I am heading to Colorado this week, helping move my parents to Texas – a place they lived for many years before they retired. My mother will live in an apartment down the road from the nursing home where my father, suffering from "profound dementia," will spend the rest of his life. This situation is a far cry from the happily retired life they were living only a few years ago – skiing in the winter, hiking in the summer, entertaining friends, visiting grandchildren. My father seems lost, my mother beside herself.
His decline has been like the proverbial downhill snowball – starting with tiny, confusing changes in his behavior, gaining speed as he struggled with delusions, and then quickly burying his ability to function independently as he forgot how to pay the bills, to read a book, to tie his shoes. The last Sunday crossword puzzle he attempted rested, partially finished, on the table next to his chair for months after he quit trying.
When he became incontinent and started wandering confused in the hills around their home, my mother felt it was time for him to get round-the-clock care, although we all had mixed feelings about it to the end. It was remembering something my dad had asked of us years ago that finally tipped us over the edge - that we promise to place him in a nursing home if he ever became as lost and dependent as his own mother was at the time. I know my "old dad" would want this. I want to honor this clear wish of his, even more than I want to indulge my own desire to find a way to keep him home.
Never an "easy-going" man, he was – anyone would say it – a good man, an honest man, a hard-working man. He grew up during insecure times - the Great Depression followed by World War II. His father was overseas during the war years and was a troubled man at home, taking out his own insecurities on his only son. Older relatives marveled at what a responsible and conscientious boy my father had been, traits that stayed with him throughout his life. As a father, he seemed to see himself primarily as a "provider" and spent long hours at work. It took me way too many years to realize that this was his way of loving us – to work hard to make our lives easier than his had been.
He is still loving us, I believe. As confused as he is, as slow and as helpless, he is kind, compliant, usually quiet – clearly not all there, but seemingly at peace with it now. He's made this much easier for us than it might have been. While he was dumbfounded when he was told he could no longer drive, he transitioned to the passenger side with a fair amount of grace. He was patient with us when our reality suddenly diverged so distinctly from his, allowing us to bring in firewood from the shed, but keeping a sharp lookout for the mountain lion he had "seen" raising her cubs in there. Only once did he really break down within earshot, heartbreakingly, to a friend: "Please help me, Larry; I am so lost!" Mercifully, that realization seems to have passed.
I cannot begin to imagine what it's like to no longer be able to trust your brain to interpret the world accurately for you – to see mountain lions that aren't there, to believe that John Wayne is your new roommate, or that Oliver North is arranging one last B-52 flight over Russia for you and your crew (oh, why could he not have delusions of Gandhi?). How else do we know the world except through what our brain interprets for us?
Yes, he is lost. But some of his most essential qualities remain - the courage, the stiff upper lip, the love in his voice when he calls me "honey," the protective impulses of the good father. These sweet remnants will go too, we are told, as our father continues to wander away, body and soul. But take everything else, this disease cannot take our love for him. We have known and loved him through most of his "manifestations": young father (he was 23 when I was born!), sometimes absent provider, adventurous retiree. We can only keep loving that good man now, and backward through time to the child that we didn't know but whom he may most resemble at this point. He will not be lost to us.
[photo: my parents on the road to Silverton, summer 2008]