My DHARMA dx is EOAD. He is now 66 .end of stage 5 as I see it. Dr. Calls it moderate stage with more of a decline in language.
I've been on Joan's site since Dec. 2012 ((thank goodness) and have watched many journey's here. It seems like some of the younger spouses have declined and even passed sooner than those with later onset.
What do you think? Planning for the future care for him is overwhelming me. I know I need to take it a day at a time.
Lorrie, don't count on anything holding true for your loved one. my DH diagnosed early 2007 with EOAD after at least 3 years of symptoms. 7 years since dx, and 10 years since symptoms I can pinpoint. my initial mindset was that this would be a shorter journey and I would have done much differently if I had known it would last this long.
Same with my husband - been six years and still doing well. I would say mine is in the mid moderate stage most important is to have DPOA and other things in place
DW was definitely showing symptoms in 2010 at 58 MCI dx in august. Most recent MMSE was 23 . Abilities are all over the lot. She can "drive" a car but cannot navigate at all.
she gets most of the jokes at the local comedy club.
My DH was also showing symptoms of memory loss, confusion , personality changes. In 2010. Looking back, I sometimes wonder about years before. I call 2010 till the dx in 2013 the years I was in panic/ denial mode. I was terrified that he had something terribly wrong, AD, but tried to convince myself I was wrong. In retrospect, I did a lot of covering up and rationalizing to avoid anyone confirming my fears.
So, at the time of dx, he was already in moderate stage. We had already lived through the early stages. A nightmare of fear for me and unfortunately, frustration and I'm not sure what else for him. Some guilt over this...but the up died is by the time of dx, he doesn't know he has AD . Knows he has something wrong with his brain as he puts it.
The uncertainties of this dreadful disease make planning for the future, including financial, very...difficult.
I get it ...no real answers ...no control. I HATE this disease.
My DH was showing signs of memory loss, aggression, and personality changes in 2005. They diagnosed stress related memory loss. Then in 2006 it was MCI. He was 53 in 2005. Then at the beginning of 2007 he had a PET scan and was diagnosed with Alzheimer's. I had told the doctor in 2005 that he had memory issues, so they started before that. We have now been coping with this disease for 9 years. At his last testing his MMSE score was 11. I know everyone says not to rely on that, but he is part of a research group and has been tested for the past 6 years. He started at 23 and stayed above 20 until 2 years ago he was at 18 and then last year in the spring he was at 11. He cannot do much anymore. He still gets around great. He cannot carry on or keep up with a conversation. He has not driven in 3 years. He has trouble finding his words. He is still continent. Which I am very thankful for that. He has trouble dressing and bathing. I could keep listing what he cannot do so I will just say mid to late stage 6. I feel that his has progressed slowly. I do not know if it is because he was put on Aricept and Namenda early on. They say that it is no longer doing anything.
In retrospect first signs around ~2000. DW stopped driving in 01 (ager57) official 'dx five years later. Only thing you can count on the medical profession to do is to document what has happened. They're not very good fortune tellers when it comes to the progression of this disease
Our journey seemed fast. Three years and ten months. Looking back it started many years before the dx. I think DH was in the end stages when dx. How he was able to drive and work until the dx is only by the Grace of God and his guardian angel. Once he was dx he seemed to change about every 7 to 10 days. Declining so fast. Total time with AD, I would say about 15 years. He started with the personality change about that time. And it all seemed to go down hill from there. Early on he started with weight loss, and it kept coming off till the end. No matter how much he ate. Failure to thrive is what they call it I think. It started about two years before the dx. So six years total.
Lorrie...I don't know. I hate it too, and had a really difficult time with the unknowableness of it all. Mine died at 66, almost 10 years to the month after early troubling symptoms. I will say, though, that once he hit stage 6, things progressed rather quickly. As in, it was over in about 1.5 to 2 years.
On the other hand, despite his fairly rapid decline near the end, there were residents in his ALF dementia wing who, in the one and a half years he lived there, didn't seem to change a bit.
Lorrie, I agree with others that the duration of the disease is a definite UNKNOWN. From different articles I have read, it does appear that those who show signs at an earlier age do progress more rapidly. My husband lasted just under 10 years, with the last three being the most difficult.
Thanks for all the responses. The subtle way AD creeps up on us maybe for years, before we see it's ugly face is the first step in its uncertain timeline. First,we wonder when it really began. I know I still look back. Some things I didn't see, many I chose to find any other reason I could to justify my denial. Next, we are left with no way to know how this disease will progress and when and how it will end.
The only certainty is the one we wish wasn't so. We have no power over its course and it will only get worse Until we lose our spouse to this deadly disease.
Makes one wonder how he/she will be able to survive this nightmare that lies ahead.