day and night. They are caregivers, too, and face a myriad of challenges, many of them life-threatening. My husband and I thank the local firemen for their prompt, caring service.
Caregiving is stressful. I’ve been a caregiver for more than 18 years and, as time passed, became more aware of stress. My husband (the caregiving recipient) thinks some of my stress is self-induced, but I don’t agree with him. From my perspective, stress is built into the caregiving role. What are some causes of caregiver stress?
By its very nature, caregiving tends to be an expanding role, especially if you’re caring for a loved one who has chronic illness. With help, you can accomplish daily tasks. Without help, you fall behind, and this generates stress. Every morning, holidays included, an agency caregiver comes to our house and gets my husband up. The process takes two hours and enables me to get through the day. Our health insurance doesn’t cover this service and costs us $25,000 a year.
My husband’s aorta dissected and he had three emergencyoperations. During the third one he suffered a spinal cord injury that paralyzed his legs. When he awakened he couldn’t move his legs at all. Today, thanks to physical and occupational therapy, he can move both legs, and walk a few steps. Still, he requires lots of care and I’m always behind on laundry, grocery shopping, and errands. Falling behind stresses me and may stress you.
Although we have good health insurance, we have prescription co-payments, and high monthly bills for supplies. I worry about money constantly. What will happen to us when our money runs out? Many family caregivers ask themselves this question. About the only thing we can do is monitor the budget, cut back on expenses, and hope things turn out for the best.
Waiting for the results of medical tests can be nerve-wracking.Weeks can pass before the results arrive, and the longer you wait, the more you worry about your loved one. In fact, you may be experiencing anticipatory grief. While I’m waiting for results I try to divert my mind to things I enjoy—cooking, reading, and decorating. This strategy works most of the time, but not all the time.
Diana B. Denholm, PhD, LMHC, calls these feelings “living grief.” In The Caregiving Wife’s Handbook she writes about the time before a loved one’s death. Denholm thinks it’s best to face grief head-on and cry when necessary. “To me, it almost seems as if people have a certain amount of tears, and the sooner they get them out, the better. Holding them in isn’t going to help.” I’ve experienced anticipatory grief many times and agree with Denholm’s assessment.
Referral and aftercare
After being hospitalized for eight months my husband wasreleased to my care. He was home a year and then referred to physical therapy. Whentherapists had done all they could, he wasreferred to a health club and asked to use a special bike there. The health club dues are high. Sometimes we have to wait to use a bike because there are only two of them. Wheelchair van parking is also a problem and this stresses both of us.
“Stress overload causes people to be stupid,” Gail Sheehy writes in Passages inCaregiving. I’ve lived this sentence and done foolish things, such as putting a comb in the refrigerator, and losing electronic car keys, which are costly to replace. I think we have to be kind to ourselves when we’re stressed. A good laugh helps too. So keep your sense of humor handy and take a short breaks from caregiving. Both will help you to feel better.
Compassion fatigue is a weariness of body and spirit, caused by the never-ending demands of caregiving. This form of burnout can come on quickly, and before you know it, you feel like you’ve hit the wall. You may even wonder if you can continue to be a caregiver. There are steps you can take to alleviate the symptoms of compassion fatigue. Your goal is to stop compassion fatigue before it stops you.
Assess the situation. Exhaustion may cloud your judgment and things may not be as bad as they seem. If you are unable to do this on your own, ask for help.
Consider your overall health. Do you have physical problems of your own, such as arthritis, or a sprained ankle? Illness can slow you down and change our outlook.
Check your support system. Family members and friends may have moved away, and although you feel alone, you can shore up your support system. This takes time, and is worth your time.
Determine if you’re down or depressed. There’s a huge difference between the two and you need to know the differences. You’ll find helpful articles on the Internet and other resources at the public library.
Talk to a trusted family member, friend, or colleague. One person can get you through a dark time. Venting your feelings makes you feel better, but don’t share too much at once. You don’t want to wear out the other person.
