What NOT To Say

My family and I are very open about Apa’s PART (a type of dementia). It’s a disease, and it’s nothing to be ashamed of. Apa couldn’t help it that his brain decided to rewire itself, which affects his memory, behaviour and all things associated with his cognitive abilities.

But, what’s a tad annoying is the reactions of people when they ask how my father is doing. I usually tell them the truth, briefly and pragmatically: he has a cognitive decline, but we are trying to keep him as comfortable and safe as possible. I get one of three: the overreacting “Ohmygoshimsosorrywowyourdad”. They then cluck with pity, going on and on. It’s beyond dramatic that you’d think I was describing a bowel removal procedure through the belly-button. I don’t need your pity, I do need some understanding if I have to cancel plans and if my phone is on the table. And maybe some offers for conversation, but that’s a point for another time.

The second is the best, though: a plain, matter of fact acknowledgement. When I told a dear friend, all she said was a simple “Aw shit, that really sucks. I’m so sorry. What do you need?” She didn’t make a big deal, she acknowledged the state of affairs, and she asked me what I specifically needed. It was refreshing after the clucking of the above.

However, the third reaction is the one that upset me the most. It wasn’t the irritating clucking: that’s simply a kind and good person who just doesn’t know how to deal with decline and its inevitable death. This is thoughtless.

When I mentioned to a family acquaintance of Apa’s situation (we couldn’t go to some fundraiser or other), he fell into the clucking category. When we parted though, he told me that he hopes Apa will get better soon, and that he will heal quickly. I just looked at him, in a bit of a shock (which is very difficult to do!) I reminded this acquaintance that Apa will never get better; he will only get worse.

His response? “Well, you don’t know, maybe he will! Have a bit of hope!”

With any form of dementia, it does not get better (yet). What medication and proper care can do is slow it down, but not stop it, and certainly not reverse it. It’s not being pessimistic or dark or morbid. It’s the reality and it’s being pragmatic.

I do have hope that research will reveal more information and perhaps with some luck, a better regime can be found. But that’s decades away. And if I’m okay with it, if Mum is okay, and if Apa (before he phased down to where he doesn’t know that he has dementia) was okay with it, why can’t an acquaintance be okay with it– especially after we told him flat out that Apa isn’t getting better. Sheesh. 🙄

(NB: I don’t think he was being mean, and I’m not upset, though Mum was a bit. But cmon, don’t argue with the facts and exercise a little critical thinking. That is all).

So please, if you don’t know what to say when faced with news like this, just a simple “aw shit! I’m so sorry. What do you need” is infinitely better than “Get better soon!”

A little forethought, a little consideration, goes a long way. That is all.

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One thought on “What NOT To Say

  1. Excellent points my least favorite response and one at which I am becoming much less patient is “he seems fine to me, seems perfectly normal to me,” and others along that line. I go from peaceful to ready to strangle someone in about 3 seconds when they pop that one out. I can’t help but interpret it to mean they think we are lying about pops condition and it infuriates me. I also hate it when visitors try to quiz him to see if he really does have memory problems or not. Grrrrr. Yes, pity is hard to take but for me the denial is the worst.

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