My father died at 9:55am, on June 15th.
Jun. 26th, 2022 10:36 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
garoteThat was a week and a half ago, but already it feels like an ocean of emotional time has washed over me.
He was 88 years old. That's a ripe old age. Even then, it took a combination of things to bring him down: Mobility problems from a shingles infection, leukemia, steadily worsening dementia, and then all at once he was admitted to the hospital with bacterial pneumonia, a severe bladder infection, and COVID-19. That was on the 23rd of May.
Earlier that month, on the 5th, his wife of 20+ years had a stroke. She fell onto the floor of her bedroom and was discovered hours later, and had to be taken to Portland for an emergency procedure. Someone had to take care of my Dad full-time while she was away, and there was no one capable of doing that in their area. So I dropped everything and drove 460 miles to Roseburg to be with him. I brought a sleeping bag, a laptop, and a few changes of clothes.
His dementia and mobility problems made him incapable of caring for himself, except in the most basic ways. He could shower himself, change his clothes, get around the house with a walker, and eat meals. But he could not shop, cook, clean, cut his nails, do laundry, pay bills, or get himself to doctor appointments. So I did those things, with the help of some part-time caregivers who were already scheduled to visit the house. Dad could not carry a long conversation, but he was aware of how precarious his situation was, and how much his wife had been doing for him, and in turn how much I was taking on. He was grateful, and only occasionally cranky. When I wasn't attending to him I was searching through mounds of paperwork and making phone calls to determine the state of his health and medical schedule, because when a person has dementia it means you can't just ask them what else might be going on.
With dementia, a person's brain is like a city, where a number of roadblocks get scattered randomly in the streets each morning. Sometimes entire neighborhoods get cut off and you just can't find them. Traffic gets worse all day until bedtime clears the roads, and then the next day the roadblocks get scattered again, except this time there are more. And more; and more. Eventually you can't even get basic maintenance done, and everything falls apart. That is, you stop knowing how to do things like swallow. Or breathe.
In his present state Dad couldn't put together a puzzle, but he could still do a pretty hard crossword. He couldn't do anything on the phone or the computer, but if you showed him a football game he could point out fine details in the rules that the referees were using to make the calls on each play. He could even quote you stats on teams and players.
One evening we watched "Rush Hour 2" and I pointed out Jackie Chan, and he said "I recognize him, but he's the only person in the whole movie I recognize." Then a commercial came on, featuring a 30-something basketball star in a restaurant ordering chicken, and Dad said, "Did you know that guy is seven-foot-four?"
One thing that he knew for sure, was that he loved his wife dearly, and missed her. On the third day I was there we learned that she was able to see visitors in Portland, and Dad said "Let's go!" I reminded him that it was almost 200 miles each way, and would mean sitting in a car for six hours. We couldn't stay there overnight because no hotel was safe enough for him. He was still eager, and didn't complain about the long, painful walks to the gas station bathrooms. For expedience I loaded him into a wheelchair at the hospital, and guided him to the room where his wife lay in a bed surrounded by softly beeping devices. She was awake but barely coherent. Nevertheless he held her hand and chatted with her and said "I love you" about a hundred times. We hung out there for two hours, then did the entire journey in reverse, and when he got home he marched straight to bed. His wife was the only thing in his world.
And for a while, he was the only thing in mine. I kept cooking and cleaning, and pondering the scale of the changes at hand. He needed a lot of help, and as his dementia progressed he would only need more. I'd been emotionally bracing myself for this decline for years now, even before the official diagnosis, but to see up close how much of him had crumbled away was agonizing -- and I'm sure it was more so for him.
One of the highlights of my life happened when he was 70 years old. He invited me on a ten-week trip through Alaska and Canada, leading the way in his truck, with every day scheduled in advance, including ferry rides, boat tours, trains, campsites, and so on. We hiked for hours, told jokes and stories, took a thousand photos, and he ran rings around me on the chessboard all the way. For as long as I could, I held on to that image of him: Adventurous, loving, healthy. Now it was being pried out of my hands. The person in front of me didn't know what year it was, couldn't operate a microwave, and wore waterproof pants to bed.
Dad's wife transferred to a physical therapy place called Umpqua Valley, just across town in Roseburg. As soon as he got wind that she arrived, he began agitating to see her. We would go once a day, often twice a day. He'd ride in my car, then plod through the building with his walker, then sit next to her for an hour or so chatting and making encouraging comments. Sometimes we arrived after dinner time, and she hadn't eaten her meal yet, so Dad would ask me to position it on the table between his chair and her bed, and he'd patiently spoon-fed her the whole thing.
It was simultaneously agonizing and deeply moving to watch. Here was Dad, barely upright, pushing through a cloud of dementia, and here was his wife, bedridden, partially paralyzed, in her own thickening cloud of dementia, and after all those years of her making healthy meals for them in the kitchen at home, the tables were suddenly turned and he's feeding her in bed like a child. They're still each others' world, supporting one another in a steady binary orbit even as they break into pieces.
Of course, if I had an emotional meltdown, no one would be flying this plane. I excused myself to the bathroom attached to the therapy room and sobbed wretchedly a few times in the dark, then recomposed myself. It was obvious that the part of me I had turned numb was being ablated like a wing in a sandstorm, and I would pay for it later.
Another day, Dad was sitting on the seat of his walker next to her bed, holding her hand, and he asked, "When you get out of here, where would you like to go?" And she said, "I can't think of anywhere, except I'd really love to see Alaska with you, one more time. It's so beautiful up there."
He didn't know how to respond to that, since it was beyond his power, but I piped up and said, "Depending on how your recovery goes, and if you really want to do it, I can drive the two of you up there. We'll find a vehicle you can ride in and see the sights."
I meant it, of course. And though I hoped she would get well enough, the likely outcome was that she had done many things for the last time, and going to Alaska was among them, along with most of her other favorite things, like gardening, caring for a cat, reading a book in her lap, or hugging her husband with both arms.
The days of her cooking or cleaning for Dad were definitely over. Her entire left side was paralyzed, and she had a very difficult journey ahead of her in physical therapy if she wanted to walk again. The good news was, before she had the stroke, she'd been putting together a plan for them both to move into an assisted living facility, where all the meals would be prepared and the bills and laundry handled, and emergency assistance would be close by. She'd made trips to a bunch of facilities in the Roseburg area, and had settled on one in particular called Avamere. I discussed it with her daughter, who had been instrumental in forming the plan. Originally Dad and his wife were going to move to Avamere at the same time, but what if Dad moved there first, and then she followed some time after, when her physical therapy was wrapping up? That could work.
I took him on a tour of Avamere and he seemed okay with it. The admissions officer interviewed him and said he would do fine as long as he remembered to use the emergency necklace to call for assistance if he fell. She made him practice with it a few times, and he got the idea. We started on the paperwork.
Then I began a weird interval where I was living in a house that wasn't my own, using the kitchen and laundry and other things, with the certain knowledge that no one would be using them after I was finished. Once Dad was out of here, that would be it. Neither he nor his wife would be making a meal here again, or anywhere else. And then the house would be emptied and sold.
One morning while I was cooking breakfast, I looked at the smaller of the two non-stick pans and realized it was kind of wrecked. So I just dropped it in the trash. I went through the knife drawer looking for a knife that was properly sharp, and found a set of ceramic ones that were dull as cardboard. One by one I pitched them in the trash.
The bathroom counter had five different bottles of shampoo on it, all half-used. I don't use shampoo; I shave my head. So I swept them into the trash. Moving around the house, I encountered a dozen different spray-cans and plug-ins of air freshener. I don't like such things. Into the trash. The freezer had bags of frozen peas and corn. Dad considered them "useless" starchy vegetables, and didn't want them. Me neither. Into the trash. I found a shelf full of classic movies on VHS tapes. They haven't owned a VCR for at least last six years. Trash.
It wasn't just Dad suffering from dementia. His wife was too, and she was the one responsible for all the chores over the last few years. She was also responsible for the vast majority of the items in the house, including supplies and decorations. Dad had almost no possessions at this point. For years he'd been sensing his own limitations and had been trying to give away most of his things, including books, art, and all the tools in the garage. Not so with his wife, who seemed determined to hold onto everything. For example, in the garage I found a 12-pound tupperware container, filled with what must be every greeting card she's received for the last 50 years. Tax paperwork and check registers going back 30 years. A hundred hotel soaps gathered into a box. Drawer after drawer of partly used cosmetics. Framed photos of relatives from so long ago that no one knows who they are. Up until two weeks ago, before the stroke, she might have known ... But not any more. Now they're photos of strangers.
The food supply was also going haywire. I found a container of mustard in the fridge that was expired by five years. Next to it was a container of birdseed that was expired by eight years. Eight years. There were also five containers of whole milk, all one-gallon size. Dad was on a low-dairy diet and only drank almond milk. I poured the expired ones in the sink, and each morning I chowed down on cereal and granola trying to use up the rest. There was enough of both to feed a family of ten, and Dad didn't like granola.
