Today was the monthly meeting of the support group I attend. One woman was concerned because her husband was incontinent at night and he was every night soaking their whole bed and her, until she wised up and got him a rollaway. But then he still soaks all that every night. I started saying well, pad, with chux above, then Assurance from WalMart and DoubleUp inside that. And she said well, he wets all the way up to his shoulders. So I said well, make sure he gets his equipment aimed down, and try putting on briefs over the depends.. and the whole room was very quiet and I realized that what I was saying was what we say here all the time, no problem, suddenly sounded very inappropriate. I said, oops, sorry!
But what I love about us is that we can say such things!!
Gee, One wouldn't think that would overwhelm a support group...I would think those attending would all have occasional severe problems.. But, I agree with you about this site.
I think the best pads my sister got for the bed were ones she ordered from The Vermont Store catalog. They were the largest she could find that washed easily (vinegar in the rinse helped with the urine smell).
OK. I'm dense. Why were they so strange acting. If I'd been there, I would have been so happy for someone to have told me how to avoid the problem of a soaked bed. I don't have the problem but I may have it one day and I will know how to handle it, thanks to all of you.
What a wonderful place this is. I've learned so much and you don't have to act weird or anything. Just say it. I love it!
Mawzy-we are not weird-its the rest of the world with its head up their (well-you know where). How wonderful that we trust each other to say what we feel
That is what I love about this site, there is no sugar coating to a devasting disease. Everyone here tells it like it is, and not something you should talk about in a whisper. As I have said before, this site has been a godsend to me.
Sometimes I think most of the folks that participate in the once a month support groups are still in denial about their LO's having AD and may be still recovering from the initial shock. Reality hasn't set in yet. I tried attending a support group a few years ago, I didn't find them very helpful. The on-line boards and especially this one are far more helpful to me. They are here everyday 24/7/365.
This group is the most honest and up front group of people I have encountered since we began the AD journey over six years ago.
i couldnt sit with a group that had those issues..especially MY issues, can you imagine? nobody would come back..hahah..their loss if they dont want helpful hints! you go briegull i bet she went home and makes SURE the 'appatatus' is down! :)divvi
In the few caregiver meetings I attended, group was small, only one other member was caring for a spouse and the discussion primarily related to loved ones in residential care. I was floundering, scared and worried. The knowledge, experience and creativity needed for surviving day to day has only been found right here.
I've tried a support group for caregivers, but found it was mostly for children of parents with problems. Very few had spouses there. This place is such a comfort. Sometimes when I can't sleep I come here and just listen to the rest of you and how you've handled various situations. I'm so grateful.
Yes, that's it. A couple of women with husbands in nursing homes, a woman who has two sisters with AZ (she doesn't tend them; I think she just is lonely); a couple of daughters, neither of whom are doing direct 24-7.. this new woman, and a couple of men, one with a wife in a n.h. and the other a widower who was invited to talk to us about "when it's time"... he was very good and very supportive and I felt comfortable with him. It was some of the women who looked a bit shocked .. and of course it was one of those things where we were all sitting in a circle but talking across the cookies to one another - and my voice (which is not a soft one) sort of rang out into one of those accidental silences!
briegull - at least you did speak up. I am willing to bet that even if those people don't have a use for the information, they will remember it and maybe pass the information along to someone they know who does need the information. Good for you on speaking up.
I also have tried a support group for caregivers and found them wanting. They did seem to be in denial, that this wasn't going to get that bad. Granted, they were caregivers to mothers, fathers, sisters, brothers but not husbands. I thought they just didn't get it! Then I found my cyber friends here. I am so grateful for all of you, you have saved my sanity and I have learned so much.
Briegull, they should be ashamed of themselves! Sounds like their sensibilities were in jepordy.
I also have attended a support group, not a large group.helpful in some ways, but this web-site is something special, it touches on every subject you can imagine, and with honesty. I have learned so much, reading all the different threads. This is where I go, after LH goes to bed. I am grateful that I found this web-site.