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A note to readers: This post was honored by BlogHer, the Women’s Publishing Network, with a Voice of the Year award for 2012. I have since retitled it and it will appear as Part One of Have You Met My Daughter? My Mother, Her Alzheimer’s, and Me in an e-book anthology jointly published by BlogHer and Open Road Media. I am working to complete Have You Met My Daughter? and will post forthcoming essays, in serial form, on this blog.

A person with dementia (or Alzheimer’s Disease) suffers two deaths. The first death occurs when you discover the illness taking hold, erasing the vivacious mind and the vital spirit of the person you once knew. The second death is when the physical body expires. For these reasons, a bereaved person who loses a loved one—first to dementia, later to death—grieves twice. And although much has been written about mid-lifers—the so-called “sandwich generation“—who are caught between caring for ill or elderly parents while still raising children, perhaps there is room in the literature for one more account. This November, to mark National Alzheimer’s Disease Awareness Month and National Family Caregivers’ Month—and in honor of my mother—I am beginning to write a series of essays about how I loved my mother and how I lost her—not once, but twice.

“Have you met my daughter?”

This was the question my mother, who had impeccable manners, regularly posed to co-workers or acquaintances when introducing me to them for the first time.

“Have you met my daughter?”

This was the question my mother regularly posed to the women seated with her at a table in the secured-wing of the assisted living facility where I regularly visited her. Without fail, each and every time I entered the room, she would ask these same women:

“Have you met my daughter?”

There was, of course, tremendous solace in the fact that despite her illness, my mother did recognize me as her daughter. Nevertheless, it was heartbreaking to see how her memory, her very sense of self, had deteriorated.

The signs had been there for a while; it just took time for me to connect the dots. My mother had always been what used to be called “high-strung.” She suffered from panic attacks, and was fearful of many things, including learning how to drive after my father died.

She had also always been something of an pack-rat. Today, there is a name for this: compulsive hoarding. But at the time when I was grappling with this issue in terms of my own mother, I did not know it was an illness for which there might be a treatment; I simply put it down to another of my mother’s eccentricities. I would clear out as much of the clutter as she would permit (there remained piles that I was forbidden to touch), and a week or so later, my efforts were obliterated. It was not at all unlike Sisyphus pushing his boulder up the mountain.

After several years of this, the hoarding had gotten so out of control that I began to fear for my mother’s safety. I was able to convince her that she needed help; she allowed me to hire a cleaning woman to do her laundry, dust, vacuum the floor, and keep the bathroom and kitchen clean.

It was ultimately the cleaning woman—or, more to the point, the existence of the cleaning woman—which brought home to me the awful realization that something was far more seriously wrong with Mom than eccentric hoarding.

She and the cleaning woman didn’t hit it off, largely because Mom did not like anyone else touching her things. The woman, goodhearted and a good worker, called me to complain about what she could see was a losing battle. I was struggling over how to handle the situation when it resolved itself. Mom called me late one night in a real panic; I needed to come over at once. There was a terrible problem.

When I arrived, she pointed to a hole in the dining-room window screen—no more than two inches in diameter.

“That woman you hired is stealing from me,” she said in a tremulous voice tinged with outrage. “Do you see that? That’s how she’s getting in. She’s sneaking in, crawling in through that hole.”

To be continued …

NOTE: The Alzheimer’s Association is not responsible for information or advice provided by others, including information on websites that link to Association sites and on third party sites to which the Association links. Please direct any questions to weblink@alz.org.