Living with Alzheimer's - part III

“I don’t have a daughter in America,” says Mum and with a click the international connection is broken.

Holding my cell phone to my ear, I stand, transfixed for a heartbeat and then I howl.

I’ve lost my mother.

 **

She came into the room where I was tucked into bed, waiting.  It looked as if she were floating on a magic carpet, her silky blue sparkly dress swishing along the floor as she moved towards me.  I’d begged her to come for a good night kiss before leaving for the ball and she did.  She always did.

I sighed with pleasure, because even though she’s always beautiful, she looked like a fairy princess tonight, her hair piled high up on her head, pearls around her neck, and the dress like glittering water all the way down from her shoulders to the floor.  It twinkled as she moved and when she sat on the edge of my bed, I saw she’d painted her eyes, her lips and her nails.

“Goodnight, Noony darling,” she whispered in my ear, “sleep tight,” she kisseed me on the right cheek leaving behind that never-to-be-forgotten imprint of Madame Rocha’s perfume.

“Night, night, Mummy.  You look beautiful,” I whispered back, somewhat timid because tomboys weren't supposed to notice nice clothes and things, “You look like a fairy,” I said touching the dress then the sparkling bracelet on her wrist.

She smiled, but before she could reply, Daddy walked in, her knight in shining armor, magnificent in a tuxedo with a blue bowtie.

“Are we ready, darling?  It’s getting late.”

He held out his hand to her, her dashing blue-eyed knight, blew me a kiss and in a swirl of silk and perfume, they were gone.

 **

I wipe my tears and blow my nose.  I know it’s too early to be crying like this.  After all, it’s 2008 and Mum’s only just been diagnosed with Alzheimer’s a year ago.  I call back and Dad picks up.

“Wazzup, Noony?” he teases.

“Hi, Dad.  I called five minutes ago and Mum didn’t recognize me,” I say to the knight in shining armor, perhaps using that little girl voice again.

“Oh, was that you?  She didn’t have Fred in, so she couldn’t hear.”

Relief washes over me like a warm blanket.  Fred, her hearing aid, was to blame for the misunderstanding and all was right with the world again. 

Because, forty years on, she may not be wearing the twinkling blue dress anymore, but she’s still my Mummy and I’m not ready to miss her yet.

Like a fairy princess ...

End of childhood

I left the theatre last night in a bit of a daze.  Carlos and I had gone to see our son, Christian, in a seminal play called “The Other F Word.”  He was incredible in his performance and the play itself – an original, devised play based on true stories – was a revelation.

My immediate reaction to the title was to insert Fuck.  That’s the F word, right?  I totally missed the subtlety of the preceding word, “Other.”  While Fuck plays a very important part in the play, it is not the protagonist (for once!) but occasionally is the catalyst.

Feminism.  That’s what it’s about: a hard look at changes in feminism and women over the past 20 years.  We’re already a long way from the shivering male-dominated women of the past and still moving away. Moving away from the hard-nosed angry feminists who forged their blazing path.  Moving away from the bitter man-hating.  Moving away from burn-your-bras.

Feminism.  Aspects of women and their real life struggles:  women through the eyes of men, women through the eyes of women, women through the eyes of themselves.  Society’s look at women, lesbians, gays, friends, lovers, partners.

Sitting there in the packed black-box theatre, with scores of people turned away at the door, we, the lucky ones, sat mesmerized by the performance.  I was transported to places in my memories, then in my values and finally into my soul.

How we have changed.  How we have evolved.  While I might not agree with some of the trends that are taking place, I can empathize with them all.  It stirred up some long-buried hurts inside me, of events that changed the course of my innocent, idyllic life in Montevideo, Uruguay.

It was the summer of 1973 when I finally caught the eye of the most amazing boy at the swim club.   He was everyone’s jock, everyone’s hero, everyone’s friend.  At four years older than me, he had always been my idol and now that he’d left his long-time older girlfriend, I finally stood a chance.

I knew nothing about dating or boys at the time, but I was determined to learn fast.  He was breathtaking and I hung on his every word.  Summer flew by, long days of swimming, training and competitions.  Great camaraderie and towards the end of summer, in February 1974, I turned 14 and we'd been close almost all summer.

