More Things Not to Say

I can’t believe I’m getting at least four installments out of this series. I’m actually glad that I broke them up like this because it would be overwhelming to get ALL of this thrown at you at one time. I apologize again if this series is coming off as snarky or ungrateful. I know full well how difficult it is to approach difficult subjects. And I’ve said some of these things myself. We all have.

“But he seems fine.”

This one really hurts. It somehow implies that the diagnosis is wrong or that the care partner is exaggerating the circumstances. It may be factual, but many people with disabilities don’t look or seem disabled. Maybe the person saying this is trying to cheer up the caregiver? No, I think it’s really about the misperceptions many have about Alzheimer’s disease. They only think of it as a disease that presents as vacant eyed confusion–the late stages. It’s particularly hurtful coming from family, especially if they live apart and don’t really know what is happening on a day to day basis.

“You look like you could use some rest.”

Wow! How do you respond to that? “Okay?” “I’m sorry?” “Well, yes, actually, I feel like shit!?” How is this supposed to be helpful? I guess acknowledging the caregiver’s exhaustion is nice, but they don’t need that affirmation. They know that they are tired. Pointing out how hard it is to provide competent care does nothing to alleviate the situation, to say nothing about how inappropriate it is to remark on someone’s physical appearance! I think this statement should immediately be followed by, “Why don’t I stay with your loved one while you get a massage? My treat!”

“Does he still know you?”

This seems to be a knee jerk reaction on hearing of an Alzheimer’s disease or other dementia diagnosis. They jump straight to this? I suspect this is just ignorance about the disease process. I answered this question multiple times, as did our daughters. I used it as a chance to explain the progression of the disease. Even when Harvey didn’t know me as “me,” I could still tell the questioners that he knew that I was “his person.” Asking this too soon seems crazy to the caregiver, and asking too late seems cruel. Another knee jerk question is, “Can he still drive?” My mother-in-law actually asked Harvey this on first hearing his diagnosis. What these two questions have is common is the stereotypical portrait of Alzheimer’s disease.

“What an honor it must be to care for her.”

This is usually said about care partners that are caring for a parent. The problem with this sentiment is that it is…sentimental! Not all adult children (or spouses, for that matter) feel that what they are doing is honorable or a blessing. Particularly, if there was a history of abuse from the person now affected, this statement can really rub the wrong way. Maybe it seems honorable to you, but to the one giving care, it’s just hard. If the parent-child or spousal relationship was good and solid in the past, it may feel like a privilege to now care for them, but you can’t assume that.

That’s all for this week. Next week I’ll end the series. There are a few important ones that need mentioning, as well as a few stragglers. Some are related to ones I have already discussed, but the variations are important. The following week, I’ll move on to “What TO SAY” to a caregiver of someone living with dementia.