Lori Hayden shares her personal experience of caring for her late husband, John. Alongside attending and participating in many projects supporting those with dementia and their loved ones, she is also a trustee on the Board of Arts4Dementia.
My husband John and I met over 40 years ago when we both lived and worked in Los Angeles. I’m American and John was an Englishman with a degree in both physics and philosophy. He worked as a computer architect, building and designing computer systems for companies around the world including Stanford University and Warner Bros.
Ten years later, John and I moved to London where he continued to work with computer systems, and I worked in business development and PR.
Back then, our future seemed so bright and our pension age so very far away….
Alas, just after John retired, his behaviour changed. For a year I noticed the difference and, even though I brought this to the attention of the GP, it wasn’t until after I kept a diary for nearly nine months of John’s odd behaviour that an MRI scan was taken. In September 2014, John was diagnosed with PCA, posterior cortical atrophy, a rare form of Alzheimer’s, which initially affects visual / spatial abilities, before showing other signs of the disease.
We were in shock. The future we had mapped out was now a blank sheet. At the time, we didn’t even know if Alzheimer’s and dementia were the same thing, let alone what PCA was. It was as if we had reached the end of the road.
Our first challenge was to pick ourselves up and try not to be deflated by the realisation that the future we planned had disappeared. At a complete loss, we tentatively started to accept advice and support from organisations such as Dementia Pathfinders, Alzheimer’s Society, and our local Carers Centre. They were wonderful and, as the shock wore off, we became part of a new world, a new chapter.
I spent the first year after his diagnosis preparing the ground for the new future that lie ahead. I did practical things like apply for Power of Attorney, sorting out a discount on our council tax and Attendance Allowance. Anything that would help ease our journey.
John accepted his diagnosis with grace. We started to attend events for couples like us and met many wonderful people who were sharing the same new experiences as we were. Meeting others in the same situation made all the difference and some of those people are now very close friends.
Life as a carer is very hard, to say the least, I’m sure many of you can confirm that. To care for and watch someone you love slowly slipping away is almost unthinkable. But, if it is possible to take a step back from the daily, arduous tasks and make the time to attend some of the wonderful things being offered to people with dementia and their families, I would highly recommend it.
It gives you time to break away from the routine and just be together in the moment. It isn’t just good for the person with dementia. It’s a good opportunity for the carer/partner just to be able to breathe and enjoy their partner with others there to support you.
Some of the projects that enriched our lives and were truly memorable were:
* Music for Life sessions provided by Wigmore Hall,
* Dance for Dementia at Ballet Rambert,
* Clay for Dementia classes at the Lambeth Palace Garden Museum (initially piloted by Arts4Dementia)
* Sensory Palaces at Hampton Court Palace,
* Singing for the Brain provided by the Alzheimer’s Society
* Positive Spin cycling sessions for people with dementia and their families.
The above projects were in multiple sessions. But there were also one-off projects we enjoyed immensely, such as an African Drumming with Ray Watters with Dementia Pathfinders and Dancing with Parachutes with Beatrice Allegranti and her team, also with Dementia Pathfinders.
Sadly, my dear John passed away on 28th.June 2018, but taking part in these projects made such a difference to our journey and gave both John and I great joy. So much so that this month the John Gregory Williamson Memorial Award was launched.
The award will be given to the most outstanding project that has enriched the lives of people with dementia and their families. If a project has made a difference to you or someone you know, please let them know and put them forward. The website is