It happened at the farewell summer dance.  We danced, we kissed, and there was beer and smoking.  Those crazy days when cigarettes and drinking had nothing to do with sports.  Exhausted by the heat of the clubhouse, we wandered off down to the rugby fields, far from the noise and chatter. He smoked and drank as we walked and talked, this enormous strong boy and I; and I knew I was in heaven.

It’s dark out where we are, all the floodlights have been switched off and the club is hidden way behind the tall juniper hedges. Then next thing I know, he’s kissing me and pushing me to the ground.  He’s kissing me and rolling on top of me.  His whole mouth is inside mine and without warning, his hand is inside my shirt, under my size nothing bra and I freeze.  I’m not kissing him anymore, I’m screaming, I’m crying, I’m scared.  And I’m squirming.

My insides have turned to jelly and I’m shaking and pushing to get this man off me, who’s twice my size.  He’s jamming his knee between my legs and pushing them apart while he continues to rape my mouth.

Everything inside is screaming STOP!! STOP!!  I don’t know what’s going on and I don’t like what’s happening.  STOP!!

“STOP!!!  Please stop!”  I’m clawing, twisting and heaving to move him off my skinny body.

We’re fully dressed but I feel naked.  I’ve just managed to get his hand out from under my shirt, but he’s panting and slamming his groin into my hips.

“STOP!  Please stop.  I don’t like this!!  What are you doing?  It’s …  not  … r – r -right ...” I’m sobbing now, all of my strength dissolved into tears.

Something has made him stop.

“What?”  He hoists himself up on his hands still pinning me with his hips as he stares at me from above, his head blocking out the night sky.  “Why the hell are you crying?” he grunts.

It’s my chance.  With every ounce of strength I twist and roll, knocking his arm so he topples and I’m out from under him.  I’m still sobbing, but I don’t think I notice at the time because all I can focus on is standing up.  I can’t stand up!  My legs are like Raggedy Anne legs and I seem to have forgotten how to breathe.  My shirt ... torn.

“What the fuck are you whimpering about?” he barks, standing up and brushing off his jeans. 

“I – I … I don’t think … that was … very nice …” I blubber.

“God!  You’re such a baby.  I knew you were a baby.” He hisses straightening his shirt and walking away.

I’m humiliated, but my mother is coming to pick us both up.  I have to catch up with him and we have to leave together.

“Please … please wait,” I gasp, horrified as I watch my idol walk out of my life.  “Please, help me up.”

“Get up, then,” he barks, yanking me by the hand, “God, I can’t believe I’ve wasted my time with such a baby.  We’re done.  Nobody’s ever going to be interested in YOU, I can assure you that.”

He storms off and I follow him, broken, afraid and disgraced.

Christian came back on stage and was crying. His performance was so riveting I forgot he was my son.  This lovely man who'd made us laugh, wrung us out and let us into his world became a broken man, twice jilted who only sought normal.  He was crying and he made me cry. The actor touched my soul.  I cried for him and I cried with him.

I cried for his loss.

I cried for his failed relationships.

I’m crying because his performance for some of us is so real.

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.

Living with Alzheimer's - part I

            

         

          It’s a Friday afternoon in Montevideo, Uruguay.  We’re in the heart of Carrasco, the beautiful neighborhood of town, it’s 35 degrees centigrade outside but it’s cool and busy inside.

There’s electricity in the seven pm air here, while girls and ladies go through their pre-party preparations.  There is a farewell do for one, a fiesta de quince for another two, a wedding, a funeral and a dinner-date.  Most of these parties will start late, probably around 10 or 11.  The funeral must be early Saturday morning.

Hand-held hair dryers turn on and off in a weird concerto of fireless dragons’ breaths.

I brought Mum for the pampering and she’s loving it. I’m sitting in a corner where she can’t see me and she’s already forgotten I was with her.  She’s loving the ambience and every bit of the loud, friendly Uruguayan flavor. Tired and dragging when we arrived, she’s now smiling, interested and quite different to the Mum who walked in half an hour ago.

Alzheimer’s sucks.  No matter which way you look at it, it sucks.  It’s robbed her of her treasured memories, her abilities and worst of all her independence.  So this is a situation where Mum flourishes.  This one-on-one attention with a kind stranger, who poses no threat and puts on no pressures of “Do you remember …” or “Didn’t you know?”  It’s all about her.  The hands are on her, the eyes are on her and it makes the sun come out in Mum’s soul.

