As my father’s health began to change in the summer of 2013, I admit we didn’t see the full magnitude. Disturbed sleeping patterns were hard for me to discern since I spent only one day a week with him sleeping in my home. I might hear him cry out once or twice. He might rise in the morning and stare at me or my son with that long, evaluating gaze. The biggest clue I received was his sudden and frequent lapses into naps. If you put him in a chair and turned away he might drop his head and doze. Not an issue but in the middle of conversations it was awkward.
During this time his youngest brother got a lung cancer diagnosis. I knew Dad was starting to lose his connection to the present and thought we should go. So we took a trip to our home town.
The 7 hours gave me, my father, and my brother a chance to spend some time on the road, chatting, and hopefully bring Pop some joy. Sadly my father is a strange man. As a passive aggressive personality, he’ll say nothing but complain about it later rather than deal with it at the moment of crisis. If he does deal with it he’ll snap suddenly and petulantly. Before kids I would have snapped, but after kids I see the pattern. During one moment on this trip we all sat in front of an aunt’s TV. My father accused my brother of ignoring a question to which my brother replied tersely that he’d already answered. Dad says he asked three times, which to be fair could happen. My brother doesn’t hear well out of one ear, often multitasks, and could have missed the comment. But since I didn’t hear the question either I had to side with my brother. I don’t think I heard him ask three times. His sister didn’t chime in to agree or disagree. She was shocked it was happening I think.
These types of encounters became more frequent with Pop. They never stopped feeling weird. Having a 12 year old prepared me for the worst of it I think. Kids hear what they want to hear, understand what they can, and don’t hold back on how they feel.
In retrospect my brother and I think in his mind he did ask three times. As my father continued his decline he’d imagine whole conversations that never took place. Forgetting the previous twenty minutes, he’d fill it with something, usually from the TV. I’ll say this about TV and LBD. It’s a blessing and a curse.
Television and entertainment options abound today. The elderly can spend their final years reliving the entertainment from their youth. My father needs the background noise, but incorporates it into his consciousness in subtle ways. One day in the nursing home I repeated a word “really?” from a commercial and he asked me why I didn’t believe him. I replied I was quoting a commercial and he asked where the TV was. I pointed at his bed side and he couldn’t see it. He was turned toward me, away from the set, but when I rolled him over a bit he seemed surprised to find it there.
During Hospice once I asked if his hallucinations were back. He said no, “except for the little people on the glass here.” It wasn’t until much, much later I read Lewy Body was once called the “little people” disease. He pointed up to the TV and said, “They started out up there and jumped down to my cup.” Without the TV he’d stare for long stretches of time into space, another symptom.
The Parkinsonian symptoms eventually robbed him of facial expressions too, leaving him with a slight down turn of the lips. When we thought all he had was Parkinson’s I asked him to see a counselor for depression. Other things got more important. Time moves too fast when you want to ignore a disease. We ran out of time for any antidepressants to do any good. In retrospect (again) it might have gone badly; LBD patients don’t always respond well to mood stabilizers.
For the last two and a half years we spent our time balancing medicine in the hopes it could smooth out the edges. If we were lucky we could keep it at bay. A nursing home, much less hospice and hospital after hospital never entered our minds. Like my Uncle who passed away a mere three weeks from our visit, we had no idea how little time was left. I took Pop to that funeral and even then I think he was struggling to hold things together. He told me so later in one of his final lucid moments. “I’ve been holding it back for a long time, but I guess it finally caught up with me.”
When August rolled around we no longer let dad house-sit. If he needed to be alone for more than a day he either stayed with me or I drove by to take him out for a while. We struggled furiously to finish out my brother’s garage and make a home for dad, but in the end we lost. Barely two weeks from completion I was helping nail down baseboards and hang cabinets and noticed my father was upset he couldn’t help. Said he felt useless. I didn’t know what to say and so let it go, but decided to bring him home with me that night.
We loaded him up and took him home. My wife went to a party with her running club and I took him out to eat. We had a terrible dinner and he was very out of sorts. Moody, complaining of his stomach. The next morning he described stomach flu symptoms and I tried to treat that condition. We skipped church and I took him home, hoping he’d recuperate in his own bed with his own stuff. Instead he ended up in the ER because he couldn’t urinate.
And that was the last time I saw my father as he was. What came back two months later was a shell molded in the image of my father, but they poured all his memories back into his head, stirred it up, and then screwed the top back on. Then they hooked up interference devices to all his senses and filtered the response through his jumbled memories.
We never again had a fully coherent, intelligible conversation. I miss Dad. His fall is a story of patience, trial, and suffering.
But it’s only one view of how this disease ends; there are so many other ways it could have gone.