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.
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- may avoid eating something they don't like by pocketing it and then waiting for the right moment (when you're not looking) to spit it out...sometimes into a napkin, sometimes directly into the hand. If there's a dog nearby (real OR imagined) the partially masticated morsel will likely be slid under the table and offered as a "treat". Otherwise it will likely end up in a pocket, or up a sleeve, or stuffed under the plate.
On any given day while caring for someone with dementia you may find yourself coping with an individual who....
- forgets what was said or done yesterday/this morning/five minutes ago...BUT can somehow remember a mistake you made 6 weeks/months/years ago and delight in reminding you about it....repeatedly.
- is constantly getting mixed up over what day of the week it is, what month, what season, what decade....
- believes stuff happened that never did (and can't be convinced otherwise)
- might sometimes see people, objects, and/or animals that aren't there
- repeats the same stories, or phrases, or questions over and over....and over.....
- can't follow simple 3 or 4 step directions - even when they're written out
- needs said directions repeated to them for the umpteenth time because they've forgotten them again and either lost the paper you wrote them out on, spilled something on it, or "somebody took it"
- can be lucid and alert one day/hour and lost in a fog the next
- can be stubborn and belligerent one minute and meek and compliant the next
- can be "wired" one minute and falling asleep in their chair the next
- may no longer be able open a soda can for themselves
- may no longer be able to DRESS themselves
- may no longer be able to WIPE themselves
- can move so slowly sometimes that it's agonizing to watch
- can take 30 minutes just to nibble through half a bologna sandwich
- needs their pancakes cut up for them...and then insists upon pouring their own syrup and pours WAY too much...and then doesn't want to eat them any more because "now they're too soggy"
- INSISTS you took something from them (or moved it) when you didn't
- has to have the TV on constantly...full volume
- keeps talking about all the things they're gonna do when they "get better"....and has no idea your heart is breaking with every word
- can no longer control their bladder and/or bowels and therefore needs to wear adult diapers and keep waterproof pads on their bed....but insists that they don't, and continues to soil their clothes and bed linens anyway
- can sometimes refuse to wear any undergarments at all....or clothes
- comes to rely upon you for almost everything, yet claims they can "get along just fine" without you...and then gets annoyed, or angry, or sad when you have to go run an errand, or just try to "get away" for a while
- sleeps half the day away and then gets up at 2 am and putters for 3-5 hrs
- is constantly "fixing" and "organizing", yet never really accomplishing a thing
- talks on and on about things that happened long ago as if they just happened yesterday...and keeps changing the stories
- can no longer be relied upon to provide a complete, accurate explanation as to how, why, or when something happened...so don't ask. Just accept, clean up the mess, and move on
- no longer possesses the insight or self awareness to realize there are things they just can't do anymore so they continue to try....and fail...and try again...and fail again.....and then place the blame for their failures on anything and everything else but themselves..."that pen is broken"..."this fork doesn't have any points on it"..."those directions are wrong"..."these peas are too slippery" (hand to God, she really said that!)
- can make you laugh, cry, and want to tear your hair out all within a space of thirty minutes.