Dementia, Know-It-Alls, and Unsolicited Advice on Fixing Dementia

Sometimes I think I should rename this blog “Things That Frustrate Elaine.” And that’s being gentle.

For the past nine months, I’ve struggled with nerve pain. More recently, I have some level of numbness in my hands most the day. I’ve had an MRI. I have a diagnosis, two prescriptions, and a referral to physical therapy. This is something that will be chronic, but it seems like my health professionals are confident we can keep it under control.

In other words, don’t y’all be worried about me.

Yet, the input keeps rolling in…

They say that cherries are really helpful for inflammation. ( I want to ask, who is “they?” Are we talking about researchers at a university? Or people in the Facebook group “Cherries for Inflammation?”)

I know someone who had nerve pain and it was actually a tumor and then they died.

I heard that nerve pain has a lot to do with gut health. Do you drink apple cider vinegar?

I started doing (insert: yoga, meditation, inversion, Cross-Fit, prayer, supplements, special diet, cartwheels) and my pain got better. 

What you really need to do is retrain your nerves and teach them to be calmer. (This makes me picture myself doing a Powerpoint presentation in front of a hyper classroom of nerve roots.)

Ugh.

If you or a loved one has dementia (or cancer or a peanut allergy or Lyme disease, for that matter), you can relate.

Has someone made a ridiculous suggestion to you about how to fix the problem? Perhaps they implied that there was a simple solution…and you just hadn’t identified it yet. You might have been insulted, and you were justified.

I read an article about a woman with dementia who changed her diet and she got her memory back. (This article is currently circulating on Facebook…don’t get me started.)

They keep my great-aunt who has Alzheimer’s really stimulated by making her do puzzles all day. It keeps it from getting worse.

My grandma had hardening of the arteries. It got better when she stopped drinking.

You know you won’t get that Oldtimers if you have a glass of red wine a day, right?

Have you tried coconut oil or vitamin E? (Or milk thistle or lavender or iron pills?)

These comments come from well-meaning individuals who typically know next to nothing about Alzheimer’s and related dementias. In fact, they likely do not know the difference between the terms Alzheimer’s and dementia. And they often place a mysterious “T” in Alzheimer’s, referring to it as Alltimers.

Let me be clear here. If you haven’t had any education on Alzheimer’s and related dementias, I don’t expect you to be well-versed. I’m not judging people for their ignorance. I’m merely suggesting that those who are not well-versed in this area should refrain from giving advice.

Furthermore, when you tell someone that you or loved one has been diagnosed with a dementia-causing condition, you aren’t asking that person for a fix. You didn’t ask for advice. You aren’t expecting that person to give you a magical dementia cure.

You didn’t say, “Please vomit up every single thing you’ve ever read on the Internet about dementia.” You didn’t ask, “What outdated Facebook articles can you tell me about so I can cure myself?”

These people might be distant acquaintances, but they are often close friends and family. Maybe you’re caring for Mom, but your brother keeps calling from across the country with ridiculous “solutions.” Perhaps it’s a family friend who once read a book on Alzheimer’s and now has all the answers. Maybe you delete their texts because you don’t have the energy to respond. Or maybe you get in arguments because you think their ideas are off-the-wall.

Perhaps you feel like they just don’t understand. That’s the other thing about offering unsolicited magic cures…what you’re really saying is, “Your problem isn’t a big deal. It can be easily fixed. You just haven’t been smart enough to find the solution yet. But I have it.”

It’s dismissive.

When I lived alone in a house that was built in 1942, I used to go to Home Depot every other week with a house problem. I’d explain it to the Home Depot employee in their orange apron, and I’d expect them to give me a fix. There was one older guy in particular who seemed really invested in me not hurting myself or burning down the house.

They didn’t need to come to my house to physically fix the issue (although I would’ve paid top dollar for that), but they did need to walk me down aisles, tell me what tools to use, and give me a specific fix for the problem. And, bless their hearts, they’d do their best to give me useful instructions and send me on my way.

In this situation, I wanted someone to say, “Your problem isn’t a big deal. It can be easily fixed.”

But dementia isn’t like a leaky toilet or clogged gutters. There isn’t one simple solution out there–and if there were a solution, it would probably not come from a know-it-all who isn’t educated on dementia but spends a lot of time on social media and once knew a person whose mother’s uncle had a type of dementia that they can’t remember or never knew in the first place.

Why do know-it-alls do this? Why do people think they need to give us advice that is at best useless and at worst harmful when we mention we have a health issue?

I’m going to give people the benefit of the doubt here. They’re not trying to be jerks. I think we want to be helpful. We want so desperately to fix a problem. Let’s just solve this dementia thing so you can get on with your life.

If someone tells you that they have Alzheimer’s, Lewy-Body dementia, frontotemporal degeneration, cancer, HIV, arthritis, or osteoporosis, resist the urge to regurgitate every thing you’ve ever heard related to that condition. It’s not helpful. And it typically makes you sound like an idiot since you have not become an expert on this condition in the past five seconds.

If you think about it, so many problems in life are not fixable. That doesn’t mean we can’t help. Help is listening. Help is being supportive. Help is offering to watch someone’s kids or mow their lawn. Help is sending a random Starbuck’s gift card just because.

Dementia is degenerative. We may not know how to fix damaged brain cells, but that doesn’t mean we can’t help. It’s just that sometimes helping doesn’t involve fixing.

Unless you work at Home Depot.

I expect solutions from them.

 

 

 

 

7 thoughts on “Dementia, Know-It-Alls, and Unsolicited Advice on Fixing Dementia

  1. I get so upset when I see these articles about eating the right thing and curing dementia (or preventing it). People may mean well, but I don’t believe that just changing your cooking oil to coconut oil will prevent (or cure) dementia. Thanks for posting this–I’ve sent it on to my friend whose husband has Parkinson’s dementia.

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  2. Welcome to our world. Yes, it is annoying and frustrating, but I even managed a laugh when I read your blog, as I think I have been told every single thing that you mentioned……if only it was that easy!!!!! Thanks for understanding. X

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  3. EXCELLENT entry. Thanks Elaine. “”… thing about offering unsolicited magic cures…what you’re really saying is, “Your problem isn’t a big deal. It can be easily fixed. You just haven’t been smart enough to find the solution yet. But I have it.” It’s dismissive.”” … yup. So difficult, especially with family.

    Liked by 1 person

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