Each day, try to have one meaningful conversation. This conversation may be with a health professional, another family caregiver, certified counselor, or religious leader. Contact a friend that you haven’t seen in weeks.
Build “me time” into your days. A few minutes of doing something you enjoy, such as knitting, can boost your spirits. You may even wish to sign up for an adult education course.
Stay physically active. A short walk, 15 minutes in your neighborhood, can change your outlook. Your loved one may belong to a health club and the two of you may exercise together.
Take care of you. Don’t let others tell you how to do this. You’re the person who knows you best, and what makes you feel good.
Retain selected social contacts. Options include going out for coffee, attending a meeting, or having dinner with friends. A few minutes away from the demands of caregiving can save your day.
Monitor your self-talk. Once negative self-talk gets started, it’s hard to stop it, and will continue unless you take action. When a negative thought comes to mind, try to balance it with a positive one.
Affirm your caregiving with words. Writing affirmations about caregiving can change your attitude in surprising ways.Keep your affirmations short. One-sentence affirmations are easier to write and remember.
Two years ago my husband’s aorta dissected, and John had three emergency operations. During the last one he suffered a spinal stroke that paralyzed his legs. Dedicated therapists taught him to stand, stand and pivot, take a step, and go a short distance with the aid of a walker. After eight months of hospitalization, John was dismissed to my care. Today, with a walker, he can walk the width of our townhome—a true miracle.
Still, John’s mobility is limited and, although we have a wheelchair van, getting places takes extra planning, lead-time, and patience. Sometimes my husband spends days at home and never ventures out. This makes me feel terrible, and I shared this thought with him. “You don’t have to entertain me every minute,” he replied.
But I wanted John’s life to be more interesting. What would he enjoy? What could he do? In Minnesota, the answers to these questions hinge on weather. If your loved one is in a wheelchair, you plan her or his activities, and here are some suggestions.
See a movie. Simple as this sounds, but it’s wise to call the theater and ask about wheelchair seating. One move theater in my community has excellent seating, with gaps in the row for wheelchairs. Another theater had a blank row, really in the aisle, so close to the screen our necks hurt.
Take a roll-about walk. When the weather is nice, we go around our cul-de-sac, andlook at the flowers and trees.Getting out and about gives us opportunities to chatwith neighbors and we’re starting to make friends.
Visit a museum. By law, public places have to be wheelchair accessible. Check the entrance before you go. If the museum has two doors (an air lock) make sure the distance between them will accommodate a wheelchair. A short distance means two people will have to hold the doors open.
Hear a library talk. Public libraries post notices about talks, classes, and workshops on their websites. Since wheelchair van parking is often limited, it’s a good idea to call the library and ask about the number of spaces.
Go on an architecture drive. We like to see new buildings and renovations in progress. If you enjoy these things, drive around your community and look at these projects. You may also drive through new neighborhoods.
Check out the latest restaurant. We had a birthday dinner at the latest restaurant and eight people came. Although the wait staff was accommodating, the seating was crowded, and therewasn’t enough room for my husband’s wheelchair. The only place for his wheelchair was at the end of the table, right in the traffic pattern. Our review: Great food, poor seating.
Attend a committee meeting. Our church has an interim minister, and the congregation is actively planning for the future. We attended the first meeting. My husband joined the church in the forties, and congregation members are interested in his perspective. Attending a similar meeting may make your loved one feel valued and needed.
Go to a store opening. Usually I shop for groceries when my husband is napping. This fall, a huge store opened near our home, and my husband wanted to see it. He had a great time sampling food and seeing the array of products. This made me realize that John needs more contact with the ordinary experiences.
Attend a concert. Every year, Rochester, Minnesota has a marvelous holiday concert, “Christmas at Assisi.” We had never been to it before, so I ordered tickets for us. Ushers directed us to the front and helped my husband position his wheelchair. The concert was a marvelous beginning to the holiday season, and we loved seeing the musicians up close.
