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?

Sainsbury’s trials new sunflower lanyard initiative to help customers with hidden disabilities

Sainsbury’s recognises there are hidden disabilities

Sainsbury’s has announced the extension of a new trial to help enhance the shopping experience for customers with hidden disabilities. The initiative will offer shoppers the option to pick up a lanyard, which has been purposely designed to act as a discreet sign for store colleagues to recognise if they may need to provide a customer with additional support when in store. 

Launched initially in Sainsbury’s Barnstaple and rolling out to more stores this month, the scheme helps those with a number of disabilities, such as autism, dementia, visual or hearing impairment. Colleagues will be happy to provide extra support such as opening a new checkout lane, assisting with finding shopping items or simply giving them more time at the checkout. Lanyards will be available to collect for free and are for each customer to keep so they can wear it every time they come into store. 

Tim Fallowfield, Company Secretary & Corporate Services Director for Sainsbury’s, said: “We want to be the most inclusive retailer and we understand that a busy supermarket environment can present challenges for some of our customers. As the first retailer to offer this service, this initiative is just one example of the steps we are taking to give our customers the best possible experience when shopping. We are working with our colleagues to ensure that they are fully equipped to provide assistance to those who need it and we encourage feedback from local communities where we are trialling the initiative.”

The additional stores partcicipating in Hertfordshire are:

  • Ware Star Street
  • Broxbourne High Road
  • Waltham Cross
  • Bishop Stortford
  • Hertford
  • Borehamwood Shenley Road
  • Hoddesdon
  • Welwyn Garden City
  • London Colney
  • Potters Bar

Dog Days gets monthly visit

Hertswise hubs get a paw-fect surprise, as Dog Days run every month.

dogs days 6th June 1
They look like the paw-fect friends!

The successful dog days event that are at some of the Hertswise hubs, are now to be run every 1st Thursday of the month!

This event is gives the clients a chance to put their dementia in second place whilst they enjoy a fun and exciting afternoon with some lovely pooches.

At all of the dog days events the guests enjoy tea, cakes, and pet themed activities while interacting with friendly dogs.

Upcoming Dog Days Events (all dates run 2pm – 4pm)

  • 4th July
  • 1st August
  • 5th September
  • 3rd October

If you, a friend or loved one is living with Dementia and would like to come along and join the fun, please contact Samantha Dukelow at: OR 03001234044.

Please note that booking is not essential.

BBC Three Counties Radio Interview

As Dementia Action Week started, Age UK Hertfordshire’s Director of Operations, Mark Hanna, got the opportunity to appear on BBC Three Counties Radio.

aluminum audio battery broadcast
Photo by Pixabay on

Here he got the chance to speak about who Hertswise are, what services they offer older people with dementia in Hertfordshire, and how you can contact them.

Click on the link below to hear what Mark Hanna has to say!

#DementiaActionWeek Question 4

What do Hertswise offer to people living with dementia and their carers, and why are they so special?


Hertswise is an innovative countywide service designed to support people living with dementia, low level memory loss or mild cognitive impairments as well as their loved ones and carers. Our teams aim to ensure that people of all ages, living anywhere in Hertfordshire, are able to easily access information and advice, activities and support in groups or a 1-1 basis, regardless of whether they have (or want) a diagnosis.

The service is delivered by a partnership of community and voluntary groups, including Age UK Hertfordshire, Hertfordshire Independent Living Service, Herts Mind Network, Carers in Hertfordshire, Age UK Dacorum HertsHelp, Herts Careline and North Herts Minority Ethnic Forum – it’s quite a long list or organisations helping each other for this project!

Hertswise is easily accessed via calling HertsHelp on 0300 123 4044