Angry Robot

Something Important Happened 6

[Continued from here. All articles in this series will be archived here]

After we saw you we went down to the hospital cafeteria and ate. It was strange – you feel like food is unimportant compared to everything that’s going on. But that’s not how your stomach sees it.

There’s this strange feeling of relief after the trauma of death. If the person you love had been suffering, there is this realization that you no longer have to worry about their suffering. But there also is this stampede of busywork that sweeps you up at the worst possible time vis-a-vis your ability to actually do anything: find a funeral home. Talk to the coroner. Sign paperwork. Wills, notices, invitations, phone calls, emails, everything.

My sisters were a godsend. Having them there to bring their massively superior organizational facilities to bear on directing the stampede was an enormous help. It didn’t hurt that in times of crisis, my mother is essentially a warhorse. So all the post-death arrangements were handled by a not-unanimous but certainly professional panel.

We disagreed mildly about how the funeral should be arranged. My sisters are both Unitarians. My mom is a Catholic-raised agnostic, and I’m pretty much a Buddhist at this point. But you were an atheist. I remember you telling me there was no such thing as god when I was a kid (“but lots of people think there is, and that’s okay”). So I tried to advocate for the atheist. We decided a Unitarian church was an ok location for the event. There aren’t a lot of non-church locations that are workable for a funeral, and the Unitarians are an open-minded lot that don’t insist on any particular dogma being included in the service.

The panel invited people, decided on speakers and performers. I made an invite and then a program. I looked through old pictures of you. I began to feel proud. Still sad, but as I had discovered there are many different kinds of sad.

You wanted to be cremated, so we had to go up to the funeral home to inspect the body before this was to happen. No one was invited but the funeral home fixes you up in your dressy clothes anyway. We went and saw you and they had combed your hair oddly – puffed out to the side. It made us laugh; you would have laughed too. Although I remember wishing I could have somehow just atomized your body as soon as you had left it. Better that than have strangers handling it and screwing up your hair.

We fought about the remembrance ceremony, as we were now calling it. We met with the officiant, a nice Unitarian minister (priest?) whose suggestions I nonetheless had to keep vetoing, because I felt I knew what you would want. There would be no prayers or invocations. There would be remembrances, and songs.

People started to arrive. My sisters’ families, my aunt and uncle. The house started to fill up. A neighbour lent us their house for the duration, and we put people up there. People told stories about you. We rehearsed the songs.

Then the memorial day came, and we put it on. We played songs from your album as people filed in. It was quite a crowd. We had few decorations, some flowers, some pictures of you. You were a handsome man, don’t you know? Friends of yours came, many who I hadn’t seen in years. Friends of mine came from work. Friends I hadn’t heard from in ages had heard about it and asked to come saying, “your dad was a good guy.”

People spoke. We heard your life story – in part, but well told, by the people who were there. And at the end we sang that song.

Afterwards it was a wake at your house. People filed in; it got crowded. Some said it was the best funeral they had ever been at. Some said, “he had quite a life”. I switched into associate host mode and didn’t have much of a chance to think about my own feelings, which was good. We poured Guinness, and food was served; people were hanging out in the garden. Stories were told. Your old friends told me how much I reminded them of you.

And in that way, on that day, the old, withered, wraith-Tom began to recede and a new, remembered and imperfect – but much more representative – Tom took form.

It’s been over five years now since that day. In the months following, things were hard to take. Many things that were important in my life – work, my interests, whether I got out of bed – seemed insignificant compared to what had happened to you. As time went on, I was able to put things back together again, and figure out what belonged, and what I should jettison, what I should work towards, and what I should just drop.

As with the memorial, I tried to think what you would do, and I still do that every day.

I wear your watch on my wrist; I think of you every time I look at it. Your picture sits next to our dining room table, which you made. My daughter knows your name and your face. She asks about you. I wish you two could have met, but that’s not how it happened. So I tell her stories; good stories. There are so many. So much wisdom. Thank you for all of it.

Something Important Happened 5

[Continued from here. All articles in this series will be archived here]

My mom and I talked after this doctor left, as neither of us could recall which department he had said he was from. We joked desperately that perhaps he didn’t even work here. A twisted soul who came in off the street to give bad news to strangers. An angel of death.

