15 February, 2002

What do you do to get ready to visit your dying father? Remember the things you adore about him? The ways he made you crazy? Buy a black dress? It seems important, somehow, to “know” how to do this, as though it’s something you may need to do again.

But it’s not. There will be other people “failing” – an interesting cultural commentary on how we’re connected with dying and death – but they won’t be my dad.

Mo started slipping away years ago, before my mother died. Our last trip together, she said she was worried about his forgetfulness. After 56 years of marriage, during one-third of which he was a heart patient, the thought of dementia, too, was more than she could bear. We spent many hours during those years crafting the script of what she would do after he died: where she would live, who her friends would be…But she didn’t want to be an old lady, and she did not want to be alone.

So, she found a way out that was relatively easy for her – and devastating for the rest of us. One rainy Saturday in January 1992, she had a heart attack. A week later she had another one, and she was gone.

After she died, my father no longer had his alter-ego to keep him honest, and remembering.

His new wife, G., whom he married four months after his 80th birthday – six months after my mother died – hungrily absorbed every detail of his life. The stories, considerably altered by then, re-imagined history to fit his current image of who he had been. He was keen on having been a model grandfather; the tales about his efforts to please his granddaughter were laughable even in the midst of my father’s disappearance.

G. knew stories about him and his family that my sister and I had never heard. We had no way to triangulate the veracity of those sagas. Eventually we learned to treat them as somewhere between redemption stories and allegories…like the one about his “real” birthday, the date he told G. was the day he was born. According to him, there was a mix-up when they immigrated from Minsk, and he was given the birthday we had always celebrated.

I had no idea where that story came from. Towards the end, when he had lost his English and was speaking Russian for the first time in 84 years, or Yiddish, or something at least totally incomprehensible to me and the Filipina nurses, it was too late to ask.
The birthday I know is nine weeks away. He would be 90 this year. When I think about his birthday, I get three images: one is an article I read decades ago about dates of death. In the 1980s, researchers posited a correlation between birth and death dates. The advent of big data has put a crimp in that theory, but I’ve still thought about it every year. It seems likely my father will die within six weeks of the birthday I celebrate.

Following a series of small strokes in December, his arteries were so occluded it became difficult for him to stay awake. That and the cardiac-induced dementia decimated what was left of his cognitive skills. By early January, it was clear G. could no longer care for him. The responsibility for transferring him to the skilled nursing facility fell to me, which brought back the second image – etched into my brain right after he was diagnosed as a heart patient. Trusting my discretion, he told me had a bottle of capsules he kept in the medicine cabinet. If anyone tried to put him in “the home,” he was going to swallow the pills. The pain of moving him was exacerbated by the realization he had waited too long.

The third image is my dad in the hospital in 1989. He was in the ICU 10 days before they diagnosed subacute bacterial endocarditis, a life-threatening infection of the heart lining. Once they started massive doses of antibiotics, he began to respond. His erratic blood pressure stabilized and they moved him to a first-floor room. Looking back, we should have gotten him another room. This one was dark with a window obstructed by an outside wall. I suppose we were so amazed and happy he was alive it didn’t occur to us we all could have used a sunnier room.

The man in the other bed was 99. He had no visitors and he never talked, never stirred. As my father began to recover, and get an inkling of where he was and what was going on, he asked about his roommate. When we told him, he started to cry. The man in the other bed was his worst fear.

Two weeks later his doctor moved him upstairs to a single room with a big sunny, ocean view window. He was able to get up a bit, get himself to the bathroom, and eat real food. We walked into his room one morning and found him sitting on the bed, legs dangling over the side, sobbing. He had just gotten the news about what was wrong with him. He was crying because, as a physician, he knew how close he had come to dying.

While he was hospitalized in 1989, my mother told me whenever I came to San Diego to visit that my father worried it would be our last visit. It’s one of the only things she ever told me that I really regretted she told. Years after she died, it still made me crazy every time I left him.

16 February

I spent most of yesterday alone with my father. It was the first day G. had taken off since January 7. When I got there, Mo was already up and dressed and out in the hall in his wheelchair. He was sprawled over his tray table, a pillow under his face, fast asleep. I sat in the hall with him as he slept and woke, sat up and folded back down.

I watched the other patients’ relatives come and go.

There was an attractive, well-dressed woman in her late 70s visiting her husband.

“Who am I, John? Do you know, my John? The love of your life? Is that who I am, John?”

And then the snappily dressed, trim, healthy looking man, probably not 75, with his wife slumped over in the wheelchair. He was cheerfully walking back and forth from her room at the end of the hall, to get her ice, water, pour her juice. Going with her to the dining room and, I imagine, gently feeding her lunch.

It takes a lot of courage to face death the way these caretakers are facing it – daily, hourly, lovingly, sadly, as they watch the people they love slipping away, some quickly, some agonizingly slowly. Touching as these scenes were, they were not as heartbreaking for me as the many rooms with no visitors. Mo was right; being abandoned at the end is a terrifying thought.

