Almost one decade ago I began my role as a caregiver. I had a neighbor named Pat. He lived three doors down from me and my three children. For the first two years after I moved into the neighborhood, I only saw him one time; he was out front in his wheelchair inspecting the Christmas lights his son had put up. I just happened to be driving by at that moment and waved to him. Toward the end of our second year, Pat had decided to attend a party we were hosting. I spoke with him only briefly as many of our neighbors were crowded around him; they had not seen him in many years. Pat had been diagnosed with multiple sclerosis (MS) a few years before that party. It was a particularly aggressive form of the disease and he was uncomfortable with people seeing him. He was only in his late forties but declining rapidly. Pat did not stay long at the party. The neighbors were overjoyed and overwhelmed by the experience. They had missed him and spoke of nothing else for the rest of the night.
The day after the party, I learned that Pat enjoyed watching my children play from his second story bedroom window. He had four children of his own, all nearly grown, and he loved children. I sent him a written note telling him how much it had meant to me and all of his neighbors that he had come to the party. As I had not been able to really talk much with him, I offered to come visit him at his house and bring my youngest son, Reece, then two and a half-years old, with me. As I recall, he phoned the next day, eager for company. What began at that first visit was a friendship that lasted for six and a half years. Over the course of our first two years as friends, I watched MS quickly rob him of what little independence he had left. Suddenly, he was no longer able to transfer himself in and out of bed, or get to the bathroom alone. As days turned to nights, his fatigue made it a challenge to perform even the simplest of tasks such as pressing the buttons on the phone, taking his pills unaided, or changing his own shirt. Although, the thought had flitted through my mind at times, I had never dwelled too much upon it, but one day I knew the time had come to speak. With some anxiety, I offered to be his caregiver.
Caring for Pat had its challenges. He was incredibly stubborn. The disease had not affected his mind so I could not chalk up his unwillingness to change sitting positions every two hours to dementia. Pat did not want to stop working on his computer so changing positions did not appeal to him. As a result bedsores were an ongoing problem. I researched and we came up with solutions that greatly lessened their frequency. I had to learn how to treat bedsores when they occurred. I had to learn how to use a transfer board and a Hoyer lift. I learned how to change an external catheter and change his bedding while he was still in bed. Over time, I became fairly adept at numerous caregiving matters and fit new routines into our day as his disease continued to steal from him.
One morning, I sat down in a chair to work on my computer. Pat was freshly clean and dressed. He had taken all of his required medications, and had eaten. He was reading news on his own laptop, and didn’t need anything. As I began typing, I thought, “How boring! I wake him up and take care of his needs. I make sure his computer is in order. I get his lunch for him, help him with his afternoon pills and help him to bed at 7pm. And the next day we start the same process again.” Was he having any fun, I wondered? He confessed that it was not unusual for him to wake at 3-4 a.m. and lie in bed, physically unable to get himself up. When we discussed this problem, we concluded that he was up so early because he had had enough rest by 4 am. “Why do you go to bed so early, anyway?” I asked. “Because I have nothing to do,” he replied, “I don’t enjoy television except for sports. If nothing is on I might as well go to sleep.” This was discouraging. I realized I wasn’t doing enough for him. I was meeting his physical needs but that was the extent of it. He wasn’t engaged enough in his own life to stay awake.
We began looking at ideas to make his day more interesting. He loved poker so we found an online poker tournament where he could interact with other real players and chat online with them as often as he wanted. We signed up for a war game he loved (and later became a little too addicted to) but it allowed him to chat with other players, mostly other men, who seemed to be online all of the time. We downloaded movies and watched part of one almost every day. I helped him with his games when his hands refused to cooperate on the mouse. I set up his banking for him online so he could manage his own finances and pay his own bills. Outside his bedroom door to the garden, I planted pots full of colorful flowers. He could not help plant but he enjoyed watching the garden throughout the day. A hummingbird feeder and little finch feeder attracted birds, and a small fountain created soft sounds. Pat wanted the finch feeder moved; it was bothering the hummingbird. This hummingbird was new, I was informed; that hummingbird flew into the door to let us know he was out of nectar in his feeder; those two birds like to bathe on the fountain together. His own children and mine spent a great deal of time with him. He was like a regular man again, with a sense of community, and purpose, and life that he could observe and talk about.
When Pat died shortly before his 56th birthday, I told his online friends of his passing. They were stunned and sent their condolences. His neighbors, a few of whom he had allowed to visit him, all spoke of his garden and what a nice life he had had in spite of his MS. Another friend spoke of the change in Pat’s behavior over the years, how he had softened and seemed happy.
After Pat’s death, I felt that I had done a good job. I had learned so much about caregiving and experienced what a truly valuable role it is in someone’s life. I felt it was such a privilege to have filled that role and known that the last years of his life were happy.
I believe so strongly that activities, hobbies, and tasks are necessary in taking good care of someone toward the end of their life. People want to feel engaged and needed if they are 101 years old or dying young from a terminal illness. A young healthy person might imagine that if they were dying, they would want to be allowed to lie in bed all day and watch television. Some terminally ill and aging people do want that; but I have found that the majority wants to feel like they matter to someone else until their last day on earth. Because of that, you will continue to see more posts and videos from me on activities for elders. I know how busy all caregivers are. I truly do. So if I am encouraging you to squeeze some activities into your routine, it is because I have seen what they can do. Not only for your loved one or client, but for you, as well, because you can participate or you can just sit down for a minute while they do the activity. It is also my hope that you will enjoy the happiness that they derive from the projects and tasks. I will recommend activities that are easy, inexpensive, and require minimal prep and cleanup. As always, I welcome your feedback about what works for you and what doesn’t. I ask that you try some of my suggestions or work some of your own ideas into your weekly routine. It might create some of the best memories you will have.