Flip a coin. Which is worse: being a caregiver or having a caregiver? We may all be one or the other (or both). What’s it like? I have been a caregiver three times. Thanks to my family, two were at a distance and easy. However, one was a nightmare.
I was eased into caregiving. I was very close to my grandmother, who was a character. Having ridden in a buggy with her father, a rural physician, while he was making house calls, she wanted to be a physician or a nurse. However, her father believed neither of those professions were appropriate for “nice” girls in the late nineteenth century. Frustrated, she directed her energies toward other things, including moving rooms, not simply furniture. Her living room became her kitchen, the bedroom became the living room, and so it went. My poor grandfather never knew what he would find when he came home from work! She did not cognitively decline until age 96 after she had surgery for a broken hip. After trying to care for her, my mother finally realized it was more than she could handle, and “Na-Na” was moved to a nursing home. I lived in Colorado, and she was in Texas. How could I help? I finally decided I would call her once a week. When I did, she would literally talk nonstop for one hour, repeating the same stories each time. Did I help her? I will never know, but I do know it made me feel better.
My next experience with caregiving came when my dad, who had Parkinson’s, had to be moved into assisted living and then a nursing home after my mother died. He told me the nursing home was even worse than when he was sent to the mountains of Colorado to work for the CCC during the depression. I knew that he was terribly lonely, but I was in Colorado, and he was in Texas. My sainted brother was doing all the heavy lifting; visiting my dad every day and even having my dad’s clothes ironed because dad always wanted to be nicely dressed. Inspired by my experience with my grandmother, I started calling dad every day. He was very lucid until the end at age 91. He liked to discuss the news he watched on television and his grandchildren’s antics. I helped, but my amazing daughter was the best. During her daily commute by car from Manhattan to New Jersey, she and Dad had long talks about the old days. When she delivered the eulogy at his funeral, she told us about some of those talks. They were remarkable, and my dad’s stories became part of my family’s history.
What did I learn from these experiences (which can hardly be called caregiving)? It is lonely when you are alone and in an unfamiliar place. I hope that my calls provided at least some companionship to make my dad’s days less lonely.
Now for the real caregiving. My husband and law partner developed dementia (later diagnosed as Alzheimer’s) after a six-hour surgery in 2013. When he awoke, he realized he could not handle more than one idea at a time and could no longer practice law. I dissolved our eleven-lawyer law firm, and we moved to a small college town to be with our daughter and our two grandchildren. There began my husband’s long journey that ended in August 2019.
Caregiving for my husband at first was easy. In the small town, he could drive, go to the grocery store and the bank, and even cook. We both loved to read newspapers and books, and we spent many mornings and evenings reading before our fireplace. Most important, my husband could be with his grandchildren. His most fervent wish was that they would remember him. He taught our grandson how to play chess and the wonders of Uncle Scrooge comic books. He made hot chocolate for, and read many books to, our granddaughter. We had a good four years.
However, my husband slowly and in spurts began to lose all that he treasured. He could no longer enjoy a book because he could not follow the plot. He had to resort to watching CNN rather than reading the New York Times. He got lost when he drove and even when he was with me at the grocery store. He could not handle our finances. Then suddenly, he was even worse. He would get up in the middle of the night and get dressed for work. He could not remember from one minute to the next to take his pills or even the time of day. I did not mind doing all the chores that we had shared. Watching my beloved husband die a little every day was the most awful experience I hope to have. When that was coupled with having to watch him 24 hours a day, particularly at night, I had to admit I could not handle it. That was not easy for me because I always prided myself on being a strong, independent woman.
I knew I needed help and was convinced I could simply find a caregiver at night, and things would improve. I could get some sleep and even travel to see my other grandchildren in two different states. We lived in a college town, and it was easy to find a service that advertised staff trained to care for Alzheimer’s patients. I believe the training must have been a 30-minute video because, in my experience, the caregivers did not know the most basic thing about Alzheimer’s patients: “Be in their world, not your world.” They would try to convince my husband of his current reality. They insisted he was in Indiana, it was Monday, and he was no longer practicing law. Did NOT work. It simply created agitation, the very last thing both of us needed. Even worse, the caregivers seemed to take the nightshift so THEY could sleep. I was still having to get up at night with my husband to make sure he did not go to the office or grocery store or visit his grandchildren.
I then decided it was time to find a memory care facility for my husband. I visited the three that were available in the college town and found a new one with lovely facilities, wonderful food, and apparently compassionate leaders. These facilities did NOT work. The caregivers were inexperienced and, in my opinion, not well-trained. Even though I had a 24-hour caregiver with my husband and the facility had caregivers who were also supposed to care for my husband, he had a bad fall and had to go the hospital and then go to a rehab facility. The rehab facility was a nightmare because the personnel did not understand that a patient with Alzheimer’s could not remember the exercise you just tried to teach them. Physical therapy that requires the patient to perform tasks by himself or even with a therapist was destined to fail.
After that experience, I talked with our doctor, who could not recommend another memory care facility. I was at a loss. What could I do? I could not handle my husband by myself or with hired caregivers, and there were no other acceptable memory care facilities in that college town.
I realized I had to do something drastic. I placed my husband in a mediocre facility and began investigating Houston, a city where one of my daughters lived. There were many options, but I chose the one where I could be in independent living in the same building as my husband, who could be in memory care on another floor. That facility was wonderful, entirely because its caregivers had had many years of experience dealing with memory care patients. The chief nurse even let my husband visit her office and give her legal advice. He and I were both as content as we could be in our very different worlds.
What else did I learn? Memory care is much more expensive than other care. There are fewer memory care facilities than assisted living and nursing homes. The most important feature of a memory care facility is experienced personnel because the training, in my opinion, is terrible. Most important, one should be kind and grateful to good caregivers. Imagine having to care for 30 patients who cannot remember what you have just told them, not to mention that their patients will never get well and will only get worse. Seeing the other patients who could not eat, walk, or remember their loved ones was heart wrenching for me, and caregivers had to see that every day times 30 patients.
Above all, my husband was a good and kind man who wanted to make life as easy for me and his caregivers as he could. I shudder to think how difficult it would have been had he not been so determined to relieve us of the terrible burdens he had to bear.
Except for a few days after I broke my leg at my daughter’s on her birthday, I have never had to have a caregiver. However, that one short interval gave me a glimpse of the humiliation of having to rely on someone to help you prepare food, take a shower, and get dressed. My time will come, but I do not look forward to it.
The coin flip? Mine lands on caregiver. I prefer to be in control and not dependent on others, particularly my busy children.
