It's not easy being dementia...but there are folks out there to help 'cause they're stuck in the muck too.
Kermit the Frog was right, it's not easy being dementia. It's a bewildering bit of business for all of us. Our dementia folks are completely confounded and we too are utterly stupefied as we try to make sense of it all. And it's a hella lot of isolation for us both.
We family caregivers have chosen to accompany our loved ones on a very difficult journey. Pat yourself on the back because not everyone will do that. The downside is...
...maybe nobody else has shown up for you and your dementia person? The doctor didn't provide resources? You don't know anyone who is, or has already, traversed this terrain?
We've all been there, so I'm here to tell you care warriors that you and your dementia charge rolling solo on the battle field can find camaraderie and support just a tip-tap away because, unfortunately, you are not alone.
Alzheimer's Association & Alzconnected
Alzheimer's Association offers a 24/7 Helpline (800.272.3900), a Support Group locator (both virtual and in-person meetings), and an avalanche of information on the dementias.
Alzconnected is the Alzheimer's Association forum where you can ask any question and offer up your own solutions to other people's queries. This was my go-to resource during Mom's journey and reinforced how "not alone" I was on this journey.
Alzheimer's Society is the UK version of Alzheimer's Association, and Dementia Talking Point is the equivalent to Alzconnected in the U.S.
Reddit r/Alzheimers & r/Dementia
There are several caregiver specific threads on Reddit - the two I found most helpful are r/Alzheimers and r/Dementia
Facebook Groups
There are so many FB groups available to build your caregiver support system that I can't come close to listing them all. Here's the ones I use most frequently:
I find FB groups to be better for empathy, and forums more informative when I have specific questions, but both are populated by family caregivers ready to give you a helping hand.
TikTok
News to me that TikTok has a huge dementia caregiver community! There are tons of dementia tips and experience vids being shared to let you know you are one of millions seeking, finding, and giving guidance!
Use #dementia to find TikTokkers who are speaking your caregiver language, and here's a few to get you started. Hell, even our dementia rockstar, Teepa Snow, is on it!
@teepasnow
@dementia_nan
@momofmymom
@dementia_careblazers
@winewomenanddementiadoc (I'm new to TikTok and would appreciate a Follow!)
Instagram and TikTok have a lot of overlap, so if you find yourself digging a content creator, but not the platform you're seeing them on, check if they are hitting other social media platforms you find more intuitive.
Some of my favs:
@lifewithgrams
@alz_about_roochie
@iamacarewarrior
@iamgertrudejordan
When I'm not utterly sucked into doom scrolling (ugh on me) my favorite accounts to follow on Twitter are those people living with dementia who are sharing the day-to-day realities of the disease. It gave me great insight as to what Mom might be experiencing.
@JaniceSwink
@WendyPMitchell
@TommyTommytee18
Blogs/Podcasts
Currently I've gone face first into indie film distribution blogs and podcasts! But caregiver lifesavers for me when Mom was alive and kicking (me in the butt) are:
Caregiving.com (an avalanche of articles/podcasts/blog posts on every topic of caregiving like personal stories, financial advice, navigating the end-of-life experience)
Daughterhood the Podcast (a plethora of all types of caregiver issues for dementia carers and more, with top professionals in their fields)
AlzAuthors Blog (plus an amazing library of dementia literature from true life experience to fiction)
Rodger That Podcast (husband and wife team of dementia caregivers hosting experts to share the skinny on caregiving)
The Reluctant Carer (a new blog for me, I dig his wry sense of caregiver humor)
"...care giver isolation is the death knell to good care."
Okay, it was me. Not so smart and it was early on in the journey before I really understood how rocky this road was going get. But it rang true throughout our end-of-life years with Mom. So, if you find yourself going it alone - Don't! If you are feeling abandoned check out the resources above. They might be just what you need, or may lead you to others that rock your caregiver world, give you and your dementia person the support you deserve, and build your caregiver confidence as you in turn help others in need.