Avoiding Dementialand

I hadn’t been volunteering for hospice too long when I was asked to stay with Isabel (not her real name) on Sunday mornings. Her family would be at church, and she couldn’t be home alone. Her daughter and son-in-law would be fine with staying home from church, but Isabel would have none of it. So I would come on Sunday mornings.

I was in my mid-20s and in grad school. I was still a bit unsure if I really had the skills to do this hospice thing. I worried a lot about saying the wrong thing. (Side note: I eventually overcame this fear by acknowledging that I would say the wrong thing from time to time, and that’s okay.)

I showed up to find a tiny lady in her early 80’s who was in congestive heart failure. Isabel put me at ease immediately. She was on oxygen and scooted around with a walker. I worried about her tripping over the oxygen line but tried not to hover. She tired easily but somehow had a positive energy about her. She didn’t have dementia. In fact, when I arrived she was watching Suze Orman and launched into an insightful lecture about how women should take responsibility for their own finances.

She asked if I was married. When I said no, she told me that I should not wait until I got married to start making sound financial decisions. I felt like I should be taking notes. I liked her immediately.

Isabel told me in the first five minute of our visit that she was ready to leave this earth at any point. She said she would miss her family but “had her bags packed.”

One thing about volunteering for hospice that surprised me was the ease at which hospice patients jump from talking about the mundane (the puzzle on Wheel of Fortune, toilet paper brands, whether they liked asparagus) to the meaningful (how long they had to live, what happens after death, whether they’ll ever see snow again) and right back. Isabel was a classic example. One minute she was telling me she liked my shoes and the next minute she was talking about how she wasn’t scared of death. And then back to Suze Orman. She really liked Suze Orman’s haircut.

But our conversation kept coming back to how lucky she was. She couldn’t help but tell me how fortunate and happy she was that she didn’t have Alzheimer’s. She had seen her mother and her sister die from it, and all she ever wished for was to not have Alzheimer’s.

As she sat in her recliner with her oxygen, she told me that when she entered hospice care she had a realization that it was congestive heart failure that would kill her–before Alzheimer’s would have a chance. And she kept coming back to this point….she was incredibly grateful she would not have Alzheimer’s.

She also told me that for many years she had been a part of a bridge club. She explained how horrifying it was to watch many of her friends suddenly make “dumb” plays. She said that’s how they knew someone had Alzheimer’s. They’d start playing “dumb cards.” Finally, enough of the members had dementia that the club folded.

I would not have expected anyone to have such relief at a terminal congestive heart failure diagnosis. And maybe relief isn’t the right word. It was almost as if she felt entitled to taunt Alzheimer’s like “You didn’t get me!” and then stick out her tongue at the disease. Maybe even throwing in a “nanny nanny boo boo” for good measure. And, after watching the disease turn her mother and sister into what she referred to as “shells,” she had every right to feel that way. She had avoided Dementialand. Isabel 1; Alzheimer’s 0.

But her happy realization that she had avoided Alzheimer’s made me realize that for many years she likely lived in fear of it. She had probably been terrified for decades. I hate that Alzheimer’s does this to people. It makes older people panic when they lose the remote or mix up their kids’ names. It makes them anxious when they can’t find their car in the mall parking lot.

I appreciate that Alzheimer’s disease is getting increased attention in TV and the movies (e.g., Grey’s Anatomy, The Notebook, Still Alice). I can’t help but say I almost always have a gripe about how the disease is portrayed, but still it is being portrayed, and that’s something. All of the increased awareness is fantastic, but it does also increase anxiety among people as they get older. Alzheimer’s is scary for the people who have it, but also for the people who don’t.

The following Saturday night I got a phone call. It was Isabel’s daughter. Isabel had passed away the day before. I was disappointed because I wouldn’t get to watch Suze Orman with her in the morning, but I knew Isabel was ready to go. Her daughter told me that her entire family had been with her when she passed, and her final journey (as her daughter called it) was beautiful.

A few weeks later, I put an offer on a condo. I decided that Isabel was right. I shouldn’t wait to get married to start making good financial decisions, and there was no reason to keep paying rent.

2 thoughts on “Avoiding Dementialand

  1. Hospice volunteering is a gift for both the patient and volunteer. I get wonderful advice each week from the woman I visit. I like your realization that you would inevitably say something wrong and it would be ok. Worrying about that keeps many people from hospice volunteering I imagine.

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