Til Death Do Us Part in Dementialand

This is not the post you expect it to be. If you’re looking for a heartwarming tale, you might want to check out “Chicken Soup for the Soul: Living with Alzheimer’s and Other Forms of Dementia.” (Yes, it really does exist, and it’s not a bad book if you’re into that type of thing.) But I’m not sure you’re gonna get warm fuzzies from my post today. In fact, I have no idea how you’re going to feel after you read this post.

In my visits to a nursing home, I met a bubbly nursing home visitor in her 50’s who I will call Jean. Although I tell this story with her permission, I have changed her name. Jean’s husband, who I’ll call Gary, was also in his 50’s, but his appearance would have lead me to guess he was in his 80’s. Gary, who had younger-onset Alzheimer’s, had lived at the nursing home several years. He was in end-stage Alzheimer’s and seemed somewhat stalled there.

He spent most of his time in bed. He had to be turned every few hours to avoid pressure sores. When the staff got him up in a wheelchair, he slumped over to one side–usually unable to keep his eyes open. He fought a constant battle against pneumonia (common among people in end-stage Alzheimer’s due to compromised immunity) and was on a thickened liquid diet to avoid aspiration. He had not spoken for over a year. Jean told me he stopped recognizing her long before that.

Jean worked full-time and stopped by every evening. Sometimes she sat with him and watched Wheel of Fortune while holding his hand. Once in a while, I saw her doing crossword puzzles. She enjoyed talking to other residents and their families. She was bright, caring, and always laughing.

If you’ve spent any time in nursing homes, you know that they can be gossip mills. I found out through the nursing home gossip mill that Jean had boyfriend. Not that she was hiding it. It had just never come up when I made small talk with her.

As I got to know her a little better, she’d mention her weekend plans or what she did the previous evening, casually dropping the name of her boyfriend. I didn’t ask too many questions. I’m sure she had enough judgement in her life, and I didn’t want her to misinterpret my curiosity as disdain. Frankly, it was none of my business.

But I learned more as time went on. Gary was diagnosed with Alzheimer’s in his mid-40’s. His mom had younger-onset Alzheimer’s as well, so they weren’t shocked, and they had an idea of the path ahead. They went on a few trips right after the diagnosis. Jean knew these trips would be bittersweet, but they ended up being more bitter than sweet.

Unlike many people who tell their loved ones to never put them in a nursing home, Gary told Jean that he didn’t want her to care for him at home as the disease progressed. He made the choice to put his mother in a nursing home although she repeatedly requested that he never do so. He lived with that guilt, and he didn’t want to Jean to have to do so.

When the time came, she placed him in a nursing home. She visited every evening. A few years later she met someone. She continued to visit Gary every evening. She told me she loved Gary as much as ever, but she no longer viewed him as her husband.

She had taken off her wedding ring long ago because it was too painful to look down at her hand, see the ring, and remember that she had a husband who didn’t know who she was. But when she said she loved him as much as ever, I believed her.

I can’t say Jean’s situation is the norm when a spouse has dementia, but I also can’t say it is rare. In fact, on the very same nursing home hallway where Gary lived, there were two other wives in similar situations. I am not speaking of wives who had abandoned their husbands at a nursing home. I’m talking about wives who visited at least once a day, were active participants in their husbands’ care, and had boyfriends.

It’s common enough that the Wall Street Journal wrote a story about it several years ago:

http://www.wsj.com/articles/SB10001424052748704317704574503631569278424

Even religious authorities are split on whether this is okay or not. I’ve kicked it around quite a bit, and all I can say for sure is this:

If I had dementia, needed 24/7 care, and no longer recognized my spouse, would I be okay with my husband dating someone else? The answer (for me) is absolutely yes. And I would not want him to feel guilty about it for one second. Of course, I haven’t been diagnosed with dementia. Could my thoughts on this change if I were diagnosed tomorrow and saw dementia a real rather than hypothetical part of my future? Of course.

I know that Jean was with Gary when he passed away. Til death do us part. Or something like that.

 

2 thoughts on “Til Death Do Us Part in Dementialand

  1. I wish more couples had conversations about the major what-ifs in life. I’m glad this couple did, at least about the nursing home aspect. And I’m thrilled this woman found a boyfriend and I can’t imagine her husband, in his right mind, wouldn’t say the same. Dementia is horror enough for those who have it…we should encourage the people who love dementia patients to find peace and comfort wherever they can.

    Like

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s