This is a very moving account of the personal journey, from diagnosis to death, of a close and loving couple who were not afraid to share their experience of Alzheimer’s fading and slow death. 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 for two reasons. First, both the author and her husband are long-term meditators and, as such, were committed to attentive and compassionate observation of experience, accompanied by a combination of acceptance and action. As Olivia Hoblitzelle puts it: “We saw that the Buddhist teachings were a container to contain the changing realities of illness, that they could offer useful perspective as well as inspiration. We all know, on some level, that we will face aging, death, and death, but our youth-oriented culture is steeped in denial and phobia about these issues. Hob and I refused to collaborate in this denial. Rather, we were determined to confront what was happening head-on.” This was exactly what I wanted to witness, and I did!
Second, I felt that I knew very little about the actual process of memory and functional loss that accompanies Alzheimer’s disease and, knowing that my family and friends and I were getting older and therefore more vulnerable to this disease , I wanted more understanding, in case it directly affected my world. As we tend to live longer, an increasing proportion of us can expect to be challenged by Alzheimer’s disease. And, I must say, reading this thoughtful account of a personal journey has more than fulfilled my hopes on both counts. I now have a better idea of what to expect and what could reduce the suffering of both caregivers and those directly affected.
I am a lover of books – and in particular biographies and autobiographies – and there are several other reasons why this very personal (often private) account of what it is like to be both sufferer and caregiver/partner stands out to me. me as particularly inspiring and instructive. The author is the wife/lover/caregiver and honestly and courageously tracks her many emotional changes and the practical demands on her physical energy as the illness of her husband of 72 years, ‘Hob’ progresses from diagnosis to death. She is really alive, vulnerable and ‘present’ in her story. And she is also her husband and her love. It is, indeed, a love story, with many, many dimensions!
Hoblitzelle deftly structures each chapter to tell his story as it unfolds, writing in the first person, but at the end of each chapter he offers a “Reflections, Suggestions and Initial Thoughts” summary. This summary really helps you relate her story to your own experience. Hoblitzelle explains that she wrote these summaries for others living with Alzheimer’s disease so that the book could “serve as a companion and guide because we are united through the shared experience of meeting this great challenge.” This feeling of including you, as a reader, in their story and in their learning is strong but it never comes across 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 disease, but also gain practical advice and psychological and spiritual insights that can help care for someone with dementia, as well as address your own fears about facing this sickness. The clear descriptions of how mindfulness, registration and acceptance of all that is experienced, emotionally, psychologically and physically, is inspiring and reinforces my determination to develop an increasingly conscious and attachment-free approach to life, to that consciousness free from attachment can stay with me in dying and in death.
I highly recommend this book to anyone interested in facing illness, loss, and death with compassion and equanimity.