What living with dementia is really like.
I don't often utilize the caregiving help and community support that can be found online. Not that it isn't valuable, but I have my sister, and we have our own two-person support group every couple of weeks involving copious amounts of wine and words flying out of our face holes as fast as we can think of 'em. By the end of the night (and the bottles), we've usually figured out sloppy solutions to current problems or spilled our guts to an extent that alleviates the need for support internet strangers would otherwise offer. But there is the occasion when I've sought advice from the forums (turns out the poop thing is not all that uncommon!), or checked out other caregiver blogs to see how they're dealing with... you know, all this, and I've come across two blogs that closely mirror our experiences with Mom.
Molly has Lewy Body dementia. Her son Joey began making videos of his mother in January of 2017. Each video is approximately 20 minutes long and usually begins with Joey giving a brief update on Molly's current condition. If you want to know what our Mom's day-to-day life is really like pick any one of these videos to watch. Mom has less anxiety than Molly, and certainly less tears, but the confusion, the flashes of agitation that blindside you when you're in the midst of a good day, the empty gaze and skewed perception, or complete lack thereof, is all so similar.
What I get most out of Molly's Movement is Joey's interaction with his mom; his patience as he tries to calm Molly down, his light-hardheartedness and humor when he and Molly are moving through their day, and how I can sense that he, like us, measures/weighs his reactions to Molly's moods to ensure that he is, at all times, giving her the best of him. After I watch a video, I wanna take a six-pack of beer over to his house, flop down on his couch and say "I know, right?"
As a former assistant editor for network television I also want to edit it all down, add b-roll, color correct, and fix sound, but I stomp down my industry instincts! Molly's Movement illustrates what it's really like to live with dementia, from both the caregiver and patient perspective - an invaluable resource that doesn't require an editor's touch to get the point across (although I'd be really good at it).
I love Life with Ma! I love that the overwhelming sense I get from these blog posts is "Hey, it's just another ordinary day with Ma who happens to have dementia!" There's caregiver concern and apprehension about the progression, but there's also a refreshing lack of tragic narrative throughout the stories - something I crave when reading other peoples journey. Of course there's tragedy with this disease - dementia stories always end with somebody dying and it's usually the person you think, but if I dwell on that I can't make it through my day effectively, and Dilly, Ma's daughter-in-law who writes the posts, reflects a positivity and a... I don't know how else to put it... a dementia normalcy to their lives. It helps bolster my own feeling that while this disease isn't fun, it's also nothing to be frightened of, nothing to run away from, something to open your eyes wide to, strap on the patience feedbag ('cause you're gonna eat a lot of it!) and just get the job done.
P.S.
When I do need outside tips and advice, these three sites always have answers. I've learned that there's not a question I have that someone else hasn't asked on a forum, and about 1,000 people have answered!
Alzheimer's Association (hugely informative)
ALZ Connected (a section of the Alzheimer's Association site with a terrific forum)
Aging Care (another great forum)
If you have online sites you can't get by without, do tell! I'm always on the lookout for a lifeline when I'm drowning.