My father has Alzheimer’s disease. He lives in a long-term care facility that is attached by a series of lengthy hallways to the retirement home where he lived for the past ten years. His wife, my stepmom, still lives in the apartment that they once shared together. She visits him most every day – usually in the evening when they can share the sunset and some conversation before she tucks him into bed.
I live three hours away, and during the week I am a teacher. So my visits to Dad begin each Saturday morning at 7:30 when I head north on 95. It amazes me that somehow the drive always goes so smoothly. It is a notoriously difficult trip – fraught with traffic jams and long delays. I like to think that there is a guardian angel that personally shepherds my car each week.
As I park the car and take the elevator to Dad’s second floor apartment, I never know quite what to expect. Most often I find Dad sitting in his wheelchair in his room, anxious and troubled. There is always an issue. It doesn’t matter what the issue is. For Dad the issue is real and needs attention. He usually tells me about it before he says hello. I know that I will sit down with him, hold his hand, share lunch with him in the dining room, and that, at some point in that process, he will begin to relax.
Dad has a combination of Parkinson’s and Alzheimer’s. He exists right now in a world in which he perceives the frailty brought on by the Parkinson’s. He is frustrated with his incapacity, tortured by his memory loss, and desperate for answers that the Alzheimer’s will never allow him to comprehend. I pray that his disease will progress soon to a point where he is no longer riddled with the questions, although I know in my heart that this will coincide with a deeper loss of the man who is my father.
Dad still has moments when he shines as a caring father. “Are you working hard these days?” he might ask. I can sense that it gives him pleasure to feel that paternal role, a role that he cherished and performed magnificently for most of his life. And yet, typically, before I can even answer, one of his own needs arises and the roles instantly reverse. I understand and accept this change, but it always catches me a little how much I cherish those moments.
Sometimes these days are pleasant days. Dad naps peacefully. He likes me to sit in his wheelchair as he sleeps so that he can see me when he awakens. He might open his eyes to make sure that I am there, and it only takes a little wave from me to cause him to smile and drift back to sleep. On good days, we might fit in a few cards games (his rules) or create a joint picture with paper and pen. My very artistic father never ceases to amaze me with what comes forth from his pen. He requires great prompting, but the images are quirkily his own.
Other days may be not as good. Dad may be inconsolable, despondent about life lived separately from his wife, and angry about legs and memories that fail him. His demands on these days – both physical and emotional – are endless. I have learned not to be artificially cheerful. I can’t give him hope for a return to his former self. I can only let him know that he is loved and valued and supported.
Each Saturday ends with us watching Mass together on the television. We have a standing joke. I position my pajamed father in front of the television. Then I pull the upright chair in his room over next to him, and ask, “Excuse me, sir, is this seat taken?” Usually Dad smiles at our weekly skit, sometimes he looks confused. It is worth the risk for the pleasure that Dad shows when the joke works.
We watch the Mass together. It amazes me that my father, who could not tell you what he had had for dinner an hour earlier, can recite the Apostle’s Creed flawlessly, and that his voice, so weakened by Parkinson’s, can still sing each hymn with its lovely tenor quality.
As Mass nears its end, I can sense that Dad is becoming a little tense as he knows that our visit is also coming to an end. Years of practicing patience as I put my own dawdling children to bed hold me up as Dad asks for that last sip of water, for the Kleenex to be placed just so, and for the night-light to be correctly adjusted.
As I sit on the bed for the final goodbye kiss, I say, “ Good night, Dad. I will see you next Saturday.”
Dad always asks, “What day is it today?”
“It’s Saturday, Dad. Almost Sunday.” That “almost” makes the prospect of our next date seem sooner, and Dad usually accepts the last kiss and closes his eyes.
Each Saturday evening as I drive back down 95, I am grateful for the three hours. The return trips are usually the same unbelievably smooth driving. I sometimes wonder if maybe the trips are actually punctuated with heavy traffic and long delays, but that my distracted mind simply doesn’t notice. Whatever the truth, this return trip is a time for me to sort through the events of the day and transition back into my other world so wonderfully filled with family and friends and little students and pets.
I often wish that I could bring Dad home and care for him here. I know that I am fooling myself to think that this would be possible. His needs are immense, and he is in a place where he is well cared for and safe.
Dad’s illness has been so hard on the many of us who love him. And, of course, it has been hardest on him because he is simply cannot understand it. We have no way to predict how his disease will progress. I cannot bear to think into the future – 6 weeks, 6 months, or 6 years.
And so my focus is simply next Saturday when I will head north on 95. Next Saturday, Dad and I have date. And that is the one thing that we can both believe. a
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