Today's Blog is about the uniqueness of this website, and how the emotions related to caregiving for a spouse with Alzheimer's Disease are so different from those related to caring for another family member with the same disease. I am seeing so much pain in those spouses I meet and talk with.
I invite you to read the blog and give us your perspective. Thank you.
Joan, I have been reading your site for a while. I just wanted to say HI and thank you, and that I agree with 99% of everything I have read about a spouse with AD or some other for that causes the confusion.
My spouse has not been to the doctor and is just now talking about there "might" being a problem. He will only talk about it if I don't bring it up or if I don't comment. Once I try to visit about it, he will shut me off. Although I have only recognized the signs as may be being this for only a couple of months, I'll bet this has been going on for 3 to 5 years. Right now, I am dealing, big time, with the out bursts, anger, and mood changes. I have not found a good way to foresee what is causing the out bursts. We are also starting to have loss of most resent conversations. The same question or statement, or instruction to me will be said twice or three times within a minute or two. Also, he is starting to have trouble counting paper money. Right now, he only has trouble with one dollar bills.
Thanks for putting this site together. I'm sure that there are many people like me who are out there reading but who haven't taken the step to introduce themselves.
My mother died of AD in 1999, now my beloved husband has it. We have been together 18 years; he is 76, and I am 57.
My mother developed every horrible symptom possible. My husband, so far, is confused and forgetful, but still sweet and loving, and he tries SO HARD to be helpful and considerate. Yet it is much, much more difficult to deal with my feelings about my husband's illness. Maybe that's because I was not the primary caregiver for my mother -- my father was, and I only took over when his health wouldn't allow him to care for her as he wanted -- but I don't think so. Perhaps this will sound terrible (and I sure wouldn't want to say it over on the Alzheimer's Association discussion forum!!!), but it seemed more natural for my mother to have AD than for my husband. Just as they say it is far more traumatic for a parent to lose a child than for a child to lose a parent, because it's the natural order of things for one's parents to die first, but not one's children.
Mary, the Alz Assoc discussion forum not only shows how many responses there are to a given thread, but also how many times a thread is viewed. And you are sooooo right ... there are far more "views" than there are replies. For example, there's a thread "who are you", where we can introduce ourselves. It has 1,153 replies, and 43,222 views.
So Joan is helping far, far more people than she can tell...
I've been online forever. Every forum, newsgroup and conference I've ever been on has had a lot more lurkers than posters. And you can tell how long I've been online by the fact that I'm talking about web based forums, Internet newsgroups and BBS and commercial net conferences. It is just plan the way it is that a lot of people who are afraid to post will read. There are even groups that I lurk, but have not as yet posted to, and I've always been more likely to post to any group that I read then to just lurk it.
To the lurkers out there I'd like to point out that you are missing something by not being part of the conversation. You can vent here. There is no one in the world who will understand how you are feeling than the people on this group. We've all been there. And if we haven't been there yet, we know we will be.
Welcome to my website. So glad you decided to introduce yourself. I am pleased that you are able to relate to all of the spousal issues. That is the purpose of this website. I apologize for the late reply - it usually takes me up to 4 hours to respond, not FOUR DAYS, but I've been so busy with the technical problems.
You sound like you are in exactly the same place I was in about 4 years ago. The anger, outbursts, irrationality, mood changes, and not remembering conversations. It is very important to go the right doctor and get the correct diagnosis. We lost 2 years because of an incorrect diagnosis, and medication that made his condition worse. Go straight to the nearest Memory Disorders Clinic in your area.
I looked up Memory Disorders Clinics in Montana, and did not find one. I would suggest calling the largest hospital in the area - may be quite a distance, considering the size of Montana - and ask about memory disorders evaluations and neurologists who SPECIALIZE in memory disorders. Our primary care doctor sent us to a neurologist who seemed to specialize in children and ADD. He and his neuropsychologist were the ones who misdiagnosed Sid. The irony of the whole thing is that the primary care doctor nailed it as Alzheimer's from day one, but backed off when the neurologist said no. The Alzheimer's Association has a Montana website -http://www.alz-mt.org/index.html - that may be of some help to you in finding the right doctor.
Jeff was actually misdiagnosed IN the geriatric memory disorder clinic at Johns Hopkins University. We also then futzed around for another 2 years before someone actually had the right idea and sent us for a PET. But if some doc at JHU who sees AD patients daily tells you he doesn't think it's AD, you tend to trust his judgment.
I just believe there were a couple of docs who didn't WANT to see AD in Jeff, and therefore were determined that that couldn't be the answer. Weird. Finally, a no-nonsense old neurologist with the bluntest bedside manner you'd care to see recognized it and sent us for the updated MRI, and the PET which was definitive. And apparently, from what I've read since, a clearcut AD PETscan has a 95%+ accuracy rating for being correctly diagnostic, as later demonstrated via autopsy.
Mary in Montana, I agree with joang - the earlier the diagnosis the better. And, go to someone who knows what they are doing. My husband was a psychologist by career and was acutely aware of something being wrong. We went to a local neurologist who said there wasn't a problem. A couple of months later, I saw a program on PBS about research at OHSU - Oregon Health and Sciences University. We made and appointment, got an accurate diagnosis, and he has been in research projects. Getting the correct diagnosis fairly early in to the disease and taking Namenda and Aricept were a plus. I really think that is the key. Then, you also know what your future will be and you can decide what is most important to do or forget. Good luck!
I'm Jean from Delaware. Just found this wonderful site. My husband and I are both 65 and he was diagnosed 2 years ago with AD. So many of the problems written here are the same we experience. It was difficult arriving at a diagnosis for him, he had memory problems since 1981 related to head trauma (auto accident) My grown children and I felt that his recent memory was slowly becoming worse and spoke to our family doc. A dx soon followed. I am grateful to find this age and spouse appropriate site and look forward to reading and posting often. Bless you all and your loved ones.
My wife was diagnosed 8 years ago. At that time I began to read and realized that she could be gone very soon, and I thought a good bit about ife after her. But now the disease has been with us for a long time, and we are getting older, and now I almost think that when I loose her, I will be lost too. It is that part of the equasion that freezes my mind. Like life now, I guess it will be one day at a time. And that is the awful part of all of this.
Dave, there are times now that I wonder if I might be one of the 30% of caregivers that do not outlast this disease. It seems strange to even think that since my DH is over 15 years my senior. I thought I planned for our future, but I always assumed I would be able to take care of everything until maybe one year from the end (which is impossible to predict, of course). Two things I am not prepared for - the possibility our investments will decrease permanently in this economy and that I might not have the physical ability to care for a potential bedridden spouse. We are spending an extra week in Tucson (we're the one who live in our motorhome) so I can get another week with the chiropractor here. At this point I'm not sure this is going to be helpful, so, like the above I really haven't thought about a potential Plan B.... And, every time I make an appointment where I have to depend on my DH waiting for me I know wandering could be next and that will be impossible.
Welcome to my website. I am so sorry you have to be here, but it is the place for information, understanding, and support for spousal issues. No one understands us like another spouse. When you get a chance, click on the "previous blog" section on the left side of the website - there will be many topics you can relate to.
Thank you for this website, it is unique in that the majority of the blogs are from spouses. I know that to have parents who contract AD is very sad and stressful, but it is something else when it is your spouse. Most of the other websites are full of mainly people whose's parents have AD, and I was very pleased to find this site.
Welcome to Joan's place! We are a family of spouses who help each other and get and give advice to each other - and rant and rave and find solutions where we can! Please tell us a bit about yourself - and ages, what stage your husband is in, and if there is anything we can to for you, please let us know!