I am stunned and saddened to learn of the death this week of “Rick”, who was so helpful to my husband, Jim, during Jim’s illness. I will remember with profound gratitude and my heart goes out to his friends and family.
“Because there has been a sudden increase in accounts of dementia in the arts, I was prepared to skim this book, thinking there might not be new things for me, but it was gripping. … You need to be strong to read this. … A great strength is that there is a web address where you can go and give direct comments about what you think of it. The book is therefore a dialogue with others.”
What was it like?
This book is an account of the author’s nine-year battle to care for her husband who had Lewy Body Dementia. Dr Jim Tierney was an educated, handsome, well-loved man, who was struck down by this disease, but stayed at home with the support of his wife until he died. By the end of his life he was totally dependent on groups of home care staff, some of whom were wonderful and some were dreadful. Because there has been a sudden increase in accounts of dementia in the arts, I was prepared to skim this book, thinking there might not be new things for me, but it was gripping. It is accessible to any reader, and a carer might learn from Elizabeth Tierney’s experience, even though it was in the United States. The contrast between the attitudes of poor care staff and the attitudes of the best is phenomenal. It shows what a difference you can make as a care worker or nurse.
What were the highlights?
Elizabeth Tierney is a gifted communicator. Her pen pictures of staff bring them to life. It seemed that they had often not been trained in dementia care, but to complete time sheets. “It’s Jim’s fault he’s not wearing any underwear”…”I tied his shoelaces together because he was playing with them…” His wife asks was it him surfing rappers’ websites on the house computer, or turning on the TV soap operas? When Elizabeth pleaded with one member of staff to talk to him rather than about him the staff member was startled and said “Oh! You want me to treat him like a REAL person.” Her description of marvellous sensitive skilled carers paradoxically raises issues about “ownership” of the patient, where her role as wife was being sidelined by their technical skill and intimate involvement with the man who was once her lover, and her rock.
Strengths & weaknesses:
You need to be strong to read this. In my case, I was more interested in Dr Tierney’s early life after I had read about the end of it, and I went back to read this at the end. A great strength is that there is a web address where you can go and give direct comments about what you think of it. The book is therefore a dialogue with others.
Who should read it?
Any nurse working in dementia care, or supervising health care assistants or home care workers would benefit from reading this book. But it is strong stuff, so be prepared to weep. Think of the awesome resilience of the author the next time you start to say that a complaining relative is “just feeling guilty”. It’s always much more complex.