'Life is worth living' - how one North East family coped with a diagnosis of dementia

My name is Beryl Hylton Downing and my husband, Tony Downing, died of dementia in February.

We lived for 15 years with the disease, and for the last five years, that was in Jesmond, Newcastle.

Tony had a degree in Natural Sciences from Cambridge, and he went on to a Ph.D. in visual neuroscience. That is how he always remembered himself: a young man, full of hope, with a sharp brain and a bright future ahead.

Fast forward to four decades later and Tony attended his last graduation. He was pictured with some of the probably thousands of students he had taught over the years in the psychology department at Newcastle University. But it was a bitter-sweet moment – I had recognised the signs of probable dementia a couple of years before.

In fact, he was 57 when I realised that what had been taken for academic scattiness, was more worrying. I was lucky, I had a clinical background as a speech and language therapist and a degree in psychology.

I persuaded him to take early retirement, on grounds of increasing workload and erosion of academic independence. Mercifully, he agreed.

But Tony didn’t fit the stereotype of a person with dementia. You might not know this, but there are many types of dementia, and they present in different ways.

Tony was a middle-aged, fit man. He ran five or six miles several times a week. He swam in the North sea at all times of the year. He could argue, vigorously, on academic topics with colleagues. We sailed our small sloop up to Edinburgh every summer and spent the days and nights at the Festival Fringe.

We travelled abroad, on my insistence – because it takes a long time to go anywhere if you’re sailing.

How could he have dementia? I put it to him that he needed to seek professional help.

He didn’t believe it. He didn’t want to go for tests. He was fine. ‘It’ would go away. But it didn’t.

Eventually, after two dangerous incidents in the car, I gave him an ultimatum.

He got the diagnosis he didn’t want. He had the “visual variant” of Alzheimer’s Disease called Posterior Cortical Atrophy, affecting vision and co-ordination.

His verbal ability was still in the top percentile and his memory was still well within normal limits, but it would progress to a more typical Alzheimer’s eventually. Nobody could say when.

He was devastated. He was insistent that he would commit suicide. He would just take the boat out to the Farnes one day and jump into the North Sea. The problem was that stereotype of dementia: the very elderly person sitting in a chair in a nursing home, being fed slops.

Tony Downing

He just couldn’t get that image out of his mind, and he thought that life was just not worth living.

So this was my promise to Tony: Life is worth living, and, to the best of my ability, I would help him to live it to the full.

At first, I was able to support him in sailing in our small sloop, Skep, as I had taken a day skipper course.

We were able to manage a trip to Australia – an English-speaking country with good health facilities? Tick, tick.

We sailed in a Tall Ship in the Whitsunday Islands. I had to confide in the skipper and crew to make this possible. They let him helm for a little while, under supervision.

We toured the East coast of Australia. It took a lot of planning and a high degree of alertness on my behalf.

When independent travel abroad became too difficult, we became Saga louts! Cruising with an “elders” tour company provided a sympathetic environment.

I reckoned that if Tony was going to get lost, which he did frequently, there were only so many places he could go on a ship!

First we cruised the Baltic and followed the Tall Ships Race from St Petersburg, then we cruised to the Northern Cape of Norway and went dog-sledding, and we met reindeer-herding Saami people.

People with dementia can still follow interests with support.

I had a discreet word with our tour leaders along the way to look out for him. I found that they were well-versed in the skills of tactful people-herding!

And when that kind of travel was difficult, we had gentler holidays. We went to Lyme Regis fossil-hunting.

We stayed at the Black Isle and explored Loch Ness. We didn’t see a monster, but we saw the Moray Firth Dolphins at Fortrose.

In 2010 we moved from our house in the country to Jesmond as we had been pretty isolated and we needed to be near family, services, shops and transport.

Certain local shops and cafes – and barbers – were brilliant.

It doesn’t take much – more a mind-set of proprietors and staff, together with a little bit of knowledge.

Tony Downing

Just doing ordinary day-to-day things made such a difference: shopping, hair-cuts, walking in the park, having an ice-cream, eating and drinking. Cake and coffee was a great way of unknotting the troubled mind.

The small local supermarket got to know Tony and they looked out for him. He needed help with selection and a little extra time at the checkout; somewhere to sit and collect his thoughts if he couldn’t find his money.

Sadly, in December 2012, Tony broke his hip. His condition had become more complicated and he spent a month at Byker Lodge Resource Centre, where he was assessed as needing full-time care.

We were lucky enough to find a place in a small friendly Care Home just up the road.

However, we had trips out most days. Bobbie Harding suggested I take Tony to Jesmond Senior Mens’ Club each Thursday to hear the talks and feel part of the discussion.

They were welcoming and courteous, and completely understanding of me having to stay with him and take him to the loo.

I would ask questions on his behalf. He used to say “Aren’t we lucky to have this.” He felt part of it.

And our friend Alan took Tony to the weekly Trad Jazz sessions at the Millstone pub and for walks in Jesmond Dene.

He also played his Bodrhan at Byker Lodge where he had been for assessment the previous year. It helped him to feel he had given something back.

We formed a monthly lunch club with our very dear friends Hanna and David, John and Becky.

We found a great gastropub where the staff were very laid-back about non-standard eating practices – spoons or just fingers – and requests for plain white plates instead of wooden boards, shot glasses instead of wine goblets, etc.

So was life worth living? Well, I have to tell you that he stopped saying he would commit suicide, and he would most often say, “I’m such a lucky man”.

This was not the life we had imagined for ourselves in retirement. It took a lot of planning, understanding and goodwill.

Of course, we had the clinical input, some good, some not so hot. But most of all, we had family and friends and neighbours, a carers’ support circle, shops and cafes, clubs and pubs and libraries, and often just kind passers-by, who helped us to make life worth living.

I do commend Promoting Dementia Friendly Jesmond to you. Dementia will touch on all our lives.

There are lots of no-cost or low-cost ways of making life better for families living with dementia, and absolutely everybody can join in.

Go on a one-hour awareness course and there’s the Care Connect app to find out about, among other things you can do to help.