I am a member of a private Facebook group for female spouses of persons living with Alzheimer’s disease and other dementias. I posed the question, “What do you hate most to hear from friends concerning your loved one?” I have covered most of them in my previous four posts, but I wanted to give voice to the remaining statements that make caregivers cringe to hear.
“At least…”
I think this is a version of “it could be worse.” A woman in the Facebook group was asked if her husband knew who she was and if he was wandering. When she answered, “No,” the response back was, “Oh, then it’s not so bad then.” Ouch!
“Alzheimer’s patient”
This is something I learned from my daughters called “person first language.” We want to try to always put the person first instead of their disease or disability when speaking about them. So instead of “the autistic girl,” we should say, “the girl with autism.” “The homeless” would be “persons experiencing homelessness.” This is why I now use the phrase “person living with dementia.” We were taught in medical school not to refer to the patient as their disease, such as, “the diabetic in room 2,” but now I would even caution against saying “the diabetic patient.”
“All things happen for good”
This is similar to the sentiment that “everything happens for a reason.” This is actually biblical, and we sing songs in church that use this phrase. I didn’t have much trouble with it because I could usually find a lesson or some “good” in bad situations. I could even say that good could come out of our particular situation because ultimately my writing and speaking will help others, and my daughters’ experiences with their father taught them to value the vulnerable. But. I just cannot see what possible good there was for Harvey, or anyone facing this disease, to live that nightmare.
Bragging about their life
Another woman in the Facebook group told of an encounter where she was asked about her spouse with Alzheimer’s disease. After she responded, the follow-up conversation turned immediately to all the wonderful things the other person’s spouse was doing. It felt like a slap in the face.
“Have you heard about this herbal remedy for dementia?”
I cannot tell you the number of times patients asked me about various herbal treatments for their illnesses. It was part of my job to explain that it was unknown whether supplements and herbs, because they do not require testing by the FDA, were safe or effective. There are a handful that have minimal effects, and another handful that can be harmful. It’s a much more complicated topic than I just described, but that’s it in a nutshell. I usually told patients that if they wanted to try something, it probably wouldn’t harm them, but I just couldn’t support it. It was even more heartbreaking to hear patients ask about supplements purported to help Alzheimer’s disease. I know they were looking for ANYTHING that might help, but there is nothing beyond the mild effects of the two medication classes we currently have. I wasn’t going to include this in the list of things not to say to a caregiver of someone living with dementia, but a woman in the Facebook group brought it up. We care partners have thought of everything. We have asked our doctors every question you can think of. So asking if we’ve thought about a certain herbal supplement just opens up that wound.
That’s it! Five whole blog posts on “What not to say” to a caregiver of someone living with dementia. Again, I know people mean well. They just don’t know what to say, and I’ve even said some of these things. We all have.
Finally, next week, I’ll tell you what I have heard from care partners about what is actually meaningful for them to hear.