When my babies were born, the doctor gave me handouts, was available for questions, asked me behavior questions and so on and on. And we got subscriptions to Parents Magazine (remember?!) There were columns in the paper about how to deal with child behavior. Many neighbors with kids in roughly the same age group, or parent groups.

But when we go to the neurologist, he seems interested in my husband as specimen. Let's try this test, or that. There is NO offer of support for me or what I might do. I have had to go out and find things on my own, every thing.

Finding this board has been one of the most important things I've done - that and early on getting The 36 Hour Day which gave me some inkling of what we were in for.

But what have your sources of support been? Has the neurologist been helpful?

This website has been the most helpful to me. I have learned so much and consider so many here my friends. Because when something happens at home, you can talk about it here and find out that others have also experienced it and can tell you what they have done. This emotional support has helped me tremendously. Also, I've found out about items I'll need in the future, and have made notes of where to buy them. Also, lately I have bought pull on pants, a medic alert dog tag, a medic alert for the car seat belt, and gotten a letter from the doctor to help us at the airport! All thanks to our group's advice! Thank all of you for speaking up! Some of you have survived horrible experiences in your lives and become so much stronger because of them and I admire you so much! We have said where we are from, and it is amazing how few states have more than one here! We are truly a diverse group. I hope all of you can come on the February cruise. I would love to meet all of you!!!

I agree about this site being the best place to go. If you have a question in the middle of the night on Friday someone will post an answer in a few minutes to a few hours.
As we travel around we've been in areas of support groups. It is amazing how few have a place for the AD spouse to go, so at some point the CG just isn't able to get away. San Diego had a wonderful group for the AD spouse once a week and the rest of us sat and shared while waiting for our spouses to finish, except for once a month when there was something formal for the CG. I don't know why that isn't the norm, since I found that most helpful. Ft. Collins, CO is lucky enough to have a cottage and also groups for the AD spouse.
If anyone is lucky enough to live near a Lezza's Place that is ideal! She wants to expand, but I'm sure money is the issue.

My DH was diagnosed with EOAD at age 53 in Jan. of 2006. A friend of my secretary who I didn't even know called me and said "call the local Alz. Assoc" (she had a mother in the 1970s with EOAD, when no one had even heard of AD, and had later helped start the local chapter). I then enrolled in a free, monthlong workshop they had (two nights a week for four weeks) which taught me more than I ever wanted to know about AD, but I'm so glad I did that. I continue to some of the Associations' workshops, and NOW, the local chapter has started an EOAD support group that meets monthly, and it's great! There are about 6-7 of us, all spouses, and 3 of us went through the driving situation at exactly the same time, and found we could actually laugh about it at the group! SO, if your community has an Alz. Assoc., call them! My DH's neurologist's office has also provided a lot of resources/referrals, but to be honest, I didn't really feel comfortable calling them for information until @ 6months after his diagnosis, when DH enrolled in a clinical trial, so I think you have to have a specialist doctor AND you have to be proactive . Finally, this website is the BEST!!!!!!!!! I still visit the national Alz. Assoc. website/message boards from time to time, but I always felt that those caregivers were on a different planet, chatting about how taking care of their loved one had brought new meaning to their lives, and I'm thinking "you have got to be kidding", so thank you Joan for creating a space where we can be honest, honest, and more honest!

Texasmom, you cracked me up ... "I still visit the national Alz. Assoc. website/message boards from time to time, but I always felt that those caregivers were on a different planet..." Yes, indeed. I do still visit there regularly, and I do get a lot of good tips about this and that, but the whole TONE is so different. And there are so many things you simply cannot talk about there ...

Neurologist? Heavens, no. What ours knows about AD wouldn't fill a thimble, she makes it very clear she does NOT want to work with AD patients, and she was dumbfounded that I cried when she announced my husband has dementia. She not only viewed my husband as a specimen, but one that is somewhat distasteful, maybe an insect of some sort. When he responded very well to the namenda, she thought it was extremely unusual, and you could just SEE her little brain picturing herself making a presentation about this remarkable case to an august body of suitably impressed medical professionals.

