What My Father and His Dementia Taught Me
This summer we buried my father. Like most humans, he was complex. He had good qualities and bad. He was quiet and reserved but he was also a master storyteller. He was a homebody and a loner, but he loved his big family. By knowing him and accepting him, I got comfortable with gray areas – because he showed me that things were black and white and in between. He taught me that two things can be true at the same time.
In the months before he passed, my father’s experiences, and mine, reinforced that lesson for me. Due to a series of unfortunate events, he landed in the adult behavior unit aka the psych ward at the local hospital. I called the ward the place nightmares are made of. And yet, it also featured prominently in one of my daydreams. Two things can be true at the same time.
My father was 90 years old, losing his hearing and his vision, and he had dementia. When he was first admitted – involuntarily – I described his dementia as mild. Twelve days later, it was full blown. How did that happen, I wondered. Was the disease bound to progress by that point? Perhaps. That’s the version the doctor who oversaw the unit seemed to prefer. I told myself out loud that it didn’t matter. This is where we are. So what? Now what?
But silently I asked myself a follow up question over and over. Was the rapid progression of the disease brought about by events – a hospitalization, followed by a short stint in a rehab- two trips back to the ER, a week in the psych ward, followed by a move to a nursing home, and then back to the psych ward via the ER yet again? This was the answer I would have believed if I had allowed myself to, but I tried not to entertain it because it led me down a path of what-ifs and second-guessing my decision-making.
I couldn’t discuss that option out loud with anyone because it triggered a chorus of, “You are doing the best you can,” and “He is lucky to have you,” or “You are an amazing daughter. This is not your fault.” These were kind, well-intentioned remarks but they were also insulting because I already knew them to be true. Compliments can insult. Two things can be true at the same time.
The first time my father was committed to the ward, I fought fiercely to get him out. I toured nursing homes thinking I could find the perfect fit. I argued with the doctor – telling him just what I thought of the unit he ran. I called the case manager daily for updates and pressed him for options. And when I got a notice in the mail about the supposedly routine court hearing for involuntary commitment, I consulted two social workers, a court doctor, two lawyers and a probate officer. I prepared testimony and lined up character witnesses. How could my frail, 90 year old father who could only walk 20 feet and was too confused to use a television remote or a nurse call button, be a threat to anyone?
When someone asked me what my plan B was if I wasn’t successful in getting my father released, I told them I would break into the ward, bust my father out, and hopefully get myself involuntarily committed. The ward was no place for an old man in his condition, but it looked perfect for me. To sit alone, in pajamas, all day, be served three square meals, and not only have no one bother me but have the people their actually ignore me, is a working mother/working daughter’s dream. – just for a few days. The hearing was postponed and my father was placed in a nursing home, although not my first choice. But alas, he was back just three weeks after he left. And that time, I wasn’t fighting so hard, although I continued to be his advocate.
“Why isn’t he on the schedule for fresh air breaks? Please add him.”
“What do you mean you lost his dentures?”
“If the nurse can’t see him as more than the old man with dementia, then assign him a new nurse. This is my father we are talking about.”
Advocating was one thing, but fighting felt fruitless. I understood why he was there. It wasn’t due to his behavior – and I corrected anyone who said otherwise – it was due to the way the disease behaved. And as long as those behaviors existed, the nursing home staff wouldn’t take him back. Still, I wondered, was I quitting on my Dad?
The second time, I wasn’t telling anyone I thought can help me, “My father will not die in that hospital.” The second time I was struck by how cruel it was for anyone to live like that. Selfishly, I wasn’t ready to lose my father, but when I looked at him, strapped to his wheelchair, his head in his hand signaling his confusion, I thought to myself, “I am watching my father die and yet he is already gone.” Two things can be true at the same time.
I finally got him back to his nursing home and we had many great visits before he died. Even when he could no longer walk, or remember much of his life, he was still strong and independent . Two things can be true at the same time.
I will miss him every day for the rest of my life. And, I am grateful he is no longer struggling. These two things are true at the same time.