I am turning 63 in a few months; my wife turned 63 in May and was diagnosed with EOAD in June. I had seen signs of EOAD as far back as 3 years ago but my wife aced the cognitive testing and the neurologist at that time said he thought stress was the problem. A year ago when conditions worsened considerably, and when my wife bombed on several portions of the cognitive testing, the neurologist said depression was the probelm ... despite my telling the neurologist that my wife's symptoms were definitely not signs of depression according to any reputable website I had consulted ... repeating the same question over and over, misplacing objects, disorientation, getting lost, inability to process information, etc. Finally able to convince my wife to let me take her fto another doctor for a 2nd opinion this past spring, she was diagnosed with EOAD at Mount Sinai Medical center in NYC.
Does this sound familiar to anyone? It seems that most spouses of those with EOAD that I've contacted to date seem to have gone throuhg similar experiences.
Welcome to my website. We have many EOAD members here. For starters, please log onto the home page - www.thealzheimerspouse.com - and look on the left side of page. Scroll down until you come to the 4 EOAD sections. The first has articles, videos, and stories about EOAD. The next two are for teens of EOAD parents, and the 4th is an excellent resource guide on EOAD - everything you could possibly imagine. Also, go to the top of this page, and click "search". Type in EOAD, and make sure the "topic" circle is filled in. Click search again, and many topics on EOAD will come up.
With younger patients, women especially, doctors diagnose depression, stress, menopause, ADD, everything but Alzheimer's Disease. One of our earliest members, Tony Pesare, went through this with his wife, who was only 39 at time of diagnosis. He finally took her to Mass.General Hospital in Boston, where she was diagnosed with EOAD.
You will find all the support and information you are seeking here, where spouses understand the problems of other spouses.
welcome, acvann! My dh is also EOAD (diag @ 58, now 64) but unlike your experience, was diagnosed immediately with our first appt in a neuro's office. In fact, we decided to get a "second opinion" just to be certain. Sadly, diagnosis was the same the 2nd time around as well. Hopefully you will find the support, information, etc. that you will need in the days ahead here on this board. So many great people here with such wonderful advice, and a splash of humor, which you will need as well! Hang in there!!
welcome ACVANN! so sorry you are dealing with EOAD. yes unfortunately its seems we all get the 'stress' diagnosis upfront in initial phases fo the disease. they just dont seem to have the tools to diagnose properly but hope is on the horizon. we too got first diagnosis of work burnout and stress and DH retired -then problems continued. i hope you will find good time spent looking thru our posts on various topics only those of us with dementia spouses encounter. its a good thing to be among friends who are right with you in the trenches.:) divvi
Hi acvann - my dh just turned 62. He started show definite signs in 2006. In March 2008 he had a neuropsyc testing, and CT and was recommended to the dementia clinic although we did not get that message. In July 2008 we finally get a copy of the report and I demand answers. MRI was ordered as a nueuro appt. Nov 2008 the neurologist diagnosed EOAD based on the psych report, a few questions, but mostly due to family history. We were in Nevada at the time and decided to head back to Portland,OR where we trusted the doctors more. (he has medical thru the VA) In January 2009 the neurologist here diagnosed aMCI. In July, after another neuropsych testing she changed it to EOAD. It didn't' surprise me that he had gone downhill nor the diagnose due to his family history - dad, grandparents, aunts, uncles and sister who was diagnosed at age55.
Due to family history, I think we got the diagnoses easier than many. Sadly for those under 65, especially under 60, it is really hard to get the diagnosis. Glad you did.
Did the doctor put her meds and do you see any signs of the meds helping? My hb is on galantamine and I don't see where it has slowed the symptoms at all.
Hello acvann--my husband was dx with EOAD at 60. Charlotte, even with a family history (father's dementia in his 40's), my husband was at first misdiagnosed with depression. Bottom line is, even many physicians don't think of dementia when someone is under 65.
Welcome, ACCVAN, you've come to a good place for support and information. Feel free to read and post and ask questions. We are a little older, both 66 at time of diagnosis and my husband had to undergo a lot of tests. It later turned out (didn't tell us at the time) that they were hesitating between different forms of dementia. The diagnosis last December was early stage ALzheimer, but he is having another MRI tomorrow because there is still some doubt as to whether it might be FTD.
Maybe doctors want to diagnose something treatable and curable first ... before diagnosing something that, as yet, has no cure. We were even told to see a cognitive psychologist on a weekly basis, told by the neuro that we'd see immediate improvement after about 6 sessions. Wrong! Then we were told it was possibly a focusing problem so he prescribed an ADD med. and again said we'd see improvement in a matter of weeks. Wrong again!! And the cog psych stood by the diagnosis of depression from the referring neuro ... despite his later admitting that he didn't see signs of depression himself!!
