Falling with Someone in Dementialand

When I was in graduate school, I attended an in-depth training so I could volunteer with a hospice. The volunteer coordinator who organized the training, Kathy, was tremendous. She did a great job of making the experience meaningful, interesting, and practical. Somehow she also made it fun. (I have since learned that people who work for hospices tend to have great senses of humor.)

A lot of things that Kathy said impacted me, and I think of this training often even though it was more than 15 years ago. How time flies.

One thing that Kathy said that has really stuck with me was a point she made in reference to fall prevention. She said that if someone started to fall, sometimes it’s better to fall with them than try to keep them upright.

“There’s only place you can’t fall from, and that’s the floor,” she said. “Once you get them to floor, they’re safe from falling.”

I had spent time with nursing home residents before this, and I thought my role if someone might fall was to use every bit of my physical strength to keep them upright. This was a new perspective.

Kathy explained that if you fall with someone and get them safely to the floor, you might need to help getting them back up–but it wasn’t an urgent situation. In fact, she told us matter-of-factly that if one of our hospice patients was on the floor and we couldn’t help them back up, we should call hospice for assistance and just hang out with them on the floor while we waited for back-up.

This seemed like a reasonable strategy compared to trying to fight with every bit of muscle to keep someone upright–especially since I was about 125 pounds at the time (those were the days…holy metabolism) and some of my hospice patients would be much larger.

Kathy explained that often falls are more dangerous when we are physically trying to prevent the fall rather than accepting that person’s body is not able to stay upright. When we accept that a fall is imminent and help someone smoothly transition to the floor without injury, it’s a win.

And that was a revelation for me.

At the time, I found this useful information and applied it when I volunteered in hospice. However, in the years since the training I’ve found that maybe it has broader implications.

We often fight changes in other people when we might be more successful if we accepted that change was coming and became a part of that change. In other words, sometimes we have to fall with someone rather than fight the fall.

A friend of mine, John, whose wife died from Alzheimer’s a few years back, reminded me of this when he explained that the strategies he had used to make himself a college athlete and then a successful businessman were massive failures when he tried to implement them after his wife’s diagnosis.

John was a problem-solver. When there was an issue, he read everything he could get his hands on to fix the problem. And he was a hard worker. It didn’t matter what he had to do. He would go to the end of the earth to be successful. Things always went his way because he made sure they went his way.

With Alzheimer’s, that meant he made appointments at Mayo Clinic–and appointments at other memory centers when Mayo couldn’t “fix” Alzheimer’s. He even checked into a memory clinic in Switzerland before deciding there was little they could offer her. He read online articles about supplements and behavioral interventions that could “cure” the disease. He even sent money (I didn’t ask how much) to a guy online who offered to provide him with a diet plan that would reverse his wife’s symptoms. He convinced himself that if only he did enough research and diligently pursued all possible options, he could “fix” his wife.

In social settings, he worked hard to “cover” for his wife’s symptoms. When she was asked questions, he answered for her. When she did something that didn’t make sense to others, he explained that she was tired or stressed.

Sometimes she would say she was too tired to go to an event. He wouldn’t take no for an answer. He’d insist she attend anyway, even if he had to help her get dressed and blow dry her hair.

He didn’t want to see his wife fall.

He would do whatever it took to keep her upright.

After a couple years, it was his wife who convinced him to change his strategy. She was sick of how fighting Alzheimer’s consumed all their time and energy, and she worried that the fight was exhausting her more than Alzheimer’s itself.

She acknowledged that her disease was progressing, and she wanted John to come with her instead of battling the disease. She knew he was trying to fight the disease, but sometimes it felt like he was fighting her.

John adopted a new strategy. He accepted that her symptoms were getting more noticeable. He realized that she was still the same person she had always been, but he acknowledged the changes in their lives as a result of Alzheimer’s.

When I’m struggling and I confide in someone, you might think I’m asking them to hold me up. But often I’m asking them to fall with me. To break my fall. To hang out with me on the floor until I’m upright again.

There’s a time to fight like hell. But there’s also a time to accept that a fall is inevitable and not fight that fall.

And falling with someone is better than falling alone.

 

9 thoughts on “Falling with Someone in Dementialand

  1. Dr. Esbaugh, this was the richest, most deeply relevant essay I have read in years. You are right on point about one of the most valuable attitude shifts people can make in caring for others or themselves through incurable, chronic conditions. Acceptance? Choosing not to fight? Slowing life down to allow for a different pace? All of these maneuvers are part of what you have so elegantly described. Again, thank you so much for writing and sharing in you blog. Falling With… I will keep this close to me as the core of caring and of living.

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  2. You totally nailed this subject! Crying my eyes out, realizing you’re 💯 right! Sometimes it hard to hear what you need to hear! Thanks Cindy

    Sent from my iPhone

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  3. Thanks Elaine. As always it is encouraging to read your works and recognise your passion for helping people to better understand dementia.

    I found your analogy between falling and progression if the disease an interesting one, but would like to add to this if I may.

    Because falling is such a risk, generally people are encouraged to exercise and do balance work to reduce the risk of falling, improve balance and maintain mobility and for as long as possible – likewise when we are diagnosed with dementia, it is now recognised that there are a number of things that we can do to slow the progression, including physical and mental exercise; change of diet (including , at times, taking dietery supplements); and social interaction. In both the reduction of falls and in the prolonging of functioning following a dx of dementia, the end results are unlikely to be greatly changed, but may be delayed.

    Your post appears to be comparing the end result – the fall – with the intermediary stage of prolonging the functioning, which could seem as if you are trying to tell people to give in and fall too early. I am sure that this was not your intention, but please think about those of us, continuing to live in the moment, and do everything we can to maintain our function, even as we see it slipping, for as long as we are able.

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  4. I too was a trained hospice volunteer. And like you, the experience opened my eyes to a lot of things I hadn’t thought of before. It also taught me a lot about compassion. I believed then and still believe now, that it takes a special kind of person to be a hospice volunteer. I’m grateful that I am that kind of person…

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  5. Thank you so much for this post! “Falling with” has been my modus operandi from diagnosis forward. But I have had trouble articulating this to my LO family. They are constantly talking about this but of research, or that trial in another country. I appreciate their concern for him, but they are not helping. I’ve tried to explain many times that the cognitive testing that is a part of these studies is so taxing and demeaning to him that I’ve chosen for him to not participate. When/If a treatment that is not so hard on him – with no positive outcome – then we will reconsider.
    You’ve given me another tool to try to explain this to them. Thank you!
    We are “falling together”, as gracefully as possible.

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