Losing Cissie, Saving Myself: The Perils of Caring for My Wife Through Her Memory Loss
By Peter Barnet
Peter Barnet tells the poignant story of his wife Cissie, their life together, and his experience caring for her as her memory faded.
Barry Lando, friend, editor and retired 60 Minutes Producer
“Writing with remarkable candor, Peter Barnet brings a new and unsettling focus to this moving account of his battle against his wife’s Alzheimer’s. We learn that those at risk from this terrible malady are not just those directly afflicted, but their caregiving spouses as well. Lacing his narrative with insight and humor, Barnet does not shy from expressing his private thoughts and feelings as he relates his couple’s daunting struggle.
Losing Cissie is at once a love story, a primer on how to manage spousal care and a warning of its perils. It should be required reading for the familes of the millions of Alzheimer victims. “
“How much time do we have?” I asked.
“Three–four years, maybe more, maybe less,” the neurologist replied.
“How will it evolve?”
“It is difficult to say because everyone is different. In time she will likely lose all her languages except Swedish.”
“Then I won’t be able to talk with her.”
“You will have to learn Swedish.”
“But how can she lose English? She has been speaking it every day for over fifty years. We are an Anglophone home. Her English is almost as good as mine.”
“Your wife will lose her English and her French and her German. It does not matter how long or how well she speaks them today. They are not stored in the same place in her brain as her native language…and she might even lose it, but that is rare.”
“Should I take her to Stockholm? Should we move there?”
“It would be better for her, certainly more comfortable to be in her own language and culture. Yes, it’s a good idea.”
“And you are certain she has Alzheimer’s?”
“After the PET Scan last week, I am ninety-five percent sure. The only way to be one hundred percent sure is an autopsy after death.”
“Will you tell my wife?”
“Only if she asks me directly. If she doesn’t, I simply describe Alzheimer’s as a memory disease. The word is terrifying so why put her through that? And she will forget it in one or two days anyway.”
The doctor wasn’t finished. He paused, and then leaned forward in his chair to continue. “Monsieur Barnet, I am so sorry, but you must prepare yourself for an even more difficult time ahead. You are most of all going to have to take care of yourself. Alzheimer’s is actually more dangerous for you than it is for your wife. Almost two-thirds of primary care giving spouses die before the afflicted one. Stress is a killer in old people. And you are going to be facing an incredible amount of it over the coming months and years. You’re going to have to find ways to deal with it—or you may very well die before your wife.”
His remark struck me hard. It sums up the terrible quandary for growing millions of elder people like myself—loving caregivers to spouses who are victims of dementia and Alzheimer’s.
In a way we need more aid than our afflicted spouses. At this point, medicine can do very little but delay their fate…and even that is uncertain. We, on the other hand, must care for our spouses, while at the same time avert the fate that could be in store for us if we do nothing to deal with our own situation.
It is for that reason that I chose to write this book—as a tale of my wonderful life with a marvelous woman—but at the same time a primer on what a caring spouse can do to aid their better half, and at the same time to prolong their own life.
- Peter Barnet