A day or two passed. The junior geriatrics doctor met us and we discussed ‘the palliative option’. Then the junior geriatrics doctor brought the senior geriatrics doctor. They were kind and thorough. They echoed the angel of death. They described your state since the fall as a ‘delirium’, and said it was actively harmful to the brain. They said you would likely be much worse off, if you recovered, which now seemed unlikely.

By the time the geriatrics team was preparing to leave we had decided that you should go into palliative care. You did not deserve this suffering.

I cried when they left. Your breathing got quite bad – these ragged, grasping pulls of air. Sometimes it sounded like you were either trying to say something, or calling out in pain. My mom became upset and demanded a nurse give you some pain medicine. It helped. The machines now showed your vitals update every second and I watched them like a stock trader in the middle of a crash. I did get one glimpse of a smile when I talked to you – barely visible under your oxygen mask, but detectable in the creases of your eyes.

They told us we should go home and get some sleep so we tried it. That night was hard. Here I was, in my newly purchased home, drinking a scotch, and there you were, in some nether state of consciousness, labouring to breathe, completely alone. I wished I knew where you were, where you were going.

Early the next morning the phone rang. It was my mother – the hospital had called and you were not doing well. I called a cab. I was on Bayview when my mom called again and said you had died.

My sisters and mothers were there when I arrived. You were there in body only — I struggle uselessly to write about this moment, my sentences forming and then falling apart. My words like a bridge across a chasm, a bridge that falls away.

You had loved a particular song, one that you and I performed at my aunt’s funeral. We always knew we’d sing it at yours. I always knew I’d experience something like its final verse. Alyssa started singing it right there at your deathbed, and we all joined in.

Went back home, my home was lonesome
Since my mother she been gone
All my brothers, sisters crying
What a home so sad and ‘lone.

Will the circle be unbroken,
By and by, Lord, by and by.
There’s a better home a-waitin’
In the sky, Lord, in the sky.

Something Important Happened 4

[Continued from here. All articles in this series will be archived here]

You fell. Two weeks later you fell again. But no one told my mom, so when she got in, she tried to get you out of your chair to bring you to the bathroom. You screamed in pain, then told her, “something important happened!”

It was a Tuesday. You had gotten up in the middle of the night, as you liked to. A caregiver came in to see you shaky in the middle of the room. You fell and she managed to protect your head, but you banged your hip and knee.

My mom asked one of the home officials if they would not do an x-ray, and he said the physiotherapist had examined you and you were fine. He moved your leg and said, “see? He’s fine.” Nonetheless my mom discovered she could insist on an x-ray. They said they would do it the next day at 2:30. She got there at 2 and they told her they had done it at 8am. They had only x-rayed your knee. It was fine.

My mom grew angry and told them they needed to do your hip. They said the doctor would examine him and see if it was necessary. But the doctor would not be in for a couple of days.

You were out of it now. You weren’t eating well for the first time in ages. When you had to be taken to the bathroom, we had to use an elaborate machine – kind of a crane for seniors. It hurt to look at this thing, to see your delicate sleeping frame being hauled like goods.

When the doctor did see you, it was the following Wednesday. She said you needed a hip x-ray. The machine was brought in the following day and it showed you had a broken hip.

You were taken to Sunnybrook hospital. They said they could operate and fix your hip, but if it had been a couple days later, they couldn’t have done it. If they did the operation, you might regain your previous mobility. If they didn’t, you’d never walk again. We decided you should get the operation.

Both your daughters came up, Heather and Alyssa. You were not conscious enough to respond to any of us. I took time off work. I would sit next to your bed and talk to you, but the only glimpses I got were the hint of a smile now and then.

The operation happened extremely late at night. We were there, waiting all day for it to happen. Finally they took you down. We followed, not knowing what to do with ourselves. One of the doctors came out and asked for us – you had become agitated as they moved you to the operating table. But finally it was done. We were told it could take hours and there was no point in staying, so we went home.

The next day we came in to find the operation had been a success. We waited for you to come to. Heather had to return to the states for her work. We waited the next day, and still you slept. The following day your breathing became laboured and your vitals got worse. They said you may have contracted pneumonia. We told Heather and she came back the following day.

