Memories From Beyond Dementia

It’s my mother’s birthday today.  My parents are both, for just a few short weeks, 92 years old.  In another six weeks my dad will turn 93 and will once again be a year older than my mum.   They both have dementia.  Mum’s Alzheimer’s has robbed her of almost everything except a gap-toothed recognition of her husband and two sons, and fragments of her sense of humour.  Doubly incontinent and unable to do anything for herself, this formerly elegant and highly intelligent woman cannot even be described as a shadow of her former self.  At best, once in a while, I see that shadow flicker but the rest of the time she is vacant; a human shape taking up three-dimensional space – literally, a waste of space.

Dad’s vascular dementia presents differently: profound and almost total aphasia.  He can neither understand the words said to him nor use words to express himself.  The links between concepts and their expression has been utterly broken.  True, words sometimes come, but they’re always the wrong ones.  “I’m saying all the right words, but not necessarily in the right order.”  He used to love Eric and Ernie.  Perhaps it is his unbearable frustration at being unable to communicate which has turned a formerly placid and easy-going man, one who never raised his hand or voice to either of his extremely trying sons, into a man who barricades his room against the carers, threatens them with his comb, sometimes refuses personal care, and can be unbearably rude to those who still love him.

The flat they bought fifteen years ago, hoping to see them through to the end, has to be sold if they are to remain in the excellent, but eye-wateringly expensive, care home where they live.  So I drive to London every weekend to make a start on clearing it.  It’s cold and musty, and the familiar smells of my mother’s cooking have long gone.

My father is a dreadful hoarder.  The flat contains the accumulated detritus of over 70 years.  I have found ration books from 1942; research he undertook for his thesis in metallurgical engineering in 1947; and documents relating to the long ago wound-up estate of my late grandmother, who died in the 1960s.  The garage is full of what had formerly been the contents of the garden shed from their previous home, crammed with stuff that my father had decided “might come in useful”.  An example of something he thought “might come in useful” is the alternator taken from a Morris 1000 he disposed of, for scrap, in the early 1970s.  Having fitted the alternator shortly before the car was involved in a shunt which led to it being scrapped, he resented the thought of having to throw it away.

Anyway, to the point.  I have been slowly working through the cupboards and filing cabinets, throwing out anything more than a couple of years old and filing the rest.  It’s emotional and time-consuming.  It would be different if I was clearing the flat after their deaths; that would be sad but inevitable.  But they are, in some senses at least, still alive, and I am throwing away their lives, the accumulated treasures and memories of over 90 years.  I have power of attorney, I’m entitled to do it, and if they are to remain in their care home, there is no choice.  But it’s hard.  It’s also time-consuming because every cupboard yields another treasure, like unseen photographs of my parents as children, or letters written during the war from cousins in America.

This weekend I ran out of time and so picked up a manila envelope of documents to look at when I got home.  I read the contents today, my mother’s birthday.  I find it’s full of short stories, articles and poems, all written by my mother.  She writes about her family in the 1930s, being evacuated in the War, working as an auxiliary nurse, jitter-bugging with American servicemen, meeting my father for the very first time, her work, how she felt about her sons, her retirement, moving home…her entire life is here.  I had no idea she wrote.  Why didn’t she tell me?  And if she did, why have I not remembered?  Only now, when it’s too late to talk about it, do I realise that we shared a passion for writing.  And she was good too, really good.  I’d have been proud to have written some of these stories.  So, what talent I possess seems to have come from her.  What a wonderful thing we could have shared, had I but known.

I have discovered a window onto the soul of a woman I realise I never really knew, and now it’s too late.

I think few us really know our parents.  They are just, well, our parents.  We don’t know what they were really like, before we were born, when the unknown paths of the future lay ahead, bursting with life and promise.  As a parent myself, I understand that.  The children, almost completely grown up now, are busy getting on with their own lives; they see their mother and me as just “the wrinklies”.  Although they are far too well brought-up to say it, a discussion of our young lives and dreams from the 1960s and 1970s would bore them; the thought that we were once just as capable of irresponsible behaviour, dancing, high excitement (or, God forbid, sex) revolts them faintly.  I hope that when I’m 92 my children won’t regret having never asked what it was like to grow up when I did; what it was like to have been me, so like them but so different.

Here is one of my mother’s poems.  It says much about her, how she railed against old age but how she retained her sense of humour, which appears now to be the very last bit of her to disappear.  Like the last rays of the sun as it drops below the horizon, the vacant shell that is my mother will still laugh, out of the blue, at a joke.

 

Counting My Blessings
by Regina Michael, 2.2.25 –
There are times when I find sleep elusive,
When thoughts ramble free from restraint;
When I spend the night tossing and turning,
And things seem to be what they ain’t.

 

Last night I went down to the kitchen
And sitting and drinking my tea,
I started to add up the value
Of things that mean something to me.

 

The house that we’ve moved ourselves into
After worry and endless frustration,
Is beginning to feel a bit more like a home –
But a bloody long walk to the station!

 

My memory’s great for the forties,
And the fifties and sixties as well.
But I don’t know what day of the week it is now
And I’m missing my slippers like hell.

 

My waistline is starting to thicken;
In contrast my hair’s getting thin.
My grandson says “Grandma, your neck’s very old”
And I find I’m agreeing with him.

 

I’m doing my best to eat wisely
And never to go off the rails,
But the kilos keep adding themselves to my weight –
So I’ve taken to hiding the scales!

 

The children and grandchildren live miles away,
And I find myself frankly confessing
That as long as they keep their complaints to themselves
Their phone calls can count as a blessing.

 

Yet my weird sense of humour is still going strong,
And I still tell a joke with some flair;
My chicken soup’s still reckoned second to none –
So I feel that I shouldn’t despair.

 

For thousands of people are worse off than I;
I suppose that I ought to be grateful.
But, having decided that life’s not too bad,
I’ve spent the last half hour unsuccessfully trying to find a rhyme to end this silly poem.

2 thoughts on “Memories From Beyond Dementia

  1. Simon, I read this wonderful piece with so many mixed emotions, sadness, awe, admiration, a heavy heart, a smile and finally tears and then just when I was reaching for a tissue to stay the sobs, I came to the last line of your mum’s poem – and howled with laughter.
    What a fabulous mum and dad you have, and how poignant that you should ‘find’ their wonderfully lived lives now, albeit tinged with some sadness. My heart goes out to you as I too understand Alzheimer’s/Dementia, first hand.
    You may have only just realised who your great talent was gifted from – I have a feeling your beautiful mum already knew.
    Thinking of you and your family,
    Gina

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