Jan's Story: Love Lost to the Long Goodbye of Alzheimer's tells the story of Barry Petersen's struggle as his wife declined into the confusion of Early Onset Alzheimer's Disease at the young age of 55.The story is heartbreaking but also inspiring as Barry conquers his loss and moves through it.
Alzheimer's Disease destroys brain cells causing problems with thinking, memory and behavior. It is progressive and ultimately fatal. Early Onset Alzheimer's Disease, defined as a diagnosis before the age of 65, is particularly devastating because it can be more aggressive, progressing quickly and rendering its victims significantly handicapped and unable to conduct a normal daily life. The person left is merely a shell of the their former self and is often unable to care for themselves at all. The impact of the disease to the patient's family is tremendous - in addition to the horrific loss of their loved one before their eyes, the family must also deal with the logistics of providing care for the increasing limited patient and the financial burden of that care. Barry Petersen's story follows that journey and beyond.
Jan Petersen first showed signs of being "altered" while they lived abroad when Petersen was posted outside the US for his work as a network reporter. The event that precipitated her diagnosis at age 55 was dramatic and also had many hallmarks of the disease. Although she returned to "normal" after the approximate 3 day episode, her behavior, memory and personality began to show signs of decline. Barry devised ways to keep his wife safe - employing friends to take her shopping, managing all her medication, ordering in so she wouldn't have to use the stove and perhaps forget to shut off the burner. All the while, he mourned the loss of the Jan he knew as pieces of her slipped away. It was particularly difficult to read about Jan as she became antagonsitic and fought with Barry - her sunny disposition was a part of her character that drew Barry to Jan so I can imagine it must have been horrible to see that sunny disposition replaced with anger and vitriol.
There were some choices that Barry made that seemed unusual but I cannot judge without having been in his shoes. For example, while posted in Asia and after Jan's diagnosis, Barry shuttled the couple between Japan and China every few weeks. For someone with memory impairment, it must have been very disconcerting and scary to be in a different country every few weeks - different apartment, different friends, different currency. At the same time, Barry could only afford to continue to care for Jan's increasing care by maintaining his job which required this travel. It is not surprising, then, that Barry was the focus of criticism from Jan's family and friends who felt his decisions were not in her best interest and even questioned if Jan was really as impaired as Barry had indicated. To suffer this judgement must have been terrible as he also lost the love of this life.
Althought the book is entitled "Jan's Story", the story is just as much Barry's. It is the story of his loss, his hitting rock bottom as the rigors of being a caregiver completely wore him down and the story of his renewal as he recognized that his wife was lost and he needed to move on. I appreciate that Barry shed a light on this devastating disease - how it destroys the patient but also the family and caregivers. It seems the caregivers are really the unsing heroes of this fight and there is a need to figure out new ways to adequately support patients and families through this disease as its incidence rises. However, what I most appreciated about this story was the courage shown by Barry in moving through this horrible time in his life and pulling himself from the depths of despair - his story is inspiring and gives hope to anyone facing a terrible loss.
Barry will donate a portion of the proceeds from the sale of this book to the Alzheimer's Association - you can also visit their site for information about the disease, resources for families and patients, and information about how to help.
Thank you to Tricia from Media Muscle for providing this copy for review.