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It creeps up on you slowly, and slowly people start to back away. They see their own future and it frightens them. This is a lonely journey, only those who have walked in your shoes, with courage and resolve, will come to you.
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We haven't had any friends for a long time, even before we got close to a diagnosis of Mild Cognitive Impairment (cause, probably FTD, based on the ongoing symptoms). That was a year ago and he is much worse now. No family except mine in the next state. He is estranged from all in his family and most of mine. My best friend is three states away but very supportive. We stay in touch through email and phone calls. I have found a caregivers support group that meets weekly and go as often as I can. I have read, watched videos and learned as much as I can about how to deal with issues. I'm trying to be proactive about trying to avoid stress with the spouse as much as possible by trying to figure out his triggers and avoid those situations from coming up. He is still out and about during the day so I have some time to myself. I try to get some exercise, go to activities like health fairs. Even just being around other people helps, making normal casual conversation. I have been trying to keep up with my own health needs...nothing serious, but keep plugging away...getting a hearing aid, mammogram and biopsy, etc. A support group helps. Can you connect with an in-person, telephone or on-line support group for the specific disease you are dealing with? There are lots of them and the other people are full of help and information. There are ways to find others in the same boat you're in, possibly through church, any social groups you still have contact with, the doctors or attorney, the Alzheimer's Association (which also covers other dementias), or the area office of aging. It is surprising how many people you encounter have similar problems. Go ahead and be the first to mention the problem. I mentioned FTD to an EMT who said they had had that in her family. An Audiologist I spoke to told me of knowing someone with Lewy Body. Lots of people are dealing with people with depression, anxiety, hoarding, dementia etc, and most keep it to themselves. Bring it up first and I bet you'll find many people in similar situations who have something to offer. It can be mighty lonely but you have to keep fighting to find ways to meet your needs.
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I probably would have survived without a local support group, but I sure don't know how!
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Forgot to mention, if you don't already have a furry cuddly pet try getting one. Maybe an older rescue animal if you can't deal with a young one. I recommend a dog that the vet has "prescribed" neighborhood walks or trips to the dog park for the animal's benefit. Guess who else would benefit....you the dogwalker. Also having some warm body that loves you back unconditionally is worth something, especially when your spouse is missing in action.
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