Everything that I sensed was the exclusive domain of Dad's wife, I left for her daughter to sort through. But things that involved them both and had no value otherwise were fair game. I found a small booklet of photo prints, showing the construction of the house way back in 2002 when they were building the whole neighborhood. Dad was in a couple of them. He had forgotten about them entirely, and his wife would not be able to open the book by herself any more. So I pulled out all the prints and ran them through the scanner, then threw it all out. Same with a booklet of photos of them exploring the Oregon coast. Same with a giant shoebox full of photo prints. And another, and another, and four more.
If I had been observing this as a stranger, I would have angrily asked "How could you make decisions like that about other people's things that you're just stumbling across in their house?" But the weird truth of it was, I was the only person left who cared enough to do anything but throw them straight away. There was no one else. Not even the people in the photos: They were alive, but they had dementia.
I was doing this while I was packing up and moving furniture to Avamere, getting ready for Dad's transfer. I had moved house plenty of times in my life, but this was the first time I was effectively shutting a household down. The whole time my mind kept wandering to all the opportunities for connection or change that could have happened there, but were deferred year after year because they were low-priority or high-effort, even though they could have paid dividends the whole time.
For example, over the years I'd had many long conversations with Dad's wife. I got a chance to grasp what Dad sees in her, and to learn about her difficult past. We grew close especially during the trip through Alaska. I'd always thought that if my sisters could get past the fact that she was totally unlike our Mom, and put in the effort to know her, they would really value her. But they didn't, and now she's not herself anymore, and that chance is gone. It seems so sensible that they would have reached out some time in 25 years. But everyone put it off, year after year, because another year was available, and it turns out "putting it off" was not a deferral at all, but the actual decision. Not a "we haven't connected yet, but will someday", but an actual, "no, we will never connect, for as long as she lives. End of story."
Coming to the realization that many deferred questions like that are now answered is very disorienting. I've had my entire life to grow used to the reliable certainty of Dad being around, and a quarter of a century of his wife being with him, here in this house in Roseburg. It's going to take a very long time to undo that knowledge, over a lot of random moments suddenly turned grossly depressing out of nowhere. A few years ago I was half his age, so based on that I will spend the rest of my life unraveling this.
Between the era of his presence, and the era of his absence, there is a narrow band of years that just came to a close, where his dementia was getting worse, even though his body was still here. The long goodbye, as my mother called it, where I had to accept that I had already lost parts of Dad and would not be seeing them again. I also sunk into another habit of thinking during that time, which made the ordeal worse:
For years I had been dreading a telephone call from his wife, where she would tell me in a choked and panicked voice that my father had suffered some accident or illness and was no longer with us. Whenever I considered going entirely off the grid, by turning off my phone or going to a remote campsite, I contemplated the possibility that this would happen while I was out of reach, and the news would ambush me when I returned. "Would this be the night?" I asked myself, probably a hundred times, on various days. Every time I turned my phone back on or wandered back into range, the question hit me.
It got steadily worse. Whenever my phone rang and I saw her name, the first thought I had was, "This is it; he's dead." And it would turn out she's calling me because she can't get her laptop to reboot, or she saw an old text message from me and thought I'd just sent it, or her phone made a funny clicking sound and what if it's hackers listening to her calls? And though she was harmless, I would feel this string of angry firecrackers going off in my head as I struggled to answer her questions in a reassuring tone. How could I explain this reaction to her? If I did, she would feel utterly miserable, and would never call me again.
And now the tables were turned. I was the one in Roseburg watching Dad, and she was the one wondering how he was.
One night, when Dad was tucked into bed, I laid out my sleeping bag in the living room and shut off the lights and noticed that the answering machine was blinking. They got an awful lot of spam calls on the land line here in Roseburg, and I didn't want to be hauled out of bed and across the room in the early morning for one of them. So I walked over and pulled out the cord.
And that little burst of panic hit me, just like always: "I'm off grid. What if they try to call me, to tell me that Dad's had an accident, and I miss the call?"
And then I shuddered. "Idiot. If that happens, you'll be the one calling everyone else."
After a few more days of housekeeping and packing, Rachel came up to help me. It was just in time, because I was slowly going mad alone with my thoughts. She helped me move the largest items to Avamere, and together we got Dad squared away with his bed and his comfy chair and his television, and one of his caregivers present for the night to make sure he didn't get disoriented and fall on his way to the toilet. I wanted to stay with him for the crucial orientation days at Avamere. I knew he would be very frustrated that he couldn't go see his wife at Umpqua Valley like we'd been doing every day. But I had emergencies to deal with back in Oakland, and I'd already called in favors and taken leave from work. If I didn't go down there now the emergencies could turn into disasters. I packed up and drove 460 miles down to Oakland.
Two days later, I got a call from Avamere saying that Dad had stumbled with his walker outside the building while coming back from a visit to Umpqua Valley, and then fallen on the floor at night while trying to get to the bathroom. The next day I got another call, saying that he had fallen again, and they'd taken him to the ER. The doctors in the ER discovered that he had COVID-19, and they decided - no one could explain why - to discharge him back to Avamere. The staff made sure he ate, then put him in bed. I called his cellphone, which I had configured to automatically pick up and go into speaker mode, and chatted with him.
"How are you doing?" I said.
"Very tired. Sleeping now," he said.
"Okay. I'll check in later. You rest up."
It was evening, so I went to bed. In the middle of the next day I got a call saying that he'd fallen out of bed again, this time face down halfway in the closet, on top of his alert necklace. They hadn't discovered him until the early morning when they came to check. He was delirious with fever and couldn't stand, and complained that his back hurt. An ambulance came, and he was admitted to the hospital with bacterial pneumonia, a severe bladder infection, and COVID-19.
That was May 23rd.
Again, I dropped everything and drove 460 miles to Roseburg to be with him.
When I arrived, the hospital had me put on the full round of protective gear used for patients in isolation with COVID-19: Gown, gloves, mask. I entered the room and he was completely uncovered. Every inch of his skin was stone cold and his jaw was constantly moving as though he was shivering. The nurses said that every time they tried to cover him with blankets he threw them aside and attempted to get out of the bed. Whenever the bed sensed this, it would beep very loudly, and say in a stern robotic voice, "PLEASE DON'T GET UP. PLEASE DON'T GET UP." To him it must have been senseless, disorienting, and menacing. Pure Franz Kafka.
I came out and asked the nurses for two heated blankets, which they brought. I chatted with Dad and gave him an encouraging update about his wife's physical therapy - she’s able to stand while holding a bar, and can move her upper left arm - and I covered him up, then had the nurses move him farther up in the bed. I explained that he was probably trying to escape in order to go find his wife, since it was probably the loudest thought cutting through his dementia. In a few minutes his jaw stopped constantly twitching and his eyes closed and he emitted a snore. It may have been my presence that calmed him down; maybe not.
A nurse specializing in palliative care came in, and had a quiet conversation with me while her trainee watched. She gave me a piece of paper describing some of the options for attempting to resuscitate him if both his heart and breathing stopped. I was already designated as "power of attorney" for him and I'd already made my decisions about that: If his heart stopped, that was it. We were not going to try breaking his ribs with CPR or shocking him back to life.
An oral specialist came in to evaluate his ability to eat. She woke him up, then made him do a series of tongue exercises, then used a vacuum stick to clear his mouth out, then a swab to clean up. She was concerned that he would aspirate - pull food or liquid into his lungs by accident - if they fed him anything.
She tried spoon-feeding him water, and touched his throat with a few fingers to check and see if he was swallowing it. He seemed to make the correct motion, but she wasn't sure. She took a calculated risk and held the cup up to his mouth and he drank. From there she progressed to some applesauce. A straw turned out to be too risky so she threw it away, and they finished off the applesauce with the spoon. She wrote on his board that he was suitable for mechanically softened food.
I sat by his side for the rest of the day, then drove to the house and laid out the sleeping bag. I turned out the lights. The answering machine was blinking again. No spam calls, please. I walked over to the phone and pulled out the line. There was that initial panicked thought just like usual.
Then I realized a long era in my life was over. Years of anticipation and dread could now begin to slowly fade behind me, for the simple reason that the worst was finally happening. It’s a known quantity, with concrete details. I know he’s dying; I know the place; I know his condition; I know exactly what to expect tomorrow morning. There is nothing a phone call could add, no reason to stay on the grid.
With that came an absurd, disgusting relief. I laughed out loud, then instantly regretted it because it sounded terrifying in the dark house. Somehow I slept.
The next day I got coffee and some snacks, then went to the hospital and sat by his side for the whole day again. He tossed the blankets off, and I put them back. I'd brought a blanket from the house, which I draped over him. He tolerated that. He dozed randomly for hours. Lunch arrived but he was asleep, so the nurse set it aside. He woke up later so I fed it to him, just like he had been feeding his wife the week before. Just like he'd fed me when I was a baby. Just another weird moment in the flood.