Of course, even had my wife been diagnosed correctly several years ago, odds are she'd still be pretty much where she is now. But it certainly would have saved lots of angst.
It's a shame that doctors aren't more willing to accept anecdotal evidence of probable AD brought to their attention by spouses, instead of relying solely on their test administrations and brief observations during appointments.
Hi & Welcome Acvann! My husband is 58 years old with Frontal Temporal Dementia (FTD) started having memory problems at age 50, however, even after 5 MRI, CT Scans, Lumbar Puncture, EEG'S, numerous blood test & 2 PET Scans, he was not diagnosed until July of last year. His Grandmother & Mother both passed away from dementia, however, since he was only 50, the doctors just didn't think it was dementia. I always knew better. I am sure you will find everyone here helpful, kind & understanding.
WELCOME! Your story does sound awfully familiar. My husband was misdiagnosed with JUST depression and anxieny for 2 years before I won my battle for an MRI which showed FTD. You have landed in a wonderful land of amazing neighbors here at alzspouse. We laugh, cry, support, hug, bicker a little at times ;o) but always love and stand side-by-side through this miserable obstacle course called DEMENTIA. ARMS AROUND. SUSAN
We've been attending weekly support groups for early stage AD for several months through the LI branch of The Alz. Foundation, but the LI branch of The Alz. Assoc. has finally started a new group for EOAD meeting monthly. We'll be going to our first meeting there next week.
A new wrinkle has come up recently ... twice in the past month, situations have arisen when my wife has insisted, quite adamently, that she did something that she could not possibly have done. I hope we're not headed down that dreaded delusion/hallucination thread now. Confusing some occasional dreams with reality was one thing. This is quite another.
Acvann, welcome here. I don't post too often but you have come to the very best place for getting information and support. Its good to hear that you do have support groups nearby and that your wife is going along as well? I wish we had been able to take advantage of something like that. When DH was diagnosed, after five years of tests and struggle to 'find out' what was wrong, the doctor gave me a couple of pages from the Alzheimer's Association website.. Within the hospital network, there was NO support offered, no counseling available. Symptoms began for DH when he was 60 in 1999 (possibly earlier but I didn't recognize it)...in 2000 we began trying to find out what was 'wrong'..finally in 2005 I asked for a PET scan..and he was diagnosed..
Now after 10 years, they do diagnose EOAD..they DO recognize that this can and will begin earlier than 65 or 70, in many instances. But agree that for women, it seems even more complicated. Again welcome and you''ll find a surprising number of EOAD spouses here.
And I'm already in contact privately via email with quite a few spouses of those with EOAD. Thanks, Joan and others, for the warm welcome to THIS site.
I'm very frustrated that whereas Long Island has nearly 3 million people, with an estimated 55,000 of those diagnosed with AD, and up until VERY recently there were 35 support groups meeting for spouses/caregivers but NONE for those with EOAD and only ONE for those with early stage AD ... the one we've been going to, which also has a group for spouse/caregivers meeting separately at the same time. Now we'll see what this new group is like for EOAD ... and its separate group also meeting at the same time for spouses/caregivers. National organizations need to re-allocate their scare resources to provide more opportunities for those with EOAD and those with early stage AD to meet. We have plenty of day care programs and plenty of spouse/caregiver support groups ... but what about meeting the emotional needs of those who are actually suffering from early stage AD or EOAD??!! Truly shameful.
My husband was dx'd almost 4 years ago, and 2 years after we started seeking answers. "They" said it was stress, depression, Lyme disease...took quite a bit of trial, error, giving up, starting again before we were sent to the straight-shooter who knew it was AD and sent us for the proper tests. (mainly a PET scan, and neuropsych testing.)
Jeff is 62 now, and was about 59 at Dx.
I remember sitting on the floor in a Borders book store, flipping through an Alzheimer's book and wondering if they could possibly be wrong and have missed the obvious, after being assured by a geriatric specialist at Johns Hopkins that he did NOT have AD...maybe he just needed some ritalin.
I've just been thinking about how AD has always been thought of as an "old person's" disease, and now there are more and more EOAD cases. (MY DH was dx at age 62). Is EOAD increasing that fast? My suspicion is that it is not, but that in the past most were misdiagnosed and put into mental institutions. I could be wrong, but it just doesn't seem logical that it is something new. More doctors need to be educated about EOAD. In our case we tried to talk to his then PCP about the memory issues, but he just pooh-poohed it. He said it was just a normal symptom of aging. That was at least 3 or 4 years before we got the referred to the neurologist by the new PCP and got the AD dx.