With a head full of pink and green curlers, her silver hair shining and twinkling in the salon’s bright lights, she’s lost in the now of herself.  No one judging, no one pushing, no complicated conversation to keep up with.

I revel in these moments, because she finds peace, she can let down the guard, which is constantly up, like a boxer’s fists with a blindfold on.  She never knows where it’s going to come from and sometimes she cuts and jabs into thin air.  Then she realizes … drops her fists and her eyes cloud over, appalled and saddened – she’s done it again.  She knows she’s forgotten something else.

“People should have a ‘use-by-date’” she said today after she dropped her delicious dulce de leche ice cream outside Las Delicias.

“Really?” I said, trying to help and making light of the accident.

She knows.  She’s mortified.

“Yes, a ‘use-by-date’ for silly old people like me,” she said cleaning off the side that had touched the floor.

“I see … and when would yours be?” I asked.

“Tomorrow,” she said with a rueful smile. “I’m such a useless person, una chambona.”

I stroke her hand and look into her eyes, which are focused on the floor, “Look at me,” I whisper, “Look at me, Mummy.” I put my ice cream down to take her face in my hands, slowly, gently so as not to startle her and her hazel green eyes come up to meet my blues, the blue of my father’s eyes, “that’s rubbish and you know it.  You’re fishing for a compliment, aren’t you?  We’re having an adventure, we’re here, thousands of miles away from England – let’s not spoil it with a ‘use-by-date.’ OK?”

The rollers are off and she’s thrilled.  I think she forgotten all about her use-by-date idea, because she stands up, beaming.  She looks terrific and as I walk up to meet her, she smiles, radiating that sunshine which so often is hiding these days.

“I’m ready, Noony!  I’m ready for another adventure.”

Sucks to you Alzheimer's, we're having another adventure and we don't care if you're coming or not.

In case I die ...

My husband was getting ready to leave on a trip to Uruguay and, as he always does, he was plying me with information about “where this was” and “where that was” and “don’t forget to do this with that.”  Routine pre-travel stuff, the bags were packed and since for the last month he’d been making a neat piles of everything, I knew he wouldn’t forget anything.

“So where do you want to be buried?  In Uruguay or shall I fly you back?” I asked.

Silence.

His eyebrows rose and returned to normal.

He pointed to the blue folder, “That’s the paperwork in case the offer on the house comes through.”

“Yes, you told me.  But what about my question?”

We all do it.  We all avoid talking about what happens when we die.  Well, perhaps not all of us, but I think I’m safe in saying the majority of us avoid it.

I was surprised by his silence.

For me it’s a no box, no grave, no enclosing me in anything – just quick cremation and scatter me in a beautiful field.  Laugh and sing for I will be going exactly where I’ve always wanted to be - to heaven.  I don’t mind which field so long as it’s open and has a few wildflowers growing.  I don’t want it to be difficult, I don’t want people coming to a graveyard to weep and then having to endure costs of maintenance.

Because in my earthly life I’ve done so much, seen so much, lived so much – I’ve been happy beyond belief and miserable beyond comprehension and everything in between, but mostly happy.  I don't want you to have to go through the stress of making decisions.

When I die I have an express ticket to heaven (or whatever the travel arrangements are) and my earthly body will have finished its job.  No one need visit the bones.  I’ll be in the hearts of the people who loved me, I’ll be continuing a relationship with the people I loved and no gravestone is going to improve that, no matter how many times Hollywood films it.

“So … my question?” I’m serious, I want to know, because I want to respect my husband's wishes.  He’s good at talking about these subjects and I’m surprised by his hesitation.

He hesitates again and sighs, “Here, I’d like to be here, but, wait ... it’s expensive.  No, leave me there.  Don’t spend any extra money on me.” He says quietly.

“With your parents and your aunt?”

“Yes.  That’s fine.”

It’s about money again, isn’t it?  When the time comes and I know that he’s not where his heart really wants to be, will I have the courage to respect his wishes?  Or will I bring him here?

Perhaps I'll wait for him to come home next week so I can ask him "If money weren't an object, where would you like to be?"  Because I don't think it's fair to ask over email, right?