He was aspirating, and he wasn't eating enough to maintain his strength as the antibiotics coursed through him. They downgraded him to "no food by mouth." I discussed it with the doctor and suggested putting him on IV-fed nutrition, which was not a long-term solution but could help him pull through. The nurses hooked him up.
Another day passed like this. He didn't talk much. He was clearly sick and fighting it. My younger sister arrived and brought her considerable experience as a nurse to the situation. The first thing she did was bring a box of muffins to the nursing staff - a total pro move - and then wrote on Dad's medical board, in big letters everyone including Dad could read, "WE LOVE YOU DAD. Please take care of him for us. He is a wonderful husband, father, and grandfather."
Dad got transferred to a room on the third floor, and she re-wrote the message there. We got him a water-heated blanket for when he was cold. We made sure to tell the nurses all about him, so they knew how deserving of help he was. "He was a math and english teacher for 35 years!" I boasted. "That means he taught roughly ten thousand kids how to use algebra and write essays. That's the population of a small city!"
My sister could stay there and attend to him for four days. Knowing she was with him, Rachel and I took the chance to drive north to attend a wedding in Seattle that had been scheduled months earlier. I met her extended family, and the ceremony was refreshing and life affirming, but every day I worried about Dad. We made plans for me to drive back to Roseburg early and be with him, and she would remain in Seattle and then hitch a ride with her family to her grandmother's house.
"If you need help later in the week," she said, "I can fly from grandma's house to Eugene and you can pick me up."
"Thank you, but I know how important it is for you to spend time with grandma. I'll only ask for help if I really need it."
She said, "Yeah, I don't know how many more chances I'll have to spend time with her."
Suddenly I thought of my Dad. " ... I might only have one," I said, and burst out crying.
She embraced me and spoke tender words.
Dad was bedridden and clearly not okay for Avamere. I stuck by his side day after day, and he seemed to grow weaker. He woke up less often. A day went by where he was entirely unresponsive. He had been on the IV nutrition for a long time, and the doctor was worried that it would damage his liver too much and start an infection in his bloodstream. Reluctantly, I made the call to cease it. Either he would rally on his own, or he would never wake up again.
I did some coordinating and we got his wife shipped over from Umpqua Valley in a wheelchair to visit. Her left arm was still useless and she could only reach him with her right hand, so she petted his forehead and gripped his giant hand in hers, and told him tender words for almost two hours. He was unconscious the entire time. Eventually she pulled his hand to the edge of the bed and stuck her forehead on it, and they both rested. Her expression swung back and forth between a tender smile and a choking despair. Nevertheless on the way out she said she was grateful for the chance to see him, and she thought that he might have even squeezed her hand one time.
I didn't want to leave him alone, but I didn't know what to do with myself when I was there. Finally I decided to start reading some of his favorite Jack London stories out loud by his bedside. If he could hear me, great. If he couldn't, I'd never know. I located the book and brought it in with some coffee and a snack. If this was how our last days together would go, so be it.
He was awake, and fidgeting around in the bed. "Good morning!" he said. "I want bacon and eggs!"
I was shocked. I talked with the nurses and we brought the oral specialist in again. She tested him and he managed to eat a container of applesauce. After so many days of drinking and eating nothing, he was upgraded to "pureed food". The physical therapist came in and though he was grumpy, he managed to stand with a walker and march in place for a few steps. Then his back hurt and he had to lay down. A pureed dinner arrived, and he ate a little bit of it.
The next day he ate some breakfast, and a little lunch, but was too tired for dinner. The physical therapist tried to get him to stand but he was too grumpy. We watched a lot of Spongebob Squarepants and Gunsmoke. He improved in fits and starts. He got upgraded again, to "semi-solid food." The day after that I wrapped his silverware in napkins and tape to make it easier to manipulate with his giant numb hands, and he ate part of the meal all by himself. The day after that I came in and was astonished to find him transferred to an actual chair, out of bed for the first time in almost two weeks, and using silverware without tape around it. He couldn't pick up the coffee but he could hold the cup between his hands if I gave it to him.
He seemed to be on the other side of the COVID-19 and the bladder infection, finally. But he was still coughing all the time, and the nurses were suspicious that he was aspirating food and water into his lungs, which would cause another bacterial infection in due course. The other issue was, his dementia had taken a massive step forward. He was incoherent almost all the time now, even when fully awake, and could only follow very basic instructions. His grumpiness made physical therapy hard. When the therapist tried to take his hand and guide it to the walker, he would slap it away. As soon as he did that once, she yelled "That's it, we're done," and walked out of the room, ending the session.
I understood. Nurses have to keep a channel of good will and positive energy open all the time to work with people in such heartbreaking situations, and that makes them vulnerable. They have to protect that energy, and if a patient abuses it, it means they have far less remaining for all the other patients that need help just as desperately. Dad was not abusive, but his dementia made him impossible to reason with most of the time, and prone to having fits like a small child. I had a lifetime of experience telling me that when he slapped weakly at my hand it was because he didn't want my help, not because he wanted to hurt me. The nurses had no such experience, and despite his feeble state, my Dad still had gigantic hands from a youth spent farming and it could be scary to see him waving them around.
The upshot of this was that he was eating, and probably growing stronger, but not doing much physical therapy. Avamere couldn't take him, but Umpqua Valley could, and perhaps he could transfer there to do more physical therapy and actually be in the same complex as his wife, and then they could both stand a chance of improving enough to go to Avamere like they wanted in the first place.
I had in-person meetings for days. With the Mercy Medical nurses, and the case worker, and the palliative specialist, and the Umpqua Valley admissions manager and nurses, and the Avamere manager. Umpqua Valley turned him down. The manager at Avamere called to ask why and discovered that the case worker at Mercy had sent them the wrong medical history file. After more meetings we got the correct history transferred, and Umpqua agreed to send someone over to evaluate Dad personally. My hopes were high.
She came by in the late afternoon, which I'd warned her against because dad was most coherent in the morning. He was sitting in the chair and had just eaten lunch, and was tired and fidgety. She asked him if he wanted to transfer to Umpqua Valley to be with his wife.
"I don't know," he said, and fidgeted some more.
"You don't know if you want to be with her?"
"I don't know what I want to do."
"You can visit each other every day if you go to Umpqua Valley."
"I don't really want to do much of anything," he said.
I pressed the matter. "This is your chance to make a decision for where to go," I said. "You can go to Umpqua Valley if you want."
For the first time in over a decade, since long before the dementia began, I saw his face fall, into a look of defeat and desperation. The expression was so uncharacteristic that for a moment I couldn't even recognize it.
"... I just want to go outside and play baseball," he wailed.
He began pushing his tray aside and struggled to get out of the chair. He couldn't do it, but if he kept trying he would fall on the floor. The Umpqua Valley admissions nurse decided that it was time to end the interview, and left. The nurses came in and helped him move back to the bed. Soon he was asleep.
His transfer was denied. The nurse said that his dementia was too advanced for them to be successful with physical therapy, and suggested a "memory care" facility that specialized in caring for dementia patients. Wherever Dad went next, it wouldn't be to Umpqua Valley. He wouldn't be close to his wife. I'd spent days in meetings, setting up this one evaluation, and he'd blown it completely.
I was at a breaking point. I hoped he would continue to eat and gain strength, but I was too upset with him to linger by his bedside. I had more emergencies to deal with back home, so I drove 460 miles down to Oakland to attend to them, with a stop-over in Sacramento so I could collapse on the floor and sob. Rachel held me and loved me, and assured me I was doing my best.
"I'm doing things for him, but I can't fight him," I said. "I can't make him do the physical therapy. I can't argue him into going somewhere. Maybe I should have. Maybe when the nurse was there I should have said, 'You have dementia and I have power of attorney. Umpqua Valley is where you're going.' "
It didn't work that way, though, and I knew it.
From Oakland I continued to work the phones, asking the nurses how he was doing every day and trying to set up a move into a "memory care" facility. After a few days I found one called Callahan Court. They sent someone to evaluate Dad and decided he was a "level 5" memory care patient, which was the highest level they could provide. They had two rooms connected by a bathroom, and he could occupy one. I told them he also had a wife with dementia, and she might be interested in the other room. Could they finally be together?
I talked it over with her daughter. She confessed that her mom's progress in therapy was slowing down, and the window where she might qualify to live in Avamere was closing. Callahan Court seemed like a better fit. We coordinated on the paperwork. They had movers who could transfer Dad's furniture from Avamere, but I wanted to be there personally to oversee the move and help him get oriented for the first crucial days. I hadn't done so at Avamere and that had been a disaster, so I was determined to do better with Callahan Court.
