Tag Archives: Dementia

My Mother’s Voice

12 Friday Oct 2012

Posted by in The Healthy Life, The Writing Life, Transitions, What's the Buzz?

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I wrote an essay—the first of many I will write—about my mother’s slide into the quicksand and darkness of dementia. I published it on my blog, and the editors of BlogHer honored it with a Voice of the Year Award for 2012. I’m proud of this, but not solely for the reason you might think. I’m proud of this essay because it exists, because I was able to write it at all. I managed to descend into that frightening pit of despair and start to tell my mother’s story, to return her voice to her, to leave something of her to this world that she left 12 years ago. This was not an easy thing to do, and I will have to do it again and again and again, until her story is fully told, until her voice is finally heard. It will be difficult, and I know there will be times I’ll be afraid to continue.

She was an intensely private person, but in this respect I think she would want me to keep going. She would want people to know, because, sadly, she was one among millions who have disappeared into the maw of Alzheimer’s, and who will continue to disappear until a cure can be found. Maybe if enough stories get told, if enough attention is paid, something that might be enough will be done, and the disease (the irony of my word choice isn’t lost on me) will itself become a memory. It happened with smallpox. It could happen again.

According to Alzheimer’s Disease Research, a program of the American Health Assistance Foundation, more than 5.4 million Americans are believed to have Alzheimer’s disease; by 2050, as the U.S. population ages, this number could increase to 15 million. There are nearly 36 million people living with dementia worldwide, and this number is likely to increase to more than 115 million by 2050.

The essay, “‘Have You Met My Daughter?’ My Mother, Her Alzheimer’s and Me,” is one of 80 essays representing 80 bloggers included in the Voices of the Year anthology, published by BlogHer in conjunction with Open Road Media.

The anthology will be available for download (from Amazon and iTunes) on Oct. 30, but advance orders are available now. Here’s what Amazon says about BlogHer and the book:

BlogHer is a unique media company created by women, for women, and—most importantly—with women, women like those whose voices you’ll read in this collection. Each year, BlogHer—the largest network of women who blog—hosts an initiative to identify the very best work from across the blogosphere. Submitted by the community, selected by a committee, and presented at the world’s largest blogging conference, the pieces presented here have it all because women live it all—online and off. Humor. Inspiration. Food. Family. Style. Sex. Politics. Tech. Career. Dreams. BlogHer’s Voices of the Year reminds us of the transformative power of blogs to connect us all via powerful storytelling.

My thanks to Elisa, Lisa, and Jory—the co-founders of BlogHer—for envisioning this project, and to Donna Schwartz Mills, a member of BlogHer’s conference programming team, for helping to administrate it. I’m humbled by the honor, and honored that my mother’s story will reach a wider audience.

Winning ‘Voices of the Year’ Post to be Published

08 Wednesday Aug 2012

Posted by in Midpoints, Relationships and Family Life, The Healthy Life, The Writing Life, Transitions, What's the Buzz?

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Mother with Alzheimer's

My mother, Angela Alyce Monia Abookire

Early readers of The Midlife Second Wife will remember this post about my mother, but since writing it last November, a few things have happened in its brief existence that justify a return engagement. The post, originally titled “A Tale of Two Deaths: Losing my Mother to Alzheimer’s,” received a “Voice of the Year” award at BlogHer’s recent conference in New York City. Out of some 1,700 entries, BlogHer selected only 110. This is quite an honor for me and I’m humbled by the recognition, since there’s such a huge talent stream flowing through BlogHer’s Women’s Publishing Network. I’m also proud to announce that the post will appear in an e-book anthology being published by BlogHer and Open Road Integrated Media. You might be familiar with Eileen Goudge’s novel The Replacement Wife. Open Road is her publisher. I’d say we VOTY winners are in extremely good company.

BlogHer Voice of the Year AwardI don’t believe that a publication date for the e-book has been decided yet, but as soon as the publishers make that determination I’ll announce the news here and let you know how you can purchase a copy.

Now that my mother’s story is going to have a life beyond the blog, I’ve retitled it. I am also preparing myself mentally and physically for the daunting task of completing her story—possibly for a future book. This post was originally intended to be the first installment in a series—and you’ll be able to read future installments just as soon as I can get them written—but now I’m rethinking the whole writing project. It’s quite possible I’ll end up with a book. We’ll see.

Here then, is my proposed first chapter of Have You Met My Daughter? My Mother, Her Alzheimer’s, and Me.

Have You Met My Daughter? My Mother’ Her Alzheimer’s, and Me

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-lifer’s—the so-called “Sandwich generation”—caught between caring for ill or elderly parents while still raising children, perhaps there is room in the literature for one more account. In November 2011, to mark National Alzheimer’s Disease Awareness Month and National Family Caregivers’ Month—and in honor of my mother, whose name was Angela—I began to write a series of essays about how I loved her and how I lost her. Not once, but twice.

“Have you met my daughter?”

This was the question my Mom, 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 Mom regularly posed to the women seated withher at a table in the secured-wing of the assisted-living facility where I regularly visited her. Without fail, each 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, Mom 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.

Mom 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 a 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 her 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 her safety. I was finally able to convince her that she needed help, and 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 larger than two inches in diameter.

“That woman you hired is stealing from me,” Mom 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.

The Midlife Second Wife Honored by BlogHer as a ‘Voice of the Year’

05 Tuesday Jun 2012

Posted by in The Writing Life, What's the Buzz?

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After considerable trial and error, one of the most important discoveries I made when I was a creative writing student at Oberlin College was finding my voice as a poet. Until I could tap into that intrinsic, pure, uniquely identifiable me, all I was doing was stringing words together with interesting line breaks. Over time, as a prose writer, I learned that my voice had different colors and tones, and that I could dispense with line breaks and keep sentences flowing, one after the other, to tell a story. This past year, as a relatively new blogger, I’ve experienced the twin thrills of immediacy and intimacy—by expressing my voice as The Midlife Second Wife, I began hearing from readers all over the world for whom, for whatever reason, my voice was compelling. Last week, I experienced another thrill: out of nearly 1,700 entries, readers and editors at BlogHer chose one of my posts and selected me as a Voice of the Year (VOTY) for 2012, in the category of Heart. (The other categories are Humor, Identity, Op-Ed, Parenting, and Visuals.) All in all, the jurors selected only 110 bloggers for VOTY. The awards will be conferred at the Community Keynote of BlogHer’s annual conference, held at the Hilton New York in August.

This is extraordinary recognition from an organization for which I have the utmost respect and admiration. As I begin reading through the other winning blog posts, it’s clear that I’m in phenomenal company. I extend my warmest congratulations to the other honorees, my deepest thanks to the judges, and my heartiest appreciation to you, my loyal readers.

You can read my winning post, “A Tale of Two Deaths: Losing My Mother to Alzheimer’s, Part I,” by clicking this link. As difficult a subject as this was to write—I posted this last November and found it was too painful to go on—I will be completing the series. My mother deserves to have her story told, and I dedicate my BlogHer VOTY award to her memory.

A Tale of Two Deaths: Losing My Mother to Alzheimer’s—Part I

14 Monday Nov 2011

Posted by in Relationships and Family Life, The Healthy Life, Transitions

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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.