You know your loved one best, and will think of other activities: going to an antique show, seeing a play, cheering at a game. As family caregivers, we need to keep our loved ones—and ourselves—involved in the miracle of life.
By itself, caregiving is a huge responsibility. Add the holiday rush and it’s easy to feel overwhelmed. Fatigue sets in and you wonder if you’ll make it through the season. These self-care steps will help you make it through the holidays and, most important, enjoy them. You may wish to print out this list and post it on the refrigerator.
Connect with other caregivers. You can do this by participating in a chat room, sending emails, and text messages.
Have one meaningful conversation a day. This conversation may be with a family member, a trusted friend, or even a stranger.
Be kind to yourself. The holidays don’t have to be perfect. Simplify your list and slow down.
Involve your loved one. Is there special music that she or he wants to hear? Does your loved one want to send cards?
Attend selected holiday events. Note these events on the calendar. Be careful not toover-schedule.
Make “me time” part of each day. Read a magazine or watch your favorite television program.
Give to others. Giving, whether it’s to a health organization, books to the library, or toys for the community sharing tree, embodies the spirit of the season.
Keep a caregiving journal. The words you write document your journey and family history as well.
Add physical activity to your routine. Just a few minutes of physical activity—a 15 minute walk or stretching—can boost your energy and mood.
Remember that caregiving is love in action. Tell yourself this each day.You wouldn’t be a caregiver if you didn’t care, and that is a blessing.
I’ve been a caregiver for more than 18 years: nine years as my mother’s caregiver, seven years as my twin grandchildren’s guardian/caregiver, and two years as my disabled husband’s caregiver. This experience has taught me that caregiving isn’t for wimps. We need physical strength and mental courage in order to be caregivers.
Caregiving is challenging.
Time question.Although you understand your loved one’s sudden or chronic illness, you aren’t a fortune teller, and don’t know how long she or he will live. Therefore, you don’t know how long you will be a caregiver.
Life on hold.Many family members put their lives on hold in order to become caregivers. Dreams that seemed so clear a few weeks ago begin to fade. Gail Sheehy, author of Passages inCaregiving, describes caregiving as “a collision between conflicting stages of life.” (p.12 )
Financial worries.Many caregivers have the same question, “Will I have enough money to pay the bills?” Health insurance and government regulations make it difficult to answer this question. And the bills keep coming.
Caregiving has pitfalls.
Anticipatory grief.Everyone experiences this grief—a feeling of loss before a death or dreaded event happens—yet many have never heard of it. Feelings of sadness and loss can take over your life. You feel like a black cloud is following you. Worse, people ask why you’re grieving if nobody has died.
Burnout. According to the American Institute of Stress, burnout is a progression of feelings that goes from enthusiasm, to stagnation, to frustration, and to apathy. Never-ending caregiving tasks contribute to burnout and it develops slowly. Eventually those with burnout lose their compassion.
Compassion Fatigue.This is a form of burnout and it comes on suddenly. You’ve hit the caregiving wall and don’t think you have the strength to do it anymore. In contrast to burnout, those with compassion fatigue retain their compassion for others.
Ambiguous loss. Pauline Boss, PhD, pioneered the research on this topic and coined the term. According to Boss, ambiguous losses lack a clear ending. As she writes in her book, Loving Someone Who has Dementia, “Loving a person with dementia in real life . . . has no clear ending, and that is our real challenge—to stay empathetic and connected in a real life story that remains ambiguous.” (p. 84)
Caregiving affects caregivers.
Fatigue. If you get up in the night to help your loved one, getting enough sleep is impossible. Interrupted sleep isn’t restful sleep. Before you know it, you are in sleep deprivation.
Stress creates health problems. According to a Mayo Clinic website article, “Stress Symptoms: Effects on Your Body and Behavior,” stress can cause headaches, muscle/chest pain, upset stomach, anxiety, over-eating, under-eating, and other things.
Caregiving is a different journey. You may think caregiving is a linear journey, but author Gail Sheehy sees it differently. As she notes in Passages in Caregiving, “It feels like we are going around in circles, thinking we have resolved a crisis only to have it return or be superseded by a different, unexpected crisis.” (p. 21)
How can we cope with these factors?
