Late Night Hospice Visits in Dementialand (aka Regrets: We All Have a Few)

When I was a younger version of myself, I moved to Kansas City for about a year. For the first five or so months, my boyfriend (now husband) was still in Iowa finishing his degree. I loved living in Kansas City, but I wasn’t excelling at making friends. I decided to do something I had done in the past–volunteer with a hospice organization. A quick search told me that there was one right down the street from my apartment complex.

I joined a hospice program that served residents in nursing homes who were “actively dying” (a hospice term that describes the period in which the body physically shuts down–because we are all, as explained in hospice training, dying all the time). These were residents who had no family or friends in the area to be with them through the process. Obviously, nursing home staff must tend to other residents. The role of the hospice volunteer was to just be there. As my hospice volunteer coordinator taught me, I’m a “human being not a human doing.”

It was a perfect fit at the time. I’d get an email from hospice staff asking if anyone might be available to sit with an individual at a nursing home for a two to six hour shift. They were especially in need of volunteers to go during the night. As a single person with a flexible job, I felt like this a great way for me to make a small difference in the world.

I got an email one afternoon from the volunteer coordinator asking for volunteers to sit with a woman who had Alzheimer’s. Her daughter was in California and would be here in a few days. She didn’t have the money to fly but had started the drive. I had learned from previous experience that family members were not always on their way. Many said they were coming and never showed. Hospice was amazingly non-judgmental about this, although at times I will admit I was probably more judgmental than I should have been.

I showed up at the nursing home at 10 pm. I had agreed to stay until 2 am. If there’s anything hospice has taught me about death, it’s that TV and movies give us the wrong idea. Death is typically much more boring in real life than it is on screen. I’ve never had a dying individual sit up in bed in the last minutes of their life and give me some genius insight. I didn’t figure tonight would be any different, and I settled in.

Her TV was on and tuned to an old episode of Law and Order. I wasn’t sure if that was okay. I preferred it be on to fill a bit of the silence, but leaving it on somehow felt like cheating to me. I was supposed to be sitting with someone who was in the process of dying—not watching Law and Order. And I wasn’t sure if Law and Order was the right show for “actively dying.” But I left it on. For some reason, I wasn’t comfortable making the decision to turn it off or change the channel. Maybe at some point in the past she had told someone “As I’m dying, please leave on Law and Order. It’s my favorite show.”

Whenever I met a new hospice patient, I introduced myself. I predicted I’d get no response, but I felt it important to do anyway. I could never decide what information was important to include. I’m Elaine. I just moved here from Iowa. I live in an apartment on the Kansas side (because in Kansas City it was always important to know if someone lived on the Kansas side or the Missouri side). I have two cats. I’m a hospice volunteer. I heard your daughter is on her way. I’ll be here until 2 am. The last part made me sound like a comedian who had just told a joke that bombed.

Then I told her it had just started snowing outside. I’m not sure why I thought that was important to add, but it seemed like something she should know.

I told her to let me know if she needed anything….although I predicted she couldn’t. Her breathing was loud. Maybe I’d call it a wet snore. If you’re familiar with the term “death rattle,” you can go with that. She didn’t seem uncomfortable.

I looked around for clues about who this woman was. I saw a Bible on her night stand. I picked it up and thumbed through it. I remember thinking I should read her something from her Bible but I was uncomfortable choosing a verse. I told myself that I should Google “Bible verses to read to dying people” for future reference. (This was before smart phones.)

There was a large stack of greeting cards on the other side of her bed. I wasn’t sure if it was okay to touch them, but I did. After all, they were out in the open–not buried in a drawer. I found birthday cards, get well cards, Valentine’s Day cards, Christmas cards. The stack didn’t seem so large when I realized the cards had been received over the past couple years.

I decided to read the cards to her. A few of them were addressed to Grandma. A couple of them were from nieces and nephews. Several were from a man named George. He would sign “With Love, Your George,” or “From My Heart, George.” I wondered if George was a romantic interest. I wondered where he was now. I hypothesized that he was the love of her life but he had recently passed away. Now she was on a journey to be with him. I had no reason to think this, but I liked the idea.

After I had been sitting there for what seemed like three hours but was probably fifteen minutes, a nurse came in. I asked a few questions and learned a bit more about my patient. She had lived at the nursing home for several years. The staff loved her. They called her “a pistol.” She bickered constantly with her roommate. She had few visitors. Those who visited her were usually from the church she had previously attended. She was originally from California but had moved to Kansas City when her ex-husband started a new business there. He became her ex-husband when she realized the real reason he wanted to start his business in Kansas City was so he could reconnect with his high school love interest. (She told the staff this story often, referring to her ex as a “horse’s rear”.) She had a middle-aged daughter in California who visited about once a year.

Then I asked a question that I now realize was quite ignorant on my part.

“I know she has Alzheimer’s, but what’s she dying of?” I asked the nurse. At that point in time, I knew people with Alzheimer’s died, but I assumed they died of other causes that happened to impact them, like heart disease or cancer. I didn’t know Alzheimer’s was fatal.

“I don’t know,” said the nurse. “I guess just old age.”

I bought it. I didn’t realize at the time that Alzheimer’s is a fatal disease. I didn’t get that it slowly and relentlessly destroys brain cells until life is no longer sustainable. I didn’t understand that this woman was dying of Alzheimer’s.

