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Wednesday, 21 March 2012

Living with Alzheimer's - part II

            There’s an urgent knock as my door and Mum bursts in.  “Wake up, Noony, it’s late,” she whispers.
“Mmm?”  I’m awake, fast as a snoozing dog, “Mum!  Are you OK?”  She’s standing there fully dressed.
“I’m ready.  You wanted me to wake you early,” she says, the anxious little furrow forming above her eyes.
It’s dark outside and the only light comes from her room next door.
“Mum!  It’s half past four in the morning.  What’s going on?”
“What?  I’m not Fredded,” she says pointing to her ear, with rueful smile.
Great, now I’m battling the deafness as well.  God give me strength and patience please. I get up and take her hand, “Mummy, why are you up,” I ask, speaking into to her better ear this time while leading her back to her room.  It’s the beginning of summer in Uruguay where we’ve come to holiday, but she has an electric stove on full blast, it’s boiling hot and lit up like a football field.  All of her belongings are out on the bed, the chair and the floor.
“Oh, Mum …” I choke back my frustration.  This has happened three times already, but never in the middle of the night.
“I’m packing, we’re leaving today,” she says getting a little agitated.
“Mummy, it’s Thursday today,” I say trying to stay soft and soothing when in fact I’m seething.  We talked about it over and over and over at supper, after supper, in bed, after bedtime … I can feel the pressure rise inside, but I push my all-impatient nature to be calm.  “I’m sorry, Mummy, today isn’t Monday, not yet.  We’ll be going home soon, just not today.”
Like a hurt little child, her wrinkled face falls and her eyes cloud over, “Not – going – home?” she asks, sinking onto a pile of socks on her bed.
“No.  Well, yes.  We’re going home, just not today.” I say giving her a quick hug as I start tidying up her clothes.
It happens on a regular basis.  Mixed up days, no sense of the passage of time, a desperate need to clutch at and cling to any thread of normalcy.  I too would be terrified.
“What are you doing?” She asks, wringing her hands, tears in her eyes.
“I’m just putting this aside, Mummy, so we can go back to bed,” I say, stacking piles of folded shirts and sweaters onto the chair which already has clothes on it.
“But I thought we were going today?”
“No, not today,” I’m losing it.  I can feel it and there’s nothing I can do.  I’m holding my breath and holding my temper as I wobble on the edge of the cliff of anger.
“But you told me last night we were leaving in the morning.”
I didn’t!  I didn’t!
“Mum, did you look at your diary today?” as ask through clenched teeth.
“”No, I remembered you told me at supper.”
If you’d looked you’d have seen that it’s not today I scream to myself.  But it’s not her fault she has no idea what day it is, what year it is and if I leave the room for too long, she’s liable to forget which of her three beloved daughters was with her.
“Oh, darling, but it’s still not Monday today,” I sit down beside her, near the pile of folded scarves.
“Be careful,” she says pulling them away.
“I’m sorry,” I mumble.  How am I going to fix this?  The sun’s not up, she’s already slept more than I have and I’m falling apart.
“Sorry Mummy, we’re just going to have to go back to bed.”
“But I’m already up.”
“Yes, I know.  But it’s too early.”
“But I’ve slept enough and I want a cup of tea now.”
“Mum!  I can’t bear it, dammit!  Do what you want then, get your tea and pack your bag … I need to sleep!”  I’m yelling as I storm out of the room.  I hate it!
I hate Alzheimer’s, this monster disease that robs me of my beloved mother and robs her of her dignity and ability to cope.  I know I shouldn’t blow up, I know it’s not her fault.  I know she’s not doing it on purpose … I know, I know, I know.
It’s the end of our three-week holiday here in Uruguay and I’ve been with her every day and every night including times like these where it’s been a 36 hour day and I’m exhausted.  However I also know she’s sitting on her bed, hurt and alone, confused by my anger and misunderstood.  Because I know she just doesn’t understand – it must be like trying to walk through a never ending room filled with candyfloss.  It’s my fault, I’m the adult now.  I’m the one who should have the coping mechanism – but they’re big shoes to fill, a tall order to carry out.
“Oh, please God, help now!” I beg again, under my breath and rattle out the Serenity Prayer after taking a deep, slow breath.
I turn and walk back into her room.  I feel awful when I see her forlorn face and slumped shoulders.  She hasn’t moved and everything shouts hurt.
“Oh, I’m so sorry, Mummy,” I fold her into a big hug.  "I’m so sorry for shouting like that, it’s just that I’m so … so … frustrated and tired.  I love you dearly.”
“No, I’m sorry – I’m always making a mess of things,” she says clutching me, hopeless and helpless.  There are moments when she still knows, I know she knows she’s forgetting.  She knows somehow it’s getting worse and she knows that no matter how hard she tries she’s going to lose it all.
My eyes are filling with tears and the roles are reversed for a magic moment.
“Oh, Noony.  I’m so sorry, I didn’t mean to make you unhappy.”  She whispers, stroking my cheek.
“No, Mum.  It’s not you, silly.  It’s me,” I sniff and wipe my eyes. Quick we need humor.  Now.  “I mean look at us!  The sun’s still not up, the sky is dark and we’ve already acted out two dramatic scenes.  We should be on stage,” I chuckle, “At the Montevideo Players!”
“That would be nice,” she says laughing, “I,” she says adopting the affected accent, “shall be the posh Lady … my hand-baaa – aa – aag?” she puts out her hand, waiting.
I pass it to her with a grin, “Lady Bracknell, how lovely of you to come by.”
“Yes, it’s perfectly lovely.  Such a treat, but, my dear, what a looo-ooong drive.”
“How nice that you could spend the night too,” I bow and she curtsies, yep, this is how fast it can be turned around if I don’t lose my temper, “You must be tired.”
“Oh, yes.  Actually I am rather tired.  Perhaps you could show me to my room, I think I should lie down for a while.”
“Certainly, Lady Bracknell.”
She lies down on the bed, fully dressed.  I cover her lightly, after all it’s still like a sauna in here.
“I think I shall close my eyes for a few minutes, will that be alright?” she says, still playing her part.
“Certainly, I’ll have someone bring you a tray later on.”
I pat the covers and stroke her cheek this time.  Like a fractious child she’s sleeping again, so turn off the light and by moonlight I tiptoe round putting everything back in drawers and on shelves, hiding her suitcase away so perhaps, just maybe in a few hours when she wakes again, she’ll not remember this incident.  I never know.  It’s so random what stays and what gets forgotten.  I love you Mummy, I wouldn't have missed this for the world.
At last when everything is ship-shape again, I blow her a kiss, creep back to my little room and collapse on the bed in the hope I’ll catch some sleep … if only the damn dog next door would stop barking.


  1. I've been there, and my heart goes out to you both. Wish I could give you a hug.

  2. You're doing brilliantly, stay strong. Big ether hugs to you, xxxoooxxx


Unless otherwise noted, all articles are written by Cath Rathbone. (Copyright Catherine (Cath) Rathbone and Noony Brown)