I remember around 1960 when we were at a store called Piggly Wiggly. On the clock in the store they had the store name letters for the numbers. I was there standing in line with my mom and I innocently said the time was "PG". She turned around and slapped my face. Of course i was in shock having no idea what I said that was wrong and having grown up on a farm I certainly knew what pregnant was (did not associate PG and pregnant).
When I am applying for workamper jobs I find myself saying "aMCI explaining he has short term memory loss greater than is normal for his age." Alzheimer would definitely shut the door.
My mother contracted tuberculosis in 1939, died in 1955. So she was ill basically my whole childhood. I was to say that she had "a nervous breakdown" - never TB. I was seldom allowed to invite kids over. I suppose a good bit of this was because it WAS contagious and certainly I would have been stigmatized if it had been widely known. I was allowed to go to other kids' houses to play and have no memory of any parent rejecting me. My mother knit all the time (she had to be sedentary), beautiful sets for babies of the guys who worked for my husband (Nancy, at Lane Wells which was bought by Halliburton at some point after my dad retired). .. I confess, I wouldn't have wanted to put a baby into a sweater made by someone with TB, but no one said that at the time. (many years later, a sweater and cap made by my mother and put away as a keepsake was used as the first thing put on my tiny adopted daughter when we brought her home from the hospital. It was a connection I was glad to be able to make)
I do worry about infectious diseases, though. If people are more afraid of giving their kids vaccines than of their risk contracting the disease, we could be in serious trouble if, say, the swine flu mutates. The question of PUBLIC health, not just the health of Little Johnny, will need to be taken into consideration at some point, just as public safety is on the highways, or public inspection of meat plants or water supplies, etc. is.
So now we get into ethics questions and away from just silly verbal conventions! Not admitting Alzheimer's, for instance, means that of course you let your spouse continue driving, since "he's just a little forgetful." ...
Briegull, I watched David Letterman with Dr. Oz on TV this week and Letterman went on and on about how he would NOT get a flu shot, never has had a flu shot and Dr. Oz was speechless. Said, it was his choice, but perhaps not the wisest one he could make. Letterman went on and on about how the complications were much worse than the flu and all I could think of was that he had a HUGE platform...contradicting everything the Center for Disease Control is trying to get the population of the USA to do.
I thought this discussion was about support groups- strayed just a little?? Anyhow, I think it's great if the two groups can go on simultaneously. We don't have a group like that so in my case it means having to scramble to find someone to stay with my husband who can no longer be left alone. That adds stress and another reason why I need the support group.
Thanks Inge - By the time I saw all of the off topic comments, there were too many for me to move them to an appropriate topic.
Reminder to all - When writing under a specific topic, PLEASE stay with the topic listed. Thanks so much.
And on the topic of support groups - I do love mine, and have no intention of changing, BUT there is a dementia unit at the ALF next door to us, and they do have a twice monthly support group. I am going to talk to the woman in charge, and I may attend a few meetings to get the feel of something different just out of curiosity. I know they are looking for speakers for their group - maybe I'll ask her about me doing that.
My wife and I have been going once a week to the only place on L.I., NY that has had simultaneous support groups meeting for early to moderate stage AD ... one is for those with AD in early to moderate stages, and one is for their spouses/caregivers. Each is led by a well trained social worker who keeps the group on track and everyone who wants to speak up at any given meeting is able to do so. Uusally about a dozen people attend each week. At least at the spouse group ... can't speak for the AD group since my wife often forgets what was discussed in her groups as we 'de-brief' each other on the ride home ... all of us welcome each meeting and the opportunity to share what is going on in our lives, hear suggestions from others, etc. For example, I will bring thois site to the attention of our group at my next meeting!! In fact, most of us arrive an hour early to have lunch together before the meetings and some of us email each other between meetings. Several of the women also get together socially for lunch each week, and several also bring their spouses to 'day care' programs at the same facility several days/week. (My group currently has only one other man besides me.) This program is run by the LI Alzheimer's Foundation. The LI Alzheimer's Association offered 31 caregiver groups each month when I checked their website 3 months ago ... but zero groups for those with AD and my wife wanted to attend such a group. Finally, last month they did start one such group for EOAD, led by a tained social worker, meeting one evening/month. We plan on attending several of these meetings in the future. It is a sad fact that, across the country, almost all Alzheimer groups seem to provide multiple support groups for caretakers/spouses ... but very few, if any, support groups are provided for those with EOAD or in early to moderate stage AD meeting at the same time as the spouse/caretaker groups.
I've been unable to go to the support group in my town (although I enjoyed the meetings for a while) because they are held on Thursday evenings. That is a day that dh goes to day care and he seems tired when he gets home: ready for early supper, bath and bed so it would be hard to arrange any friend to come over and keep him company while I'm out (and there is no provision or parallel group at the meeting itself). I just decided to email the person in charge and explain why I haven't been there, since she does her best and I don't want her to think that I'm not coming out of dissatisfaction or some other reason.
I went to our support group again today. Only 3 of us were there, plus the moderator. there were 4 others in the group who weren't there. Maybe the holiday, who knows. I find it tension releasing to be able to speak about his AD to other caregivers, people who are going thru the same thing, or who will, or who have. The folks that go are all spouses. i think mostly spouses look for these support groups.
When we were out to dinner tonight, I told dh about the woman with EOAD that is going to post once a month to give us insight into what is going on thru their eyes. I explained it would be nice to know since he doesn't talk. He said he is still trying to figure out what is going on in his head. I think when I finish with tax season, I will try the EOAD support group. Hopefully they will have a group for those with the illness going on at the same time that he will attend. They are in the daytime here, thus the reason for having to wait.
Nancy, I agree with you. i would never take my DH to the support meeting and have him listen to that. We do not discuss his Alzheimers , as he chooses not to. I would never subject him to that. We have a luncheon type meeting, with whoever is speaking providing lunch.