WHILE MARGARET AND I battled our mother’s 15-year Alzheimer’s disease, we also battled one another, as well as pretty much everyone else. Or that’s the way it still feels, even all these years later. And maybe nothing got us mixing it up as did the suggestion by one friend that we explain her fate to our mother and let her take her own life. There were such vast differences in how Margaret and I viewed our mother’s care and treatment, and ultimately her fate. Never was the she said/she said aspects of our lives more vivid, and never did I realize how universal this dynamic can be. Until now, thanks to Zoe FitzGerald Carter’s new book.

All of that drama—and more—is captured in this beautiful memoir called Imperfect Endings. We have the pleasure of hosting Zoe FitzGerald Carter here at TSP, talking to us, and answering the question of how writing about her mother, who struggled with Parkinson’s disease and decided to kill herself, affected the three daughters–Zoe, and her two sisters.

Despite having written extensively about our differences over our mother’s Alzheimer’s, I found this book to be utterly illuminating, as I did the author herself and her take on sisterhood.

Please join me in the TSP Galleries, and meet Zoe FitzGerald Carter.

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IT IS OCTOBER, THE HARVEST, that great time for taking stock. Me? I’m grateful for many things, particularly the friendship and love of Margaret, my only sibling. We didn’t always see things the way we do now, and in that we missed huge chunks of each other’s lives. The reason for our separation? Our mother. The coming together? I credit time and patience and adult wisdom. And thinking about what might make a good harvest tale, I’m taking a chance here, and offering one about our mother, though I know Margaret will agree that here on the blog, at least, only good comes from who she was.

Our mother’s name was Allene. She is a descendant of Ethan Allen, the Revolutionary War hero, and so her parents gave her their own form of the family name. As a child she was a tomboy. In college, she studied journalism and went on to become the Society Editor of The Long Island Star Journal, a New York daily newspaper that folded in the 1950s.

She became a wife and mother, a Girl Scout leader and a Visiting Nurse volunteer, and when my sister and I were raised, she went back to school and got a master’s degree in education and began teaching at a Montessori pre-school on the Lower East Side of Manhattan. All in all, she was lovely, but gritty.

Then, somewhere in the 1970s, my mother’s mind went to battle with something, and lost. She became forgetful, angry, hostile and incompetent. She was losing her mind in handfuls. To Alzheimer’s disease. She was barely 50 years old.

Within five years she could no longer speak or recognize my sister or me. And while we still did things together, she was always agitated and seemed uninterested in anything but watching television and smoking.

Except on Sundays, when we went to church. There, she was calm. On the last day before she went into a nursing home, I took her to church as usual.

I remember leaning my head against the side of the pew and weeping. And then I noticed that my mother was singing all the hymns. Then she said all the words of the Lord’s Prayer. This from a woman who could no longer speak my name.

Not long ago, I got involved in a project that took my mind back to those moments of refuge on Sunday mornings. Our goal was to restore the right to worship to people from whom it had been taken away.

Without meaning to do so, we bar patients from places of worship at the moment they and their family members need it most. When someone cannot sit still, or be quiet or remain continent, we discourage their presence in our churches and synagogues. We don’t want them to disrupt the ceremony and the spiritual solitude.

So one autumn a few years ago, a bunch of us in Troy, New York, put together a service for people like my mother, around the time and theme of the harvest. We wanted to celebrate what we had, as opposed to focusing on what we had lost to the illness. Our group included a rabbi, an Episcopal priest and a Presbyterian minister. The service intermingled the themes of Sukkot from the Jewish tradition with Christianity’s harvest hymns and prayers. We invited patients and their caregivers. I wrote a prayer for the caregivers and one for the patients. We convinced the priest to keep his sermon under five minutes, we used a lot of music, and we encouraged walking around throughout the service.

When it came to the traditional offertory, baskets of apples were circulated; instead of collecting money, we hoped to give something to the patients and their families.

