Quesadillas and a Mariah Carey Christmas - oh my.

Hey all,

Well, energized by my very first supporters (and my first comment - shout out to Bethy!!) I had a fairly productive day. One, it was sunny, which helped a lot. Two, I started the day off with a long walk, which helped as well. Did some grocery shopping, a little cooking for the next few meals. I then decided to give my Mum a visit, as I haven't seen her in about a week.

A few things about my Mum. Well, despite the fact that she's always been an amazing mother... also kind, articulate, and gorgeous. My Mum has early-onset Alzheimers, and lives in a care facility. I did make mention of this a few posts ago, as those of you who have read on may know. Mum was diagnosed around ten years ago, at age 55. I moved in and lived with her / cared for her until about five years ago, when she moved to the place where she is now. I love the care home in which she lives - the staff are wonderful, she gets great care, and she appears to like it there. I love visiting her. I know! It seems really depressing, and yes, the *idea* of her being sick is depressing, but good public care homes can be pretty fun places in which to hang. It helps that these days, it feels to be juuuust about my pace. Mum lives on the unit with about seven other ladies - the eight of them are in the last "stages" of Alzheimers, meaning they generally can't feed themselves, chew food, walk, talk, nor any other care you could imagine. They are... trapped inside their minds, and because their minds control their bodies, their bodies slowly go as well.

Sounds sad, yes. Is sad, yes. But these women are just as alive as anyone walking around these streets. The newest member lives with Downs Syndrome *and* Early Onset Alzheimers, which I naively had never thought possible. Why? I'd never seen it. That realization was a lesson for me, actually. Just because i haven't seen it doesn't mean it doesn't exist! Yes... Life Basics 101. Anyhoo. The only explanation I have for this woman's situation? Shitty fucking luck. Seriously. This woman is warm, smiley, and loves to give hugs and kisses on the cheeks. She also likes to steal everyone else's juice. I like her - she brings a bit of sunshine to the place. Another one of the women never opens her eyes, but I think she's more aware than people could make her out to be. She's super easy to feed (ie - she lets me feed her without pushing me away), but her body is always shaking and quivering, so I've been known to drop food on her -- after all people, I am NOT a professional.

One day, I was knitting, and one of my favourite, quiet ladies was sitting there, very slowly moving her hands as though she too was knitting. I was just a beginner at the time, and I'm convinced there was a former-knitter side of her trying to show me what the hell I kept doing wrong. Which was a lot. I was probably butchering that piece in front of her poor, experienced eyes! At the time I remember desperately wishing she could speak so I could ask her how to K2Tog. Lastly, there's the Portuguese lady who speaks (apparently gibberish English mixed with) Portuguese, but went into overdrive when she saw the tattoo of a sacred heart on my leg. She kept touching it and putting her hands in the prayer position.

Speaking of Christ (how's that for a segue?)-- one downside to the care home is that around this time of year, it's all Christmas tunes, all the time. I keep envisioning my mother: quiet, kind demeanor on the outside, inwardly screaming for someone to turn off the fucking Mariah Carey "Santa Baby" that was playing for I'm sure the fortieth time that day.

I like to visit at dinnertime (4:30. Kinda brings new meaning to "Early Bird Special"). It gives me something to do whilst talking to Mum, which makes things feel a bit more two-sided. I also generally feed the person on the other side of Mum at the same time, because they only have two care attendants, and dinner can be a bit of a production; Between the juice-bandit, the woman who LOVES to tip over any cup you give her (generally into her mashed potatoes) and my mother, who is always, always, the last person to finish. Actually, my mother was always the last person at the table to finish her meal, so I think some things never change.

This evening was a treat - Quesadillas! Rather, pureed quesadilla innards (and pureed three bean and corn salad) for the chokers and those with no teeth, and a non-pureed meal for my mother, who still has all her teeth and the ability to chew and swallow. That's one of the last functions people with Alzheimers will lose. Mum's kind of in between, so usually Mum's meal will be whole-ish food, covered in either gravy, or soup, to soften it up. For the record, if I get older and unable to feed myself, please pour gravy or cheese sauce over everything I eat. I would like to go out fat and happy. Since there was no gravy or soup, Mum and I had to muddle through whole food, which took about an hour, and involved me making a complete mess of her.

That's the only thing I don't like about feeding Mum... when she has food on her mouth and down her front, it reminds me of the lack of dignity in disease and dying. You know how we get embarassed if we're around people and find out there was a big chunk of spinach in our teeth? Or maybe half our lunch staining the front of our shirt? Well, imagine if you couldn't control that, or everyone saw it, but you didn't realize it. I always make sure before I go that Mum has a wiped clean face and no corn kernels in her lap.

I feel like this may be an opportunity to kind of cover the whole "mother has Alzheimers", "I used to take care of her", "she's really damned young" and "wow. that must be really hard" aspect of things. Mostly because I would like to be able to write about other experiences that may need a little pre-explaining.

Alzheimers. Well, there's a bitch of a disease. First you lose memory function, then the ability to do tasks, speak, and so on, until you're left with instinctive functioning like taking in food fed to you and excreting. It is, quite literally, the only disease that kind of... anti-ages a person. It's all very Benjamin Button, only without the heartwarming bits. The person is left in baby form - can't walk, talk - just eating and pooping. Sorry to be blunt, but life is rather blunt, isn't it?

Fun fact - of the diagnosed Alzheimers "cases" (read: PEOPLE) out there, 95% have Alzheimers, and 5% have "Early Onset Alzheimers (EOA)" - which is defined by its distinctive genes, and the fact that it hits people before the age of 65. It has been generally assumed that Mum has EOA, as she showed symptoms from 55 onward, and went downhill quite rapidly, which is not generally the case with "regular" Alzheimers. Here's the wrinkle. EOA is highly, HIGHLY genetic. 50% of offspring will get it. Other parent not a factor... 50% of the offspring WILL inherit the disease. Soooo what. Do my sister and I flip a coin?

For the record, the worst part of all this is *no one told me* this fact. I had to learn it from a damned episode of Grey's Anatomy. You know - Merideth and her Mum... Derek desperately trying to find a cure, yada yada yada, wank wank wank. Yeah. Where's MY fucking Derek?

I feel as though I'm getting off topic here. I did freak out and call my sister, who has a PhD in the sciences therefore she's my on-call Bill Nye. And basically my best friend and twin, though we are five years apart. She assured me that because Mum didn't *appear* to inherit the disease, that we should be okay in regards to the 50% inheritance rate, but that she did, as well as me, think about the genetic testing that tells you whether or not you carry the gene. We both nixed that idea immediately. Her words were comforting, though I, and I know my sister, can't help but think about the contradiction. It's either regular 95% of the time Alzheimers and Mum has some rare, undiscovered form, or she has EOA which fits the profile, and she was just... the first one in the line to get it. After all, even inherited diseases have to start somewhere, don't they?

I'd just like to pause here for a moment and say: WELCOME TO MY HEAD.

So that's the Alzheimers story. i guess the reason I wanted to blurt it all out (besides the fact that I like to think that if I did, maybe I'd stop thinking about it as much) is because I would like to address some time the idea of Caregiver Burnout. A very real occurence that I think explains a lot in our society.

Well! Woosh! That was a long rant! I think I'm going to make a drink and watch an episode of "Intervention", that should lift my spirits...

(PS - That was sarcasm)

Thanks for reading - to whoever may have actually made it through this tedious diatribe. For the record, I always wanted to write something that made me sound smart - like the phrase "tedious diatribe". Now I just feel pretentious. And kinda dirty.

Lots of Love out there to you -- PS