When I bump into people who know the diagnosis, they always ask how he's doing. I usually try to be upbeat, stress the positives--i.e., he doesn't know how impaired he is, he's happy most of the time, etc. Yesterday I decided to change that and give an example of something that can give people more of a snapshot of the situation. Steve wanted something to eat, woke me up from a little nap I was treating myself to on Sunday afternoon, so I told him to get himself an apple. He went in and pulled out a bag of frozen veggies and showed them to me. I said, no honey, that's the freezer, look on the right side, bottom drawer. He next showed me a plastic bag with half a cabbage and onion, that had been in a different drawer. So I got up and got him the apple.
Will this make any difference is how people respond? Probably not, but I'm going to try it. Of course, the average person doesn't know about visual agnosia, they would just think he's so far gone, he doesn't know the difference cognitively between the items. But in the end, he would require my assistance regardless of the cause.
Marilyn, i think most people are being 'kind' by asking and would prefer not a detailed explanation =your responses like ours are probably generic ones like, 'hes holding his own, or 'hes good for the stage hes in, or somedays better than others. ' more details i find will make the person asking uncomfortable. i just thank them for asking and leave it at that. unless they have dealt with AD they have no clue anyway. divvi
We had old( 50+ years) visit for a couple of hours recently, and the husband didn't make eye contact with G once during the time...and it was noticed! Wife is very aware and caring, but he is the self absorbed variety and will interupt anyone (his wife included) immediately when they begin to enter a conversation. It was exhausting! Didn't even ask how G was once. Write off!
I am really pleased when someone asks...that's so much better than most people who do not know what to do and ignore the issue totally.
Totally agree with Divvi. My asnwer is "he thinks I am wonderful and beautiful....dementia ain't all bad!" We all have a laugh and the truly interested ones will presss for more answers and might even ask how am I doing...
When I am asked I just tell them some days he is fine and others not so good. Which is true and I would prefer it stay that way and not get into the rages and poop patrols that so many seem to be going through. I know I won't be as serene about it as Divvi!!!
I either say, he is having a good day today or he's in a bit of a rough patch. You'all are right...the ones that really want to know will ask some questions. So many people just don't understand, not because they don't want to...it's just not within their realm of experience.
Because of the exact situation we are discusswing on this post, I started a Blog about Carol for family, close friends and others who ask "How is Carol doing???". I had these 1 1/2"x2 1/2" slips of paper printed that I carry in my shirt pocket and/or billfold. I give a short answer but hand them a slip and suggest that if they want to know more about Carol's fight with Alzheimer's they can go to her Blog:
Here is a blog about Carol and Alzheimer's: http://howiscaroldoing.blogspot.com
It is a free service and very easy to keep up to date. Take a look. bill
I tried to to keep people, especially our family (on the family website) and got little to know response. Occasional phone calls to him, but, I don't think people want to hear bad news. if someone asks in person, I give them the abridged verson. Reread my "poem" DON'T DIE.
After bille mentioned his blog for Carol, I too started one. If no one reads it that is alright because for me it is therapy so to speak. I sent the link to family and friends so if they want to know - it is there. No responses yet, but that is OK.
As for people asking 'how are you?' some where I read where they really don't care, just being polite. To tell if they are the few that do care, say something 'the day really stinks' or 'I plan to kill myself later today.' Believe it or not, when I have come back with remarks other than 'fine', people just walk away, even pastors. Weird, sad, but true.
I have had people be really negative with me if I tell them something they don't really want to hear. Like, "Hubby is having a bad day today. He has been like a child going through the terrable 2s." They will come back with something like, "Why don't you just put him in a NH?' and then maybe the next time I see them they say something like,"Has he gotten any better yet?" I'm thinking, ?????????
Don't we all do the same thing? When you meet someone with a sick LO, you ask how he's doing. How much do you really want to know? I never stressed the answer--protected myself. 'He's fine,' was enough for me. I wasn't all that into discussing the details with anyone. Hurt too much.
I tend to also give generic answers...sometimes I will get sarcastic because people just don't get it...How is Audrey doing......just great, she discovered the cure for cancer, but unfortunately she cannot remember it...she has also invented a car that runs on water, but forgot where she parked the only prototype.....some people just don;t get it...
I'm considering telling people, "If you really want to know visit TheAlzheimerSpouseMessageBoard. Not only will you know how she is doing now but you'll learn what the future looks like as well."
Right now, I just wish somebody would ask how DH is doing. It's terrible to feel like your wonderful husband is invisible because people don't want to hear about this disease. Even family members would just rather not know anything at all. I do have one wonderful uncle who has worked with hospice for years, and he really does ask and want to know how things are going. I think he's the only one in either family who actually "gets it". He's been a lifesaver to me.