I also remember in the early years being advised we should find a support group. At that time I could see no reason to do that because we were handling it okay. I had NO IDEA what a rocky ride we were in for. I'm one of those who really needed to be educated about AD. That is one reason I am so thankful I found this site. Just wish I had found it earlier, and had educated myself better on what AD really MEANT. At this point I would encourage everyone who has recently received a dx to find a support group ASAP. You might not need it now, but you WILL!
Same early diagnosis as others: Depression, anxiety, stress, ADD, etc. My wife was finally diagnosed with EOAD in about March, 2006. She first started showing signs of with memory problems and repeating things she had just said, in late 2001. She is now well into stage five and some stage six. She is only 63 (I’m 65 and we’ve been married 44 years).
Welcome Acvann. Your story does sound familiar. The only difference for me was that my SIL is a geriatrics nurse. I consulted with her before taking my husband to the doctor. I specifically requested a physical with an eye out for AD. After that visit, we were referred to a neurologist. My DH had both frontal and temperal atrophy. He wasn't diagnosed with FTD primarily because both his parents had AD, although it was called Organic Brain Disorder then
I had also suspected my husband had AD years before. It wasn't until after I got more educated that I realized that he probably had it long before I noticed it. He is going to be 66 this month and is in stage 6. He has gone from stage 4 to stage 6 in just over a year. He was such a bright man. I think his coping skills were exceptional and he was able to hide it for a long time.
As I have discovered from my contacts around the country, including postings on this wonderful website, my story IS all too familiar, and this is truly unfortunate. But like all of you who comment on this or other websites ... or who correspond with others individually via email ... being in contact with others going through similar experiences does, somehow, make things a little easier sometimes. As is true of so many things in life, no one REALLY knows what we as spouses/caregivers are going through except others in our same situation. We can try to communicate what it's like to others ... but it's just not the same.
If anyone wants to communicate with me now and then individually ... to vent, exchange ideas, discuss other things going on with our EOAD spouses, or whatever ... my email address is listed if you click on my name. I would definitely echo those who have noted the wonderful emotional, mental, and social support you can receive from attending local support groups. If they ARE available in your area, you should definitely seek them out. I just wish those same support services were available to my EOAD wife.
acvann, I'm not dealing with EOAD. But you say there are support services and groups in your area that deal with dementia in general. Honestly, although some things ARE different with EOAD, almost everything else is the same. It doesn't matter if the other caregivers are old enough to be your parents, they are dealing with the same things you are dealing with. And yes, that includes sex and child care although you won't be able to talk about sex in the face to face meetings.
I did not go to meetings when my husband was in the earlier stages, and now I can't because I have no respite help. Don't do what I did. Do what I have learned the hard way. Learn from my mistakes. Stop looking for the perfect meeting and just go and try one or two.
Either I wasn't very clear or I have been misinterpreted. Here on Long Island, with a population of nearly 3 million, there was only one group available to people with AD regardless of age or stage!! Just one ... and that is the one my wife has been attending while I have been attending the support group for spouses/caregivers. My point is that up until 2 months ago, there were 31 groups on Long Island, all led by specially trained social workers, for caregivers ... but just 1 group for people with AD. To me, at least, that does not sound like a proper balance or allocation of resources, 32:1. People with AD should also have opportunities to talk with others in similar situations under leadership of a specially trained social worker just as spouses/caregivers have in their groups. So I'm not looking for a perfect group ... I have been attending the one and only group available to me at the same time my wife was in another group meeting across the hall. However, although early stage and moderate stage AD is what it is regardless of age, as you noted there are some issues that are different when someone is diagnosed at age 50 or 60 than when diagnosed at 70 or 80. Now, at least, there will be 1 group for those with EOAD meeting at the same time as their spouses, so we will also attend those new groups starting next week; unfortunately, these new groups only meet once a month, not once a week.
You've hit upon three issues that are of paramount importance, yet severely lacking in resources. The first is support groups for the person with AD. I hear from, and meet people from all over the country, and it is very, very rare to find a support group for the person with AD. I happen to think that those groups are extremely important, especially in the early stages. Just as no one can understand what we as spouses go through, neither can anyone truly understand what it is like to have AD but another person with the disease. Also, it gives them a chance to have a social group with whom they are comfortable, as their old friends fall away. I encourage everyone everywhere to lobby their local Alzheimer's group to start a support group for those with AD.
Secondly, yes, there are some issues that are the same with ALL caregivers, whether a spouse, a sibling, or an adult child. However, those issues are generally what I call "mechanical". Helping with ADL's; finding day care resources; understanding the dynamics of the illness; dealing with rages, etc. However, the EMOTIONAL issues, including the sexual aspect can only be discussed and understood by spouses, which is why it is important for spouses to be able to get together and discuss these issues openly and honestly.