The hip doctors had done their thing, and said you were now in the hands of the geriatrics. We waited for a visit from them. In the meantime we got a visit from another doctor. He introduced the idea of palliative care. You might very well recover, he said, but to some level below your previous baseline. And 50% of hip fractures over the age of 70 die within the year – it’s a sign of the body’s fundamental weakness. He put his hand on my shoulder. “Would your father want to live like this?”

I became angry. This was so obviously a speech he had given many times before, and his empathy was so manufactured. And how could we suddenly turn around and give up on you, after we had gone through all this? But at the same time the reasoning rang true. I felt like I was lost in a forest, and had just gotten my bearings to discover I was much further away from home than I thought. I might be angry about it, but it didn’t make me any closer to home.

Something Important Happened 3

[Continued from here. All articles in this series will be archived here]

The building was still under construction when we took the tour, and it was just as under construction when you moved in. The inside was done, if sparsely decorated, but the gardens outside were unfinished. It was in an ex-industrial area of Scarborough. One of the neighbouring lots was a vast tract of under-construction townhomes. Another was an empty field apparently undergoing decontamination.

Pretty soon my mom had your room looking great, full of photos and paintings.

We had to buy you a wheelchair. It was an expensive, elaborate thing. You were permanently diapered, despite being continent when you were admitted. You could control your bowels and bladder but it could be a lot of effort getting you to the toilet and back because you were unstable on your feet.

Everyone on your floor was in a wheelchair. We began to wonder about that. My mom got in the habit of coming to see you every day around 3, and when she got there you’d be dying to take a leak. A lot of your fellow residents were always asking to be taken to the bathroom. The caregivers couldn’t seem to keep up. Dinners were theoretically at 5, but often it was 6 or 6:30 before you were served. There didn’t seem to be enough staff.

Months went by and the gardens outside were still ‘under construction.’ Ministry of Health officials were seen now and then, apparently evaluating the facility. You had a fall, but no big injuries. We asked about the toileting schedule. Apparently once every four hours was plenty. We objected. It was not until your daughter Heather, a doctor, visited that we got this reduced to two hours. They put a sign over your bed detailing this. No one seemed to notice. There was a high turnover rate in caregivers. We knew from talking to them that they were brutally overworked by the management. There were one or two amazing caregivers, and when they were on duty, my mom didn’t feel she had to be there as much. But they tended to quit before long.

I told you I had bought a house, and you asked, “does it have umps and muffles?”

Later you asked where my clothes were and I responded, I’m wearing them.

“No,” you clarified, “when do you close?”

Moments like that I would feel proud and elated that I had caught a glimpse of you. That beautiful smile of yours, that smile we can see in all your photos when you are looking at one of your children. That smile was still around.

I wondered what you thought about, how it felt to be you. I was pretty sure you could hear what I was saying, but your words came out all wrong. Did you know they were wrong, or did they sound right to you? We would always try and take you for a walk, but sometimes you would have trouble because the tiles on the floor seemed like rocks over a precipice. You would step gingerly from one black tile to the next.

When you were in bad shape, you simply slept, hunched forward in your wheelchair, drooling. If we weren’t there, we knew no one would wipe the spit away for hours.

That July, we celebrated your birthday. My other sister Alyssa was visiting with her kids. We booked the special room at the nursing home, and had a big meal, and cake. You seemed happy, despite everything.

Something Important Happened 2

[Continued from here. All articles in this series will be archived here]

After the first trip to the hospital you went back home. You said, “you really did it! You rebuilt it!” You thought it was a perfect replica of your house. I looked this up, it’s relatively common. it’s called reduplicative paramnesia.

Caregivers now came a few hours a day to help my mom.  It wasn’t enough. After a few weeks you nearly attacked one of them, and then you collapsed. So back to emergency.

After the second trip to the hospital you never went home again. The second time, it seemed like no one could find the records of the first time. They kept on asking the same questions.

There was no way to bring you back home. My mom was exhausted. You had a bizarre sleep schedule that involved early morning roaming, which given your shaky limbs (also part of the disease) meant my mom would have to wake and keep an eye on you, which meant that by the time of this second stay, she hadn’t had a good sleep in weeks.

They moved you to a place called Toronto Rehab, which had a floor for geriatrics. They took all the problem cases from nursing homes. The first time my girlfriend visited there she burst out crying. Many of the patients were far gone, difficult and screamy. There was a smell. But it was not a bad place – the nurses were incredible.

