One of the projects I'm urging our Alzheimer's Association chapter to start is a mentoring program for the caregivers. When someone contacts them and/or attends a support group, they would be paired up with an experienced caregiver for a one-on-one relationship. We haven't got this off the ground yet, but I'm curious to see what the members here think of this idea. This is something I would have wanted from day one. I was able to hire people in all other areas to help me take over what my husband had formerly done and deal with this new life--accountant, investment advisor, handyman, disability consultant--the list goes on and on--but a caregiver mentor was the thing I would most liked to have.
What an amazing idea! It would be like taking one of our experienced online spouses and pairing them with a newly dx'd caregiver. Best of luck with your undertaking!
That's the idea, Susan. For some reason (age?, lack of time?, lack of initiative?, being overwhelmed?) it has been my experience that many spouses just don't turn to the Internet for help. Plus, even someone like me who loves the Internet and this site--it took me several years to seek it out and find it. Probably the time I would have need the support most was right at dx and several years following.
Great idea, Marilyn. I think I will bring this up during my FTD support group meeting this week. I know I would have benefited from a program like this.
To elaborate on my thoughts--the current model of, generally, a once a month support group for dementia caregivers just isn't enough. Sure, it's better than nothing, and may suffice for other conditions and diseases. However, especially at the beginning, being a dementia caregiver turns your whole world upsidedown. You have to get on the path to acceptance, while dealing with changes to virtually every phase of your life. So I'm thinking that an individual mentor, in addition to support group attendance, could really be an asset. It wouldn't necessarily have to be run by the Alzheimer's Association (but it would be good to have their involvement perhaps for training of the mentors, oversight). I could see a nonprofit running it, possibly in connection with a charity organization, or a memory center or university program that treats dementia patients.
I'm already doing this, informally, with someone I met on this website. Her husband is not as far along in the disease as mine, I hope I can make the journey a little better for her, helping her avoid some of the problems I faced.