We can take care of ourselves, ask for help, keep a sense of humor handy, model kindness and respect, continue to learn, fine-tune communication skills, and savor the time we spend with loved ones. Caregiving is love in action—always has been, and always will be.
I was my mother’s caregiver for nine years, my twin grandchildren’s guardian/caregiver for seven years, and am my disabled husband’s caregiver now. I’ve had this role for two years and there are more years to come. As time passed, I became aware of the losses associated with caregiving. These are ambiguous losses—painful losses lacking clarity, closure, or the acknowledgement of others.
Lack of privacy is an example of ambiguous loss. If your loved lives with you, the loss of privacy was immediate. I understand this loss. My mother had stroke-induced dementia and lived with us for a month before she moved to assisted living. She followed me everywhere, so close I could feel her breath on my neck, and asked “What are you doing” constantly. Her closeness and question drove me nuts.
Pauline Boss, PhD, a University of Minnesota emeritus professor and psychotherapist in private practice, pioneered in research on ambiguous loss. She thinks there are two types of ambiguous loss, physical absence with psychological presence (as with a missing child), and physical presence with psychological absence, (as with Alzheimer’s disease).
As she explains in her book, Loss, Trauma, and Resilience, ambiguous losses lack clarity and generate conflicting emotions. “Ambiguity feeds ambivalence; ambivalence feeds the uncertainty about which action to follow, which decision to make, which role to play, or which task to perform,” she explains. (p. 144) What a mess.
You have many caregiving tasks and coping with ambiguous losses adds to your work load. What are some of your losses?
Loss of friends. Caregiving leavesyou little time to be with your friends. Staying in touch with friends gets harder and harder, and this contributes to loneliness.
Loss of a social life. Before caregiving, you used to go to the movies, concerts, plays, and luncheons. Now you feel lucky to get to the grocery store.
Loss of flexibility. The never-ending demands of caregiving can squelch flexibility.Doing thingson the spur of the moment is rare, if not impossible.
Loss of dreams. “I always wanted to go to Paris,” a long-term caregiver shared, “but myhusband is in the third stage of Alzheimer’s and I can’t leave him.”
Loss of hope. Hope fades when dreams are cast aside. It’s hard to be enthusiastic about caregiving without hope. You may struggle to keep hope alive as your loved one’s health deteriorates.
Loss of self. Ambiguous losses can make you feel like you’re caught in a vise, Pauline Bossnotes in Loving Someone Who Has Dementia (p. 40) Wecan learn to view ambiguous losses positively, according to Boss, and she cites some positives of them. Ambiguous losses:
allow us to continue to hope
offer new opportunities for adventure
keep us observant and alert
foster emotional and spiritual growth
give us time to say good-bye
enable us to learn more about ourselves.
When ambiguous losses get me down, I remember something I wrote for my book of affirmations for caregivers: Caregiving is love inaction. Every day, every moment, every second we spend with a loved one is a blessing. We are sharing the miracle of life.
Family caregivers face many challenges. “I wish I had a caregiver’s blueprint,” a friend said. She isn’t alone. Many new and experienced caregivers wish they had a blueprint to follow. You may have wished for one too.
Blueprints contain measurements and users also learn about the costs involved and estimated construction time. Unfortunately, none of this information is available to caregivers. You don’t know exactly how long you’ll be a caregiver, or how much health insurance will pay, how much you will pay out of pocket, or how to navigate the Medicare maze. Although family caregivers have common experiences, each situation is unique, and you will have to create your own blueprint. Here are some things to consider.
You’re joining a caregiving “army.”
According to the National Alliance for Caregiving, during the past year 65.7 million Americans served as family caregivers for an ill or disabled relative. That’s 29% of the adult US population, and involves 31% of US households. These are huge numbers!
Caregiving is an expanding role.
