I’ve always been a problem solver, something I’ve had be in my professional life, and I think it’s just part of my nature. But when Jane was diagnosed with dementia in March 2014 I was confronted with something I couldn’t fix. I couldn’t make it better for her, for me, or for our four daughters. At first, I felt our lives had come to an end. All I could see ahead was a condition that would get progressively worse and would rob Jane of her full, active life. It was so incredibly sad.
Jane had always been a strong, capable woman and the diagnosis, understandably, hit her hard. She became quite depressed, as did I. Eventually however, I realised that if I couldn’t change what had happened, I could learn to adapt to it – and I had to convince Jane this was something we could both do together.
I started by giving up work so that we could enjoy the time we had. Then, since there was no support group in North London specifically for people with early onset dementia, we helped set one up ourselves (YoYo) and I fell into the role of organiser. Originally our intention was to ‘help other people’ who perhaps were coping less well than us, but we actually gained a lot more from it than either of us had ever anticipated.
We decided to make the most of every day, and I like to think that most of the time we succeeded. I know for some people that might mean going on cruises and luxury holidays, but for us it was about doing activities each day that were good for Jane, and ultimately good for both of us. We got involved in a dementia cycling project and in all kinds of arts, music and theatre projects. We did yoga, we went for nature walks, we dined out, we had weekends away, and since we’d always been politically active, we went on a NHS demo too! Gradually, I learnt that a dementia diagnosis isn’t the end. It may signal the end of a life you once lived, but there is plenty of life you can still have, and it makes sense to live it!
I had enjoyed caring for Jane and I know she liked the fact it was me, it felt right somehow. But her decline was rapid. As she became less and less the person she used to be, the caring role inevitably became more difficult. By the end of 2016 I was struggling not only physically, but emotionally too; grieving for the person I was losing and, in some respects, had already lost.
I’m usually a very private person, not one to publicly express my emotions, but after Jane and I had spent a particularly lovely day cycling, for some reason I decided to write a poem. I’m not sure why exactly, but I clearly had a need to express myself, and poetry seemed the obvious way to do it.
I’m not sure if it made me feel better…but perhaps it ensured that I didn’t feel any worse!
As months passed and Jane’s dementia progressed, I found myself writing more poetry. Often, I’d compose verses in my head while on walks with Jane, and then at the first opportunity I’d write it down. I wrote about good days, happy days, bad days, sad days and days that just seemed significant, like the first time Jane went to day care.
Writing poetry was definitely cathartic. It helped me to adapt to the ever changing and challenging journey that is dementia, it helped me to understand it and its emotional impact. At first, I tried reading the poems I wrote out loud to Jane, but it was too hard.
Everyone has their tipping point. Mine came last year when, on a rare weekend away from home whilst our girls cared for Jane, it suddenly hit me; I really had lost her…
Back home, we all agreed it was time I started to consider a care home. We found a lovely place far quicker than I’d anticipated and Jane moved in on June 29, the day of our 30th anniversary. There were lots of tears of course, but if I’m honest, there was also relief, and my poems reflected it all.
Eight months later Jane appears settled and is well cared for, and although she barely recognises me, I’m okay with that. My primary concern has always been that Jane is alright, and if she is – well, I can cope with the rest.
I’ve written only a couple of poems since Jane went into residential care, dealing with my emotions in the weeks after she left home. It felt right somehow to leave her story there. I’ve never considered myself a poet – I still don’t – and I hadn’t considered publishing my poems, but when Barbara Stephens at Dementia Pathfinders suggested I should, I agreed, hoping they might resonate with others. It’s quite odd seeing them all in print, but I know the book we’ve created is something our family will treasure. As for me, I’m just pleased to have a record, a record of the journey Jane and I shared.
We have ten copies of Jim’s book To Know Me: Our Shared Dementia Journey in Poetry to give away. The competition has now ended. Congratulations if you are one of the winners!
To see one of Jim’s poems, go here https://www.facebook.com/groups/UnforgettableDementiaSupport/