… by trying to work together
During three years of caring for a senior parent, my husband and I took many steps to ensure that neither of us would shoulder too many burdens, lose too much sleep, or just reach a point where one of us ran out of steam. We knew that any one of these could contribute to one of us getting sick, or at the very least not doing our best to help his mother through difficult times. We wanted to emerge from the period as much in love with each other as we had been before the caregiving started.
The two of us were our own mini-caring inner circle, but we were well-supported by professionals and friends, first in SouthCarolina and then in Northern Virginia. Everyone we asked for help was happy to assist. In fact, when a hired caregiver did not show up for our daughter’s wedding, causing momentary but very dramatic chaos, friends pitched in to help, and one of them left the wedding reception, drove Mother home, and helped her get ready for bed.
Both of us are only children, so we had no siblings helping us. We had to work together, making sure that we shared, as much as possible, anything that could be shared. We knew that the chances of us caring for a second elderly parent sometime down the road are great, so figuring things out was important. Some of the challenges we faced, as described below, are no different than most people encounter, but I’ve explained how we went about finding solutions.
Problem: During the first year, after his mother’s stroke, my husband drove monthly to South Carolina, and over time these trips became exhausting. He usually left on a Tuesday or Wednesday and returned on Sunday. Helping his mother recover and remain in her condo was our initial goal.
Solution: I began to participate in these trips, taking off a day from work each month to help. My husband continued to drive down early in the week, but I flew to South Carolina early on Friday, helping him throughout the weekend, and most importantly, sharing the driving on the 600 mile trip home. We traveled this way eight times. After each trip we were both tired and, yes, a bit stressed, but neither of us was ever too exhausted to function.
Problem: As I wrote about in my short series Moving Mother, it became clear, with dementia symptoms developing rapidly, that she needed increased support. She needed to relocate. With Mother’s blessing, we helped her move to an assisted living apartment nearby our home. Hundreds of details were required to make this long-distance move.
Solution: We divided up the chores. My husband took over the tasks that required his power of attorney documents to accomplish — selling the condo, arranging the financial matters, dealing with doctors’ records. I searched for an assisted living community, called movers, contacted the church resale shop, researched doctors near Mother’s new home, and initially helped Mother sort out possessions that she would give away or sell. Together we packed her up. Our consultations with one another occurred at dinnertime. For a detailed series about moving aging parents from far away, read the ongoing series Moving an Aging Parent from Long Distance, by Joy Loverde (part I, though she has now posted more than 15 chapters) over at the Eldercare ABC Blog.
Problem: We had great plans to set up Mother’s apartment with draperies on every window (I was going to alter the ones she had on windows in South Carolina), lots of her pictures and paintings hung on walls, and a variety of other touches to remind her of her life before the move. However each task took monumental amounts of time — time we did not have and time we would not be able to spend with her.
Solution: We erred on the side of spending more time with Mother rather than decorating. Her apartment came with wonderful blinds, and we realized that hanging a limited number of pictures was just fine.
Problem: Because we tried to spend time with Mother at least every other day, and often every day, our exercise routines suffered.
Solution: We took turns visiting and eating meals with her, though my husband spent more time than I did. On those nights the person who was not with Mother tried to exercise. Although at times we each missed exercising several days in a row, once for early two weeks, we tried hard to know who was missing the most and adjusted activities so that person got extra time to work out. Our goal was to keep exercising, not to keep doing it as much as we had in pre-caregiving days, which was impossible.
Problem: We did not always notice when mother’s physical condition was declining in ways that required extra assistance.
Solution: When we were confused we asked others, both at her assisted living facility and friends, to share their assessments with us. Often they were more perceptive about small changes that we were missing.
Solution: Throughout the three years we constantly talked about money. It was Mother’s to be spent, and her care was the first priority. Nevertheless, we often worried about running out, and many of our dinner conversations focused on “What if?” questions. In the end we spent a good deal of money but were pleased with the care that it allowed. More importantly, Mother was, too. We were lucky, however, that she only needed around-the-clock care for the last three months of her life. As a precaution we visited nursing homes, and selected one or two as possibilities. Moreover, we constantly made decisions about what we needed to do and what we could pay others to do for us, leaning toward doing things for mother ourselves when possible.
