If you want to know what it’s like to live with someone with Alzheimer’s Disease, read Keeper: One House, Three Generations, and a Journey into Alzheimer’s, by Andrea Gillies. Gillies, a British author, and her family took her in-laws into their home when the older couple could no longer live independently. Her mother-in-law Nancy had Alzheimer’s, and her father-in-law Morris had limited mobility.
I read Keeper about the same time my family decided to move my mother, who has Alzheimer’s, into an assisted living facility. We were dealing with the emotions of that decision, and with her trauma and ours resulting from the move. I read Keeper wondering how other families care for parents with Alzheimer’s, and I got in Keeper one family’s horrible journey from bad to worse as Nancy’s disease progressed.
Gillies kept a journal during the years she cared for her in-laws. Her journal provides raw details about Nancy’s loss of self. The book is brutally honest about the impact of this disease on the patient’s thought processes and behavior. Nancy had been a well-groomed, sociable woman, and became someone who swore at and slapped her grandchildren, fought bathing, would not eat with silverware, and played with her feces.
For three years, Gillies and her family dealt with Nancy’s mental deterioration and Morris’s physical decline. Morris, who should have been involved in decision-making about Nancy’s care, was unable to understand or to accept the ravages of her disease and increasing need for supervision, which left Gillies and her husband to manage the situation. Finally, after three years, they placed the couple in an institution.
Gillies portrays the difficulty of conversing with someone with dementia perfectly. In Chapter 1 of Keeper, we meet Nancy when, dressed in several layers of cardigans, she asks
“But where is my family. Are they coming for me?”
“We are your family, honey,” I [Gillies] soothe.
She laughs disdainfully, shaking her head. “Either you’re a liar, or I’m going mad.”
And, of course, the sad thing is that Nancy is going mad. A few pages later:
“I don’t know where I am,” she sobs, “I don’t know what I’m supposed to be doing.”
My family has had similar conversations with my mother. Unlike many Alzheimer’s patients, including Nancy, my mother has not been combative. But she doesn’t know where she is or why she’s there, and she asks often what she is supposed to be doing. She has always been someone who did what she was supposed to, and she is frightened not to know what comes next.
Gillies describes the neurological research into what happens to the brain as it deteriorates with Alzheimer’s. These were the sections of the book I found the least compelling, but other readers might like the science-based description of the disease. I was more interested in the behavioral aspects Gillies describes – the impact of the disease on the behavior of patient and caregiver alike. It’s in the caregiving that most people first encounter Alzheimer’s, and where we live on a daily basis.
Gillies also reflects on the philosophy of self. Who are we without our memories? Who are we when we cannot conform to societal norms? When are we no longer ourselves? Anyone who has dealt with patients with dementia has asked these questions. We lose the person the patient used to be, the person we loved, long before death. The slow loss of our loved one is harder to deal with than their increasingly toddler-like behavior.
But it is hard to take the time for reflection when we face the daily challenges of caring for someone who becomes less logical every day. As I read Keeper, I reacted to Gillies’s philosophical musings almost with a sense of dread. I wanted to take the time to ponder the issues she raised, but I knew that waiting for me on the next page was yet another vignette describing her family’s journey through the hell of dementia.
In some ways, the hell that Gillies encountered was of her own making. Keeper describes how Gillies, her husband, and their three children moved to a drafty old Victorian mansion in a remote village in northern Scotland. They opened a bed and breakfast at the same time they took in Nancy and Morris. Gillies’s husband traveled extensively on business, leaving Gillies with the primary responsibility for the care of his parents, as well as the bed and breakfast guests.
Coping with paying customers and aging in-laws in my home would have been more than I could have handled, particularly with children still at home. And I only had two kids. What was she thinking? I asked myself. I had to remind myself as I read that each family approaches the aging of their relatives differently – much like Tolstoy’s admonition that every unhappy family is unhappy in its own way.
Perhaps part of the theme of Keeper is that each family has to find its own way through the morass of elder care options, when none of the options are perfect. What is best for Mom? How can I keep Dad safe? There is no single set of answers to these questions. And both the questions and the answers change as months and years pass.
I was involved in managing the healthcare plans of a U.S. company for many years, so I was intrigued by the British national healthcare system that Gillies describes in Keeper. The British system certainly doesn’t seem preferable to the U.S. system. I reminded myself as I read that Gillies was burned out by elder care and struggled to find her way through the British system. Perhaps she wasn’t the most objective person to describe how British healthcare works.
But then, most families struggle to learn about their healthcare options, particularly around elder care. We avoid dealing with the healthcare bureaucracy until we need it. In the U.S. I’ve seen families use Medicare, Medicaid, private health insurance, private long-term care insurance, personal financial resources, and a hodge-podge of paid and unpaid caregivers to handle the increasing needs of relatives with dementia or other problems.
According to Gillies, she and her family essentially had to tell the British healthcare providers that the family could no longer cope with the care of her in-laws before the couple could be placed in an assisted living institution. In the U.S., it is easier to move disabled elderly relatives into care, so long as you have money. Or so little money you qualify for Medicaid. Which system is better? Hard to say.
And do the details of the healthcare system really matter, when a family is caught in the emotions of dealing with a loved one’s deteriorating physical and mental health? No one wants to see their parents or spouse decline and lose their independence. No one wants a loved one institutionalized, even when the institution provides better care than can be provided at home.
Keeper is an uncomfortable book to read, but it realistically portrays the brutality of dementia. With one in three seniors now likely to have some form of dementia by the time they die, we are all likely to encounter the problems that Gillies describes at some point in our lives, with someone we love. Are we ready?