The move-in would happen in three days. Satisfied that I had a plan and things were stabilizing, I focused on my chores. Two days later I got a call from Mercy Medical. Dad had not been eating enough, and was much weaker. He was unconscious, and exhibiting "apneic breathing", meaning he would breathe rapidly and then his lungs would stop entirely for 10 to 15 seconds at a time. His oxygen saturation had dipped to the mid-80s, which was very bad. The doctor was adjusting his fluids to try and keep his lungs clear but Dad was too weak now to cough up whatever accumulated in them. They didn't know if he would survive even one more day.
I dropped everything, and drove 460 miles to Roseburg.
His state was as they said. He was totally unconscious, and his breathing was irregular. He woke up briefly in the morning and we asked if he was hungry. He said yes, but when we put food in his mouth he could not swallow it. His body had forgotten how. The nurse suctioned it out and gave him water, but he aspirated that. I talked with the doctor and we agreed that the only thing we could do was hospice care. Give him drugs to make breathing less painful. It was possible to jam a feeding tube down his nose and into his stomach, and get him nutrition that way, but I turned it down. That was no way to live. The end was certain and it would be soon, as his body wasted away.
My older sister got a flight to Portland, then rented a car. She arrived in Roseburg that evening. I led her into the room, and she took his hand, then held his head. His eyes were half-open. "You're okay, everyone is okay," she said. "Your kids are all fine. We all love you. You've done everything you need to do. You can rest now. You're safe."
She kept the soothing words up for a while, then we sat by his bed together and listened to his ragged breathing. It was very late and the nurses were on-hand, so we decided to try and sleep, even though it meant we risked being absent when he passed away. She slept in the house, and I slept in the back of my van. I couldn't bear being in the house any more.
The next day he woke up only briefly. My sister and I busied ourselves moving all his things out of Avamere and back into the house. There would be no move to Callahan Court. We talked about what was happening and how strange it felt. The day after that was the same, with Dad unconscious almost all the time. I gathered a small pile of his things for transport to California. We took the photos of him - and us - off the shelves. I reclaimed his cellphone and deactivated it.
Then, in the morning, I woke up in the van and got dressed, then set out for the hospital like usual. My sister was already there. As I was turning onto the freeway my phone dinged and I saw the message, "I think Dad just died."
She had been looking right at him. He had woken up just enough to say a few words. He couldn't make his lower jaw work and his tongue barely moved, but he managed to say, "I love you," and then a few moments later, "I don't want to die."
Then he lapsed into unconsciousness again. As she held his head and looked into his hooded eyes, she reassured him again that all was well, that his kids were fine and they loved him, that he had done everything he needed. He drew a last breath, and was still.
I arrived about 15 minutes later. We hugged and cried together. His body was cold and pale, but only a little more so than it had been the previous day. Only the complete lack of breathing made it obvious he was gone. We sat there together, mostly in silence, for an hour. I put my hand over his, and looked at his face - narrowed by starvation, but still clearly him - and burned it into my memory. I knew it would be my last chance. Once I left the room, the next time I was near his body it would be in some entirely unrecognizable form.
Then there were phone calls to make. We divided them up and got through them. I made a few more decisions about where to take his body, then we walked out of the hospital in a daze. The rest of the day I spent packing the van. I went to an appointment at a local crematorium. Then I was done being in Roseburg. I was too drained to make the 460 mile drive all at once, so I made it in two days.
I had more chores in Oakland, and Rachel stayed by my side and helped enormously. I talked about how I'd seen this end coming for years, with the dementia, and how I'd visited him in Roseburg often, though of course it felt like it wasn't often enough. Already, over these ten days, the urge to call him up on the phone and say hello or send him some silly photograph has leapt casually up into my mind and then exploded viciously. Rachel mentioned hanging out with her Dad for Father's Day, and the mere mention of the holiday almost knocked me over. We did spend Father's Day with her Dad though, and it was good.
One night she turned to me in the blankets and said, "Tell me some cool stuff about your Dad."
"Well," I said. "When we were teenagers and he was driving to Santa Clara to work, he felt sad that he wasn't spending much time with his kids. So he set up this deal where he would spend an entire day with each of us, one-on-one. It was on some kind of schedule."
Rachel smiled. "Not a bad idea!"
"Yep. One day he took me to San Francisco and we went walking along the wharf district, and toured the Ripley's Believe It Or Not museum. I still remember that waxwork statue of the Chinese dude with the long fingernails, spiraling down to the floor. Another day we went to the Winchester Mystery House. Another day we got up early and drove to a farm and got a tour of all the equipment. I remember that was the first time I saw a persimmon tree, and I ate a bunch of them. And when I got really interested in the computer, he started taking me to this convention that happened once a year, called AppleFest, and when I was there he helped me buy a few things by paying for half, and I used my allowance to pay for the other half."
"Cool!" she said.
"Yeah, I didn't realize it until much later, but it was really amazing that we lived so close to the Silicon Valley, but also in this house that was basically buried in the redwoods."
"Yeah. I remember seeing that house. It's beautiful."
"Isn't it? That two-story thing with all those porches, all surrounded by redwoods. It was like living in the deep dark forest like some fairytale, except we could walk to elementary school, and ride our bikes to middle school."
"A very rare place," she said.
"Yep. And we had a garden, and a dog and cats and chickens and ducks and geese, and the neighbors kept horses, and for a while we had this terrifying goat... My parents really went all-out with the plants and animals. I think my Mom joked once that it was her 'Earth Mother phase.'"
"Hahahahaha! That sounds like your Mom."
"Definitely. Oh, and I just remembered. We had a sandbox!"
"Oh I loved sandboxes as a kid!"
"Yeah, there was this spot on the hill that stuck out next to the porch, and I think it was just big enough for a little structure, and I guess my Dad said 'You know what we could put here? A sandbox!' So he cut some wood and made a frame with some posts, and got a bunch of 'sandbox sand' - I didn't even know there was such a thing until recently - and he heaped it into the sandbox and there it was."
Rachel laughed. "Love it! Go Dad!"
"I know, right? I'm sure it was only appealing to us kids for this narrow slice of time, but I remember digging around in there. I'd make a tunnel with one arm, then jam my other arm down and make another tunnel, and then dig until my hands came together. Then I'd pull them out and there would be an archway. So cooool."
"The coolest," she said.
"Yeah," I said.
We laid together in silence for a moment. Then I said, "... Oh no!"
"What is it?" she said.
For a while I couldn't answer. I convulsed, tears pouring from my eyes, sobbing wretchedly into the bedsheets.
"What is it?"
"I never thanked him for the sandbox!"
This is how it will go. All those little things that I would have called him tomorrow about, I can't. The comfortable silence I'd grown so accustomed to is now just silence. Every year - and this year was blessedly no exception - I called him up on the phone on his birthday and sang him a goofy birthday song, and then marveled at his astronomical age. Recently he'd taken to answering such comments with "Getting old sucks," to which my canned response was always "It beats the alternative!" He would always laugh.
In the coming months and years I will keep telling stories about him. And slowly I will adjust to the fact that there's no longer a person I can point to and say, "That's the guy right there!" It took me a long time to discover what a strange and unlikely combination of traits he was, and just how many of those traits ended up in me with no conscious effort. There is a gallery of pivotal moments in my early life, marked by some specific thing he said or parenting choice he made that influenced the outcome. I'm sure I'll spend more time walking back through those, as I have before. The bridge from regret to remembrance is still ahead of me but I'll reach it eventually.
I don't believe in ghosts, but if he were capable of haunting me, it would be curiously welcome. He would probably just appear next to me, looking as he did around the age of 60, semi-transparent, and say ... hmm, what would he say?
"Ghosts are just people's imagination getting the better of them, you know."
"Yeah; I know Dad, thanks for that."
"Anyway. It wasn't your job to keep me alive, and it wasn't your fault I got sick. You can't beat yourself up about that."
"I guess. I think I'm just being selfish, really. I think it was Avamere that made you sick. If I'd stayed up there and kept cooking and cleaning, and kept you at home, you would still be alive. And then I'd still have you with me. And that's what I want."
"I could have gotten sick from Umpqua Valley too. Would you have refused to let me see my own wife, to 'protect' me?"
"... No."
"My decision. Not your fault."
"Yeah, yeah. Okay. Fine."
"Listen. You're a great kid. Me being dead isn't going to change my opinion of you."
*snort* "Very funny, Dad."
"I'm serious."
"Okay. But I have this feeling now like I have to fill your shoes."
"Well it's a good thing you inherited my giant feet."
"But it's not that easy. You were like, this anchor point in my life. Something I could see myself in reference to. Something I could be like, or be different from, and either way I would know why. Now that's gone."
"Is it?"
"What?"
"Well, you don't believe in ghosts ... right?"
"... Okay. So, maybe not gone."
"There you go. Keep on doing what you've been doing."
"... Hey Dad?"
"Yeah?"
"I miss you."
"Me too. I'll see you around."
He was 88 years old. That's a ripe old age. Even then, it took a combination of things to bring him down: Mobility problems from a shingles infection, leukemia, steadily worsening dementia, and then all at once he was admitted to the hospital with bacterial pneumonia, a severe bladder infection, and COVID-19. That was on the 23rd of May.
