Tuesday, 7 April 2009

Have you seen her...?

We sat together opening the cards. It was a celebration. 25 years since we wed.

For both of us a second chance at happiness and we were. Deliriously so. All the sadness of past relationships forgotten in the pure joy of being together. Sure, there were the usual problems with a whole bunch of kids in their teens to keep life interesting, but we coped together. Shared the troubles and halved the problems. We built a huge happy family that saw no steps or in-laws. They were all siblings, all our children, all one unit.

Learning about sex again in our late forties was unbelievable. To rediscover the pleasure of intimacy after so many cold unfeeling years was a delight. To rejoice in our own nakedness without the precluding barriers of young children in the house. We made love with as much gusto as we embraced all the other bonuses of being able to retire early. We travelled and saw the world together. Beginning every new day in each other's arms and finishing it the same way, normally after a few glasses of wine and a good meal with friends or just chez nous.

We watched our children have their own offspring. We babysat, we refereed, we guided, we bankrolled and we loved for so many years.

And all the time it was happening, slowly eating away at her. Imperceptibly at first. She would forget things - the names of new friends or arrangements - or need help to complete a job. I laughed and began to assist her with various household duties. I loved her, it was no chore to me so I gradually took on more and more and allowed her to be the socialite. The sound of her laughter was the finest music to my ears. The sight of her smiling face better than any priceless painting.

Until the time I realised that she was unable to do even the simplest thing like make herself a cup of coffee. The specialists said it was premature dementia and unusual in one so young but there were medications to alleviate the problems and allay the furtherance of the disease.

It was only when I saw the brain scan that I realised the extent of the damage. Whole chunks of her brain seemed to have disappeared and been replaced by fluid. The prognosis was not good but the drugs were working and preserving what remained. It didn't really matter too much because I could do most things for her, choosing her outfits so that everything still matched, helping her to put things on the right way round. All she had to do was sit and chat and smile and just be... her.

I know they were all very worried as she deteriorated further but I wouldn't even consider taking the action they hinted at. She was my wife, my love and I would care for her. 24/7 if necessary... and, of course, it was. For seven years, I wrapped her up in my love and did it all until the specialists insisted that, for the sake of my own health, the only choice was full-time care.

So, now, every evening I sit on my own. It's funny but, with all the people I know, I've become such a lonely man. As it says in the song, 'I thought I had the future in the palm of my hand', only to find it ripped away progressively with the venom of the cruellest of maladies.

I visited her every day and watched her slow descent towards the inevitable, the increasingly violent frustration in her once so gentle nature. I would interrogate the family after visits: 'Have you seen her? How did she seem?'

I noted every stage, each face, each song she no longer recognised, even ones from her past. Those memories were the last to go until she no longer recognised her own children - even from photographs when they were babies - and did not tap her toe to a once familiar and much-loved tune.

But, even on that morning, she still turned her head at the sound of my voice and put her cheek up for a kiss. Her eyes seemed the same in her thin face. I searched for recognition but the expression was vacant. And yet, surely just that movement towards my cheery hello must signify that some tiny part of her still knows me.

So we sat as I opened the cards... our cards... and showed them to a non-comprehending stranger. Tears blurring my eyes and all fingers and thumbs in my sadness. People had chosen carefully in their remembrance. No flowery language wishing us a wonderful future together for there was none and, for her, now there was not even a past.

There is only the present, institutionalised and sterile.

Without her I feel so lost and my own future remains on hold whilst I look for any sign of 'her' within that blank stare. For as long as even the flicker of her ghost remains trapped within, I have to come.

I know they all think I should stop visiting and begin to put my life back together but everywhere I go, whatever I do, I see her face, hear her laughter and it breaks me up that she's no longer there with me. I know I can't hide from the memories, although day after day I've tried. I don't want their comfort for it just emphasises my loss. I drink alone, I live my solitary life in stasis - neither divorced nor a widower.

I keep saying to myself 'She'll be back' but each time I know again that I've lied for this is the living death that is Alzheimers. There are no more drugs, we have had the last false dawn.

We exist in this half-life awaiting the final liberating stroke that will allow us all to mourn her loss properly and still I berate myself when I wish for her merciful release before the day finally arrives when I can no longer see her.


Anonymous said...

damn thats sad right there.

BenefitScroungingScum said...

Absolutely heartbreaking. BG x

Fat Controller said...

I will print this out, keep it in a safe place and read it every so often to remind me, whenever I feel like being spiteful or petty or small-minded, that what we have now is fragile and transient and to make the most of it while it lasts.

Dark Side said...

That has just made me weep buckets while reading it and I have to admit it is one of my greatest fears either for myself or my family..xx

CHEF TROLL said...

Absent the tears, my reaction was the same as Dark Side's.

Polar said...

FC has again caused me to think...and possible follow the same action.

A similar feeling over-takes me when I see the Solitary Swan, while up at work.

My wish for you,Cake, is to NOT be that swan, but part of a Vibrant Pair!!!

Dazza said...

Super sad, but so beautifully written...


nitebyrd said...


justme said...

So sad :( ......

Karl said...

Good afternoon Having My Cake,

So touching.

Shame to all, that would deny them both release.

Mr. Nighttime said...

While working as a paramedic for all those years, I would watch in horror, time and time again the scene you described played out with so many patients. As horrible as it is for the patient, I am thoroughly convinced it is worse for the caregiver, the person who has to sit by and watch the person they know and love die by degrees.

I also remember seeing it happen to my next door neighbor while still living in NYC, while all his wife could do is be a bystander to her husband's slow descent.

If ever I am diagnosed with dementia, Alzheimer's, what-have-you, I will not allow myself to let it get that far. I will spare my wife the horror of seeing me go like that. She already had to endure my almost dying 12 years ago. She doesn't need to go through that again.

Akrazael said...

When my brother passed from cancer, the last debilitating effect was the dementia. He slipped into what we lovingly referred to as his second childhood. He had been a carpenter all of his life, and it was not lost on us that in his final days, he would walk the house pointing out things that needed fixing, imagining he was in places long removed from the here and now. We could have been sad, we could have been lonely for him. Instead, we chose to celebrate this new part of his life. We were new friends to him, and he was our heart.

Years have passed since those days, and while I miss him, I will forever be grateful that when choosing his life-path, he believed us to be trustworthy enough to allow him the freedom to go where he needed...if only in the comfort of the recesses of his mind.

Excellent post, Cake.

Anonymous said...

My mother is leaving us in this same, slow way. On a good day, she remembers who my father is. She doesn't remember me.

But it's not about me, it's about her. What's important is that she is cared for, comfortable and content. She is still visited regularly by kind-faced people she can't place and doesn't have much to say.

I was going to give her an LCD picture frame pre-programmed with a slide show of her loving family, but I couldn't decide if that would be comforting or frustrating.