Dancing with Dementia - Observations of a caregiver (and informative guide for the clueless).
It IS a kind of dance we do, isn't it? Except the music's always changing, our partners keep trying to take the lead, and we're never quite sure of the steps.
A few months ago I was talking with my two SILs ("R" & "L", who ARE clueless) about dementia, and couldn't believe how very little they knew about it and how many misconceptions they both had, especially considering this is a disease their own mother is suffering with. (you'd think they'd at least make a half-a***d effort to learn something about it...?) Although their misconceptions bothered me, what REALLY got to me (and still does) is how blissfully ignorant they both are about the stuff hubs and I deal with day in and day out, week after week, etc. etc. They're always telling us how much they appreciate everything we do for mom, and I'm sure they're sincere, but not necessarily because they appreciate what we actually DO; what they're also saying with those syrupy sweet platitudes is "so glad you're doing it so we don't have to."
To be honest, neither of them are really cut out for this job, so I've pretty much given up resenting them for not pitching in more often. The few times when they have tried "giving us a break" they weren't really all that helpful. What I do still resent though is how their failure to grasp the real picture leads to veiled questions and judgmental remarks. They truly have no idea. I said jokingly to hubs, "I oughta make a list!" He said, "Why don't you?"
So I did. It's a little sad in parts, funny in others, and of course, still a work in progress. I don't know how effective it might actually be toward raising my SILs' awareness, but I figured you guys would enjoy reading it. I imagine you can probably come up with a few "dance steps" of your own to add....in fact I'm counting on it! First, though (because I know you guys will appreciate them) I have to clear up a few of those misconceptions......
- dementia is NOT just another word for Alzheimer's.
- Yes, there ARE meds that can help but they only slow its progress; they don't make it "better".
- Not every person with dementia wanders, and not every one stops recognizing their own family members.
- They don't all revert back to childhood, nor do they all end up spending their final days sitting in their own feces, drooling and staring blankly into space.
Now on to the good stuff...here's where you guys come in.