Earlier that month, on the 5th, his wife of 20+ years had a stroke. She fell onto the floor of her bedroom and was discovered hours later, and had to be taken to Portland for an emergency procedure. Someone had to take care of my Dad full-time while she was away, and there was no one capable of doing that in their area. So I dropped everything and drove 460 miles to Roseburg to be with him. I brought a sleeping bag, a laptop, and a few changes of clothes.
His dementia and mobility problems made him incapable of caring for himself, except in the most basic ways. He could shower himself, change his clothes, get around the house with a walker, and eat meals. But he could not shop, cook, clean, cut his nails, do laundry, pay bills, or get himself to doctor appointments. So I did those things, with the help of some part-time caregivers who were already scheduled to visit the house. Dad could not carry a long conversation, but he was aware of how precarious his situation was, and how much his wife had been doing for him, and in turn how much I was taking on. He was grateful, and only occasionally cranky. When I wasn't attending to him I was searching through mounds of paperwork and making phone calls to determine the state of his health and medical schedule, because when a person has dementia it means you can't just ask them what else might be going on.
With dementia, a person's brain is like a city, where a number of roadblocks get scattered randomly in the streets each morning. Sometimes entire neighborhoods get cut off and you just can't find them. Traffic gets worse all day until bedtime clears the roads, and then the next day the roadblocks get scattered again, except this time there are more. And more; and more. Eventually you can't even get basic maintenance done, and everything falls apart. That is, you stop knowing how to do things like swallow. Or breathe.
In his present state Dad couldn't put together a puzzle, but he could still do a pretty hard crossword. He couldn't do anything on the phone or the computer, but if you showed him a football game he could point out fine details in the rules that the referees were using to make the calls on each play. He could even quote you stats on teams and players.
One evening we watched "Rush Hour 2" and I pointed out Jackie Chan, and he said "I recognize him, but he's the only person in the whole movie I recognize." Then a commercial came on, featuring a 30-something basketball star in a restaurant ordering chicken, and Dad said, "Did you know that guy is seven-foot-four?"
One thing that he knew for sure, was that he loved his wife dearly, and missed her. On the third day I was there we learned that she was able to see visitors in Portland, and Dad said "Let's go!" I reminded him that it was almost 200 miles each way, and would mean sitting in a car for six hours. We couldn't stay there overnight because no hotel was safe enough for him. He was still eager, and didn't complain about the long, painful walks to the gas station bathrooms. For expedience I loaded him into a wheelchair at the hospital, and guided him to the room where his wife lay in a bed surrounded by softly beeping devices. She was awake but barely coherent. Nevertheless he held her hand and chatted with her and said "I love you" about a hundred times. We hung out there for two hours, then did the entire journey in reverse, and when he got home he marched straight to bed. His wife was the only thing in his world.
And for a while, he was the only thing in mine. I kept cooking and cleaning, and pondering the scale of the changes at hand. He needed a lot of help, and as his dementia progressed he would only need more. I'd been emotionally bracing myself for this decline for years now, even before the official diagnosis, but to see up close how much of him had crumbled away was agonizing -- and I'm sure it was more so for him.
One of the highlights of my life happened when he was 70 years old. He invited me on a ten-week trip through Alaska and Canada, leading the way in his truck, with every day scheduled in advance, including ferry rides, boat tours, trains, campsites, and so on. We hiked for hours, told jokes and stories, took a thousand photos, and he ran rings around me on the chessboard all the way. For as long as I could, I held on to that image of him: Adventurous, loving, healthy. Now it was being pried out of my hands. The person in front of me didn't know what year it was, couldn't operate a microwave, and wore waterproof pants to bed.
Dad's wife transferred to a physical therapy place called Umpqua Valley, just across town in Roseburg. As soon as he got wind that she arrived, he began agitating to see her. We would go once a day, often twice a day. He'd ride in my car, then plod through the building with his walker, then sit next to her for an hour or so chatting and making encouraging comments. Sometimes we arrived after dinner time, and she hadn't eaten her meal yet, so Dad would ask me to position it on the table between his chair and her bed, and he'd patiently spoon-fed her the whole thing.
It was simultaneously agonizing and deeply moving to watch. Here was Dad, barely upright, pushing through a cloud of dementia, and here was his wife, bedridden, partially paralyzed, in her own thickening cloud of dementia, and after all those years of her making healthy meals for them in the kitchen at home, the tables were suddenly turned and he's feeding her in bed like a child. They're still each others' world, supporting one another in a steady binary orbit even as they break into pieces.
Of course, if I had an emotional meltdown, no one would be flying this plane. I excused myself to the bathroom attached to the therapy room and sobbed wretchedly a few times in the dark, then recomposed myself. It was obvious that the part of me I had turned numb was being ablated like a wing in a sandstorm, and I would pay for it later.
Another day, Dad was sitting on the seat of his walker next to her bed, holding her hand, and he asked, "When you get out of here, where would you like to go?" And she said, "I can't think of anywhere, except I'd really love to see Alaska with you, one more time. It's so beautiful up there."
He didn't know how to respond to that, since it was beyond his power, but I piped up and said, "Depending on how your recovery goes, and if you really want to do it, I can drive the two of you up there. We'll find a vehicle you can ride in and see the sights."
I meant it, of course. And though I hoped she would get well enough, the likely outcome was that she had done many things for the last time, and going to Alaska was among them, along with most of her other favorite things, like gardening, caring for a cat, reading a book in her lap, or hugging her husband with both arms.
The days of her cooking or cleaning for Dad were definitely over. Her entire left side was paralyzed, and she had a very difficult journey ahead of her in physical therapy if she wanted to walk again. The good news was, before she had the stroke, she'd been putting together a plan for them both to move into an assisted living facility, where all the meals would be prepared and the bills and laundry handled, and emergency assistance would be close by. She'd made trips to a bunch of facilities in the Roseburg area, and had settled on one in particular called Avamere. I discussed it with her daughter, who had been instrumental in forming the plan. Originally Dad and his wife were going to move to Avamere at the same time, but what if Dad moved there first, and then she followed some time after, when her physical therapy was wrapping up? That could work.
I took him on a tour of Avamere and he seemed okay with it. The admissions officer interviewed him and said he would do fine as long as he remembered to use the emergency necklace to call for assistance if he fell. She made him practice with it a few times, and he got the idea. We started on the paperwork.
Then I began a weird interval where I was living in a house that wasn't my own, using the kitchen and laundry and other things, with the certain knowledge that no one would be using them after I was finished. Once Dad was out of here, that would be it. Neither he nor his wife would be making a meal here again, or anywhere else. And then the house would be emptied and sold.
One morning while I was cooking breakfast, I looked at the smaller of the two non-stick pans and realized it was kind of wrecked. So I just dropped it in the trash. I went through the knife drawer looking for a knife that was properly sharp, and found a set of ceramic ones that were dull as cardboard. One by one I pitched them in the trash.
The bathroom counter had five different bottles of shampoo on it, all half-used. I don't use shampoo; I shave my head. So I swept them into the trash. Moving around the house, I encountered a dozen different spray-cans and plug-ins of air freshener. I don't like such things. Into the trash. The freezer had bags of frozen peas and corn. Dad considered them "useless" starchy vegetables, and didn't want them. Me neither. Into the trash. I found a shelf full of classic movies on VHS tapes. They haven't owned a VCR for at least last six years. Trash.
It wasn't just Dad suffering from dementia. His wife was too, and she was the one responsible for all the chores over the last few years. She was also responsible for the vast majority of the items in the house, including supplies and decorations. Dad had almost no possessions at this point. For years he'd been sensing his own limitations and had been trying to give away most of his things, including books, art, and all the tools in the garage. Not so with his wife, who seemed determined to hold onto everything. For example, in the garage I found a 12-pound tupperware container, filled with what must be every greeting card she's received for the last 50 years. Tax paperwork and check registers going back 30 years. A hundred hotel soaps gathered into a box. Drawer after drawer of partly used cosmetics. Framed photos of relatives from so long ago that no one knows who they are. Up until two weeks ago, before the stroke, she might have known ... But not any more. Now they're photos of strangers.
The food supply was also going haywire. I found a container of mustard in the fridge that was expired by five years. Next to it was a container of birdseed that was expired by eight years. Eight years. There were also five containers of whole milk, all one-gallon size. Dad was on a low-dairy diet and only drank almond milk. I poured the expired ones in the sink, and each morning I chowed down on cereal and granola trying to use up the rest. There was enough of both to feed a family of ten, and Dad didn't like granola.
Everything that I sensed was the exclusive domain of Dad's wife, I left for her daughter to sort through. But things that involved them both and had no value otherwise were fair game. I found a small booklet of photo prints, showing the construction of the house way back in 2002 when they were building the whole neighborhood. Dad was in a couple of them. He had forgotten about them entirely, and his wife would not be able to open the book by herself any more. So I pulled out all the prints and ran them through the scanner, then threw it all out. Same with a booklet of photos of them exploring the Oregon coast. Same with a giant shoebox full of photo prints. And another, and another, and four more.
