lynmac1 Asked December 2011

I see lots of caregivers for parents. Where do I find specific supports directed towards spouses?

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My husband has early onset of Alzheimer's at age 56. He is in an advanced stage. I am 51, and I am the mom of a seventeen year old.

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Jinx4740 Apr 2013
My husband has dementia. We're old (68 and 66), but not elderly. Our only child is a daughter, age 22. So we would have a few things in common. For example, I want to protect my daughter from reality when I can, and I also want her help coping! I may be different from others, but I loved my parents more deeply than I love my husband. I'm not quite as willing to do for him as I would have been for them. But he's a good man and a good husband (if not the best boyfriend a girl could want, if you get my drift.), so I'm here for the long haul.
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195Austin Dec 2011
If there is a local caregivers group in your area try it out the one I went to in our hospital had both elders and spouses family members-it was started by a lady whose husband had cancer and she set up a information site in the cancer unit which could be used by all caregivers-there are a lot of spouses caring for their spouse-you need to be with people who get what you are going through-if there is not a group put up a note in the post office or senior center or whereever you see notes posted and you will probably hear from other -if you have a senior center in your town ask about support groups -also at your lical social service office of office of the ageing-just haveing one person who understands is so inportant. I met a lady at our group and we became good friends even though both our husbands died and she moved a distance away.
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lynmac1 Dec 2011
Guys, thank you to all of you. XXOO Lyn
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EdinNJ Dec 2011
Lyn,

Check out the... Well Spouse Association

which is an international self-help (i.e., member-run) support group, started and run by spouses, just for those spouses for have a partner with any chronic or disabling condition. Members have been helping one another since the organization was started by spouses in 1988!
Their motto is "When one is sick, two need help." In addition to their website, they have over a hundred local mutual support groups around the country, each of which is most savy on all the different caregiving services and agencies exist, and which needs spouses need to fight for! Their one small office is here in NJ.

The national Alzheimer's Assn. has very few local community groups for Early Onset in our state of NJ. But check out their resources in case a support group is near you:

While your husband Alzheimer's was early onset, and I regret to hear that it's now advanced, if other caregivers here with spouses who are just in the early stages of early onset Alzheimer's or any other dementia, there's another volunteer-run independent international self-help support group organization started and mainly run by and for those persons with early onset! They have two chatroom meetings each day. Many caregivers also help out, especially when their loved ones can no longer help with the organization. I know with the economic problems worldwide and donations down, despite their being an all-volunteer organization, they are having a really rough time keeping their pioneering member-run mutual help organization going. They truly have been pioneering self-help empowerment efforts by and for those with early onset for over the last 12 years. But for those with interest, they are at:

Lastly, there are a few local non-profit self-help group centers serving a few areas in the States and around the world, that can advise you of any local groups in your area (especially those support groups not affiliated with a national or international organization). The centers also provide free help to those who want to join with others to form any type of community self-help group in their area. The list is at:

Hope one of these support group contacts may be of help and comfort to you.

Take good gentle care of yourself and your husband,

- Ed
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jeannegibbs Dec 2011
Karie H.,

"all our caregiving articles can be related to your 'elderly loved one.'" Well, sort of. Obviously I find enough applicable that I participate, even though my edlerly loved one is my husband.

But caring for your parent is not the same as caring for your spouse. It just isn't. The nature of the relationship is different. The nature of the history together is different. The impact of watching a decline and the daily losses is different. (Notice that I'm not saying better or worse or more or less serious. I'm just saying different.)

Thank you and the whole team for all you do to provide an opportunity to be in touch with other caregivers.
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AgingCareCM Dec 2011
lynmac1 ,

We are working on developing some content caring for your spouses. In the meantime all our caregiving articles can be related to your "elderly loved one."

Hope this helps and thanks for the advice!

Karie H.
The AgingCare.com Team
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jeannegibbs Dec 2011
Lyn, I find it helpful to participate on the LBDA site, where caregivers are about half-and-half taking care of parents or spouses. It is also helpful that it focuses specifically on the type of dementia my husband has. I don't know about sites for other forms of dementia, but surely there is at least one for Alzheimers. Try googling "Alzheimers Caregiver Support" and see what comes up. Good luck.
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golden23 Dec 2011
lyn -as I mentioned brandywine1949 is and also jeannegibbs. There are probably more. Jeanne has been around quite a while and has many ideas.
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lynmac1 Dec 2011
Sure hope someone sees this. Anyone else there caring for their spouse?
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