Sunday, February 28, 2010

Who's Next?

People don’t talk about Alzheimer’s as a spectrum disorder.

I think we should.

Like a lot of disorders, there are good days and not so good days, we’re in the middle of one of the latter. Fortunately the children are at school and all other adults are otherwise occupied away from home, so it’s just me and Nonna.

She’s having a tough time so I scale down my ‘to do’ list to one single item – produce supper for 8 people. It proves to be a tall order as Nonna is restless, a condition exacerbated by several liters of espresso. It can be difficult to take charge in such situations but I decided to be ruthless at ten in the morning – when the last coffee bean was crushed and consumed, I lied boldly – ‘we’ve run out – no more until I’ve been to the shops.’ After that I’m in the dog-house, although I’m really in the kitchen.

I chop in the kitchen, onions, four pounds, in preparation for something or other, as I’ve not had a moment to formulate anything vaguely resembling a recipe.

We’re run through the usual list of repeats several times – the inventory of household members, the date, the whereabouts of pets, their names and ages, what I am doing currently, why I am doing it and how I am doing it. We’ve searched for all the usual suspects, glasses, sunglasses, reading glasses, handkerchief, book, remote control, pills – many and various, as well as a whole miscellany of other items too numerous to list. As I dump onion skins in the compost bin on the window sill, I feel a presence close by – you know who. I speed up and brace myself because if my productivity gives out today we’ll all starve. I chop faster as my shoulders rise to my ear lobes. Damn her rheumy eyes – go away and come back in five minutes – but bless her cotton socks. I don’t know how to play this game, a newbie, drowning, but I have to stay afloat, play it by ear, for both of us.

I wait for the question and wonder which one it will be? I can more or less guarantee it will be ‘wot about dis den?’ without any other clues. I try to swallow my ire and breathe deeply to find a tiny kernel of energy reserves, otherwise known as patience, but the silence endures.

I’m ready.

I turn to see her behind me and suddenly I see her – she’s at a distance of about six feet, a polite distance. I recognize that woman. It’s the woman on her best behavior, I’ve seen her many times before, mostly when we have guests or visitors. It’s her, ‘I’m a dear, sweet, innocent, old lady,’ act, the one she uses for strangers. I feel my face tighten and eyes prick. We all do it sometimes, pretend to be something we’re not – she’s had more practice than most, a magnificent master class graduate. She hovers with uncertainty, wearing a courteous half smile, standing demurely with one hand holding the other. It’s an affectation I’m all too familiar with. I try to think of something to say to the woman, something in code that won’t startle her. I smile at her cautiously and she flutters back, “ello.” I put down the knife gently on the board, as we have already said “good morning” approximately 50 times. I try and think of something neutral, “would you like a cup of coffee?”
“Ooo thank you. Dat would be nice.” She doesn’t advance or retreat, holds her ground, rallying, as she asks, “do you like coffee?”
“I do. I’ll make one for us both shall I?”
“Ooo lovely.”
Her diction is sharp as she fakes an English accent, copy cat to blend in.
As I move ten feet to the right she takes a tentative step forward to ask, “you like it ‘ere?”
“Oh yes. I do. Very much. Always sunny in California,” I add with a wave out the window. Her eyes follow as she mutters under her breath, ‘California.’
The espresso machine is noisy but I watch her floundering as I drown and I wrack my brain to ease the pain and hunt for the trip switch to get her back on track. Her finger tips dance on the edge of the kitchen counter, “so…I like it ‘ere,…I tink I ‘ave been ‘ere before?” she asks nervously and I see her eyes flick over my face to check, coz she’s sharp and if I give her a minute she’ll click into place.
“Yes, it’s a home from home really. After all, you’ve been coming here for twelve years,” I bellow. I see a little shudder rattle through her, nothing to do with the sound level as her eyes widen in disbelief. I need to give her a toe-hold, something not too obvious. While I back pedal, thinking, she’s pro-active, “it’s a lovely ‘ouse dis.”
“Yes, it is.”
“And big!”
“Very big, just right for all eight of us.”
If her eyes get any bigger they might just pop out. I skip the toe-hold and opt for the leg-up, “Mike will be home soon,” I lie.
“Mike…”
“Michael, your son, my husband.”
“So…you’re happily…married now…for ‘ow long?”
“Fifteen years.”
“As long as dat…”
“Long enough to have three children, your grandchildren.”
“Children…”
I point to the photo of her favorite grand-daughter, the one she hates because it makes her look older, a pre-teen instead of sweet innocent. The façade falls away as her face formulates a frown. Bingo!
“Ooo I ‘ate’ dat one, it’s an ‘orrible picture.”

15 comments:

Jazz said...

How do you do it? I am in awe.

graceunderautism said...

Oh Maddy....

Niksmom said...

Oh Maddy, I'm so sorry it's getting so much more difficult. I remember watching this with my grandfather when my dad's parents lived with us. Heartbreaking.

Wish I had something more to offer than compassionate understanding and hugs.

Almost American said...

It is most definitely a spectrum - but I tend to think of individuals other spectrums as being more fixed. Someone with Alzheimer's on the other end always enters the spectrum at the mild end and moves inexorably towards the extreme end, albeit with moments when they mark time or even briefly move back to a more coherent self.

Anyway, as Jazz said, how do you do it? I only ever had to deal with my MIL on a part-time basis as she didn't live with us, and it was still hard!

Jayne said...

Yep, it's growing in reverse, is how it was perfectly explained to us when we began our nursing.
(((hugs)))

Joker the Lurcher said...

my mum died in 2000 after having alzheimers for many years. there is something very cruel about the disease - she would have hated how she ended up.

but looking on the bright side, isn't parenting autistic children the perfect training for dealing with demented people? we get so good at answering the same question hundreds of times we barely notice it!

Anne said...

Maddy, I wish you continued strength.

Patois said...

You are so damn right on considering it on the spectrum.

Your weaving of this tale -- even giving me all of the inner mal thoughts you have -- is amazing. Like, Jazz, I am in awe of what you are capable of doing, day in and day out.

MOM-NOS said...

We're living two spectrums at once in this house, too. My dad (diagnosis just "dementia" at this point) is at the mild(ish) end right now, but the changes seem to come more rapidly as time passes.

I have to agree that Bud's autism has prepared my mom and me well. So many of the same strategies work with both.

Joeymom said...

Sending lots of hugs. And perhaps some coffee?

buffalodick said...

I've seen the results of that, watching the individual who taught me a great deal of what I know today, forget who his wife was..before he died..

TheRextras said...

Hoping the squeeze on my heart stops soon. But enough about me.

I suppose my compliments on your ability to convey the your life with Nonna are little more that a moment of distraction. But sincerely, your capture in this post is remarkable.

Praying for Nonna. And you.
Barbara

Tanya @ TeenAutism said...

I agree about the spectrum issue - different, but definitely related. Thinking of you, sending love.

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Melissa said...

Its takes a special person, a lot of care and patience to deal with Alzheimer's. You are truly amazing!!!!