Maybe her death certificate would say “complications of Alzheimer’s.” Perhaps it would say “infection” or “pneumonia.” It might even say “multiple organ failure.” Yet any of these causes would be a result of Alzheimer’s. (I tend to think we underestimate Alzheimer’s deaths by labelling a different cause on the death certificate. I think we should consistently use Alzheimer’s as a cause of death to obtain a more accurate estimate of how many individuals the disease impacts.)

As I talked to the nurse a bit more, she explained that the last year had been rough for my hospice patient. A fall resulting in a broken hip–or maybe it was a broken hip that resulted in a fall, as is often the case. Many urinary tract infections, which I know now are common in end-stage dementia. Issues with swallowing that forced the nursing home to switch her to a thickened liquid diet. After a while, she just stopped swallowing altogether. This resulted in a weight loss that made her, as the nurse put it, a “skeleton of her old self.”

She became less and less responsive. She had stopped speaking about six months ago, and then it was harder to get her to open her eyes. The nurse told me that the staff had always enjoyed her, and they were sad but relieved to see her journey coming to an end. She used the term “fading away” several times. She just seemed to be fading over the past year.

Every person with Alzheimer’s is unique, but I’ve come to realize that this is a pretty common end of life story. At the time, I just saw a woman fading away. Now I realize this is how people with Alzheimer’s die. UTIs. Other types of infections. Pneumonia that often results from aspiration. Pressure sores that become septic.

So here I was—with a woman I had never had the privilege of knowing until that night. I pictured how she might have come into this world. I’m assuming there was an air of excitement for a new child, a mom waiting to welcome her, maybe some family hanging out anxiously awaiting the baby. Now, here we were at the other end of life. And it was just her and me. In one way, I felt obnoxiously out-of-place. (I eventually learned to stop overthinking this as a hospice volunteer. Otherwise I got caught in a cycle of repeatedly asking myself “What the hell am I doing here?” and “Am I really tricking people into thinking I’m an adult who is capable of handling being in this position?”) In another way, I felt pretty special.

She didn’t die that night. Another volunteer relieved me a few minutes after 2 a.m. I told him some of what the nurse had relayed to me, and he looked uninterested.

I got an email that afternoon, asking me to do another shift that night. I agreed. However, her bed was empty when I showed up. I didn’t confirm with the nursing staff that she had passed. Her half of the room had been sanitized…and I don’t mean disinfected in the literal sense. The Bible and greeting cards were gone. Her TV was gone. I knew the quick turnover of the room was necessary, but it bothered me that so soon after her death the space looked like she had never existed within it.

I received a call from hospice the next day apologizing that they didn’t notify me of her passing. They explained that no one from hospice was at the nursing home when she died the morning after I stayed with her, and the nursing home was delayed in notifying them. They mentioned that her daughter didn’t make it in time. I didn’t ask if she was alone when she passed away.

When this particular hospice volunteer coordinator would call and notify me of a patient’s passing, she would always wrap up the conversation by saying somewhat awkwardly, “And I guess that’s the end of the story.”

However, it wasn’t quite the end of the story. A few weeks later I received something in the mail from hospice. There was a sticky note on a card addressed to “Volunteer.” The sticky note explained that the woman’s daughter wanted a thank you note given to each person who had been with her mother in her final days.

The daughter’s card was a sweet thank you in beautiful cursive handwriting, but a few words stuck with me. (I am paraphrasing here because, although I kept this card for years, I have no idea where it ended up after we moved a couple years ago.)

“I’m sorry I couldn’t get there. I had already taken so many days off work because I thought we were losing her a while back and I didn’t have more days to take. I couldn’t afford to fly. I was going to drive but I wasn’t sure if it was a false alarm again. I’m so sorry and grateful to you,” it read.

I decided to write a card to her and send it through hospice, to tell her that her mother was comfortable and peaceful when I was with her. I thought it might be comforting for her to know that, from my perspective, her mother wasn’t in pain. Maybe I could tell her that I read the greeting cards aloud to her mom. Perhaps she would enjoy knowing that the nurse mentioned how much the staff cared about her mother. I went to Walgreens and bought a card.

I never sent that card.

I should have sent it. I could have sent it. I just didn’t send it. And I regret that I didn’t send it.

I’d say I had the best of intentions, but that’s a meaningless statement. The smallest action is greater than the largest intention (or something like that).

I just wish I had sent the damn card.


4 thoughts on “Late Night Hospice Visits in Dementialand (aka Regrets: We All Have a Few)

  1. Thank you for another beautiful story, Elaine. Thank you for pouring so much of yourself into your patients even when they had nothing left to give you. Thank you for valuing them and who they were in life, even in their death. And thank you for letting me know you lived on the Kansas side. I live in Lawrence, so that’s important to me! 😉


  2. It’s so hard looking back on what we should have done. The daughter did and you did. But you both did your best as you knew it to be at the time. And you both went further than most. The daughter the card to the volunteers and you in researching this darling woman

    I have been wanting to be a palliative care volunteer here in Australia and your post really confirmed for me that this is something I would love and be good at. Thank you so much. For what you did back then and for now


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