It all started so, so well. I
met the beautiful Linda in Easter 1985, proposed on Valentine’s Day 1986 and in
June three years later we were married.
Along came child number one,
Thomas, born in October 1991. Sprog Two arrived two years later but when the
midwife called for the duty paediatrician clearly all was not well.
“Is there a problem?” I
asked. “Yes, I think there is,” she
replied. “She’s got Down’s Syndrome, hasn’t she?” The Doctor looked stunned.
But – and I don’t believe in this stuff
normally – I had had a premonition on the journey to the hospital.
Katie was born with Down’s
and suddenly our perfect lives were not so perfect. Quickly she became a joy
but one morning – our wedding anniversary 16 years ago – Linda couldn’t wake her.
She was rushed to St Mary’s in London and spent three weeks fighting for her life.
Katie
had developed Type 1 diabetes but now copes admirably. And she has become my
crutch, alongside her brother, since another problem decided to pop up in our
lives.
Linda
was wonderful with the kids, encouraging them, cajoling them, loving them, challenging
them while I was working as a football writer with The Daily Telegraph, jetting
all over the world to watch football.
But soon
after she reached 50 we, as a family, noticed something wasn’t quite right.
Linda would forget things, miss-place objects, get lost on routine journeys. In
isolation, things we all do, but collectively a worry.
One
neurologist confronted our fears with incredulity. She was only in here early 50s,
how could it possibly be dementia? Linda’s dad had dementia. I knew. So, I
think, did Linda.
After
nearly three years of investigations – brain scans, lumbar puncture tests,
countless MMSE tests – our worst fears were confirmed. At the age of 53 Linda
was diagnosed with Early Onset Alzheimer’s.
A quite
brilliant artist, she was developing her skills to the extent that she was
selling her art, had a website and was thriving at what she did best. The art
continued for a couple of years, but I noticed her paintings were now not up to
their usual standard.
Linda’s
deterioration has now become rapid. She cannot read or write. She seems to have
tunnel vision, can barely talk and now has epilepsy and psychosis. I have to
dress and wash her, help her at meal times and with her more personal needs.
That’s fine. But as a family we have already lost a devoted mum and darling
wife. She still looks so young, and when she smiles I see the Linda of old.
We have
been lucky with help, both for Katie and Linda. Katie dances, plays the piano and
teaches other special needs kids.
Linda
now goes to day care twice a week and has four three-hourly visits a week from
Crossroads Care.
She is
looked after fortnightly by Turning Point, a charity for younger dementia
sufferers, attends a wonderful music therapy group, Music 24, and goes signing
with Singing Down Memory Lane. In addition MIND’s weekly Hub is a welcome
break.
But once that is over, home can be a lonely place. I have lost my best mate, my lover, my soul partner. Recently she has been going into care for two weeks, and while I hate losing her for a fortnight I need that break to recharge.
To deal
with everyday life I try and stay positive. I am still in my 50s – just – but I
mix with many wonderful carers, who are older than me, and I wonder how they
cope.
We had
an extension built to accommodate the inevitability that Linda will eventually
be unable to use the stairs. A downstairs bathroom with walk-in shower is
already well used, while her future
bedroom is, for now, a music room with a piano – and a load of her art work on
the walls.
To relax
I am learning to tickle the ivories – badly – while as a family we have been ‘adopted’
by some wonderful people at The Golden Lion pub in Hoddesdon, Hertfordshire. All
the locals know about Linda and Katie and look out for them. I can have a quiet
pint in the knowledge that both are safe.
Without
that refuge and the friendship of a growing army of carers – and their partners
– I don’t know how I would cope. I still don’t know how I get by. It’s
something you do. Unconditional love maybe? A reminder of those vows we took
nearly 30 years ago? I don’t really know the answer, but I am determined to
give the lady that was Linda Ley my unquestioned and total support for as long
as I can. Because that is what love, in any form, is all about. Isn’t it?
