The Wait

Andy wasn't my first experience with hospice - my dad was, 5 years earlier

I’d never seen anyone die before, so I listened closely as the nurse explained how it worked. She left a pamphlet which I referenced dozens of times a day for the next ten days. It said his legs and feet would mottle at the very end, and his breathing would get raspy. It didn’t say that sometimes the mottling would disappear and his breathing would get better, and then it would get worse again, and when that happened I would panic and think this was it, and call my mom and Trevor, my brother, to come back to the nursing home, and then they would arrive and we would all sit around for hours.

I never knew when it was safe to leave. The nursing home was only two blocks from the house but it was too far to run to make it for his last breath. None of us left on Thanksgiving, at first – not my husband Andy; our eight-year-old twin boys Jackson and Charlie; Trevor; or my mom. We were sure this was it. It had been three days and the hospice nurse had said he wouldn’t make it a week. Thanksgiving was my dad’s favorite holiday. It would be a fitting and awful day for him to die.

Eventually we realized we were hungry. We were all afraid to go to the house and cook something simple, let alone a Thanksgiving meal. We decided to eat in shifts. Andy, the boys and I left Trevor and my mom to have a midday Thanksgiving meal at the only place open: IHOP. It was a stark contrast to the last Thanksgiving with dozens of aunts, uncles, cousins and more gathered for one last big family Thanksgiving at my parent’s house. Except it wasn’t really my dad’s house anymore because he’d been moved to the nursing home the week before, after Trevor and I insisted on it. Dad had started falling as Alzheimer’s stole the part of his brain that told him how to walk. It had already taken so much but was never satiated.

Trevor and I had become alarmed when our mom told us she hit her head on the coffee table trying to help my dad get off the couch. She eventually had to call 9-1-1 to move him and then had to call them two more times in the same week. He was still healthy in many ways, but he’d lost most of his ability to communicate and was losing his ability to control his own movements.

Alzheimer’s takes and takes almost everything someone has - and then, with even more cruelty, takes its time finishing the job.

The last Thanksgiving came and went, and the days continued to pass slowly, full of heartbreak and boredom, sitting at his bedside, waiting for the end we knew he wanted, at least under the circumstances. Sometimes he responded to voices, sometimes – rarely – his eyes followed people in the room. Mostly he slept.

Andy flew back to LA the day after Thanksgiving. Massive rainstorms had hit Los Angeles over the past few days, and our house had sprung major leaks in the living room. Our cat sitter told us that the walls and furniture were soaked. Someone had to go back and deal with it.

Jackson and Charlie stayed and came to the nursing home every day. The residents and staff seemed happy to have kids running around, and staff members took popcorn and cookies to the boys. Sometimes the boys sat in the main room and watched TV with the residents. One day they sat in a circle with everyone else when the director of the local zoo brought a chinchilla for an afternoon activity. The zoo director started out by asking if anyone knew what “nocturnal” meant. Charlie’s hand shot up, and he announced that he’d learned that word in kindergarten.

Sometimes I would go back to the house for a bit to shower or eat and would ask the boys if they wanted to go with me, and they would always decline. They preferred to stay at the nursing home. My mom said we should put a sign on the sitting room door: “Jackson and Charlie’s Clubhouse.” Most days Jackson and Charlie took over the small sitting room for patients and their families: they did art projects, played Monopoly, watched TV, played games on their iPads, and every hour or so, ran into my dad’s room and hugged him.

My dad – Papa to the boys - was pale and mostly unresponsive, but Jackson and Charlie were unfazed. I told them lots of kids were scared of old people, especially when the old people are sick. They looked at me in disbelief and asked: why would anyone be scared of old people?

My mom and Trevor and I took turns sitting in my dad’s room; sometimes we all sat there at once, bringing in an extra chair or two if visitors came by. Sometimes we played music we knew he liked: The Kingston Trio, Vikki Carr, Sheryl Crow. One morning Trevor sat alone with him and serenaded him with his guitar, singing a song he wrote for him called “Last of the West Kansas Cowboys.” He sang it again a few days later at the funeral.

We felt pressure to maintain a sense of reverence, but we also needed to pass the time. We started watching TV in his room. We checked Facebook and texted friends and family. We fielded messages from loved ones who wanted to visit and when they did, we sat around the room catching up on what was going on in their lives, while my dad lay there trying to die.

On Day 10 I asked a nurse if she would give my dad more morphine. She asked if he was agitated or in pain. I didn’t want to lie to her. So I told her no, but we knew he didn’t want to live this way and they needed to help him along. She said she couldn’t order more morphine without authorization and she probably wouldn’t get it, but they hadn’t been giving him as much as allowed or giving it as often as allowed. They could start doing so now. Yes, I told her. Start now.

I didn’t ask Trevor or my mom. My dad’s wishes were clear. We knew what he wanted.

Many years before, when Papa - my Papa, my dad’s dad - was slowly dying of Alzheimer’s, Nanny - my well-meaning grandmother - had opted to give him a feeding tube. As a result Papa lived for at least seven or eight years longer than he should have, shuttled between the nursing home and the hospital, unable to move or speak for many of those years. I hope he was unable to understand what was happening too.

After seeing his dad in that state, my dad had asked his friend Dick to kill him if he ever ended up like that.

Dick had died years ago, but we knew we should rush the job if we could.

It happened when I was in the sitting room with the boys, taking a break from waiting in Dad’s room with my mom, Trevor and our friend Carole. Jackson and Charlie were watching Harry Potter movies in their club house so they didn’t have to be traumatized by Dr. Pimple Popper, which was on TV in the main room at the insistence of one of the residents.

Suddenly I saw Carole speed walking toward me, saying, “You need to go in there now. I’ll watch the boys.”

At first I was sure it was a false alarm. I’d thought this was it so many times. But I went in and then I knew this really was it.

I thought of the Buffy episode, “The Body,” when Buffy’s mom dies.

“My mom died too,” Tara tells Buffy.

“Was it sudden?” Buffy asks.

“No,” says Tara. Then she pauses. “And yes. It’s always sudden.”

It’s like that. Sudden, but not. A few minutes after I walked into his room, he was gone.

It was a relief.

I sidestepped grief and focused on next steps; there was a funeral to plan, the legal battle with the neighbors back in Los Angeles, the rain-soaked living room we had to repair, and soon enough, we’d have to get through a pandemic.

Mourning my dad would have to wait.