Is there a good discussion board for Alzheimer's caregivers?

otter
otter Member Posts: 6,099
edited June 2014 in Older Than 60 Years Old With Breast Cancer

I know this has nothing to do with BC, but I figured those of us in our 50's and 60's (and maybe older or younger) have parents who are struggling with their own serious health problems.  I also know there is another thread on this forum about "Parents of older women", but it's not very specific or very active.

What I'm wondering is if any of you have run across an on-line discussion board similar to the BCO boards that's for people with a family member who has Alzheimer's Disease.

My dad is in the middle stages of Alzheimer's.  He lives at home with my mom as his sole caregiver.  They are both in their early 80's and Mom actually has more serious health problems than my dad has.  She is having increasing difficulty coping with Dad's progression.  (He recently developed urinary incontinence, for instance; and between the battles to get him to the bathroom and the unending piles of laundry, she is at her wit's end.)

I live more than a thousand miles away.  Why have I not moved back in with them, so I can help out?  Or, why have they not moved in with me?  It's a very long, complicated, and sad story that is way too personal to divluge here.  But, I do need to figure out a way to offer my mom advice and suggestions when she asks for them.  She says books like the "34-hour Day" are too depressing, so she won't read them.  She can't or won't go to local support group meetings, because she doesn't want to talk about personal family things, and there's no one to stay with Dad while she's away.  She doesn't want a home health aide in the house, because Dad will need to be competely house-bound to qualify; and she won't pay out-of-pocket for home help.

This feels like a very slow spiral into the ground. I know nothing about it will be easy, and there is no happy ending.  Mostly I'd just like to be able to talk to people who are dealing with similar issues.  Anyone have any suggestions?

otter 

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Comments

  • otter
    otter Member Posts: 6,099
    edited April 2009

    (I moved this over to the "Moving Beyond Cancer" forum, where it will be seen by more members.)

    otter 

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  • lemonjello
    lemonjello Member Posts: 75
    edited April 2009

    This forum is notorious for drawing a blank .

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  • Cindy_B
    Cindy_B Member Posts: 13
    edited November 2009

    You may have already found a message board online since you started this thread back in April, but I wanted to let you know that the Alzheimer's Association website has a nice set of forums to use. I hope links are allowed on this forum. If not, I apologize for breaking the rules, and mods please delete the link:  http://www.alz.org/living_with_alzheimers_message_boards_lwa.asp

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  • Isabella4
    Isabella4 Member Posts: 2,166
    edited November 2009

    Otter I can sympathise with you, but can't give you a message board !

    My beloved Grandma came to live with me when it was obvious she was unable to function alone. No-one else in the family, including her own 2 daughters would commit to her. I was 37 at the time, 2 kids, 2 jobs....but gave 1 job up, and we managed. I was beyond disgusted with the rest of the family.

    Now my mother, and her sister both have Alzheimers. One is 90 and one 88, both are in nursing homes so the burden isn't great, no 24 hour care for any of the family. I have very big issues with my mother, and don't ever want to see her again, I love my Aunt, she was good to me over the years, so I go and visit her as often as I can. They are both as dotty as dotty can be !!

    Then I have MIL, she's also dotty, but is coping in her own way, but needs a lot of practical help from DH and I ( but not, funnily enough, from her other 3 children !!!) I find it very hard, as I suffer from Arimidex symptoms quite badly, and am sometimes less than pleased when the 'phone goes, yet again , at bedtime. DH has usually gone to the pub, and I have to drive down, very often in my pj's, and do something for her that could easily have waited 'til next day. She is very clingy, and always wants me to stop and talk, when all I want is my bed.

    If I live long enough I quite expect to go dotty myself , its in the family !!!!!!

    I do hope things have resolved with your parents now, and your mother has got help, how on earth you can cope with a 1,000 miles between you is hard to understand.

    Isabella. 

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  • Cindy_B
    Cindy_B Member Posts: 13
    edited November 2009

    Isabella, what a challenge you have! I am humbled by your willingness and ability to take on all that you have in behalf of your family members that need you. Thank you for sharing your experiences here.

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