"It’s been quite a journey so far..." - An Article by Alzheimer Café Isle of Wight Volunteer Barry Jackman

It’s been quite a journey so far ……
 
Monday 14th January, 2011, was my wife’s sixty-fifth birthday and we were spending it with our daughter in Crawley as in August 2006 we had moved to France to begin our final adventure. We had almost finished renovating a farmhouse and outbuildings in the Charente and planned to spend ten to fifteen years there before returning to the Island; we had previously lived in Gatcombe, a small hamlet for the past twenty-seven years where our children were brought up.

I had noticed Ruth was missing her usual magazines so I thought that an iPad would enable her to subscribe. I was very surprised when she showed little interest in using it. I had noticed her reluctance to use a mobile phone; an essential item in rural France where strangely coverage was pretty good. Unlike the domestic broadband connection! Occasionally, I would set off on my own to collect wood in the trailer or lend a helping hand to a neighbour and be away for  hours. Ruth never phoned me but usually greeted me with “Why didn’t you phone and say you would be so long?”

Now I recognise this as the first signs of dementia but at the time, it had no significance. I didn’t connect the mood swings and a growing tendency for her to keep close to me. I was focussed on renovation tasks. Ruth concentrated on making furnishings and had even tiled and grouted the kitchen, though she lost interest when I suggested she concentrate on working with me in one of the barns. She preferred to sit in front of the wood burner, cat on lap with an old magazine.

Things came to a head when she returned home for a visit to the dentist and I put her on an Easy Jet flight from Bordeaux. We lost touch for almost twelve hours. She missed a pick-up at Ryde Pierhead and travelled by bus to Niton where she discovered nobody was around to receive her. They were all at the ferry hoping to spot her coming off a boat. Thanks to a pub landlord and a couple of helpful regulars, she was reunited and the panic was over. We were about to contact the police already having established that she had arrived at Gatwick. Ruth had her mobile. It was fully charged and I had given her a notebook with contact numbers as a backup.  Ruth was having difficulty processing information and employing conventional logic.

What relevance does this have? It shows the beginning of one couple’s journey. It reveals how plans can go wrong. The personal, financial and emotional stability that is established through many years of partnership becomes destabilised. At the time I didn’t know why this was happening and how I could best support a person I loved.  This is not a unique situation. We often meet couples at the start of their journey who have taken that first step of being diagnosed and then left bewildered. Alzheimer Cafés are well publicised and become a tentative first port of call.  

I found a warm welcome, when I made my first visit. I was encouraged by an old friend who volunteered there and who assured me that we would be made welcome and should Ruth feel anxious, we could leave at any point. What I learned about dementia over the next year or so, helped me make sense of what was happening. I learned from the perspective of a carer not solely from a medical viewpoint.

Earon Davis says: “It takes a community to maintain a human.”

He is right and The Alzheimer Cafés provide support and the knowledge to face the future with strength - together. There are huge gaps in our care network. Diagnosis seems to be the primary aim of the medical profession but post diagnostic support is sketchy, unreliable and sometimes downright inappropriate.

I am a retired professional, reasonably articulate, independent and lucky to have a reasonable pension. I was seen as being able to “cope”. I was under the radar. It didn’t stop me from reaching a crisis.

In the wake of this trauma, I determined to make a difference. Nobody should have to share that experience. That is why, I became a volunteer and I now regularly help with three cafés. I know what it is like to face the future at the start of this journey. I know the challenge people face and the rawness of emotions that must be endured. I also know that my journey is still running its course but I have learned to value the relationship I still have with my wife and to adjust my perception of reality.
So, I may wear an orange shirt as a volunteer but in many respects, I am no different to many of those carers we meet. After all, “We are all in the same boat”.
 
Barry Jackman
 
It is now Monday 29th September, 2025 and I still volunteer though Ruth passed away six years ago. A lot has changed in those 14 years and this week sees the review of the Island’s Dementia Strategy where Local Authority, NHS and volunteer groups combine to ensure good care is available to all Islanders. Alzheimer Café, Carers IW and Age UK  are leading members representing Island people and we are all hoping that the new NHS Trust will join this unique partnership and show the rest of the UK how we look after people when dementia touches their families.