I got a Christmas letter from one of my college buddies, brother to a best friend, gay from birth or before, but never in a long committed relationship. He's 75, just been diagnosed with dementia, taking Aricept, still making longterm plans to write a book, put an addition on his tiny house. He's across the country from us so I don't see him often.
I'm not sure what to tell him! He's long been a Quaker and is in a group there which he feels is very supportive; he has many local friends, but oh, dear, I fear for him. This was his generic letter; he's decided to be honest about it to all. I'm not surprised; his mother had Alzheimer's for years, and I fear for his sister.
Say what you wish someone had told you early on. Say what is on your heart about this friendship, say it while he can still comprehend and absorb what you are saying. Most of say that you still love him. He is very brave to put it out there like that.
Briegull, if you are really close to him, and want to DO something, I would start by writing him back and thank him for letting you know; and let him know that you have learned a lot about it since your husband has it (or AD or whatever you wish to say), and that tell him about the Alzheimer's Association website, and the information there. I would ask his sister if she knows, and if so, if he has done a POA, and if not, that he needs to have one in place, so that when it is needed, it won't be questioned. This will be a very delicate matter, of course, and you will have to take tiny steps and see if either or both are receptive.
briegull, that is so sad. I agree - tell him what is in your heart.
My dh and his children had some issues. It would have been good for them if they and he could have resolved them and worked past them before AD really took ahold of him. It would have been good if he could have told them how proud he was of the adults that they had become and what they had accomplished. I have tried to pass that information to them but as the "wicked witch of the east", anything I say falls on deaf ears.
I spent half the night tossing and turning about what to say. We ARE close; when a son had a motorcycle accident in S.F., mark was always there with him in the hospital. I sent him a funny "memory test" Carosi had sent me, and he responded that he loved it. This is what I wrote back:
I think you're very wise to be open about your situation. That said, I don't want you to think that Aricept is going to be The Answer. Hopefully there are enough drugs and other stuff in the pipeline that you may get something that will hold the fort if Aricept fails you. By now there's only management drugs for L. (and me - thank god for zoloft!) By the way, as I'm sure you know, there are many manifestations of dementia, not just Alzheimer's. In the past couple of years I've learned so much - more than I ever wanted to know, I can guarantee you - about dementia. About caring for someone.
I spent a good bit of time in the night trying to think of what to say to you. I have been greatly helped by my support group online (for dementia spouses). There are a number of support groups at the alz.org site: have you been to this one: http://alz.org/living_with_alzheimers_if_you_have_alzheimers.asp
It is probably worth monitoring it, and maybe a few of the others.
The most obvious thing you must do is get your poa and poa/health in order.
Another thing is to put all your monetary affairs on-line and have someone you trust (even Sandy) check them constantly. One of the first things that seems to disappear if you have dementia is awareness of how you're managing your money. My friend Helga, who lived alone in Queens, started sending money to everyone who called, became a patron of the Metropolitan (living on social security alone) etc. L. donated over $2000 to the ACLU in a six month period, which I didn't find until I did the taxes at the end of the year. (they were very nice about cancelling his membership)
And, sad to say, another thing that goes fast is driving. If you find yourself disoriented getting home some night, or to somewhere you know well, you really must reconsider what you do - because the judgment may be going.
We say, in my group, that the "reason button breaks early." As does the "judgment button."
A quick google shows that there are several Quaker "senior living" homes. They probably cost an arm and a leg, and you don't get medicaid until you run out of everything else and are in nursing home status. But you really should investigate them while you can still live independently.
>many of the blunders I make I could avoid if I could only remember to think >about it first.
PRECISELY. One of the hardest things for Lincoln was dealing with remembering how to do things he used to be able to do - use the computer, for instance. But it's the disease. The Dementors are not kind. Write what you can as fast as you can - maybe even record it rather than writing it. I edited my friend Helga's memoirs, started when she was 80 and her dementia was very mild. As her life story progressed, her writing got ever more disorganized. It took two of us to put it into a book and make sense of it. But we did it, and she kept it with her to the end of her days last spring. She said "it gives me my life back."
I can't say I was surprised to get your news, because I remember your mother; at this point my sons of course are worried about themselves (though otherwise in fine fettle.) And I don't envy your journey ahead. At this point L. requires a lot of attention to get him up and going in the morning and down at night (functions of his physical state as much as his mental one), but otherwise sits happily watching TV all day. Thank god for the history channels and PBS. He has aphasia, frequently doesn't know who I am (I"m his mother a lot) but is usually fairly to very pleasant, laughs appropriately at the TV shows, loves to tease the CNA who comes in to care for him a couple of days a week. And he is incontinent. All these we can live with, for now. He is pleasant, and physically he can't wander (oh - get a medic bracelet). Not all are.
At least Alzheimers and the other dementias aren't, in themselves, painful, although some meds have side effects. By the time one gets to the point of not knowing who one is, one doesn't CARE either!
What you wrote your college friend, Briegull, was beautiful. Forthright, caring, and so thoughtful of you. It was full of love. I am sure he was very touched and grateful to receive your loving, frank words. You have a very good heart.
Briegull, that's a very caring, sensitive letter with much useful information for your friend. You did a fine job with it. I hope you get some sleep tonight.