“Alzheimer’s came between us.
“It does that, drives you and the love of your life apart, going your separate ways because you cannot follow.”
So writes Rachael Dixey in the prologue to her book, Our Dementia Diary: Irene, Alzheimer’s and Me.
It tells the story of Rachael and her civil partner Irene, who first started showing signs of dementia aged 52, and then follows the progression of the disease.
She was diagnosed with early-onset Alzheimer’s at the age of 56 and the book tells movingly of the incredibly difficult and often devastating world they are thrown into afterwards.
Based on Rachael’s journals, the memoir follows their journey with brutal honesty.
Rachael, a retired professor at Leeds Beckett University, was encouraged by Brian Daniels, a producer friend who has also turned it into a play.
“I had to write in my main job but it was so different, writing scientific papers, but with this it was quite easy – I could just write,” she said.
“It’s a different way of writing but it also feels very good. People respond to the book because it’s raw.”
Rachael, who lives near Pool-in-Wharfedale, hopes that the book may help others in similar situations.
“I wished that I had had a book like this,” the 62-year-old said. “I wished there had been something out there for me. Also it was to raise some of the LGBT issues and those around younger people with dementia.”
When she had to make the agonising decision to move Irene to a care home, some of these issues came to the fore.
“I went to one care home and just did not feel comfortable in being out. The one I eventually chose was different again and I felt very comfortable. You do hear awful stories about the quality of care, but they were just brilliant.”
The book is also a love story about a couple together for over three decades before Irene’s death at the age of 66.
That partnership is at the heart of the story – Rachael is the last person who Irene recognises, which she writes is a “privilege and a comfort”.
“I also want to help other people realise that gay and lesbian people love each other as much as anyone else,” she added.
“It might change a few attitudes as well.”
Rachael has had the odd strange comment – people asking whether she “misses” Irene, to which the answer is obvious.
As she explains in a chapter about why she has written the book: “It makes no difference that we are a same-sex couple – our story is the same as any couple’s wherein love resides.
“Those lucky enough to have found a soul mate must inevitably suffer a loss.”
* Rachael and Irene’s story inspired Brian Daniels to write the play Don’t Leave Me Now.
The producer of more than 200 plays and musicals was gripped by Rachael’s journals and used them as the basis for the play. He also fused their experiences with a storyline inspired by Chris, a fellow dementia patient in Irene’s care home. The play has now been staged more than 100 times all over the country and is being used for training purposes.