This is a very moving account of the personal journey, from diagnosis to death, of a very close and loving couple who were not afraid to share their experience of the progressive loss of faculties and slow death caused by Alzheimer’s. It is a poetically written book about love, fear, hope and loss; about bravery and endurance; commitment and acceptance.
I was attracted to this book on two counts. First, both the author and her husband are long term meditators and, as such, were committed to mindful, compassionate observation of experience, accompanied by the blending of acceptance and action. As Olivia Hoblitzelle says: “We saw that Buddhist teachings were a container to hold the shifting realities of disease, that they could offer a helpful perspective as well as inspiration. All of us know, at some level, that we will face aging, dying and death but our youth-oriented culture is steeped in denial and phobic about these topics. Hob and I refused to collude in this denial. Rather, we were determined to face directly into what was happening.” This was exactly what I wanted to witness – and I did!
Second, I felt I knew very little about the actual process of memory and functional loss accompanying Alzheimer’s and – aware that I and my family and friends were growing older and therefore more vulnerable to this disease – I wanted more understanding, should it directly strike my world. As we are tending to live longer, a higher and higher proportion of us can expect to be challenged by Alzheimer’s. And, I have to say, reading this reflective account of a personal journey has more than satisfied my hopes on both counts. I now have a better idea of what to expect and what might reduce the suffering of both carers and those directly afflicted.
I am a lover of books – and particularly biographies and autobiographies – and there are several more reasons why this very personal (usually private) account of how it is to be both the sufferer of the illness and the carer/partner stands out for me as particularly inspirational and instructive. The author is the wife/lover/carer and she tracks with honesty and courage her many emotional swings and the practical demands on her physical energy as the illness of her 72 year old husband, ‘Hob’ progresses from diagnosis to death. She is really alive, vulnerable and ‘present’ in her story. And so is her husband and their love. It is, in fact, a love story, with many, many dimensions!
Hoblitzelle cleverly structures each chapter to tell their story as it unfolds, writing in the first person, but at the end of each chapter she provides a summary of ‘Reflections, Suggestions and Seed Thoughts’. This summary really helps you relate their story to your own experience. Hoblitzelle explains that she wrote these summaries for others living with Alzheimer’s so that the book could “serve as both companion and guide because we are bonded through the shared experience of dealing with this great challenge”. This feeling of including you, as the reader, in her story and in her learning is strong but never appears as the expert telling you what to do. This means that you not only learn about the many facets of living and dying with Alzheimer’s but you get practical pointers and psychological and spiritual perspectives that can help in caring for someone with dementia, as well as addressing one’s own fears about facing this disease. The clear descriptions of how mindful attention, recording and acceptance of everything that is experienced, emotionally, psychologically and physically, is inspirational and bolsters my determination to develop an ever more mindful and non-clinging approach to life – so that non-clinging awareness can stay with me in dying and death.
I thoroughly recommend this book to anyone interested in meeting illness, loss and dying with compassion and equanimity.