My father moved in with my brother Labor Day weekend of 2010. Snapper and I drove the 400 miles in a van to load his possessions. While it was kind of sad to think, we knew this was a momentous event. More than likely this would be the last time either of us visited the seat of our family where my father was a member of the community.
Dad lived his life like many people; he drifted from situation to situation, never overtly handling the events of his life, which freed him up to feel personally maligned by each event. This isn’t to say he didn’t enjoy life. On the contrary, what life he lived always looked as if it gave him joy, but taking the long view I see he let so many precious moments slip away because he couldn’t find a way to participate in them. He’d built a room, totally encased with a window to the world that made it possible for him to see events but not engage in them. It also allowed him to take offense when others didn’t invite him to participate. Dad was the kind of man who says nothing when plans are made, giving him the moral authority to be offended at being ignored.
He’d packed only one or two boxes in preparation. I knew this would happen, not because of secret knowledge of Dad. Name a friend you’ve ever helped move who actually had anything packed when you arrived. But 400 square feet packs up easily and we were done. No one came to see him off. No one special called him to give him advice for living in the big city. The men who loaded his truck knew him from his days at the furniture factory, but it seemed a cold acknowledgement, like helping your best friend’s cousin move out of his girlfriend’s place. And with a crash of truck doors my father left his birthplace and everything he’d known. Atlanta was the farthest from Henderson he’d lived since 1975.
Snapper rode with Dad who drove 50 miles per hour, weaving back and forth, to Atlanta scaring the living shit out of my brother in the process. And that was the first we knew he had problems driving. In fact, it was the first a series of behavior issues that in hindsight should not have surprised us at all, but we had no idea he had LBD.
The first year turned out to be hard, actually. Pop didn’t find a new set of friends. He didn’t get involved with the community. He drove around each day to look at something new, like a park or a building, but didn’t join any centers or attend a church. He stayed home most of the time watching TV and dreaming of winning the Publisher’s Clearinghouse Sweepstakes.
After a few months I started a routine of having him over for dinner each week. I used to agonize hard over what to make and eventually filled each visit with home cooked, traditional “American” food. Relatives told me he enjoyed these visits immensely and preferred my home. Sure, I thought. He was treated like a guest each time, something my father loves being. He enjoys being treated special, but it was lost on him that if he lived with me he’d become just another person in the house.
In fact, he’d hate my home. My house is filled with rules, routines, and expectations. While Snapper largely tried to leave Dad alone, I would have annoyed the living snot out of him to join a group, get a job, go see people. Each visit was punctuated with questions on where he went, what he did. Was he engaging in life?
The first year we didn’t know he had DLB and it never occurred to us he might be slowly withdrawing due to distrust and confusion over normal events. We just figured he was so shy he wouldn’t do anything without being pushed. This passive-aggressive state drove Snapper nuts. Dad would run the dishwasher every day with only a few items. Snapper would complain and Dad would do it again. They put tape over the buttons and he’d pull it off. A load of laundry was done every day. The TV ran all night long. Dad was perpetually cold and ran a space heater till it burned out. I was forever hearing tales of frustration from both of them and honestly tried not to get involved. That never truly works.
And then we took away the keys. As anyone who’s done this knows, life changes when you lose your driving privileges. He railed and complained and argued, but his neurologist said “you stop driving when your family tells you to stop driving.” By this time he was on a cocktail of drugs ranging from his normal heart meds to synthetic dopamine for the tremors. Unable to drive anywhere he became depressed and moody. My brother also became depressed and moody and no one could be happy. I can’t speak for him and no doubt he’ll write his own narrative.
So I gave them money to build Dad an apartment in Snapper’s garage, to give Dad is own space and Snapper his life back. It was cheaper than paying rent somewhere and would give Snapper and his wife desperately needed privacy. Dad could feel like he was on his own too.
In addition I tried to give my brother time off; Dad had a sleep over each week. It was then I noticed many of the behaviors Snapper described to me: the sleep disorder with nightly screams, the snapping, the excessive use of water. But Dad enjoyed the visits, Snapper enjoyed his time off, and we spent another year under construction and watching his symptoms increase.
After his final diagnosis of LBD we began to piece together his story, recognizing how certain behaviors would balloon and play out under the umbrella of his disease. This is probably the part of the story where we discuss a little bit what Dementia with Lewy Bodies does to the human body.