What Do You Say to Your Loved One With Alzheimer’s Disease?

We moved recently, and we have to start over with all of our medical care. I had finally gotten comfortable with our doctors in Buffalo after a few false starts. Now we are starting from scratch to develop the wrap-around type of care that we will need. My adult kids need doctors, my husband and I do, too. You are supposed to put on your oxygen mask first, or you will be no good to anyone else.

Mama needs a whole team.

Does she have "dementia"?

I got a recommendation for a primary doctor from mom's podiatrist whose office I saw as I drove by. He was close and had good Yelp reviews. We got her toenails cut. First things first. So, not quite a referral. It's hard to start over medically when you move. He gave us the name of his doctor, who turned out to be accepting new patients.

I was dreading one question from this new doctor. Does she have Alzheimer's disease? Does she have "dementia"?

Either of those would be potentially devastating to my mother. She doesn't live in that world. She expressed concern years ago that she hoped she didn't get that. We have been honest with her.

There is shrinkage in her brain. She forgets. She has trouble word-finding. She knows all of that. She has been told all of that. She lives it. But the labels are another thing.

Talking about dementia

I gave the doctor her list of medications. It's on my phone, so he could clearly read my notes, input it into mom's chart, and the dosages too. He thanked me for that.

Then the question suddenly came when he saw the memantine on the list, "Does she have dementia?" What popped out of my mouth was, "Yeah, a little bit!"

There, said and dealt with, more or less, like ripping a bandaid off but sort of mitigated. Sort of. I saw mom look at me out of the corner of my eye, but I didn't look back.

Did she hear him? After he left the room, she turned to me and asked, "Did he say I have dementia?" I told her it doesn't mean crazy. She's not "demented".

She has memory problems, trouble talking, and that MRI she had a while back showed shrinkage. "It's just what they call it" or something to that effect. She said ok, but that she hoped she didn't have that other kind.

Talking to a parent about dementia

I think I may have that other kind. Not really, but it is a fine line to tread between cold harsh facts and loving honesty. Truth in love, but not dumbing down. Information without crushing beneath the weight of it. That's my job as her caregiver. I can bear the weight. She doesn't need the scary label and to live in a fear realized.

That's what I get to do for her. I can support her. That's what this community can do for me. Support me as I help her. We can walk this together and make the best of it. Mama says she has had a good life. Let's keep it that way.