Valerie Blumenthal, is a critically-acclaimed novelist and author of ten books – her first four were published by Harper Collins and a further four were published by Sceptre/Hodder & Stoughton. Sadly, she was diagnosed with Posterior Cortical Atrophy (PCA), a rare form of Alzheimer’s affecting the visual, motor and spatial parts of the brain. More recently, PCA has rendered her illiterate – which, to quote her, is a cruel trick to play on a writer. Using voice recognition software, she has just published her memoirs Please Remember Me As I Was about living with PCA, which are now available to purchase on Amazon from here.
The year was 2012. My eighty-nine-year-old mother was terminally ill with Parkinson’s and dementia.
It is a mild, spring day, and my mother and I are circling around the garden at a snail’s pace. She leans heavily on a walking frame, gripping it
so tightly from the effort that the veins of her fingers protrude like claws. She had such beautiful hands once; long, elegant fingers without a blemish.
As we walk I point out various things which might be of interest to her: the red kite in the distance; buds that had burst into flower overnight; the clacking sound of a disturbed pheasant. She disregards my efforts.
“I want to go home now,” she tells me. “It’s a very long way home.”
I do not contradict her. Slowly, painfully, we re-trace our steps.
Back indoors I settle her in her usual chair, and she slumps into it, as though she has just completed a marathon. Absently, I glance at the large clock on the kitchen wall; I had bought it for her a few months previously, to enable her to read it more easily; now, however, I found that I was unable to decipher any of the digits. Only by squinting was I finally able to tell the time. It remains etched in my memory: 12:10. Had that been the beginning?
Disconcerted I made tea for us both, and switched on the television for my mother. She was staring at me in a strange manner, as though she were troubled by something.
Ignoring the television, she continued to gaze at me, frowning in that same, assessing manner. Then, in a lucid, gentle tone, she said, “Darling, I do hope you’re not getting the same illness that I’ve got”.
I was stunned. What had prompted this remark? Had I said or done anything stupid, without my realising it? She and I had always been exceptionally close; had she sensed something in my demeanour? Had the remark been prescient in some way? I shall never know.
There is so much I remember about my mother: her beauty, of course; her kindness; her humour; her wisdom; her pride in me when I became a published novelist; and – much more recently – her stoic bravery when my father, the only man she had ever loved, died. He had been a brilliant, charismatic man, of great intellect and humour.
I commented to her one day that she had not cried.
“I can’t cry. I have never been able to cry.” She tried to explain. “I was brought up to have a stiff upper lip, and not to talk about my feelings. It was a different era then.”
We played dominoes together, and snakes and ladders. I bought her a writing pad, so she could write about her feelings; but it remained untouched. I watched her condition deteriorate. One day I broached the subject of death: did she believe in anything? Was she afraid at all, I had asked her?
“Oh no darling,” she replied, with conviction, “I shall see your daddy again and everyone I love.”
It gives me such comfort to know that she had not been afraid.
It has only just struck me that I have a kind of affinity with my mother: we have both experienced dementia, and I recognise myself in her. If anything, I feel even closer than I did when she was alive. I understand her. I know what she went through. I hope I can be as stoic as she was.
In the earlier stages of her illness, I used to see her at least four times a week and I would phone her twice a day. On the other days, I had organised for a carer to come. I recall an amusing incident: I had phoned in the morning, to speak to her; the carer had passed the telephone to my mother, then left us to it. “I can’t talk now,” came my mother’s surprisingly youthful voice, sounding agitated. “I’m very busy.”
“Oh”, I said, trying to sound nonchalant. “I’m sorry to disturb you; what are you doing”
“I’m selling the house,” my mother said. At this point, she was in her usual chair and was watching television.
I thought quickly: “I mustn’t disturb you then.” I paused. ”Are you by any chance watching one of those interesting property programs,” I asked. “Yes darling,” she affirmed, “it’s really interesting, I must go.” And she hung up.
A day after this little incident, my mother requested that I read to her. The book that she asked for was one of my own and had been her favourite. I made her comfortable and started to read. I stopped, almost immediately. The words were dancing before my eyes, like witches. I knew the beginning by heart and began again. I made another attempt, but the same thing happened. I could not read a word. What was happening to me? I could not read my own novel, which had once meant so much to me.
Meanwhile, my mother had fallen asleep anyway.
In this soulless place of lost dreams
and fragmented memories,
these are the ghosts of my future,
from which there is no escape.
With gentle cruelty the past nudges me.
Your turn soon, it whispers.
Trembling fingers, like broken wings,
stretching out for help:
What’s wrong dear? What do you want?
The ghost does not reply. It wants too much.
Most of all it yearns for youth.
And in this sterile place of lost dreams and blank faces, the television plays on and on and on without remorse. But from a far corner of the room comes a faintest of stirs; I notice, then, the tiny, wizened, figure; a smile flickers on the edge of her lips, like a tiny beacon.
For a moment it seems as though
she is embraced by a halo of light.
Is she remembering the many times she lay in a damp, coital pleasure, and she would turn to him beside her, with illuminated eyes?
Then the light dims,
and the ghost of my future tiptoes away.