It would be nice to have JUST ONE DAY where everything went right...no new stressors, no losses, no complications to ANYTHING. I cannot recall 'before' very well, and it's only been a couple years, so maybe there is no such thing. But what VERY FAINT recollection I have...it seems there were sometimes even days without 'crap' to deal with. I've resolved that if that time ever returns I will NOT be bored but will be thankful. Just venting. I'm sure all are in the same boat. I'm working hard to off-load things, say 'no' to taking on new things, etc, etc, etc. but...there's always a number of issues daily it seems to add my stress despite my best efforts. Yesterday the daughter I'm closest to wanted my camping stuff for her family! I told her my DH was dying, not me. I would be living another 30 yr or so (based on family history) and likely would not camp by myself ALL that time, but surely for several years 'after.' FYI, My DH has earlier onset Alzheimer's and his progression is SO rapid I can't imagine he can live beyond another 2-3 yr. I admire all of you who have hung on for way longer than 5 years and truly cannot understand HOW you manage. I'm really looking forward to 'after.'
Libby, how old is your DH? Is it possible that he has FTD? The expected lifespan for FTD is 8-12 yrs. Though none of us has an expiration date stamped on our foot.
How do you keep going, I DO NOT KNOW. Right now I'm burned out. Toast.
Oh-Libby-that is so sad and horrible. Since your husband is so young is it considered EOAD? Is there a difference in treatment. Why is this happening to us
My husband has EOAD and as far as I know there is not difference in treatment. The neuro would like to add Namenda but the VA will not cover it until he gets to 'moderate' because it has only been approved by the FDA for moderate to severe. This despite they seem to get better results when adding it in the mild stage.
We were so befuddled after DH's diagnosis. Had no idea what to think in terms of 'how long' or how fast. The camping equipment reminds me of our son who wants to buy our house someday and actually needs it now with his growing family. When DH was diagnosed and we were trying grasp everything that seemed to mean...he was thinking that it would be a matter of months before he'd be able to buy the house.. Its been four years since diagnosis and their little family may be grown and out before I'm able to sell it to him. There's no expiration date on anyone's foot for sure. My mom tells us to put our names on things we want someday..guess you could put a dot of paint on the camping equipment..if its still in useable condition after 30 years.
I did think Namenda helped a lot with Aricept. DH stopped taking it during a phase of being suspicious of his medications. Burnt Toast is a familiar feeling here too..but the addition of Risperidone has made a HUGE improvement so far.
Well my DH can't take any medication so nature is taking it's course unimpeded. We've tried several and all decrease his quality of life, so neurologist agreed we might as well forget it. DH is at a point where he still recognizes the loss and does not want to 'stop' at this point even if there is suddenly a miracle drug to arrest the process. Actually, I'm glad as neither do I. I'm trying frantically of off-load stuff, but need for my own sanity to continue a few things I enjoy...like teaching American Sign Language. Sigh.
Libby - I am thinking of contacting the doctor about the acid problems that continue. Despite being on extra strength anti-acid, he still is having problems. I notice the tums are disappearing. He is on galantamine, which is suppose to be similar to Aricept. Is it Exelon patch they use that causes less problems? Anyway, if need be we will go off them. Doesn't appear to be slowing him down much.