If you have dementia or are a care partner to someone with dementia, people tell you a lot of things about dementia.
Perhaps some of those people are educated about dementia. Maybe some of their input is helpful. If so, wonderful.
More likely than not, many of these people are not educated about dementia. I’m sure that a lot of their input is not helpful.
Some of these people are acquaintances, co-workers, or friends. Some of these people are family. Sometimes you can nod politely and end these conversations. You can walk away, literally, from some people. Sometimes it’s more complicated than that.
I want to reassure that it’s okay to disregard advice that doesn’t work for you, even if that advice is from someone who is well-meaning and close to you. I don’t recommend a right hook or a left jab, but a simply “thanks for the info” and change of subject might be effective.
People are generally trying to help. They want to be supportive. They want to make your life easier. But sometimes they don’t know what the heck they are talking about.
When your brother-in-law says, “I read on that internet that Alzheimer’s, x, y, and z,” be skeptical. I hate to break it to you but not everything on the internet (especially about Alzheimer’s and related dementias) is accurate. In fact, a quick search on “cures for dementia” drives me to drink. (By the way, there are no cures for dementia–although I await some of you to contact me to start an argument about this.)
Be patient with these people. They are struggling to find something to say or a way to support you. They just got lost somewhere along the way.
There’s also the sibling that flies in once a year from the East Coast or the West Coast or wherever they live. They spend 48 hours with your mom and think she’s doing just fine. They can’t figure out what you’re worried about and why you’d mention a nursing home. Mom, of course, is functioning more effectively than she has in months. She even made a cherry pie. (In the dementia field, there are a lot of terms for this– like “rising to the occasion” or “showtiming”– and it’s not a rare phenomenon.)
Your sibling becomes critical of all you are doing to care for your mom. They don’t understand why you won’t let her drive to her hair appointments. They make an underhanded comment about how you might be exaggerating what’s going on. They ignore the effort you are putting in so that she can stay in her own home.
Then they fly back home. You suggest maybe your mom could stay with them for a few weeks, just to give you a break. But they have work and the kids and the kids have ballgames and they worry that the new puppy will annoy Mom. Also…someone is re-doing the kitchen so company isn’t really a possibility now.
Life continues. They text you once a week to ask how she is. You give brief and non-detailed responses, since long and detailed responses would just lead to them telling you about all the things you are doing wrong.
Let’s be blunt here.
Your sibling is clueless.
Don’t get me wrong. There are long distance caregivers who are valuable and supportive.
But that sibling who shows up seemingly just to criticize every decision you make? They are clueless.
Of course, it’s not always a sibling. It could be any family member or close friend.
I give you permission to punch them. Just kidding. I really don’t recommend you punch them…because, in the end, I am pretty sure it’s not going to make you feel better and then they will have another thing to criticize you for–aggression.
BUT….I think it’s okay if you aren’t always the nicest. I think it’s okay if you point out that you spend 12 hours a day with your mom and they only check in occasionally. I even think it’s okay for you ask for some money if you are spending what you earn on your mom’s care and they are oblivious to that. Make a dang spreadsheet and show that that dementia care ain’t cheap.
But I need to tell you something about clueless people. You can sit down and give them some knowledge. You can explain where you are at and what you know. You can logically explain the choices you have made and the choices you plan to make. You can even show them legit educational sources on the internet and tell them that essential oils don’t cure dementia.
Will they hear this?
So explain once and then stop wasting your time. You have limited mental energy and this is not where you should be spending it.
You can always learn more about dementia. You can always seek out new perspectives and ideas. You can always become a better care partner.
But maybe your brother-in-law isn’t the best guy to educate you even though he once watched a tik-tok about dementia.