Just thought I'd say hello and post an update about my hubby who is not diagnosed with anything at this point...

He continues to have trouble remembering words. I'd say that he can't think of some word in nearly every conversation. Words that he has used all his life - like meat loaf (when he was cooking meat loaf), baked beans, etc.

He caught himself starting to put dirty dishes in the refrigerator instead of the dish washer. He no longer laughs at these type of things. He is upset about what is happening.

He looked at an expiration date that was Sept. 8th and thought it was past due. There was another situation when he was a month off in his thinking about what date it was.

He continues to forget things that he was told a day ago.

These continue to be just "aberrations" for the most part. They are not an everyday thing (except the word difficulty). But they're happening more frequently. His favorite sarcastic comment now relates to his test results from the neuro psych testing which showed that there was no problem with his short term memory. So when one of these momentary lapses occur, he says sarcastically "but there's nothing wrong with my memory".

I just hug him when these things happen. I think that the neurologist had a reason to say to me "in four years, when you tell me his is much worse, we'll repeat the neuropsych tests and be able to see"... I hope it is at least four years before I think the tests will show something that is diagnosable as "dementia".

Dear Needtoescape,

I can see why both of you are upset and confused by the diagnosis (or lack thereof)... but look at it as a good thing. At least he was able to do well enough on all the tests done at the doctor's office to NOT show up as 'early AD" .

The advantages of this are great - he can continue to drive a car, he can continue at his job until it becomes obvious to someone there that his performance is down, you have time to save money, get a better job for yourself, get into some kind of better health insurance or long term care plan, etc. With this 'clean bill of health" no insurance company can reject him, which is not the case later when the label 'dementia' has been pasted on him.

After the loss of all my Mom's life savngs to pay for her care, my brother and sister in law have bought long term care insurance for themselves. It costs $400 a month for the 2 of them. Sounds like a lot, but Mom's Nursing Home cost her $11,000 a month until her money was gone! I am in fact lucky enough not to have a whole lot of money - I could get mine 'spent down' very fast and get on Medicaid early, I do not have a house, etc.

If you suspect it IS early onset AD, you have the gift of time to get all these things organized before a medical diagnosis might stand in your way.

I also hope it never does get worse, and is not AD, and will go away as mysteriously as it appeared .. but just in case, you can make an alternative plan for the future.

Good luck with it!

Martha

My husband was diagnosed 4 1/2 yrs. ago with early onset. He was 68 yrs. old. It has been a real roller coaster ride since. A lot if things happen that you would never think possible. My husband also was not able to express himself without using wrong words. This has since turned into not being able to say anything that makes sense most of the time. Very hard to accept!

Martha, thanks for your input. Unfortunately his heart damage and other (non-dementia) problems would prevent me from getting long term care insurance. I had one chance when they first offered it to fed. employees when I could have gotten it with minimal health questions - but I didn't do it. At that time, I didn't think we'd need it.

Mamaduck, I'm so sorry about your husband. My heart goes out to you. Do you have good family support? If you don't mind a question - how long before he was diagnosed did you start seeing indications that something was wrong?

Hugs to all, N2E

Needtoescape,

To answer your question, I think it was about a year or so. He wouldn't go to the doctor when I asked him to. He was having trouble with his words then. It got worse until one night he didn't know who I was or who he was as a matter of factl Lost control of his body functions and I had a hard time to get him in the shower and off to bed. It all went down hill from there. He has since had a stroke a year ago last December and so on and so on.

My kids are great! They help out a lot but of course they are all working with families and they can only do so much. But I thank GOD everyday for them.

Thanks for asking!

Welcome Mamaduck

My ex charge started with a stutter, and that head bashing "what IS that word" kind of thing .. none of us in the family noticed until a family friend turned up ...

From there the diagnosis was 'aphasia' of some kind ... as she deteriorated, it turned into Primary Progressive Aphasia, which is particularly nasty, because my ex-charge would say "blather blather bling" believing she was saying "Good morning, how are you today?" and she would get increasingly frustrated when nobody knew what she was saying .. believe me, you knew what she felt with the rolling eyes and 'stupid stupid' mutterings ... or the whack as she hit you in her frustration. She also, I believe, believed that she was perfectly fine, thank you very much, it was the rest of the world that had gone insane. Getting her to the doctor was a feat in itself, let alone trying to make her understand that somebody had to go in with her, because the Doctor couldn't understand her !!!!

She was finally diagnosed with Dementia (related to many aphasia's apparently .. NOW they tell us) and from there her deterioration was rapid until we had her placed into a facility where she has improved like you wouldn't believe, except for recently having another stroke which has now left her bed-bound apparently. (We don't know for sure, we are getting 3rd hand messages because we had to move states to make some family members become active in caring)

Anyway, I am so glad you have good family support and that everybody is taking on a portion of responsibility, it lightens an already difficult load.

I am glad you found us !

Cheers
angel_bear

angel_bear, I am so sorry to hear of your ex-charge's stroke.

I assume that Mr. "Leave it for S. She'll take care of it" is still angry that he's had assume the role of responsibility. What a pity he won't get get over it. I'm so glad you managed to get out of there and do what you'd been putting off for so long so that you could take care of the elders.

Mamaduck and N2E, I'm so sorry you're both going through all these problems. It's hard watching a loved one go through this. It's doubly hard when they're losing their ability to express themselves. And the healthcare costs really stink.

Take care of yourselves and God Bless you and your loved ones.

Love, Barb

Hi All,

Especially the new. I would imagine it is really hard taking care of and making the patient with alz understand you and vis versa!!! Take care and always keep a little time for your selves! You need it and deserve.

Love, Wannabe

PS to Angel Bear, sorry about the level of your ex charge going down. We all know that is how it is, but forget and wish there was something we could do. Take care of you too.

LovemyLilDoggie & Wannabe ..

yeah .. you know who is still WILD at my betrayal ... he's willing to talk to his brother, but not willing to ring him and start repairing .. he's expecting my husband to ring HIM and start repairing .. and I guess somebody should, but after everything we/I did .. why does it have to be us again???

Pride Cometh' before a fall ?? hmmm

And the best thing that could happen to my ex-charge is for her to pass on and join my other ex-charge, where they will both be healed and whole. Their quality of life was below poor, and to watch her hanging on like this just breaks my heart.

Anyway, I didn't mean to take over this thread .. sorry !!

angle bear

Thanks for the info. It is hard to deal with someone that cannot express themselves. I feel so sorry for him as he becomes so frustrated. He too had a stroke a year ago this last December. We thought for awhile that we would never see him come home again but lo and behold here he is. He is able to walk real well.....doesn't pick up his feet but what the heck.

I have enjoyed this board soooooo much. Been reading it for a long time until I decided to add my two cents!

Jan