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Any others caring for spouse with early onset?

Posted by wandering_2008 (My Page) on
Sat, Oct 18, 08 at 22:10

Just wondering if there are others who are caring for a spouse with early onset Alzheimer's? Just been a bad week for me, and was wondering if others in our age group have some of the same issues? My Dh is 54, was diagnosed back at the end of last year (just cause he was diagnosed less than a year ago, doesn't mean there haven't been issues for years) I am late 40's and up until this last week I have been handling every thing as best as I can. But this last week, my nerves are shot. I just want to cry at the drop of a hat. I know from attending different meetings and wandering thru different forums there are fewer people in our age groups than others and I know we face different challenges. I finally decided that I need to seek others who are in the same boat as I am and try to help myself. I feel like this is the lonely-est journey of my life. I don't want to offend anyone, but just feel I could use a good conversation with someone who is dealing with a younger spouse who has been diagnosed with Alzheimer's so I can try and understand and deal with the issues that face us/me. Thank You, Rk


Follow-Up Postings:

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RE: Any others caring for spouse with early onset?

My husband had it for 5 years before he died, so I don't fit in the category you wanted. I just want to tell you that someone gave me advice about telling people that he had Alzheimer's, I was told he would be treated differently . I did not follow that advice and it was a mistake. Every time he had to go in the hospital they put him in lock up and just treated his Alzheimer's, not the orig problem. He almost died when his blood count was down to 6 and they weren't treating it, just assaulting him with AZ meds. So I would be careful about telling anyone. And you need to be watchful of his driving. My husband had 2 wrecks because it affected his depth perception. He could have killed someone and we could have lost our life savings. He volunteered to give up his driver's license.


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RE: Any others caring for spouse with early onset?

Unfortunately, attitudes do change when the words Alzheimers is mentioned. For some reason, something like "Cognitive malfunction" or "senile dementia" goes over better. Let's hope that way of thinking changes soon. I can remember back to before Alzheimers was a common diagnosis. People were just said to be getting senile early and it was accepted.

It's the same way with cancer. People react to the word as if the disease was contagious.

I don't have any helpful hints. One thing my mother did was to get in the habit of making lists of things she needed to do. It seemed to help. Perhaps, seeing it written down worked better than just hearing or trying to remember.

Remember the main thing is to take care of yourself too. I know that I don't have to tell you, but you must be the one that comes first in the family as you both will depend on your well-being.


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RE: Any others caring for spouse with early onset?

check out wellspouse.com

it is a forum for caretakers (primarily the spouse) - everyone there seems really helpful, and caring. The IS (ill spouse) problems range from brain injury, Alzheimers, multiple sclerosis, Huntinton's, cancer, etc.

You will need to join in order to post but all they really want is an e-mail address. It is a very active organization, and the different forums are pretty much by topic. Carolyn


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RE: Any others caring for spouse with early onset?

Thanks so much for the info, and the links. I will check it out. Rk


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RE: Any others caring for spouse with early onset?

Here is another site for you to check in to.
There are different forums re: Alzheimer's that are excellent support, but this one is geared to early onset.

I wish you all the best.

Here is a link that might be useful: Eldercare Forum--Early Onset


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RE: Any others caring for spouse with early onset?

did you see the news article on DIMEBON for Alzheimer's? Carolyn


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RE: Any others caring for spouse with early onset?

wandering,

Sorry to say that I too am in your boat. My husband was diagnosed with early onset dementia (lewy body not alzheimers). I was 41, he was 59 at that time. Its been 7 years and we are still struggling wildly with this horrid disease. It is an exceptionally lonely journey. I am sorry you are experiencing this. Feel free to contact me.

God bless.

sistersunnie47@yahoo.com


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RE: Any others caring for spouse with early onset?

My husband has Multiple Sclerosis, diagnosed ten years ago. But he was recently told he has cognitive deficits, like early Alzheimers. He's a mess physically (has taken several falls, and has urinary and bowel accidents) and is constantly losing and forgetting things. He's 62, so we've known about it since he was 52. I'm currently 56. I have my own health problems, kidney failure requiring dialysis in the hospital three times a week. I went to one Well Spose meeting years ago, met a man with a sick wife who was looking for "dates". Total turn off. I deal with my husband the best I can. He is totally against any kind of nursing home care. One doctor has recommended "respite" care to allow me some time off. We are thinking about it. It's very rough on me. I feel very alone in this fight.


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