Christina Lee reviews one woman’s powerful story of sharing a life with a partner living with dementia. 

Since getting involved with the Rochester Literature Festival and talking to families of people with dementia at the Memory Café, I decided to read up on dementia to learn more about it and took out Rachael Dixey’s Our Dementia Diary from the library.

As someone who is unfamiliar with dementia and Alzheimer’s disease and didn’t even know the difference between the two, reading Dixey’s memoir has been an incredible eye-opener. (I now know that dementia is the set of symptoms such as memory loss that occur when the brain is affected by disease; Alzheimer’s is one of the most common type of dementia). While fact sheets and medical information booklets are of course invaluable resources for learning about the disease, dementia narratives offer powerful, personal stories about what it is like to live with the illness, the impact on the family, relationships and everyday life.

“This book isn’t just about the oldest story – finding love and losing it. It’s also a lot about Alzheimer’s and what it’s like to have it, to care for someone with it, and to lose the love of your life to it.” (16)

Writing Lodestones

Our Dementia Diary was written by Rachael Dixey, a professor at Leeds Beckett University, about the story of her civil partner Irene Heron, who had early-onset dementia at the age of 56 and died in her sixties. Dixey herself was diagnosed with cancer in 2001, and Irene had a brain scan in 2004 which confirmed Alzheimer’s.

Dixey was encouraged to write about her experiences by her producer friend Brian Daniels, who later adapted parts of their story into a play, Don’t Leave Me Now, which was performed at Medway Little Theatre earlier this year.

For Dixey, writing about her experiences as a partner/carer in a journal was a crucial way of managing her feelings and relieving the stress of caring for Irene. It was a way of keeping the ‘tide of grief’ at bay and not letting herself get washed away by it. While she admits that writing won’t magically lead to ‘closure’, it can at least take the emotional weight off.

“I have written it all out. It’s a book, whether it gets published or not. I do feel better, lighter, like when I leave a counselling session, as if some weight has been left behind.” (156)

She describes the process of writing as ‘turning a millstone into a lodestone’, transforming her emotions from being a burden that weighs her down, to being something that keeps her anchored and grounded, eventually leading her to a new direction.

‘Fifty Shades of Dementia’

Irene was an English teacher who volunteered abroad in deprived areas, then later became a teacher for adult learners. She was an amateur dramatist, loved to sing and could recite poetry by heart. Dementia can happen to anyone, even someone as young and fit as Irene and you can’t prevent it simply by doing crosswords and Sudoku.

“This is terrible, a terrible, terrible thing to have happened to someone who was so vital, so alive, becoming a stooped, mumbling and sad figure. Senseless, all senseless.” (76)

At first, she forgot her keys and got lost. Then she lost the ability to count money, and couldn’t follow the plot of a book. She became easily confused and suspicious of strangers, mostly the care-workers Dixey hired to look after Irene. Not being able to remember what she did and where she was made Irene extremely irritable and completely changed her personality. She was angry at Dixey for doing something that she herself did, and accused the care workers of stealing things. She had trouble making decisions and became frustrated when she forgot that she made these decisions. She kicked Dixey out of the house they lived together for years in because she thought Dixey was an intruder. As her behaviour grew more erratic and violent, she even grabbed the steering wheel while Dixey was driving on the motorway.

“She is alive, though, but it feels a bit like she is dead to me. This is the conundrum of Alzheimer’s.” (98)

Even though Irene lived for another ten years after her diagnosis, Dixey felt that she was already ‘mourning’ Irene long before. As Irene’s symptoms worsened, she needed more and more help with simple tasks, and Dixey could no longer hold conversations with Irene. There was nothing of the intelligent, witty woman she fell in love with left in Irene. For Dixey, not being able to share her feelings, thoughts and memories with Irene, was the worst. Irene was alive, but she wasn’t ‘living’ life at all.

Finding A Voice

“Every book I read has something which speaks to me in a deep way about my experience.” (80)

When Dixey had cancer, she poured herself into reading books by other cancer patients. Books were a source of power for her in a time of need. In the same way, she explains that part of the reason for writing Our Dementia Diary was her wish to become a source of strength for others in a similar situation as her. It is not easy to read these narratives, especially for those who have seen the effects of dementia first-hand in people they love. Yet when thinking about whether she would have wanted to read a dementia memoir when Irene was first diagnosed with dementia, Dixey wholeheartedly believes that such a book would be an empowering tool for those who are going through a hard time and raise awareness for LGBTQ and younger people struggling with dementia.

“Would I have wanted to read someone else’s outpourings about Alzheimer’s? Someone who had really been there, lived it, lost the love of their life to this disease? Yes, I would have wanted that book, would have sought it out. […] If it helps just one person get through the nightmare it will have been worth it.” (13)

She speaks on the behalf of those who do not have a voice, whether it is because of dementia, or because they do not have a platform for speaking out their stories. Even though their experiences of illness and grief are different, her book is a testimony to others also going through dementia that they are not alone, and that however difficult it may be now, they will get through it.
To learn more about dementia or talk to advisers, visit Dementia UK and Alzheimer’s Society.

If you missed the performance of Don’t Leave Me Now, you can watch a reading of the play produced by NHS Birmingham Capacity Act Team here.