dementia · family

Helpful Words

A foggy morning (that has nothing to do with the post)

“It happens to all of us, you know,” someone said to me when I was talking about my father’s latest foggy episode.

Yesterday morning, when my father was studying his watch, I asked him what time he had.

“Hmmm,” he said, studying the hands and the numbers, “it looks like it’s two minutes past… past… I think it’s two minutes past Tuesday.”

I texted my sister. “I have the title for the book about Dad and dementia — Two Minutes Past Tuesday.”

Funny — but so not funny. Not even remotely funny the more I think about it.

Later in the day he had essentially forgotten my oldest brother, or, at the very least, key elements of Stewart’s life.

“It happens to all of us,” this person said to me, when I told about the things my father had said. “It’ll happen to you. It’ll happen to me. It happens.”

Such a glib response made me wonder if I talk too much about my father and his struggles. I try not to.

The other day when two of my children had a discussion that devolved into nastiness, I said, “Let’s try this again. First she said this (fill in the blank), and then you responded with this (fill in the blank) — but what could have been a better response?”

We talked through possible responses that could have diffused rather than ignited the situation.

It probably won’t work. The next time, they may get after each other again, but maybe a seed has been planted. A seed with a better fruit.

Last night as I lay in bed thinking about the unhelpful response thrown my way, I wondered what I really was looking for in sharing the story of my Dad’s poor thinking. What would have been a better response?

Nobody can really fix the situation. It is what it is.

But here are a few things that may have sounded better.

My sister’s response — “Oh my.” Two words show that she feels the same dismay that I do.

“I’m sorry.” It can be a pat response, but it can also be very sincere. It shows compassion and sympathy.

“That must be so hard.” Yes, yes, it is. I appreciate when people acknowledge that.

“Is there anything I can do?” Yes, there is. You can visit him. Don’t worry about whether he’ll remember your name or not — because the visit isn’t about you. Don’t worry if there are long periods of silence while he searches for words, or if he loses his train of thought altogether. He loves having people sit with him, talk with him, and listen to the same stories (or story fragments). Don’t feel that it’s a waste of time because he may not remember. For that hour that you’re there, he’s loving it. I’m loving it, too, because he’s being fed mentally by the presence of another person.

“How are you doing?” Some days I’m not doing terribly well with all this. Thanks for asking.

18 thoughts on “Helpful Words

  1. I think maybe it’s even harder on you (main caregiver) than it is on your father. He’s got you to lean on. You don’t have a you. I thought I’d die the moment my husband’s elderly and saintly near-nun aunt pocketed a sacred Host “for later” during Communion. It got worse, though, because I was my mom’s caregiver and saw every new slip immediately and dreaded that she might catch on (and that it would scare her or make her feel bad for me, if she recognized me), or that others would catch on. Others did. My aunt (her sister) helped in the last few months, and one day she said to me with a light touch on the arm, “I feel so sorry for you, dear.” That actually helped! Yes, yes, she should indeed feel sorry for me. My heart was broken day after day after day and it all affected my entire family. Sally, I feel sorry for you, dear, and oh, my, I wish no one had to go through what you (or your dad, or the rest of your family) has to. I don’t say it much, but I’ve been praying for you all. ❤

    1. It’s so true that when I see him “slip” I worry that he or others will realize and feel embarrassed or think less of him. Thank you for your prayers and your kind words.

      1. I’m sure I am only echoing others when I say, “He’s in the very best hands possible.” ❤

  2. I did a course for work a few years ago. It was called The Platinum Rule. The gist was this: if the golden rule is to speak to others as you would like to be spoken to, then the platinum rule is to speak to others as they would like to be spoken to. At it’s simplest it takes in the fact that some people are very gushy and effusive and love to touch and hold others whilst the opposite is a very reserved person who has few words, prefers to listen and is rigid with fear at the though of a stranger hugging or stroking them. But I think it applies amply in this situation too. Your dad would like people to come and see him, even though it might feel strange and uncomfortable as he struggles with communicating and you have the sure knowledge that he will have forgotten about it moments later and you, dear Sally, you would like to be acknowledged and listened to because it is damned hard being the adult carer of the parent who raised and nurtured you. So I think that we should all adhere to the platinum rule and speak to people as they want (and need) to be spoken to. At that moment. And never ever let a moment pass by because therein lies regret and a rear view full of regret is a sorry legacy for anyone.

    1. I had never heard of The Platinum Rule but I like it. It takes the Golden Rule one step further. I’ll have to think on it and look for other ways to apply it in my life!

      1. I’m glad you agree …. it’s one of the few work related courses I ever did that have stuck with me as useful!

    1. Thanks for asking! I have good days and bad days — but I find that writing about what’s going on really helps.

      1. 😀😀 Well, thanks! My mother and I are so different, we have many ideas that are on opposite ends, but I pick my battles, I try to keep the peace! Right now she struggling after we found a bleeding ukcer and she also has experienced a couple small heart attacks. I don’t know that a heart attack is ever small,. The doctor is changing up her meds, and waiting three weeks, before she can go to cardiac therapy. She’s pretty impatient, and just feeling pretty slow and lethargic. But she’s been going 90 miles an hour for 90 years. She just needs to allow the healing to occur!

  3. I understand this from both sides. Minimizing the issue is an attempt at reassuring you, but on the receiving end it feels like a dismissal. Everyone is doing their best.

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