The inspirational John Ley on life with Alzheimers

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?

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: