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

otter
otter Member Posts: 6,099
edited June 2014 in Life After Breast Cancer

I'm re-posting this from the "Older Women" forum, because things are pretty quiet over there:

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.  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 finding it increasingly difficult to cope 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.  No, I have I not moved back in with them to help; and, no, they not relocated and moved in with me.  Why not?  Well, it's a very long, complicated story that I really can't discuss.

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's not comfortable discussing 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 simple, 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

  • mizbabygirl4
    mizbabygirl4 Member Posts: 163
    edited April 2009

    otter - try this link: http://www.alz.org/living_with_alzheimers_message_boards_lwa.asp

    Also, I just listened to a wonderful radio program on Alzheimer's. You can listen online here: http://speakingoffaith.publicradio.org/programs/2009/alzheimers/

    Good luck with everything! You're in my thoughts.

    Janet 

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited April 2009

    Hi Otter: Your post really hit home. I'm in much the same situation - only it's my 93-year-old dad caring for my 86-year old mom. Like you, I live far away, and would also like to discuss these issues.

    Assisted living isn't really an option yet (although it may be some day) since my dad enjoys his yard and garden and would not be happy in an apartment. But he has had to curtail his activities in the last year or so since he doesn't feel comfortable leaving my mom alone in the house. Right now, in addition to a large yard and garden, he also is doing most of the housework, grocery shopping, and cooking (this is one of the saddest things for my mom - she really can't remember how to cook.) Did I mention that he's 93?????

    Looking forward to keeping up with this thread -

    Sue

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  • mumito
    mumito Member Posts: 4,562
    edited April 2009

    Hi otter.  I am ina simular situation.My mom has Alzheimers for the last 8 years. Aricept has kept her from getting worse.  She is still at home with my 83 old father looking after her.  They have a nurse checking on them and bathing my mom 5 days a week.They live in Thunderbay which is a 1 1/2 hour flight from toronto so I can't  go as often as I should.  I used to visit every 3 months but after Dx I couldn't handle it.Telling them i was sick was the worst thing I had ever had to do. Many of us have this to deal with. Hangin there. 

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  • abbadoodles
    abbadoodles Member Posts: 2,618
    edited April 2009

    Otter, there are several groups over on Yahoo Groups.  Try over there.  Also, there must be a national org for alz. where you could learn of support groups online.

    God bless you with all your travails.

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

    Thanks, everybody, for all the suggestions.  Yes, there is a national organization:  http://www.alz.org/index.asp

    ... and there is an on-line "message board" on that site:  http://alzheimers.infopop.cc/eve

    I haven't registered there, yet; and I haven't hung around long enough to know whether it will be personal and supportive like these boards are.  I am going to try it, though.  (Janet, I just realized that you posted a link to the same place.)

    My mom was all set to go to a meeting of the local Alzheimer's support group last night.  I don't know what prompted her to decide to go, since she has only gone to one of their meetings since Dad was dx'd 3 years ago.  Maybe it was the fact that someone was available to sit with Dad while she was gone.  Anyway, an hour before it was time to leave for the meeting, she announced that she wasn't going after all--she was too tired. No amount of encouragement would change her mind.

    It's way more complicated than that, though. 

    otter 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited April 2009

    Otter:

    I know what you and your family are going through.  My dad past away 3 1/2 years ago from this ugly disease.  My mom was his primary care giver for 5 years.  I personally do not know how she did this with everything that was going on (long story).

    We found a local alzheimer's association they gave us allot of useful information and tips on how to handle difficult situations. We bought through them an ID bracelet from my dad which I highly suggest to get.  They assign each person with an ID # this number along with their phone number is on the back.  So if they do get lost the police, fire department, hospital can call to get information on them. 

    I also hope this thread continues and if so I would be more than happy to share our story.

    Hugs and Prays

    Laura

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  • junie
    junie Member Posts: 1,216
    edited April 2009

    Gentle hugggssss, Otter--you think your question doesn't really belong here, but I think it does.   It is a problem that you, as a bc sister, are dealing with.   And, it is a concern that many of us have dealt with, are dealing with, or will be facing in the future.   You have been given some good advice, and other bc sisters facing similar issues will find help here also.  There is a wonderful "community of brains" to pick here--people who can empathise with each other because of our common bc bond, share experiences, and hold hands.   Hoping for a peaceful resolution for you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Oh Otter

    Thanks for starting this thread.

    I know very well what you are going through with your parents. It made my heart stop when I saw this as I am in the same situation......actually farther along that path with my own. It's too painful and long right now to put it all down right now but I will next time. Please feel free to talk about it, it is something many of us are dealing with as our parents age and there is no easy way. I truly hope that approaches to care improve a lot as the boomer crowd ages. I have a lot to add to this topic, I am deep into it with my mom.

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  • mumito
    mumito Member Posts: 4,562
    edited April 2009

    My mom goes to a day program one day a week it gives my dad a day to himself with no responsibilities.  I have also arranged weekly housecleaner for him. The nurse that comes in weekdays to check on them is covered by ohip here.I just wish I didn't live so far away.

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  • shorfi
    shorfi Member Posts: 791
    edited April 2009

    I am in that situation with my mom. She is JUST 77 and against what I ever thought I would do...I have placed my mother in a nursing facility. This was a woman who was the kindest, sweet and loving person you could have ever met. This ugly disease has turned her into a very mean person who fights all the time. She was an educator and to see her reduced to this...is so disheartening. She was diagnosed at the same time I was diagnosed with breast cancer. During the earlier stages of being diagnosed with breast cancer, she would try to accompany me to my appointments. Oftentimes, she would get lost trying to meet me and at the time ALL I could think of was that I need to get well so that I could take care of my mother. I had to ask my sister if she would at least come to my chemo treatments with my mom, so that I could concentrate on ME. It was tough, but my mother was always there...treatments, doc appointments, surgeries, through my own job loss, my divorce (even though the ex-husband and I were separated for about 16 years prior to getting divorced). It was the toughest time of MY life, but she was always there.

    I felt like I failed her in putting her in a nursing home, but it was best. I tried...but it was best for her to go there. I have two sisters and a brother...to me IMHO were no help. I wanted to get better, but they didn't seem to allow me the luxuary.

    4 1/2 years later...I married the man of my dreams and it seems that my mom "waited" until she could see me happy "for once", and she deteriorated rapidly after my wedding. I was married 6 months ago and she is no longer the mother that I knew. She doesn't recognize any of us, and pretty much walks literally all day long at the facility.

    Yes my conscience bothers me because I want to be happy with my new husband and take care of my medical issues...but my mother weighs on my mind all the time. I think I would be able to cope maybe a little bit better if she were sick physically, but this Alzheimer's is so ugly. I can no longer have the long talks with her, call her on the phone all day long (about nothing). I miss my mom...if only she knew Cry

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