You bring your talents and skills to this role, and will probably need to learn some new skills. Since I’m not a nurse, I had to learn sanitary technique, how to lift my loved one, and how to dispense and track medications.
Keeping good records is imperative.
As much as you want to toss them, you need tofile caregiving receipts, bills, and other documentation. You will need this information for tax andinsurance purposes. Free log sheets are available.
Handle stress before it handles you.
Even if you’re a skilled caregiver, this role is stressful. There may be no definite beginning and, since you don’t know what the end will come, you always feel like you’re behind. Catch-up becomes a daily “game.”
There are thousands of Medicare and Medicaidregulations, too many for you to process, and a primary care physician or social worker will be able to help you navigate the system. Their advicewill save you time and angst. There are a range of professionals who can guide you through finding the support you need.
Hire a part-time professional.
There are hundreds of caregiving agencies to choose from, but do your homework before you sign up for anything. Ask about minimum hours, the hourly rate, holiday rate, caregiver training, and deposit fee. Choose the agency that fits your needs.
Savor the benefits of caregiving.
You may learn about family history, add to your skill set, discover new things about yourself, and discover things about your loved one. I always knew my husband was courageous, yet I’ve been inspired by his courage in the face of disability.
Making a caregiving blueprint takes time. Review your loved one’s finances. Review your own finances. Check on health insurance. Evaluate your home from a care receiver’s viewpoint. Is this a safe place? Do you need to make some changes? As your blueprint develops, you may need to revise some parts, and add others. Your caregiving blueprint will be helpful because you made it!
I’ve been a family caregiver for three generations of family members, and am my disabled husband’s caregiver now. My caregiving days begin early and often end late. It’s a grueling schedule.
The other evening, when I was feeling spent, Robert Frost’s poem, “Stopping By Woods On a Snowy Evening,” came to mind. I love this poem and am intrigued by the fact that Frost stated the last phrase twice to make his point. Just as Frost wrote it, I said the phrase out loud twice, and could almost feel his fatigue.
When I became a family caregiver I joined an army of caregivers across America. According to an estimate from the National Alliance for Caregiving, during the last year 65.7 million Americans–29 percent of the adult population–served as family caregivers for an ill or disabled loved one. Despite exhaustion and their own health problems, these caregivers strive to keep their promises.
What promises do we make?
The promise of dependability. Care receivers are dependent on us and want us to keep our word and follow through. If we say we’re going to buy supplies for a loved one, then we should do it as soon as possible. If we promise to take a loved one out to lunch, then we should do it. Our loved ones are counting on us.
The promise of safety. No matter what the illness, no matter what the age, your loved one wants to feel safe and secure. You may wish to ask a consultant to conduct a safety review of your home. New locks may have to be installed on doors, railings may have to be secured, and lighting may have to be improved.
The promise of patience. Sure, family caregivers get impatient, but we can keep our impatience to ourselves. The one thing we don’t want to do is project our feelings on loved ones who are ill. Before I became a family caregiver I thought I was a patient person. I discovered that my patience needed to be enhanced.
The promise of companionship. A loved one who moved in with you had to give up a lot, including their independence, beloved possessions, and the companionship of neighbors and friends. Although we can’t make up for an entire neighborhood or all friends, we can still be companions and attentive listeners.
The promise of quality care. To meet health care standards, we have to learn new techniques, get extra training, and hire outside help. A professional caregiver comes to our home every morning and stays for two hours, which is how long it takes to get my husband up for the day. I would be lost without her help.
The promise of kindness and love. You accepted the role of family caregiver because you care. I cared for my mother for nine years, was my twin grandchildren’s guardian/caregiver for seven years, and have been my husband’s caregiver for two years. That’s a total of 18 years. The fact that he is alive is a miracle and I savor the miracle every day.
The good thing about caregiving promises is that we can keep them. We keep our promises for the loved ones in our care, and because we want to keep them. Family caregiving is love in action and that is a blessing.