If I had been observing this as a stranger, I would have angrily asked "How could you make decisions like that about other people's things that you're just stumbling across in their house?" But the weird truth of it was, I was the only person left who cared enough to do anything but throw them straight away. There was no one else. Not even the people in the photos: They were alive, but they had dementia.
I was doing this while I was packing up and moving furniture to Avamere, getting ready for Dad's transfer. I had moved house plenty of times in my life, but this was the first time I was effectively shutting a household down. The whole time my mind kept wandering to all the opportunities for connection or change that could have happened there, but were deferred year after year because they were low-priority or high-effort, even though they could have paid dividends the whole time.
For example, over the years I'd had many long conversations with Dad's wife. I got a chance to grasp what Dad sees in her, and to learn about her difficult past. We grew close especially during the trip through Alaska. I'd always thought that if my sisters could get past the fact that she was totally unlike our Mom, and put in the effort to know her, they would really value her. But they didn't, and now she's not herself anymore, and that chance is gone. It seems so sensible that they would have reached out some time in 25 years. But everyone put it off, year after year, because another year was available, and it turns out "putting it off" was not a deferral at all, but the actual decision. Not a "we haven't connected yet, but will someday", but an actual, "no, we will never connect, for as long as she lives. End of story."
Coming to the realization that many deferred questions like that are now answered is very disorienting. I've had my entire life to grow used to the reliable certainty of Dad being around, and a quarter of a century of his wife being with him, here in this house in Roseburg. It's going to take a very long time to undo that knowledge, over a lot of random moments suddenly turned grossly depressing out of nowhere. A few years ago I was half his age, so based on that I will spend the rest of my life unraveling this.
Between the era of his presence, and the era of his absence, there is a narrow band of years that just came to a close, where his dementia was getting worse, even though his body was still here. The long goodbye, as my mother called it, where I had to accept that I had already lost parts of Dad and would not be seeing them again. I also sunk into another habit of thinking during that time, which made the ordeal worse:
For years I had been dreading a telephone call from his wife, where she would tell me in a choked and panicked voice that my father had suffered some accident or illness and was no longer with us. Whenever I considered going entirely off the grid, by turning off my phone or going to a remote campsite, I contemplated the possibility that this would happen while I was out of reach, and the news would ambush me when I returned. "Would this be the night?" I asked myself, probably a hundred times, on various days. Every time I turned my phone back on or wandered back into range, the question hit me.
It got steadily worse. Whenever my phone rang and I saw her name, the first thought I had was, "This is it; he's dead." And it would turn out she's calling me because she can't get her laptop to reboot, or she saw an old text message from me and thought I'd just sent it, or her phone made a funny clicking sound and what if it's hackers listening to her calls? And though she was harmless, I would feel this string of angry firecrackers going off in my head as I struggled to answer her questions in a reassuring tone. How could I explain this reaction to her? If I did, she would feel utterly miserable, and would never call me again.
And now the tables were turned. I was the one in Roseburg watching Dad, and she was the one wondering how he was.
One night, when Dad was tucked into bed, I laid out my sleeping bag in the living room and shut off the lights and noticed that the answering machine was blinking. They got an awful lot of spam calls on the land line here in Roseburg, and I didn't want to be hauled out of bed and across the room in the early morning for one of them. So I walked over and pulled out the cord.
And that little burst of panic hit me, just like always: "I'm off grid. What if they try to call me, to tell me that Dad's had an accident, and I miss the call?"
And then I shuddered. "Idiot. If that happens, you'll be the one calling everyone else."
After a few more days of housekeeping and packing, Rachel came up to help me. It was just in time, because I was slowly going mad alone with my thoughts. She helped me move the largest items to Avamere, and together we got Dad squared away with his bed and his comfy chair and his television, and one of his caregivers present for the night to make sure he didn't get disoriented and fall on his way to the toilet. I wanted to stay with him for the crucial orientation days at Avamere. I knew he would be very frustrated that he couldn't go see his wife at Umpqua Valley like we'd been doing every day. But I had emergencies to deal with back in Oakland, and I'd already called in favors and taken leave from work. If I didn't go down there now the emergencies could turn into disasters. I packed up and drove 460 miles down to Oakland.
Two days later, I got a call from Avamere saying that Dad had stumbled with his walker outside the building while coming back from a visit to Umpqua Valley, and then fallen on the floor at night while trying to get to the bathroom. The next day I got another call, saying that he had fallen again, and they'd taken him to the ER. The doctors in the ER discovered that he had COVID-19, and they decided - no one could explain why - to discharge him back to Avamere. The staff made sure he ate, then put him in bed. I called his cellphone, which I had configured to automatically pick up and go into speaker mode, and chatted with him.
"How are you doing?" I said.
"Very tired. Sleeping now," he said.
"Okay. I'll check in later. You rest up."
It was evening, so I went to bed. In the middle of the next day I got a call saying that he'd fallen out of bed again, this time face down halfway in the closet, on top of his alert necklace. They hadn't discovered him until the early morning when they came to check. He was delirious with fever and couldn't stand, and complained that his back hurt. An ambulance came, and he was admitted to the hospital with bacterial pneumonia, a severe bladder infection, and COVID-19.
That was May 23rd.
Again, I dropped everything and drove 460 miles to Roseburg to be with him.
When I arrived, the hospital had me put on the full round of protective gear used for patients in isolation with COVID-19: Gown, gloves, mask. I entered the room and he was completely uncovered. Every inch of his skin was stone cold and his jaw was constantly moving as though he was shivering. The nurses said that every time they tried to cover him with blankets he threw them aside and attempted to get out of the bed. Whenever the bed sensed this, it would beep very loudly, and say in a stern robotic voice, "PLEASE DON'T GET UP. PLEASE DON'T GET UP." To him it must have been senseless, disorienting, and menacing. Pure Franz Kafka.
I came out and asked the nurses for two heated blankets, which they brought. I chatted with Dad and gave him an encouraging update about his wife's physical therapy - she’s able to stand while holding a bar, and can move her upper left arm - and I covered him up, then had the nurses move him farther up in the bed. I explained that he was probably trying to escape in order to go find his wife, since it was probably the loudest thought cutting through his dementia. In a few minutes his jaw stopped constantly twitching and his eyes closed and he emitted a snore. It may have been my presence that calmed him down; maybe not.
A nurse specializing in palliative care came in, and had a quiet conversation with me while her trainee watched. She gave me a piece of paper describing some of the options for attempting to resuscitate him if both his heart and breathing stopped. I was already designated as "power of attorney" for him and I'd already made my decisions about that: If his heart stopped, that was it. We were not going to try breaking his ribs with CPR or shocking him back to life.
An oral specialist came in to evaluate his ability to eat. She woke him up, then made him do a series of tongue exercises, then used a vacuum stick to clear his mouth out, then a swab to clean up. She was concerned that he would aspirate - pull food or liquid into his lungs by accident - if they fed him anything.
She tried spoon-feeding him water, and touched his throat with a few fingers to check and see if he was swallowing it. He seemed to make the correct motion, but she wasn't sure. She took a calculated risk and held the cup up to his mouth and he drank. From there she progressed to some applesauce. A straw turned out to be too risky so she threw it away, and they finished off the applesauce with the spoon. She wrote on his board that he was suitable for mechanically softened food.
I sat by his side for the rest of the day, then drove to the house and laid out the sleeping bag. I turned out the lights. The answering machine was blinking again. No spam calls, please. I walked over to the phone and pulled out the line. There was that initial panicked thought just like usual.
Then I realized a long era in my life was over. Years of anticipation and dread could now begin to slowly fade behind me, for the simple reason that the worst was finally happening. It’s a known quantity, with concrete details. I know he’s dying; I know the place; I know his condition; I know exactly what to expect tomorrow morning. There is nothing a phone call could add, no reason to stay on the grid.
With that came an absurd, disgusting relief. I laughed out loud, then instantly regretted it because it sounded terrifying in the dark house. Somehow I slept.
The next day I got coffee and some snacks, then went to the hospital and sat by his side for the whole day again. He tossed the blankets off, and I put them back. I'd brought a blanket from the house, which I draped over him. He tolerated that. He dozed randomly for hours. Lunch arrived but he was asleep, so the nurse set it aside. He woke up later so I fed it to him, just like he had been feeding his wife the week before. Just like he'd fed me when I was a baby. Just another weird moment in the flood.
He was aspirating, and he wasn't eating enough to maintain his strength as the antibiotics coursed through him. They downgraded him to "no food by mouth." I discussed it with the doctor and suggested putting him on IV-fed nutrition, which was not a long-term solution but could help him pull through. The nurses hooked him up.
