Before Peggy was diagnosed, I had never met a person with Alzheimer’s, and so had no idea what to do, what to look out for, nothing. The more I read about frontotemporal dementia (FTD) and Alzheimer’s from Wikipedia, the more alarmed I became, so I looked for as many resources as I could find, and ALZConnected, an online forum hosted by the Alzheimer’s Association, was one of them. (Thanks to my therapist for pointing me to it!) I’m not really a forum kind of person, but being a member there was (and is) so helpful to me.
I used it for so many different things. Such as:
-
asking questions about a range of topics, where I’d describe the situation, what I’d done already that didn’t work, and then ask, What else can I do?
-
listening to other people and learn from their situations
-
offer advice of my own if I thought I had something helpful to say
-
be part of that community, where we all understood what each of us was going through
In terms of the topics that show up on that site—it runs the gamut, from dealing with different varieties of dementia (vascular dementia, Lewy body dementia, FTD, etc.), the different types of incontinence products to use, humor (gallows and otherwise), sharing experiences—just so many different things. And when you’re in the middle of it, posting a question and getting several different responses acts as a lifesaver.
Helpful advice is given in a respectful manner probably 99.9% of the time. People tend to be so careful of others’ feelings. I think the assumption is that we’re all having bad days every day. One example that comes to mind is one of the caregivers wanted to send their person with dementia (PwD) on a plane, on their own, unaccompanied. Everyone who responded said, “do NOT do this”—but said it respectfully.
There are different subfora there as well. If you have dementia yourself there are two subfora: living with Alzheimer’s or some other dementia, and living with early onset Alzheimers. If you are a caregiver, there are a few more options:
-
you’re a caregiver
-
you’re caring for a spouse or partner
-
you’re caring for a parent
-
you’re caring long distance
-
you’ve lost someone to dementia
You’re free to post wherever you want, and many do.
Caregivers on the forum are supporting people with dementia (PwDs) at different points in the seven stages of Alzheimer’s. It often takes a long time to get a diagnosis, so by the time a lot caregivers figure out what’s going on, their PwD may be somewhere in the middle stages. With my sister, we got a diagnosis relatively quickly; in retrospect, she was about half way through Stage 4. Others get a diagnosis even later, so it’s not uncommon for new people on the forum to be caring for PwD who’s gone through seven years or more of mild cognitive impairment, and maybe even most of Stage 4 or even early Stage 5 of Alzheimer’s.
In my time on the forum (2019–present), I’ve seen a lot of people come and go. You can certainly understand why: by the time they’re diagnosed, a PwD may have a life span of less than ten years, and caregivers typically don’t stay around for all that long after that.
I was grateful to find the forum, and I’ve spent a lot of time there asking questions. Even though Peggy’s no longer with us, I’ve stayed there because I want to try to give back to the community that gave me so much. I try to answer questions if I’ve had some kind of relevant experience. I stay silent if I don’t have anything relevant to offer. But you know, sometimes people just want or need to vent, I know I’ve taken advantage of that, so I’m happy to lend an ear.