The term “new normal” is so common it’s become part of everyday conversation. You may have waited for a new normal to develop after you became a caregiver. But even with a daily routine, you may not feel like you have a new normal, and wonder why. What are the problems?
Routines can yield different results
After we moved into our wheelchair-friendly townhome my husband settled into a routine quickly. With intensive therapy my husband’s paralyzed legs started to improve. He learned to stand, to pivot on one foot, and to take steps with the aid of a walker. Therapists asked him to practice walking every day and he can walk the width of our home twice. Today he didn’t walk because he felt so weak. While a routine provides structure to caregiving, it may not be the same every day.
Adjusting to a new place takes time
We lived in our former home for more than 20 years and were used to three levels, a beautiful yard with wildlife, a garage with drop-down stairs and attic storage. As beautiful as our townhome is, we don’t have enough storage space, and always seem to be looking for things. I used to have a home office with a wall of book shelves and a large work counter. Now my “office” is a desk in a notch cut from the laundry room. Some days my husband and I feel like we’ve lived here for years. Other days we feel like we just moved in.
Adjusting to disability is a daunting challenge
When it comes to being a good sport, myhusband is a champion. He has adjusted to so much—three emergency operations, a spinal stroke that paralyzed his legs, the need for a colostomy, having the colostomy, and caring for it. This care involves new medical terms, equipment, and procedures. Neither of us feel colostomy care is our new normal; everything about the process is abnormal.
Chronic disease takes a toll
If your loved one has cancer, heart disease,diabetes, or another chronic disease, you know it takes a toll over time. With medication and specialized care, chronicdisease may stabilize for months or years. However, the word chronic implies that the disease will worsen. Since you can’t predict your loved one’s decline, or how long she or he will live, you can’t settle into a new normal.
Life may be drawing to a close
Several times, in the last two years, Ithought my husband would die, and had acute anticipatory grief. I recognized the feeling because I experienced it before, and written extensively about it. Unless you take steps to combat anticipatory grief, it will take over your life. Life is up in the air and you wonder if anything will be normal again.
Family caregiving is a challenging enough, without looking for a new normal. We may never achieve this goal and that’s okay. Caring for a loved one, and savoring each moment, is what’s important. Love is our normal and gives us strength and courage for the journey.
My husband is disabled and requires more assistance than some care receivers. More assistance means more requests. I’ve been his caregiver for two years and, as the months passed, realized I was being interrupted constantly. When I was doing laundry, or preparing food, or writing at the computer, he would call me. I stopped what I was doing and helped him.
All of his requests were justified. Still, I had to learn how to work with snippets of time. Since my husband couldn’t change his health care needs, I had to change and adapt. Although my solutions were simple, they have been helpful. Here are my tips for working with snippets of time.
Have a routine. A daily routine provides structure for you and your loved one. Keep in mind that you can modify your routine if it isn’t working. My husband’s daily routine begins with stretching exercises for his legs, a necessary task for health and wellness.
Plan together. Your loved one may have many time-saving ideas. Asking for input helps your loved one retain some control over a life that may seem out of control. Because my husband is a retired physician I always seek his input. We plan the day together.
Keep your promises. When my husband calls, I try to finish what I’m doing, something that isn’t always possible. I tell him, “I’ll be there in ____ minutes.” Sometimes it is two minutes, sometimes five, sometimes more. What’s important is that my husband knows I will keep my promise.
Make menus. I don’t have time to plan weekly menus, so I plan meals for three days. In fact, I’ve learned to speed shop for groceries. Often I start a recipe one day and finish it the next. For example, I cook pasta ahead of time, drizzle it with olive oil to prevent clumping, and refrigerate until needed.
Build “Me Time” into the day. I set aside a half hour for reading, or watching birds come to the backyard feeders, or emailing family members. These brief breaks re-charge me for hours. Without “Me Time” I would be a grumpy caregiver. My husband understands my need for this time and is respectful of it.
Practice Self-Care. When he was discharged from rehab, my husband was advised to join a health club and exercise on a special bike to strengthen his legs. I drive him there in our wheelchair van. While he is using the bike, I walk a mile on a treadmill behind him. In addition to being physically active, I get regular medical and dental check-ups.