Problem: Getting irritated with each other.
Solution: The longer we helped with Mother’s caregiving the easier it was to get irritated with each other, but we managed to trudge through the rough times. There were tears and shouts on occasion, but we paid close attention to these as red flags. Because we were trying so hard to figure things out, one of us almost always pulled back when tempers flared or confidence flagged. Hugs are good.
Problem: Who spoke with Mother about her most private issues?
Solution: My husband had this job. Mother, despite her end-stage dementia, had lots of pride and a sense of propriety right up until the day she died, and to know that I knew about some of her problems would have pained her greatly. Thus the most difficult conversations took place with her son. I then made sure that, after especially difficult conversations, my husband had a nice dinner at home or at a restaurant.
Problem: Doctor’s appointments.
Solution: We shared them as much as possible. I specialized in the dentist, the gynecologist, and the eye doctor. My husband focused on appointments with the primary care physician.
Problem: Going to the office and missing work because of Mother’s needs.
Solution: Not far into the caregiving process we realized and then accepted that our vacation, personal leave, and medical leave days would be consumed quickly. Making telephone calls at work was often required, and we were both fortunate to have employers who did not complain about these calls. The two of us loved and continue to love our jobs, so we tended to spend extra time at work when not responding to caregiving demands. The few times when one of us thought about quitting work, we were reminded by friends and colleagues about how much we cared for our jobs and that all caregiving experiences end at some point.
Problem: We both had trouble sleeping, especially during the last six months of Mother’s life.
Solution: Monitoring our exercise was critical because the more we missed, the more sleeplessness we experienced. We also were sure to take time before bed each evening to relax, in our case with classical or folk music on the radio. We tried to avoid caregiving or business tasks — paying any bills, thinking about Mother’s finances, talking about problems — in the hour or so before bedtime, though we were not always successful. A middle-of-the-night phone call, and we got plenty of them in the last months, ensured poor sleep pretty much until it was time to get up. Only now, five months later, have we stopped snapping to attention, whenever the phone rings.
Problem: Finding people to care for Mother during her last months.
Solution: We asked for information and ideas from friends, professional colleagues, professionals at Chesterbrook Residences (Mother’s assisted living community), and people from church. This group helped us find amazing people, some from an agency and some not. This same group helped us locate a hospice program when that became necessary.
Problem: Not enough time to spend with each other.
Solution: We ate out more often, or at least brought in soup and salad. We continued to go to the occasional concert and made time to spend with other family members and friends. Several times my husband told his mother that we were going out on a date, and she always agreed or at least nodded affirmatively, even when she was rapidly deteriorating.
Problem: Not enough time to spend with my parents who are in their 80’s.
Solution: My parents neatly solved this problem, telling us to care for Mother and not to worry if we did not visit them as much as we or they wanted.
So we survived. It was a partnership, and we are certain that it is not the only time we will collaborate on a project of this type. What is most exciting, however, is that we emerged from an arduous period, with stronger bonds as a couple and still very much in love.
Caregiver burnout is a major issue for those with this awesome responsibility. Don’t overlook the role of humor to make things more bearable. Things that made me angry and frustrated when my mother (who had dementia) was alive, in retrospect are filled with funny happenings. This is true too for the many caregivers who read my blog and contact me about my book which emphasizes humor as a healing balm. Caregivers need all the emotional support they can get. Dementia is a disease that knows no boundaries. It is blind to the categories in which we usually place our fellow human beings. It can occur at the age of 55 or 85. It can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. It will not spare ex-presidents or ex-prime ministers. It did not spare my mother. Tears are shed by husbands and wives, sons and daughters, brothers and sisters—in fact anyone responsible for the care of a loved one with dementia.
Bob Tell, Author
Dementia Diary, A Caregiver’s Journal
Print edition: http://www.dementia-diary.com
How right you are about about humor, and it’s too bad that I forgot about it in my post, though, maybe it is because we are still a bit too close to Mother’s death. But yes, I do remember moments when humor diffused the situation, and maybe I’ll try a post about how we made use of laughter. Thanks so much for your reminder.