Your roommate Brian was deaf, blind and demented and he would call out to his dead wife in a boomy, old-style radio DJ voice. One time he started masturbating during dinner. A lot of us laughed.

They had you on anti-psychotics which made you much less prone to the sort of paranoid visions that had caused the two hospital visits. These were so uncharacteristic of you; it was a relief when they abated. You were quiet, withdrawn, and often amiable. Your awareness took on a multi-day cycle, from sleepy and unresponsive to borderline agitated a few days later. At your most aware you were unhappy with your situation. Who wouldn’t be – as a solidly independent man for the majority of your life, being so helpless must have enraged you.

Toronto Rehab was merely a temporary stop on a trip that would take you to a “long term care facility”, i.e. a nursing home. These things are often privately run, but in our province anyway the admissions list and the funding is administered by the government. You can choose three homes and then you go on a waiting list. My mom and I toured many facilities across the city. There are tons of them, huge buildings nestled into every community that you somehow never notice until you are looking for them. Most are horrible. Some are beautiful. The former have short waiting lists. The latter can take years. Of course we wanted the best for you, so we had you signed up for three homes with long waiting lists, the shortest being six months to a year.

In emergency situations – and in our province taking up a hospital bed like in Toronto Rehab is considered an emergency – you go on the ‘crisis list.’ This means you get priority placement ahead of anyone on the normal list. So you were on this special list, but even after two months passed there were still no openings for you. The government representatives started saying we’d have to choose somewhere with less of a wait or they would send us to the next available facility, meaning one of the horrible places.

We had seen a place in Scarborough that was a new building, beautiful and bright, that an older, previously all-female facility was in the process of moving into. It was far from us, but it seemed like a good place. They weren’t afraid to show us the dementia ward on the tour, which seemed refreshingly honest. So we signed you up, and a few weeks later you were moving in.

There turned out to be something wrong with this place.

Something Important Happened 1

Editor’s note: this is the first part of a five (maybe six?) part series about the death of my father that I started five years ago, shortly after it happened. It’s heavy! I won’t feel bad if you avoid reading it. But, the reason I share it here is that it might be helpful for those of you who have not gone through the death of a parent. It will probably happen to you at some point! It will not be exactly like my experience, but there may be similarities.

[All articles in this series will be archived here]

You’d complain about your memory. My role was to reassure. Don’t worry about it, I can’t remember anything either – it runs in the family. We’d laugh about the times we’d run upstairs to get something and then find ourselves standing there, trying to recall exactly what it was we had needed.

But on that trip you forgot your passport. So then they called it Mild Cognitive Impairment. They gave you exercises, and a book in which to write everything down. I tried to get you to play a brain-age game on my DS.

It was too late for all that. You stopped emailing because it took too much time. It could take you a while to string sentences together. After my weekly visit for dinner my mom would insist on driving me home, and would use the time to talk about how worried she was about you. Again, I was Captain Reassurance.

Finally it was Dementia with Lewy-Bodies – I joked darkly to myself that it sounded like a fast food order. Do you want the side order of muscle spasms or of hallucinations? it comes with both. Upgrade to aphasia for a dollar more.

The long retreat continued. Already a quiet man, you became even quieter. We told ourselves you were happy even if you weren’t talking. We said, if it was that hard for us to talk, we wouldn’t talk either. But when you did talk you were rarely yourself. When you did become animated, your words slipped so that your language became strange poetry. A Parkinsonian glaze covered your expression, and your body became frail – as if someone else, someone withered and wraithlike, was moving in to your body.

You saw things. You asked about my twin, said he had been around. You described coming down to the living room and seeing a group of strange people in it, silently staring at you. We realized later that it was much too late for you to go on that trip to visit with your daughters and their kids, and when you came back you were upset, muttering fearful things about shadowy officials foisting conspiracies. The Judge.

A few weeks later you freaked out. You ran out of the house screaming that someone was taking the children. We took you to the hospital. They began to tell us we should “consider” “long term care”.

The whole couple of days we were in there, you kept on trying to leave. You’d say, “c’mon, let’s go,” or “let’s get outta here.” It was so tempting to agree, to say “sure,” that word we so associated with you, that was so indicative of your easygoing nature – sure, let’s go, let’s leave this mess behind.