Constant requests come with the caregiving territory. Frustrating as these requests may be, we can’t allow them to make us angry or impatient. We can learn to accomplish our tasks in snippets of time, try different methods, and work more efficiently. All of these things are possible. And remember, life itself is only a snippet of time.
Sleep experts recommend a bedtime routine – practices that get you to slow down, clear your mind, and prepare you for sleep. Before I became a caregiver I didn’t think about a bedtime routine very much. It was what it was. But becoming my mother’s caregiver, my twin grandchildren’s caregiver, and my husband’s caregiver, changed my thinking. I need sleep and have a nightly routine to promote it.
You may have a routine as well. However, if you don’t have a routine, it may be wise to establish one now. Having a bedtime routine will help you sleep better and wake up in the morning refreshed, energized, and ready for the day.
Exercise during the day. Mayo Clinic, in a website article, “Lifestyle and Home Remedies,” recommends at least 20-30 minutes of physical activity per day. “Activity helps promote a good night’s sleep,” according to Mayo. Your activity may be a brisk walk, stretching exercises, or lifting weights.
Start to slow down. Though your TO DO list is long, and you have been rushing from one thing to the next, put on the brakes after dinner. Accept the fact that you didn’t get everything done. Continue with tasks that don’t require much thought, such as folding laundry.
Nix the television. Television programs, especially the news, can stick in your mind. Because my husband’s legs are paralyzed, watching television is one of his main activities. He is especially interested in the history of World War II, upsetting images to say the least. I asked him not to watch war programs after dinner and he complied with my request.
Reduce background noise. Peppy music may keep you going during the day, but it isn’t the best match for a good night’s sleep. If you still want to listen to music, choose something that is soothing. You may listen to classical music, for example, or hymns.
Turn off the computer. Like television, computer work can stick in your mind and keep you awake. I try to turn off the computer, but sometimes this is hard to do because of incoming emails from my publisher. So I leave the computer on and do other small jobs or read. Just before bed I check my incoming messages once more.
Take a warm bath. According to sleep experts, a warm bath can relax you and make you drowsy. Since I am not a bath person I don’t follow this tip. However, if a bath relaxes you, it may be just the thing you need.
Slow your mind. This is one of those things that is easy to say and hard to You can clear your mind with meditation, reading poetry, prayer, or a soothing book. Don’t start a murder mystery.
Adjust the thermostat. A cooler room promotes sleep, so turn down the heat or set the air conditioner at a cooler, comfortable temperature. Keep your loved one’s medications in mind. If your loved one takes medicine that makes her or him cold, adjust the thermostat accordingly.
Prepare your room. Close the curtains, shades, or blinds. Subtle background noise, rain sounds, or a running fan, may help drown out other noise, according to Mayo Clinic. The bedroom isn’t the place for a television, the clinic notes, and you should “avoid TV, computers, video games, smart phones or other screens just before bed.”
Your loved one needs a routine and so do you. Establishing a bedtime routine is a trial and error process. Delete the tips that don’t work for you, and focus on the ones that do. Getting a good night’s sleep changes your outlook on life. Busy caregiving days are easier when you are well-rested.
Caregiving takes lots of energy. You need restful sleep in order to have this energy. That’s a given. But circumstances and worries may keep you from sleeping. Even if you go to bed early, you may toss and turn, keep looking your bedside clock, and worry if sleep will come. Instead of being your friend, sleep may be your enemy. I found this out the hard way.
A year ago my husband’s aorta dissected. Our house was only blocks away from the hospital, and I was able to get him to the Emergency Department in time. Just in time, for my husband was bleeding to death. Surgeons operated on him three times in a desperate attempt to save his life. The first two operations were a temporary “fix” and he continued to bleed internally.
