If you read to the bottom of my previous post, you might be surprised to learn that there is one book I am more than happy to just give to anyone who might find it useful.
Miles to Go: An Alzheimer Journal is free for the next few days on Amazon. Beyond that, since the platform limits how long I can offer it for nothing, it’s the minimum of $.99. Anyone who wants the book but doesn’t like buying online can just ask me for a PDF any time using this simple form.
I initially published the whole thing on a previous blog so anyone who came across it could read freely. Having it on Amazon makes it possible to reach more people.
Since the scourge of Alzheimer’s Disease remains an awful reality for so many, I hope others can learn from my family’s experience, as did the reader who included this in an online review:
“I even took notes because the emails showed subtle changes that many other family members could not see and yet is what everyone in this type of situation is going through.”
It is good to know that the residents are treated with respect and dignity and are helped to live as normally as possible in their new reality. The sadness comes from the knowledge that there is no cure for what afflicts them and that so few can live in Hogewey.
The article says it might be impossible to make such a place work in the United States. We do have some good assisted living facilities for those who can afford them, but far too many families don’t have that luxury.
It seems there are lessons we can learn from the Dutch village experience, and big questions we need to ask. One question the article raises is particularly intriguing: How much of dementia is a result of disease, and how much is a result of how we treat it?
My question: Are we ready to help the millions more who are likely to need dementia care in years to come?
Her friends called her Mickey when she was a little girl. I only learned that when I was sorting through her things one day, deciding what to throw away and what to keep. I read the little book where her eighth-grade classmates had signed their names and written little rhymes and wished her well in life. Some of them called her Mickey, and a few of them called her Rose.
Her name then was Rose McMurphy. At least that’s what I’ll call her here. I won’t use her real name — or my real name — because I don’t want to embarrass her. She is a proud, strong-willed woman who has Alzheimer’s Disease. She is my mother, although much of the time now she thinks she is my older sister. I was with her the day the neurologist read us the test results, telling her that she was in “the early stages of a dementia illness, Alzheimer’s type.”
“Very mild, at this stage,” he said. “Dr. Andersen thinks she’s probably competent to manage her affairs for now,” he added, looking at me, “but you need to begin making plans for progression of the disease.”
She referred to me as her brother three times in this brief meeting. When the doctor left the room for a few minutes, Mom and I exchanged only a few words.
“I don’t ever want to hear that word again,” she said quietly, with a look of profound distaste. I assumed she meant the word “dementia,” which had struck me as a particularly awful-sounding word when said right out loud. But it was the other word.
“Alzheimer’s,” she said. “I don’t ever want to hear that word again.”
I found out later that she meant it quite literally. In the following weeks, my siblings and I and our families came to learn that she really wasn’t competent to manage her affairs and most likely had not been for some time. We came to the conclusion she could no longer live alone safely in the house we grew up in. We learned about “therapeutic lying” and how easy it is to con your mother literally out of house and home if you really have to.
Over the course of the next year, we also came to the realization that we are among the most fortunate of victims of Alzheimer’s Disease. And I never use “that word” in front of my mother, because she is just fine and she has no complaints and she has always been blessed with good sleep — as she has told me countless times.
Most of this story will be told through messages sent by Email between me and my sisters and my brother and our husbands and wives, and aunts and uncles and cousins and others who have crossed our paths or helped us along on this journey. I saved these notes originally to help me keep track of when certain things happened, so I could document them as necessary in my role as the one designated to look after my mother’s affairs. It was a handy place to keep names and phone numbers of my mother’s friends, of people or agencies I had to call — the thousand and one details you have to learn to run another person’s life. Later, the “Alzheimer’s log,” as I began to call it, helped me keep track of various people’s itineraries as they planned to come and visit or to fly Mom off to see them.
My wife, who is a writer, too, said after a while that maybe I should write about this whole process. I told her I didn’t think I would be able to do that, but maybe she could write about it so people would understand better the dismal ending that may lie ahead for many millions of us if no cure is found. I don’t think she ever gave me a straight answer, but I kept the notes, and for the most part they speak for themselves.
Some of the entries after the first few months are from another journal I’ve been keeping off and on for a while. A social worker I talked to thought it might be a good way for me to deal with the situation, which I finally realized I wasn’t dealing with very well at all. My wife, again, played no small role in my coming to that realization. I owe her much.
For several months, I thought my own personal “BJS Journal” and the Alzheimer’s Log that chronicles my mother’s illness were two separate stories. Now, I know, they are very much parts of the same story, so they come together here — as intertwined as our lives. I will always be my mother’s son, even though she doesn’t always remember me that way. In the late winter of 1998, I submitted an essay to a magazine. It was about how a Sister Rose had made my high school sophomore English class memorize and recite “Stopping By Woods on a Snowy Evening” by Robert Frost. I wrote about how, even now, when I’m shoveling snow from my driveway on a winter’s evening, I stop and look off into the woods across the street and recite the poem we learned so well.
I sent my mother a copy of the essay, which she seemed to enjoy, but she thought it was a little strange that I would try to pass off Robert Frost’s work as my own. I tried, futilely, to explain to her that that really wasn’t what I was doing. She said it was her favorite poem, too. She still loves to recite the last few lines when we drive through the woods near my home.
She remembers that last part well, and I’ve heard her say it time and time again:
“The woods are lovely, dark and deep, but I have promises to keep. And miles to go before I sleep. And miles to go before I sleep.”
The journal begins in February 1999 and, as I write this, we still have miles to go….