Underlying this powerful and educational Alzheimer’s book is an enduring love story lasting over half a century. The author discovers that getting relief for her husband's Alzheimer’s is not easy; not every treatment works for everyone. But she finds a surgery, using the patient’s own body, as safe as any for heart disease or cancer. Understanding it was neither a cure nor prevention, and seemingly bizarre, she had it for her husband anyway, resulting in dramatic reversals of many severe Alzheimer’s symptoms. Most ensuing patients also improved. She details their life together, his progressing condition; research leading to her decision; references to easily access; startling Alzheimer’s statistics; warning signs; and a check-list of what to do at the first suspicion of the illness.
Betty Weiss, author of the best-selling book “When the Doctor Says, Alzheimer’s: Your Caregiver’s Guide to Alzheimer’s & Dementia”, has helped countless families to better cope with this distressing and mysterious disease. Based on a decade of research and caring for her beloved husband, it offers easy to understand explanations and actions to implement, caregiver-to-caregiver, to help ease this life-altering experience.
In her latest book, “Alzheimer’s Surgery: An Intimate Portrait”, she has moved from the caregiving side of Alzheimer’s to the personal story of the more than ten years she and her husband lived with it. She brings it to life, exposing it for all to see, and hopefull, understand. The reader is lulled slowly into its first vague symptoms, only to be suddenly and quickly drawn into a page-turning true story surpassing fiction. Through all her research, too many doctors, ineffective meds, different treatments, tears and joys, the yo-yo rollercoaster ride of Alzheimer’s that is impossible to get off, she vividly paints an intimate portrait of her husband, their marriage, Alzheimer’s, and not incidentally, herself.
Before writing her Alzheimer’s books, Betty Weiss had numerous articles published in newspapers and magazines. Now, after her personal experience, she believes that almost everyone who has lived with Alzheimer’s is forever changed, and that only other non-professional home caregivers who have lived it can fully understand what others are going through. A high number of former Alzheimer’s caregivers volunteer in nursing homes, or with hospice, as she has done. She says, “I cannot leave all my hard-earned experience and research behind when so many families still need it. When I share and help others, it’s a tribute to my husband, what he endured, what we went through-hard as it was-a good man, he lived a valuable life, none of it should be thought of in vain.”
Every year we went to Paris. Our daughter Debby lived there and Bernie was familiar with the neighborhood around her apartment. He’d buy croissants at the boulangerie across the street, walk to Gare de Lyon for the English newspaper, pick up the petits garcons from the nearby grade school, and discuss computer maps with her husband, Jean-Francois. We’d walk along the Seine, or watch the mower cut the grass on the sides of the Palais Omnisports. But on this trip, our first since his retirement, his behavior was bizarre.
Although it was a straight shot from our hotel to Debby’s, Bernie would get confused walking there, once he walked off with a knot of people going in another direction. He’d repeat something immediately after he’d said it, or repeat what someone else had just said, and he wasn’t following conversations. Often he seemed apart from whatever was going on and sometimes he talked endlessly.
I asked Debby if she had noticed anything different about her Dad recently, and she said she’d seen odd things for over a year. On the phone, back home in Los Angeles, our son Matt said that he and his pit crew had been re-checking everything Bernie did on our race cars for a long time. So it wasn’t just me.
It was easy to attribute his actions to the stress he had about the declining aerospace economy in Southern California and wanting to sell his transformer business during such troubled times. I knew I’d been denying what I saw happening, but sometimes that’s just my way. Denial can be a perfectly good defense, and often as not, if I denied something long enough, it went away. But this had been gnawing, it wasn’t going away and it couldn’t be denied any longer.
Now, whatever ‘it’ was, it was definitely in my face. I had to find some answers, get my feet on the ground, and I could hardly wait to go home to see our family doctor. I thought I’d started on the road to putting our lives back on track. Instead, I had no idea that I would be embarking on an uncharted journey, the length and depth of which I could never have imagined.