We are looking for a new neurologist (surprise), and will probably try to get in with one who also works at the Alzheimer's Disease Research Center where we are enrolled in a couple of studies. The people there are very compassionate and will try to answer questions, although they are too busy with their extremely full schedules to spend a lot of time. But the waiting room is chock-full of books, pamphlets, and magazines, which I can either take with me or ask to have copied (or buy).

They do have a social worker who knows what sorts of support resources are available in town. I had one meeting with her -- a routine part of the first longitudinal study evaluation -- and was rather turned off by her. She asked me what on earth I expected to have happen when I married someone nineteen years older. This from someone who has helped start and run a number of support groups, no less.

I haven't really followed up on those support groups, yet. My husband is still fairly functional, and wants to be with me wherever I go, and he is NOT about to consider going to a support group. Pride, I suppose, plus he isn't entirely convinced he has a problem. I think, if I insist, he'll agree to go, or agree to stay home without me. The problem is that I do not want him to go if it's going to embarrass him; and I'm not comfortable leaving him home alone. Maybe when we get further along, and I have to have someone coming into our home to help out, anyway.

Sunshyne: I should note that my DH's neurologist is part of a large Alzheimer's/memory loss practice group, so that's all they do. AND because he is enrolled in one of their clinical studies, but also has signs of frontotemporal dementia as well as AD, some of his symptoms have the doctors puzzled, so his neurologist will actually call me up from time to time just to check on us! As a result, I really do call on her staff for resource info, and despite being busy, they are very helpful.
I'm in two caregiver-only support groups, one unofficial and really just social, the other EOAD spouses, but I just tell my DH I'm "meeting friends", and since I have other evening meetings at church, at my daughter's high school, etc., he's never really asked further. Once he's had dinner, he's happy just to hang around the house and do stuff on the computer, and he goes to bed by 8pm! AND, I always tell him he's needed at home when my 17 year old is home studying, or getting home from being out, which is humorous since she is actually helping me check on her dad!
Sadly, he would never understand the need for me to talk to someone about how his disease is affecting me and our daughters.....his empathy is totally gone, which apparently is more of a frontotemporal symptom, although based on what I read here, plenty of AD sufferers lose it also. Whenever I do break down in front of him and cry, he just looks confused, and then says "I hope you have a nice day" and walks away. Wierd disease, wierd disease!

Texasmom, my husband just completed his clinical trial. He got along extremely well with the PA who did the testing, so I asked her which of the doctors she thought might be best to be my husband's new neurologist. Funny, she promptly named the very doctor I had picked out from all the biographies.

My husband is due for his annual neuropsych eval for the longitudinal study. It is broken into two different parts. Within two days of my asking the PA for her opinion, the ADRC contacted me to tell me the second day of testing had been rescheduled ... and would be conducted by the doctor the PA recommended. Normally, they don't tell you who will be involved, so I do have a teensy-weensy suspicion that the PA wanted to give us a chance to see how my husband reacts to the doctor before switching to him. How very considerate...

Skee, so far, I haven't had to tiptoe around the "AD" word with my husband. If it upsets him, it sure doesn't show. He is fully aware I spend time on these boards, and I sometimes mention things I think he might find interesting -- personalities, funny stories, things like that. I try to be very natural about it. He seems to accept it as part of my usual talking to him about anything and everything that interests me.

Going to a group, though, that would put him right smack in the spotlight. I brought it up once, and decided maybe I'd wait a while before I tried that again. (Ooops!!!) Although I was suggesting that HE might like to go, to talk with others about their experiences ... not to tell him that I need support. I think that would bother him a lot more than my thinking he might want to go.

Yeah, I'm letting it ride for now. Our situation is like yours -- my husband can seem so very normal at times, that when he exhibits a symptom I'm not used to, it's like being kicked in the gut. I mean, I KNOW that there are so very many things he can't do any more, simple things. But he's pretty good at avoiding those, and I don't push him into "dangerous" situations, so I don't SEE those problems, if that makes sense.

And briegull, I do, I do, I really, really do.