I begin with the caution that my "expertise" in grief is strictly homegrown. I'm not a therapist or a scholar, but a widow who lived with dementia for nearly 14 years in the person I loved most. It took me years to recognize that I was grieving for my husband in ways similar to the bereavement of death, yet very different, and not just because Pete was still very much alive and a big part of my daily life.
When I was finally able to identify grief as a major dimension of my caregiving, I began the search for books or other materials that might help me address my grief. I was shocked to find so little, and sometimes felt very angry when I got advice that did not fit. So I took early retirement, quitting my job to work on the project that became the book Voices ofAlzheimer's: Courage, Hope and Love in the Face of Dementia (Cambridge, Mass.: Da Capo/Perseus Books, 2004). In putting the book together, I wanted to see if I could collect anything helpful for other families who love someone with dementia. Many family caregivers do not identify grief as a dimension of their experience and do not get much help if they do.
My husband, Fred "Pete" Peterson, had been a teacher at Phillips Academy, Andover, Mass., and was happily enjoying retirement when we began to notice that his excellent memory was becoming less reliable. He was diagnosed with "probable Alzheimer's" in 1987 and died in 2001.
In the beginning, I had only occasional spells of sadness, and those mostly came as I thought about the losses ahead. But as the losses grew, the sadness grew. It took me years after Pete's diagnosis to recognize my grief and face it. I think that's very common among family caregivers. Here's a comment from my friend Mary, quoted in Voices of Alzheimer's:
"I never recognized that I felt grief until recently. It was a word used to describe somebody going through a tragic emotional time. Never a word to be associated with me. Now I see that it started the day of diagnosis and it hasn't ended."
Many of us, like Mary, think of grief as a response to death, or to a calamitous accident or illness. But with dementia our losses come in smaller steps, and most of these losses are private events, not public information. Many families relate experiencing landmarks similar to mine:
* The day our doctor told me Pete should not drive;
* The momerit when Pete asked me his daughter's name;
* And, most excruciating, his placement into residential care.
I couldn't talk about such losses with many people outside my Alzheimer's support group. There, the focus was usually on coping with practical problems. We did talk about depression, and sometimes we shed tears, but looking back, I'm astonished that we seldom named grief or bereavement as a key dimension of our experience. How can you deal with an emotion you don't even name?
My fear of facing grief wasn't exactly denial, and it wasn't quite conscious. But I sensed I would be overwhelmed if I opened the door to grief. I didn't have time to be overwhelmed. My breakthrough was pretty dramatic, but it didn't happen until seven years after Pete's diagnosis, when I went to visit him in an adult daycare program. As I walked home, I was overcome with grief. I had no choice but to cry my heart out. That was a cathartic day. I began to face the grief; I began to learn that for me, it was necessary, once in a while, to take time to give myself wholly to my grief.
That day set off my search for materials that might help. In 1996, guides for Alzheimer's families barely mentioned the word grief. At the bookstore, I flipped through dozens of titles on grief. The books discussed death or the last months of a terminal illness; I found nothing about grieving losses to dementia. All the advice was to let go. How can you let go of someone whose care preoccupies your mind? How could there be 4 million American families living with Alzheimer's and no books recognizing our grief? …