The third operation saved his life, but my husband had a spinal stroke during the 13-hour operation, and it paralyzed his legs. After being hospitalized for eight months he was dismissed to my care. I am grateful for my caregiving experience. My mother had stroke-induced dementia and I was her family caregiver for nine years. In 2007 my twin grandchildren lost their mother and father in separate car crashes, and the court appointed us as their guardians. Suddenly we were GRGs – grandparents raising grandkids.
Now I was my husband’s caregiver and I needed sleep. While sleep problems are common, they are a problem I don’t need. The source of my sleep problem was easy to identify – my husband’s incontinence. Every morning I get up at 3 a.m. help him with self-catheterization. Sometimes the procedure goes quickly, and other times I may be up for 45 minutes to an hour. Once I am fully awake it is hard to get back to sleep.
So I have my little tricks. Often I visualize a blank television screen and try to empty my mind. Reversing my thoughts is another trick. I think about the good things I have done in a day, such as making a delicious dinner, catching up on laundry, paying bills, and enjoying television with my husband. When I do this, I am taking a chance because switching thoughts takes mental effort, and this effort can keep me awake.
At 4:30 a.m. one morning I gave up and got up. You may have had similar experiences. Sleep is essential to quality caregiving and these suggestions from a Mayo Clinic website article, Sleep Tips: 7 Steps to Better Sleep, may help you. I have edited the tips and added some personal comments.
Have a sleep schedule. I try to go to bed at the same every night, between 9:30 and 10:00 p.m. Lately I’ve been striving for the earlier time to get enough sleep.
Watch what you eat. No spicy dinners for me. Though I like spicy food, I avoid eating it for dinner. Mayo Clinic says you should not go to bed “either hungry or stuffed.”
Watch what you drink. If I feel like coffee after dinner, I make coffee that is ¼ caffeinated. Avoiding alcoholic beverages is a wise decision because alcohol can wake you up later.
Create a ritual. Full-service hotels turn down bedding, and I do too. Right after dinner I turn back the bed covers and get out my pajamas, a time-saving tactic.
Buy comfortable bedding. For some reason, I feel cozy and snug the minute I get under my quilt. I also have comfortable pillows.
Though sleep experts have differing opinions about naps, taking a nap in the afternoon is the only way I can make up for the sleep I have lost. But I am careful to sleep for only an hour. I hope you get the sleep you need and have sweet dreams. If you have more suggestions for getting a good night’s sleep, please share them with other caregivers in the comments.
My husband is disabled and we bought a used wheelchair van. The van has worked out well, but wheelchair parking hasn’t. We were going out to dinner and drove by a day ahead of time to find the wheelchair parking spaces. When I pulled up to the parking spaces across from the restaurant, two of the three were already taken. I managed to squeeze the van into the third space.
I opened the side doors and put the ramp down. Just as my husband was going down the ramp, a man walked up briskly to the car behind us, glanced at us, got in the car quickly, and drove away. Clearly, the man wasn’t disabled and had selfishly parked in a wheelchair space. His behavior made me angry.
This scene has replayed itself several times. I was just turning into a handicapped space in front of a store when a man sped into the space. He wasn’t disabled either. In fact, he and his two companions excited the car quickly. It made me angry. “If I see them again I’m going to say something,” I declared to my husband.
“Don’t bother,” he replied. “Complaining to them won’t do any good.”
When it comes to wheelchair vehicle parking, we follow all the rules. I applied to the state of Minnesota for a permit and received a plastic tag three weeks later. Every time I park in a wheelchair space I hang the tag from the rear view mirror. Before I drive away, I remove the tag so ensure clear driving vision. Most important, I don’t try to ace anyone out of a parking space.
From my perspective, my anger is justified. Nobody asks to be disabled and I think we need to remind the public about the purpose of wheelchair vehicle spaces. These spaces are a service for the disabled in the community. Even if they’re in a hurry, or don’t like to walk, or the weather is awful, they don’t have the right to park in these spaces unless a passenger is disabled.
Have you had experiences similar to mine? What are your thoughts about wheelchair parking? Please take a few minutes to share your insights.