Yesterday, I received a call from another younger-onset spouse whom I hadn't spoken with in a while. She had sad news to relay--her husband died two weeks ago. But the real reason she thought to call me is that earlier in the day, another wife of a younger-onset person with dementia had introduced herself. One of the things they had in common is that they both know me. It was so great to hear that the friend who called me plans to "pay it forward" and reach out to the second. The latter is still in the earlier stages of caregiving and is under tremendous stress; she could use a mentor. I had researched support groups in her area and recommended anti-psychotic meds for her husband, but she lives about 45 mins. to an hour away and it has been difficult for us to meet face-to-face. However, this other friend lives in the same neighborhood and I think it will be a great thing for both of them to be in contact. Wouldn't it be wonderful to have a network of caregivers, who could somehow be matched up based on geography, age, etc. and have an experienced person hold the other's hand during the really tough times? As we often say, only we who have been through this experience can really understand it.
What a wonderful idea. Three of us are meeting for lunch on the 25 th on Ottawa. I am really looking forward to this get together. We all live in or within an hours drive from Ottawa and this will really help.
that's a wonderful testament to your savvy and caring work Marilyn! kudos to you. keep it up -we have no idea how many one can help who are alone and feeling lost.
MarilyninMD - how thoughtful of the other spouse to keep the support going. It would be wonderful if there were a network of matched caregivers who could provide face to face support for others in their area, based on age and circumstances. As Jazzy has said, three of us are meeting for lunch on the 25th in Ottawa - closest point for the three of us, and I am also looking forward to it, as at the moment the only support I have from people who truly understand the situation we are in is from this board. Isn't it wonderful that Joan's site has provided us with the opportunity to reach out to each other!
This is like a dream come true Marilyn MD, how I hope for the day when many more of us can make this a reality. I have met one older man at a support group who just lost his wife, and he calls and we talk. Sometimes meet for coffee. However I would really like to have a gal pal that knows what being in the trenches are, I know no one here like that. (lucky for them)
How wonderful that would be. I really admire you for continuing to be so involved in your support group and reaching out to others. I have been asked to talk at the group that meets at the nursing home, but I just can't. Most of the spouses are at least 20 to 30 years older than me, we just don't connect. This is the same reason I have never been able to find a support group that was of help either. (other than here of course :)
What a great idea. I occasionally meet a man on my walks whose wife has Lewy-Body(I think this spelling is wrong,wrong,wrong ????)syndrome. I have told him that we could meet for coffee and chat. He has told me that there is nobody else who understands like I do. It is just too difficult for many to get away to receive the support they need so badly.
I have mentioned previously, a book I have, entitled The Cherokee Feast of Days. There is a writing which talks about reaching back and helping those who are coming behind. I love it and if I ever find it again in the book, I shall post it.
This type of network might be a great project. Perhaps it's meant to be--this a.m. I received an email that my mentor (a geriatric nurse) has just retired. She would be a tremendous asset. I'm wondering if anyone, anywhere, has attempted this? This website is wonderful and has been a godsend to me (and so many others), but the Internet just doesn't work for everyone. There's just nothing like a face-to-face connection. Through the horrible early years, I kept wishing for a live person I could turn to who had already "been there" with a younger onset spouse. I know others must feel that way too.
I am not sure if this has been done for Alzheimer's, but I do know other diseases have implement a network like this. Until 2011 I was a contact person for the Trigeminal Neuralgia Association. It is a rare nerve disorder, therefore there are not a lot of support groups out there. The association recognized the need for individuals diagnosed, or those having a difficult time coping with the horrific pain, to have someone they could reach out to, talk to one on one. For years I was a volunteer for my state and we offered email support, phone support and if the person wanted to, we met in person.
To find out if such a network for Alzheimer's is already in existence, I would ask your local Alzheimer's Association.
This is what the site says about the TN support network. If they don't already have one for Alzheimer's, I think you would be the perfect person to get the ball rolling Marilyn ♥
"Members of the volunteer TNA Support Network provide support and information that empowers patients to make informed decisions about their treatment of TN and related facial pain conditions.
Serving as one-on-one support for facial pain patients, families, friends and medical professionals in their area, this vital link further strengthens TNA's ability to provide local information in a timely and accurate fashion.
The Support Network is an important source of help, hope and encouragement to those suffering from TN and related facial pain. Through discussions with fellow patients, our patients learn not only treatment information but how to more effectively cope with the devastating emotional challenges of this incredibly painful disorder."