Another day passed like this. He didn't talk much. He was clearly sick and fighting it. My younger sister arrived and brought her considerable experience as a nurse to the situation. The first thing she did was bring a box of muffins to the nursing staff - a total pro move - and then wrote on Dad's medical board, in big letters everyone including Dad could read, "WE LOVE YOU DAD. Please take care of him for us. He is a wonderful husband, father, and grandfather."
Dad got transferred to a room on the third floor, and she re-wrote the message there. We got him a water-heated blanket for when he was cold. We made sure to tell the nurses all about him, so they knew how deserving of help he was. "He was a math and english teacher for 35 years!" I boasted. "That means he taught roughly ten thousand kids how to use algebra and write essays. That's the population of a small city!"
My sister could stay there and attend to him for four days. Knowing she was with him, Rachel and I took the chance to drive north to attend a wedding in Seattle that had been scheduled months earlier. I met her extended family, and the ceremony was refreshing and life affirming, but every day I worried about Dad. We made plans for me to drive back to Roseburg early and be with him, and she would remain in Seattle and then hitch a ride with her family to her grandmother's house.
"If you need help later in the week," she said, "I can fly from grandma's house to Eugene and you can pick me up."
"Thank you, but I know how important it is for you to spend time with grandma. I'll only ask for help if I really need it."
She said, "Yeah, I don't know how many more chances I'll have to spend time with her."
Suddenly I thought of my Dad. " ... I might only have one," I said, and burst out crying.
She embraced me and spoke tender words.
Dad was bedridden and clearly not okay for Avamere. I stuck by his side day after day, and he seemed to grow weaker. He woke up less often. A day went by where he was entirely unresponsive. He had been on the IV nutrition for a long time, and the doctor was worried that it would damage his liver too much and start an infection in his bloodstream. Reluctantly, I made the call to cease it. Either he would rally on his own, or he would never wake up again.
I did some coordinating and we got his wife shipped over from Umpqua Valley in a wheelchair to visit. Her left arm was still useless and she could only reach him with her right hand, so she petted his forehead and gripped his giant hand in hers, and told him tender words for almost two hours. He was unconscious the entire time. Eventually she pulled his hand to the edge of the bed and stuck her forehead on it, and they both rested. Her expression swung back and forth between a tender smile and a choking despair. Nevertheless on the way out she said she was grateful for the chance to see him, and she thought that he might have even squeezed her hand one time.
I didn't want to leave him alone, but I didn't know what to do with myself when I was there. Finally I decided to start reading some of his favorite Jack London stories out loud by his bedside. If he could hear me, great. If he couldn't, I'd never know. I located the book and brought it in with some coffee and a snack. If this was how our last days together would go, so be it.
He was awake, and fidgeting around in the bed. "Good morning!" he said. "I want bacon and eggs!"
I was shocked. I talked with the nurses and we brought the oral specialist in again. She tested him and he managed to eat a container of applesauce. After so many days of drinking and eating nothing, he was upgraded to "pureed food". The physical therapist came in and though he was grumpy, he managed to stand with a walker and march in place for a few steps. Then his back hurt and he had to lay down. A pureed dinner arrived, and he ate a little bit of it.
The next day he ate some breakfast, and a little lunch, but was too tired for dinner. The physical therapist tried to get him to stand but he was too grumpy. We watched a lot of Spongebob Squarepants and Gunsmoke. He improved in fits and starts. He got upgraded again, to "semi-solid food." The day after that I wrapped his silverware in napkins and tape to make it easier to manipulate with his giant numb hands, and he ate part of the meal all by himself. The day after that I came in and was astonished to find him transferred to an actual chair, out of bed for the first time in almost two weeks, and using silverware without tape around it. He couldn't pick up the coffee but he could hold the cup between his hands if I gave it to him.
He seemed to be on the other side of the COVID-19 and the bladder infection, finally. But he was still coughing all the time, and the nurses were suspicious that he was aspirating food and water into his lungs, which would cause another bacterial infection in due course. The other issue was, his dementia had taken a massive step forward. He was incoherent almost all the time now, even when fully awake, and could only follow very basic instructions. His grumpiness made physical therapy hard. When the therapist tried to take his hand and guide it to the walker, he would slap it away. As soon as he did that once, she yelled "That's it, we're done," and walked out of the room, ending the session.
I understood. Nurses have to keep a channel of good will and positive energy open all the time to work with people in such heartbreaking situations, and that makes them vulnerable. They have to protect that energy, and if a patient abuses it, it means they have far less remaining for all the other patients that need help just as desperately. Dad was not abusive, but his dementia made him impossible to reason with most of the time, and prone to having fits like a small child. I had a lifetime of experience telling me that when he slapped weakly at my hand it was because he didn't want my help, not because he wanted to hurt me. The nurses had no such experience, and despite his feeble state, my Dad still had gigantic hands from a youth spent farming and it could be scary to see him waving them around.
The upshot of this was that he was eating, and probably growing stronger, but not doing much physical therapy. Avamere couldn't take him, but Umpqua Valley could, and perhaps he could transfer there to do more physical therapy and actually be in the same complex as his wife, and then they could both stand a chance of improving enough to go to Avamere like they wanted in the first place.
I had in-person meetings for days. With the Mercy Medical nurses, and the case worker, and the palliative specialist, and the Umpqua Valley admissions manager and nurses, and the Avamere manager. Umpqua Valley turned him down. The manager at Avamere called to ask why and discovered that the case worker at Mercy had sent them the wrong medical history file. After more meetings we got the correct history transferred, and Umpqua agreed to send someone over to evaluate Dad personally. My hopes were high.
She came by in the late afternoon, which I'd warned her against because dad was most coherent in the morning. He was sitting in the chair and had just eaten lunch, and was tired and fidgety. She asked him if he wanted to transfer to Umpqua Valley to be with his wife.
"I don't know," he said, and fidgeted some more.
"You don't know if you want to be with her?"
"I don't know what I want to do."
"You can visit each other every day if you go to Umpqua Valley."
"I don't really want to do much of anything," he said.
I pressed the matter. "This is your chance to make a decision for where to go," I said. "You can go to Umpqua Valley if you want."
For the first time in over a decade, since long before the dementia began, I saw his face fall, into a look of defeat and desperation. The expression was so uncharacteristic that for a moment I couldn't even recognize it.
"... I just want to go outside and play baseball," he wailed.
He began pushing his tray aside and struggled to get out of the chair. He couldn't do it, but if he kept trying he would fall on the floor. The Umpqua Valley admissions nurse decided that it was time to end the interview, and left. The nurses came in and helped him move back to the bed. Soon he was asleep.
His transfer was denied. The nurse said that his dementia was too advanced for them to be successful with physical therapy, and suggested a "memory care" facility that specialized in caring for dementia patients. Wherever Dad went next, it wouldn't be to Umpqua Valley. He wouldn't be close to his wife. I'd spent days in meetings, setting up this one evaluation, and he'd blown it completely.
I was at a breaking point. I hoped he would continue to eat and gain strength, but I was too upset with him to linger by his bedside. I had more emergencies to deal with back home, so I drove 460 miles down to Oakland to attend to them, with a stop-over in Sacramento so I could collapse on the floor and sob. Rachel held me and loved me, and assured me I was doing my best.
"I'm doing things for him, but I can't fight him," I said. "I can't make him do the physical therapy. I can't argue him into going somewhere. Maybe I should have. Maybe when the nurse was there I should have said, 'You have dementia and I have power of attorney. Umpqua Valley is where you're going.' "
It didn't work that way, though, and I knew it.
From Oakland I continued to work the phones, asking the nurses how he was doing every day and trying to set up a move into a "memory care" facility. After a few days I found one called Callahan Court. They sent someone to evaluate Dad and decided he was a "level 5" memory care patient, which was the highest level they could provide. They had two rooms connected by a bathroom, and he could occupy one. I told them he also had a wife with dementia, and she might be interested in the other room. Could they finally be together?
I talked it over with her daughter. She confessed that her mom's progress in therapy was slowing down, and the window where she might qualify to live in Avamere was closing. Callahan Court seemed like a better fit. We coordinated on the paperwork. They had movers who could transfer Dad's furniture from Avamere, but I wanted to be there personally to oversee the move and help him get oriented for the first crucial days. I hadn't done so at Avamere and that had been a disaster, so I was determined to do better with Callahan Court.
The move-in would happen in three days. Satisfied that I had a plan and things were stabilizing, I focused on my chores. Two days later I got a call from Mercy Medical. Dad had not been eating enough, and was much weaker. He was unconscious, and exhibiting "apneic breathing", meaning he would breathe rapidly and then his lungs would stop entirely for 10 to 15 seconds at a time. His oxygen saturation had dipped to the mid-80s, which was very bad. The doctor was adjusting his fluids to try and keep his lungs clear but Dad was too weak now to cough up whatever accumulated in them. They didn't know if he would survive even one more day.
I dropped everything, and drove 460 miles to Roseburg.
