Book Review of

“Our Dementia Diary”

Rachael and Irene were supposed to live a long and happy life, retire and travel the world. But a thief called Alzheimer’s visited in 2004 and began tearing apart the lives they had carefully built for a quarter century.

This is a remarkably honest story of the enduring love between two people coping with uncertainty and the eventual loneliness of losing a spouse.

The author, Rachael Dixey, professor at Leeds Beckett University copes by keeping a journal—a way to release her feelings. She ties these entries with “interpolations” to make sense of it all. She wonders if a more appropriate title might be Fifty Shades of Dementia.

Dixey manages to find strength amidst the tears to take care of herself and find the humor. She hires in-home caregivers for Irene while she works (for sanity). When Irene is hospitalized and then placed in a care home, she visits almost every day and soon realizes the toll it takes when Irene recognizes her and says, “I love you” and the next day, forgets and walks past her in the corridor.

During the nine-years, from Irene’s diagnosis to her passing, Rachael writes of the full range of emotions—from the love she and Irene shared to missing Irene, feeling lonely as a singleton, dating (nothing lasts but gives her strength to be stronger for Irene), and even contemplating Irene’s death. Through it all, she visits Irene regularly, cares for her, feeds her, and feels Irene in every room of their house.

She recounts with humor the folly of dealing with social services. Irene attends adult day services in a county that only covers healthcare and receives healthcare in a county that covers social services such as adult day care. After almost a year, they work it out where she feels assured of not losing their home. Meanwhile, she takes time off periodically. The time away gives her greater appreciation for what she and Irene had despite some funny (in hindsight) foibles during her travels.

She recounts the good times they had going on “epic walks,” camping, exploring the mountains, trees, and sunsets. She misses those quiet mornings together. She struggles to remember the bad unusual behaviors for five years before Irene’s diagnosis at age 57. Home movies help her see the beginnings of Irene’s inexplicable behaviors. She’s able to piece together those embarrassing outbursts when Irene would storm out of restaurants after finding something wrong with her meal. She recalls the desperate cries at home when Irene couldn’t find a piece of clothing she had worn for several days in a row (likely because Rachael removed it for washing). And yet, Irene’s heart-wrenching cry early on returns to her from time to time, “I don’t know who I am anymore. Please help me.”

Written by an author based in the UK gives us Americans a refreshing expression of care between partners. Her writing is characterized as informed humility. We gain greater awareness and knowledge of what it’s like to live with Alzheimer’s while feeling the angst and pain of losing her soulmate. Written by one of a gay couple gives us an endearing portrait of how love among LGBTs is no different than love among (dare I say, traditional?) male-female partners. Oftentimes, because of ongoing discrimination, the bond of their love seems stronger.

I’m glad she chose to write, Our Dementia Diary – Irene, Alzheimer’s and Me and that her and Irene’s story is being shared. The LGBT caregiver’s voice is one that needs to be heard.

Based on a review by Brenda Avadian, MA, who serves as President of The Caregiver’s Voice.

More information from Amazon:

This is a love story from start to finish, Irene and Rachael’s. Based on the diaries of Rachael Dixey who looked after her civil partner Irene after she developed early onset Alzheimer’s disease, the book opens with the lines: Irene, Alzheimer’s and me – 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.

That’s the story really, that’s it. The end. But it is also the beginning of the story, which shows how life can still be lived despite losing a life partner to dementia, and how to cope emotionally and practically with a disease that robs you of your loved one a thousand times before they die.

The story charts the daily decline and inexorable loss of Irene to dementia. With the dramatic deterioration in Irene’s health Rachael turns from lover and soul mate to career and, finally, single woman. Eventually, no longer able to cope with Irene at home, she makes the agonizing decision to allow Irene to be put in a care home. There she spent her last six years. When she died aged 66, the couple had spent half their life together.

This book is a powerful and moving account of the progression of dementia, and raises serious questions about how our society cares for those who develop the disease, especially at a young age and in the gay, lesbian community. It also deals with loss and grief, during the illness and afterwards. Their memoir will be invaluable for anyone affected by dementia, those working in mental health and those caring for a loved one with a life-changing and incurable illness.

Our Dementia Diary tells with brutal honesty of love, loss and life with Alzheimer’s and opens up discussion of how dementia can be handled better.

Also Recommended:

The 36-Hour Day, 5th Edition A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss

This best seller is the definitive guide for people caring for someone with dementia. Now in a new and updated edition, this best-selling book features thoroughly revised chapters on the causes of dementia, managing the early stages of dementia, the prevention of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option.

The author, Nancy L. Mace, M.A., is currently teaching dementia care internationally. She has been a consultant to the Office of Technology Assessment, U.S. Congress, and to the Alzheimer’s Association, and she was an assistant in psychiatry and coordinator of the T. Rowe and Eleanor Price Teaching Service at the Department of Psychiatry and Behavioral Sciences of the Johns Hopkins University School of Medicine.