Saturday, May 07, 2011

Disordered Communications

I feel like I'm playing that game where one person talks into another's ear, and the message gets passed along like that until it's turned into something totally different at the end.

First, I'm told, this is X or maybe not, so we're going to do Y, and then, depending on Y, we may do Z.

Then I'm told, they decided not to do Y, but to do Z directly.

But then, apparently this morning, they did Y, and tomorrow they will do Z.

I don't know where the decisions change. And, to be honest, it's not like I have any say in these decisions, but it still bothers me that they seem to just change.

I talked to my Mom an hour or so ago, and she seems in good spirits, coherent, and not in pain. She hung up pretty quickly, though, because she had a visitor from her retirement complex.

The thing is, my Mom's good spirits: is she facing potential difficulty with good spirits, or is she not understanding that things could be serious, or is she in denial? I'm not sure I could tell even if I were in a room with her. And I'm not sure I can tell how potentially serious things are or aren't.

It's like, she tells me the doctor told her A. And my aunt tells me the doctor told them both B. And then my aunt tells me that the doctor actually thinks C. A, B, and C aren't all that different, so maybe I'm just not understanding. Or maybe others aren't quite understanding. Or maybe different doctors say different things, and don't want to actually say the bad news that I and J might be.

***

My Aunt seems concerned that I'm not concerned enough. I haven't, for example, dropped everything and flown to be by my Mother's side. My Brother and I talked about this, and we both agreed that we'd offer, but that we didn't think either of us would actually be able to do much good by being there, fretting in a hospital room. (My Brother and I are so alike in some things that it's almost funny. This is one.)

My Mom turned down both our offers. She doesn't want to have to be in a room with us sitting and fretting, I bet.

Unfortunately, though, neither of us being there means that my Aunt has taken on a lot, and I wish I could change that. But, again, I don't think my flying out and staying so that I could run an errand or two would really be a great idea.

I did give my Aunt another family member's name, and suggested that he would be a good person to call on for help. And I have friends in the area, and I bet I could call on them (and I may, still, especially if I fly out).

***

Thanks for the kind words on the previous post. Thanks especially, Beck.

Well before my Dad died, even, my parents and my brother and I had talked fairly extensively about our wishes in the event of a variety of problems. My Mom has long realized that she didn't want to put her kids in a position of having to make decisions without appropriate knowledge or backup, so she put those into place. I also filed one of those directive things, the one you file if you really aren't sick yet, just in case you get in a horrid accident. But when I went to the clinic, they couldn't find it on their EMR. So I may need to file another.)

Part of why she wanted to move into the retirement complex she's in (which she loves) is that they've got a great support system for people having different problems. So, if she can be in her apartment, the complex has nursing and aid staff who will help her dress and so on. If she needs more acute care, they have that. If she were to need a special safe place because she had dementia, they have that.

I'm very grateful she's taken this responsibility, because she's absolutely right that it will make everything easier for my brother and I, and allow us to focus on being good to her and each other and our other responsibilities.

Janice, Your holding pattern metaphor is brilliant. Thank you.

7 comments:

  1. Not much I can offer but empathy, Bardiac: there's sort of a slow-motion analogous situation brewing with my own family back home, which of course is where I almost never am. I second Janice's advice, and I wish you and your family the best possible outcome.

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  2. It's hard to be far away at times like this. Sounds like you've all planned for times like this, you've got good communication networks and good affection flowing...I think your intitution will help you figure out when to stay and when to go. In the meantime, sending good thoughts your way, your mother's way, the doctor's way.

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  3. Anonymous6:41 PM

    Just to say that I found my mother's doctors talked to me frankly and fully, as did her nurses. You might just call the nurses station directly and or ask for the dr to phone you. Once we got to the hospital, my mom's dr sat right down with my sister and me to look at and explain her scans, etc.

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  4. (((((((Bardiac)))))))

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  5. thinking of you and your family; sending hugs to all.

    it sounds like you have communicated well as a family, that you all agree that everyone shouldn't fly out any time any thing happens. there might, after all, be a lot of things along the way; and this one sounds like it will get under control reasonably easily.

    anonymous' suggestion to talk directly to doctors and the nursing station is a good one. we usually got good day-to-day info from nursing stations, but the nurses can't say much about things like diagnosis, prognosis. had more mixed results trying to talk with doctors -- some are really helpful, others are preremptory and/or don't return calls.

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  6. Second -- or third -- to anonymous's suggestions. Depending, of course, on the doctor, it can be really useful to talk directly to him or her.

    And I'm so sorry to hear about this. Hope everything goes as well as it can.

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  7. I'm very sorry about the hard news and hope you are doing okay. I found it hard to figure out whether to visit or not when my mom was sick, especially since my mom said she didn't want me to come. But in what way did she mean that?? It sounds like your decision is right for now, though. I wish you and your family well.

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