His state was as they said. He was totally unconscious, and his breathing was irregular. He woke up briefly in the morning and we asked if he was hungry. He said yes, but when we put food in his mouth he could not swallow it. His body had forgotten how. The nurse suctioned it out and gave him water, but he aspirated that. I talked with the doctor and we agreed that the only thing we could do was hospice care. Give him drugs to make breathing less painful. It was possible to jam a feeding tube down his nose and into his stomach, and get him nutrition that way, but I turned it down. That was no way to live. The end was certain and it would be soon, as his body wasted away.
My older sister got a flight to Portland, then rented a car. She arrived in Roseburg that evening. I led her into the room, and she took his hand, then held his head. His eyes were half-open. "You're okay, everyone is okay," she said. "Your kids are all fine. We all love you. You've done everything you need to do. You can rest now. You're safe."
She kept the soothing words up for a while, then we sat by his bed together and listened to his ragged breathing. It was very late and the nurses were on-hand, so we decided to try and sleep, even though it meant we risked being absent when he passed away. She slept in the house, and I slept in the back of my van. I couldn't bear being in the house any more.
The next day he woke up only briefly. My sister and I busied ourselves moving all his things out of Avamere and back into the house. There would be no move to Callahan Court. We talked about what was happening and how strange it felt. The day after that was the same, with Dad unconscious almost all the time. I gathered a small pile of his things for transport to California. We took the photos of him - and us - off the shelves. I reclaimed his cellphone and deactivated it.
Then, in the morning, I woke up in the van and got dressed, then set out for the hospital like usual. My sister was already there. As I was turning onto the freeway my phone dinged and I saw the message, "I think Dad just died."
She had been looking right at him. He had woken up just enough to say a few words. He couldn't make his lower jaw work and his tongue barely moved, but he managed to say, "I love you," and then a few moments later, "I don't want to die."
Then he lapsed into unconsciousness again. As she held his head and looked into his hooded eyes, she reassured him again that all was well, that his kids were fine and they loved him, that he had done everything he needed. He drew a last breath, and was still.
I arrived about 15 minutes later. We hugged and cried together. His body was cold and pale, but only a little more so than it had been the previous day. Only the complete lack of breathing made it obvious he was gone. We sat there together, mostly in silence, for an hour. I put my hand over his, and looked at his face - narrowed by starvation, but still clearly him - and burned it into my memory. I knew it would be my last chance. Once I left the room, the next time I was near his body it would be in some entirely unrecognizable form.
Then there were phone calls to make. We divided them up and got through them. I made a few more decisions about where to take his body, then we walked out of the hospital in a daze. The rest of the day I spent packing the van. I went to an appointment at a local crematorium. Then I was done being in Roseburg. I was too drained to make the 460 mile drive all at once, so I made it in two days.
I had more chores in Oakland, and Rachel stayed by my side and helped enormously. I talked about how I'd seen this end coming for years, with the dementia, and how I'd visited him in Roseburg often, though of course it felt like it wasn't often enough. Already, over these ten days, the urge to call him up on the phone and say hello or send him some silly photograph has leapt casually up into my mind and then exploded viciously. Rachel mentioned hanging out with her Dad for Father's Day, and the mere mention of the holiday almost knocked me over. We did spend Father's Day with her Dad though, and it was good.
One night she turned to me in the blankets and said, "Tell me some cool stuff about your Dad."
"Well," I said. "When we were teenagers and he was driving to Santa Clara to work, he felt sad that he wasn't spending much time with his kids. So he set up this deal where he would spend an entire day with each of us, one-on-one. It was on some kind of schedule."
Rachel smiled. "Not a bad idea!"
"Yep. One day he took me to San Francisco and we went walking along the wharf district, and toured the Ripley's Believe It Or Not museum. I still remember that waxwork statue of the Chinese dude with the long fingernails, spiraling down to the floor. Another day we went to the Winchester Mystery House. Another day we got up early and drove to a farm and got a tour of all the equipment. I remember that was the first time I saw a persimmon tree, and I ate a bunch of them. And when I got really interested in the computer, he started taking me to this convention that happened once a year, called AppleFest, and when I was there he helped me buy a few things by paying for half, and I used my allowance to pay for the other half."
"Cool!" she said.
"Yeah, I didn't realize it until much later, but it was really amazing that we lived so close to the Silicon Valley, but also in this house that was basically buried in the redwoods."
"Yeah. I remember seeing that house. It's beautiful."
"Isn't it? That two-story thing with all those porches, all surrounded by redwoods. It was like living in the deep dark forest like some fairytale, except we could walk to elementary school, and ride our bikes to middle school."
"A very rare place," she said.
"Yep. And we had a garden, and a dog and cats and chickens and ducks and geese, and the neighbors kept horses, and for a while we had this terrifying goat... My parents really went all-out with the plants and animals. I think my Mom joked once that it was her 'Earth Mother phase.'"
"Hahahahaha! That sounds like your Mom."
"Definitely. Oh, and I just remembered. We had a sandbox!"
"Oh I loved sandboxes as a kid!"
"Yeah, there was this spot on the hill that stuck out next to the porch, and I think it was just big enough for a little structure, and I guess my Dad said 'You know what we could put here? A sandbox!' So he cut some wood and made a frame with some posts, and got a bunch of 'sandbox sand' - I didn't even know there was such a thing until recently - and he heaped it into the sandbox and there it was."
Rachel laughed. "Love it! Go Dad!"
"I know, right? I'm sure it was only appealing to us kids for this narrow slice of time, but I remember digging around in there. I'd make a tunnel with one arm, then jam my other arm down and make another tunnel, and then dig until my hands came together. Then I'd pull them out and there would be an archway. So cooool."
"The coolest," she said.
"Yeah," I said.
We laid together in silence for a moment. Then I said, "... Oh no!"
"What is it?" she said.
For a while I couldn't answer. I convulsed, tears pouring from my eyes, sobbing wretchedly into the bedsheets.
"What is it?"
"I never thanked him for the sandbox!"
This is how it will go. All those little things that I would have called him tomorrow about, I can't. The comfortable silence I'd grown so accustomed to is now just silence. Every year - and this year was blessedly no exception - I called him up on the phone on his birthday and sang him a goofy birthday song, and then marveled at his astronomical age. Recently he'd taken to answering such comments with "Getting old sucks," to which my canned response was always "It beats the alternative!" He would always laugh.
In the coming months and years I will keep telling stories about him. And slowly I will adjust to the fact that there's no longer a person I can point to and say, "That's the guy right there!" It took me a long time to discover what a strange and unlikely combination of traits he was, and just how many of those traits ended up in me with no conscious effort. There is a gallery of pivotal moments in my early life, marked by some specific thing he said or parenting choice he made that influenced the outcome. I'm sure I'll spend more time walking back through those, as I have before. The bridge from regret to remembrance is still ahead of me but I'll reach it eventually.
I don't believe in ghosts, but if he were capable of haunting me, it would be curiously welcome. He would probably just appear next to me, looking as he did around the age of 60, semi-transparent, and say ... hmm, what would he say?
"Ghosts are just people's imagination getting the better of them, you know."
"Yeah; I know Dad, thanks for that."
"Anyway. It wasn't your job to keep me alive, and it wasn't your fault I got sick. You can't beat yourself up about that."
"I guess. I think I'm just being selfish, really. I think it was Avamere that made you sick. If I'd stayed up there and kept cooking and cleaning, and kept you at home, you would still be alive. And then I'd still have you with me. And that's what I want."
"I could have gotten sick from Umpqua Valley too. Would you have refused to let me see my own wife, to 'protect' me?"
"... No."
"My decision. Not your fault."
"Yeah, yeah. Okay. Fine."
"Listen. You're a great kid. Me being dead isn't going to change my opinion of you."
*snort* "Very funny, Dad."
"I'm serious."
"Okay. But I have this feeling now like I have to fill your shoes."
"Well it's a good thing you inherited my giant feet."
"But it's not that easy. You were like, this anchor point in my life. Something I could see myself in reference to. Something I could be like, or be different from, and either way I would know why. Now that's gone."
"Is it?"
"What?"
"Well, you don't believe in ghosts ... right?"
"... Okay. So, maybe not gone."
"There you go. Keep on doing what you've been doing."
"... Hey Dad?"
"Yeah?"
"I miss you."
"Me too. I'll see you around."
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Date: 2022-06-27 12:36 pm (UTC)Thank you so much for the great story. Sad. That's life though. I find it also sad that it took so long time. In a sense, my mother was lucky. She just died quietly in her bed, more or less the way she wanted it to happen.
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Date: 2022-06-27 08:29 pm (UTC)But he was loved, and cared for, and as comfortable as possible, and he wasn't alone.
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Date: 2022-06-30 11:20 pm (UTC)no subject
Date: 2022-07-08 05:01 am (UTC)Thank you for writing this. Let me know if I can do anything to help. In a few weeks, we'll be in Portland, and we'll have crash space if you want to visit.
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Date: 2022-07-11 07:49 am (UTC)