guardian.co.uk,
Nicola Clark, Tuesday 22 May 2012
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| 'The difficulties faced by people with dementia will not be eradicated but time spent with friends can ease their challenges.' Photograph: Alamy |
Although
some may greet awareness-raising cynically, dementia awareness week, launched
by the Alzheimer's society, causes me, as always, to think about my mum.
When you
lose someone you love to dementia, the loss can sometimes be viewed as a
blessed relief. That wasn't my experience. However long or painful the goodbye
is to witness, the pain of your loss stops your own heart for a while. I don't
personally subscribe to the notion of a league table of grief or loss, but I do
subscribe to the belief that dementia is an illness that cuts through the
dignity and strength of the patient affected. And as the person you love drifts
off into the darkness, so does their support network. At a time where it is so
vital for the patient to receive love, the pain of witnessing the ravaging of
mind and eventually body that dementia brings, causes some friends and family
to walk away.
I talked to
Sandra Jones about how she and her husband John support their friend Bob, who
has dementia: "When Bob sees John it's like he gives him the jigsaw piece
he's been looking for. You see the light come on in his eyes." Once a
week, Bob spends an afternoon at John and Sandra's house. The couple, who are
retired, have health conditions themselves. I asked Sandra if the challenges in
their own lives make this difficult: "We don't see it like that. John sees
it as a natural change in Bob, one that he accepts as a part of their
friendship. Often, all Bob needs is our time."
As mum's
primary carer, I understand this. I found the shift from daughter to caretaker
challenging but necessary. Loving someone with dementia tests the theory that
love exists solely because of reciprocation – indeed, love doesn't end where
recognition ends. In my case, I reasoned that I had an enormous debt to be paid
back to my mother. And so I borrowed mum's gentleness and decency, kindness and
humour, problem-solving skills and ability to support those she loved. I gave
those things back to her when she needed them most.
Living
alone, the symptoms of mum's dementia were easy for her to hide. I became well
used to her beautiful smile breaking over a lapse of memory or idiosyncrasy.
She would use self-deprecating humour to disguise it. At 68 however, an angina
attack meant that she was hospitalised and it was under the eyes of the night
staff that mum's difficulties became apparent. She was moved from the cardiac
ward to the geriatric ward, and the staff gently cared for her, as she needed.
She was diagnosed by a neurologist in the most dignified way imaginable: he
asked her what she believed her condition was. "I think I may have
dementia," was her answer.
Once home,
I divided my time between caring for my girls who both have autism and looking
after mum. The thing she most needed from me was my time, and I'm so glad to
say I was able to give her this. I remember holding her hand tightly when she
said, "they tell me I have dementia Nicky, but I don't have to believe
them if I don't want to, do I?" before breaking down.
Life is
terrifying when you have no memory. From the crucial practicalities of life
such as eating, working, dressing, staying clean and safe to less obvious but
equally crucial issues like reference and dignity, memory guides you through. I
would urge anyone with a friend or family member coping with dementia to know
that as hard as it is to witness it, walking away will forever end the activity of neuro-pathways crucial for recognition. Seeing loved ones regularly
preserves love for longer. The difficulties faced by people with dementia will
not be eradicated, but time spent with friends can ease the challenges they
have to face.
They call
dementia "the long goodbye" for a reason. Its progression is slow and
heartbreaking in its finality and cruelty. Slowly, mum let go of everyone
except me and at the end, she would move her eyes to the sound of my voice. She
would decline when I left and rally when I returned. Those final few days were
the hardest of my life, ending only when I kissed her goodbye for the last
time.
All I hope
is that she knew how loved she was.
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