Third, yes, there are caregiving issues that are the same whether you are in your 80's or your 40's, BUT those with EOAD do have very different issues to which older caregivers cannot relate, nor do they need to discuss. Loss of the ill spouses' income in the prime of their earning years; mortgages; college savings; and the double whammy of dealing with your own emotional losses, while trying to help your young children and teenagers understand and cope with what is happening to their ill parent.
As part of National Alzheimer's Awareness month, I think we should raise some awareness within the Alzheimer's Association, and lobby for more support groups for people with AD. I can't begin to tell you the difference it has made to many of the guys in our group. One guy refused to come for months, then met everyone at a party at my house, and thought - well, maybe this won't be so bad after all. He started coming to the meetings, and never misses one. He goes on the outings and loves it. His wife said that she was shocked one night when we were together socially, and he admitted to his memory problems. She said he had never done that before, but feels comfortable with us and the guys when they are together.
Yep, Joan ... that's why I am looking forward to this coming Tuesday evening when my wife will have her first opportunity to be in the same room with others with EOAD ... and I will have my first opportunity to meet with spouses/caregivers of those with EOAD. My wife is experiencing feelings that need to be shared ... and she also needs to receive support in person from others experiencing those same things.
Hi acvann, I just sent you and e-mail. I must say that my experience with my husbands journey to diagnosis was opposite of yours. I was hoping, with my head in the sand, that he was suffering from depression. However, the initial neurologist thought it was hydrocephalus and then, with further testing switched to Alz. We then went to Columbia Presbyterian where, after multiple tests and procedures, EOAD was confirmed. I am curious about the group that you found for yourself since I have had no luck in that area to date...Sue
I too wanted to believe his problem was depression. I denied it could be anything else for few years. With a family history of AD and his younger sister being diagnosed at 55 - well I knew the chances it wasn't depression. After being fed up with him repeating and forgetting I forced him to the doctor. The first time the doctor did no follow-up after the neuro-psych testing. When I read the report a few months later, I demanded further action.
Charlotte ... my beef is that I was keeping a log of my wife's symptoms and I would show these logs to the neurologist ... and to the internist ... and to the cognitve psychologist. My logs clearly demonstrated almost a reproduction of any website indicating symptoms of AD ... repeating the same question to me over and over without any memory of having just asked that same question, not just forgetting things but also getting lost while driving to the doctor's office 2 miles away because she couldn't remember how to get there, aphasia, lack of interest in hobbies and activities that used to give her great pleasure, mixing up details of past trips and past events, disoriented in hotels when we'd be on vacation or not recognizing places we've been to 100s of times while driving, repeatedly misplacing things in the house, etc. But all of my log entries were repeatedly ignored. After all, the blood work, MRI, CAT, cognitive testing, etc. didn't indicate AD. And, each time we'd actually be in a doctor's office, my wife would eventually start crying in response to questions about how she was feeling. But the tears weren't due to depression ... they were due to her awareness that something was wrong and not knowing how to 'fix that' ... knowing she was 'losing' part of herself. I knew that ... but the docs didn't see it that way at all and my anecdotal 'data' supporting a problem other than work overload, stress, anxiety or depression kept getting ignored. THAT is what got me so upset 'back then' ... and as can readily be seen by thsi response it is STILL upsetting to me even now!!
You have just listed, almost word for word, what scores of EOAD caregivers go through with doctors. Tony Pesare, who was a member of this site from its beginning, went through the exact same thing with his 39 year old wife. Doctor after doctor after doctor - it's depression; it's early menopause; it's ADD. FINALLY, he took her to a specialist in memory disorders at Mass. General Hospital in Boston (He lives in Florida) and she was diagnosed with EOAD. Sadly, she lost her battle with the disease last year at the age of 43. Tony has become a tireless advocate for EOAD awareness.
There are many EOAD stories on the home page - www.thealzheimerspouse.com - on the left side section -EOAD. This is one of Tony's -http://articles.orlandosentinel.com/2008-06-15/news/spotlight15_1_early-onset-early-onset-raise-awareness
acvann--Just a quick comment on the Alzheimer's Association. Although there is a national headquarters (Chicago), it appears to me that each local chapter runs pretty independently and decides where to allocate their resources. We are fortunate that the Maryland chapter has made EOAD and early stage AD priorities; for several years now there have been support groups tailored to those needs. Our chapter, even though much smaller than the NY chapter, even has an Early Stage Coordinator. If I were you, I'd search out the equivalent person in the NY Chapter and make yourself and your concerns known.