I wasn’t expecting much from my father. He had spoken no English for almost a week. For days, I thought that because I was there he would come around and speak English. I got annoyed with G. constantly focusing on whether he knows her, and how hard she tries to get him to speak English, but I was beginning to understand her frustration, disappointment and anguish over losing him.
Robyn, the only African-American staff member on duty that day, has a theory about what’s happened to guys like my dad. She tells me they’ve had lots of doctors as patients and it’s clear to her they’re really smart; they just used up too many brain cells being so smart. I really want that to be true, but at the moment it’s worth everything just to hear myself laugh out loud.

The night before he had told me that he was happy to see me; today I’m trying just to be there with him and have that be enough.
He’s lost almost 20 pounds since the last time I saw him, seven pounds in the last week. Although they’re giving him something to stimulate his appetite – which I find nonsensical at this point – he’s only slightly more interested in food than he’s been since mid-December. The strokes that took his intellect also took his appetite. It’s strange for me, because for the first time, Mo really looks like an old man. He’s suddenly wizened, and he’s got the remnant of a nasty bruise by his eye, acquired wrestling with one of the aides trying to get him into the bathroom.

He gets extremely agitated in his sleep. It seems to coincide with altered breathing, and causes him to call out in something like Yiddish, something like babble – oyzega, aizaga… it’s a word he says over and over and over. It’s a street in Minsk, it’s his pet name for his mother who died almost 80 years ago, it’s an expression that means enough, let me go.

For a while he sat up, watching people go by on their way to lunch. He wants to go to the bathroom. This is a big deal. It takes at least two people to get him there, and all the staff are getting ready to take people to lunch. He starts to push against the table and I ask him what’s wrong. “TRAPPED” he says, clearly and decisively. I’m struggling not to fall into trying to figure out what’s going on in his head – but I realize he is trapped. The only way out is to die, and he’s spent so many years fighting to stay alive, it must be practically impossible for him to let go now. It’s clearly no longer a conscious decision to live or die.

He insisted on feeding himself lunch, and spoke a little English – “Oh my youngest child, oh my youngest child”. When he was finished with lunch, he was exhausted and I was ravenous. I walked down the hallway, watching the idyllic San Diego sunshine pour through the windows, making patterns on the perfectly polished linoleum floor. It was his favorite kind of day. I picked up something on the cafeteria line that looked like protein, tossed it down with a glass of orange juice, and decided I should go sit with my father some more while I had the chance.

When I got to the room, he was asleep. Restless, but asleep. I’ve spent so many hours with my dying friend Jane, as she’s been slowly slipping away for three or four years, that I have a pretty keen sense of nuance – discomfort, real sleep, wet bed, bad dreams. Jane can sleep through the wet bed pretty comfortably, even when the other people in the room are miserable. But Mo begins to rant in his sleep.

He has a really tough time with transitions – lying down to sitting up, sitting down to standing up, sleeping to waking, living to dying.

I found a nurse to deal with the wet bed. She came in and it was clear she wished someone else had gotten this call. The Mo I knew all my life who could be supercilious and cloyingly, artificially sweet, was clearly gone.

I walked down to the rec room and scanned an article in a nursing journal about the choices my generation is going to have for long-term care. How could it be harder than this? And then I remind myself these are the fortunate people, the ones with enough money to be in this place. The ones whose families can pay for someone else to change the bedding and move the wheelchairs. I also remember these times of reality are life lessons for everyone – and are likely more or less profound as a function of belief systems and relationships irrespective of who or where you are.

As I walk back into the room, the nurse is trying to get his help pulling up his pants.

Mo is not so much dying – although clearly, he is – as he’s disappearing. He gets harder and harder to reach as he gets smaller and smaller. In the best of all worlds, they would go into his room some morning and it would be empty.

28 February

My father’s doctor called today to ask for permission to stop all medications. She and I had talked about the likelihood this day would come, and it was time. Even so, I was left with a profound sense of Life and Death. They are not the same. I knew Mo didn’t believe in anything remotely like an afterlife; after my mother died, he said if he thought he could see her again, he would kill himself, but he didn’t, and that was that.

I asked the doctor how long she thought I had to get to California. She said probably a couple days, but I wanted to see him one last time, so I left early the next morning.

1 March

My sister had already arrived in San Diego and checked us into the hotel down the street from the skilled nursing facility. I found her and G. outside my father’s room. I hugged each of them and went into the room to have a little talk alone with my dad. I thanked him, wished him well and told him it was OK to let go.

2 March

My sister and I took advantage of the perfect morning to have breakfast outside by the pool. We walked over to the nursing facility, joking about how sad he would be to miss this sunshine. By the time we got to his room, he was already gone. I had said everything I wanted to say, so I waited in the hall while my sister said her goodbyes.

We had made the plans for his cremation, with the ashes to be spread in the ocean, the same place they had spread my mother’s ashes. I remembered there was one more task.

I found the nurse I had gotten to know the best, and told her I needed a favor. In the drawer of the nightstand there were two small ceramic figures – a dog and a chicken – that my sister and I had painted as kids. In the last 30 years, every one of the several times he had been hospitalized, the dog and the chicken had gone too. I didn’t see any reason to stop now, and she promised she would make sure they went with him.

As we walked outside to get some air, some sun and regroup, I looked down and realized my khaki pants were totally rumpled and my long sleeve tee shirt, great in the A/C, was too warm for the sunny day. It became clear you can’t get ready for this, you just have to show up and live it, but I did pack a black dress for the memorial service.

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