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PATIENCE, PLANNING AND SUPPORT: REFLECTIONS ON DEALING WITH AGING FAMILY MEMBERS
close. One takeaway that struck me most was her suggestion that the medicine that each of the doctors had been prescribing should be stopped. Wow, that was a stunner. Her rationale was that, at best, the medicine might extend the diminishment of the mind over time but that it also seemed to prolong that time. It does not cure, and in some ways, the side effects are comparable, if not worse, than the disease itself. It made little sense to me then, but perfect sense today. Yet, the “elephant in the room” was, does the medicine prolong life and maintain quality? At least to us, then, the answer was “it’s possible.”
The medicine may lessen some of the mental diminishment in some unquantifiable ways. Still, the disease marches on
in other ways, and while it may prolong life, it does little
for the diminishment, which at best may be slowed slightly. As we concluded our meeting, we were essentially told that there is no cure for Alzheimer’s. As harsh as it may seem,
we were asked to consider the reality that Alzheimer’s ultimately results in the body’s withering, and it seems too the soul. Her advice was for us to allow it to run its course on its own predestined timetable and continue to be loving and supportive, yet always reflecting upon the relationship as it was. Early in the disease, there are more good days than bad. In the middle of the disease, there are as many good and bad days, and the bad days endlessly string together toward the end.
My belief, though unscientific, is that the first manifestations of mental diminishment to ultimate death for her were about four years. Over that time, my social butterfly Mom went from a tireless shopper and visiting fanatic to someone so dependent upon Dad that she would not even speak. In her last weeks, she would not even eat. Mom didn’t seem
to know what was happening to her, but for all of her apparent ambivalence, I would see my Dad sometimes so despondent that I mainly worried for him. The crushing weight of having to tend to every single need of his wife was suffocating him. At some point, all of the children pitched in to hire outside assistance, and then some VA benefit kicked in, which gave him a welcome reprieve. It got to the point that caring for Mom was the easy part, but caring for Dad, who was predominately caring for her, was the hardest part.
In the summer and fall of 2018, Mom’s illness had
progressed to the point that special equipment had to
be obtained. Her condition had become hopeless and inevitable. I would often travel to see them and sit and talk to her with no response. I would sometimes have to fight back the tears because of Mom’s unfamiliar gaze back at me. I sensed that she was now so mentally gone that she
had no idea who I was. Late one night, December 18, 2018, I got a call from my sister, who lived close to my parents, that she didn’t think that Mom would make it through the night. I quickly dressed and got in my car for the hour and 30-minute drive from my home to theirs. The night was miserable. It was raining steadily as I drove, navigating
one country highway after another. By the time I arrived, she had passed. I missed being there with her by about 15 minutes. I spent some time with her there, thinking only of my childhood with her, her presence at my wedding, and my children’s birth. Her deserved “wippins” for sassing her was as much of a memory as the presents under the tree. There was no better Mom that a boy, and then later, a man could have ever wanted.
2014
Over time, it seemed that Dad could recover from the depression he’d been under caring for Mom, but he never forgot about her for a minute. Family gatherings would continue, and Mom would always be a topic of discussion at some point. Dad even mistakenly called one of my sisters by our mother’s name. Dad was so committed to Mom’s care from day one that little did I know. He had kept a journal of most of the events only referenced in passing here. After she died, Dad began to compile his journal into a book that he later published, hoping that some caregiver would gain just
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