From patient to patient, I carried a huge African basket filled with apples. One very ill woman was furled in a wheelchair, her head slumped on her chest, her hands tightened into the gnarls we associate with the very last days of life. Her caregiver shook her head, indicating that the woman would not be able to hear or understand me. But I wanted the old woman to have an apple. I got down on my knees and tried to make eye contact. It was impossible. I tried to open one of her hands, but it was like a knot. Giving up, I got up to walk to the next patient.

At that moment the offertory hymn began. The opening bars of “How Great Thou Art” sounded from the organ and my husband, an accomplished baritone, softly began the words.

The woman uncurled. She straightened up in her wheelchair. At the top of her lungs, she sang every word.

The caregiver gasped. I literally staggered back, then watched as the joy and triumph of this woman revealed itself to us. She sang from someplace that most of us thought was long gone.

As the song ended, she curled back into her chair. But we had reached her.

There, amid the losses that had been diagnosed and charted, amid the grief of a family at what had looked like the end of life, was this offering of hope, this small bounty, this plenty, this harvest tale.

(photograph from Churchill Farm)

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On May 10, HBO begins airing a three-part series on Alzheimer’s disease. It’s a subject that the TSP sisters know something about. In 1983, Marion wrote the first, first-person account of the illness ever published, in The New York Times Magazine. This week, she wrote an opinion column about it in The Los Angeles Times.

I LOVED HER. It was as simple and as complicated as that. My sister didn’t love her, or she did until she didn’t, but then our mother got sick, we had to care for her, and then things got complicated for everybody. We cared for two different mothers. That’s the shortest explanation for what happened to us. The longer story is far more complex.

When I was 22 and Margaret, 24, our mother’s mind went to battle with something and lost. There’s her picture, above (and also sometimes in the rotating image top right), walking next to us while we ride our bikes. At that time she was my favorite tennis partner, and crew on my sailboat, the woman who taught me to water ski when I was 5 and who told me to live each day as if it were my last. In this photo she is 38.

When our mother was diagnosed with Alzheimer’s she was already angry, hostile and completely incompetent. Within a short time she would be incontinent. At the time of her diagnosis she was 51.

In the early days I would always say that she was losing her mind in handfuls, a phrase that was picked up and reprinted in a book of quotations, after I chose to write about her, and us, in The New York Times Magazine, in the first, first-person account of the illness. Strange as it seems, that was in 1983, before nearly anyone but the families affected by it had heard of Alzheimer’s.

“I thought my mother was going mad when she killed the cats.” That was the opening line of the piece that ran in the magazine, as well as the scene that opens the book I wrote about her.

My new piece on the subject is appearing in Sunday’s Los Angeles Times Op-Ed pages, and looks back over the 26 years since then.

My earlier writing about our family’s struggle with Alzheimer’s disease always irked Margaret. And for good reason. We didn’t lose the same mother. I understand that now since I hear it all the time from people who are caregivers: One sister loved their mother unconditionally, the other did not; one moves in with the parent while the other moves away, never visits, but calls from Florida to say the live-in is doing everything wrong. If there are more than two siblings, maybe the third chooses right then to confess her deepest secret. The fourth? Well, someone has to run off with all the money, or at least sue somebody else. What is it about caregiving that whacks up families into the kinds of stereotyped roles that would be better left on cutting room floors?

Maybe your experience was different. Maybe caregiving brought out nothing but the very best in everybody during the very hardest of times. Either way, we’d love to hear about it as we share our tale here with you in honor of HBO’s brave decision to take on Alzheimer’s, and our great hope that soon this disease will be cured.

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Click here to view the embedded video.

WE ALL KNOW that at least one of our New Year’s resolutions should involve the sisterhood–being a better friend, staying in closer touch, listening instead of having only our say. So not to be a nag about this, but here’s another one to add to your list: Get involved in the research to eradicate a sister’s illness.

Chances are good that you run, walk, bike, stitch, knit, call, write a check, lick envelopes or in some other way show up in support of some good cause. For 15 years I’ve participated in a longitudinal study at New York University Hospital to study how brains age, in part to give back to the wonderful place that cared for our mother, an early-onset Alzheimer’s disease patient.

Over the years I’ve had my brain MRI’d, my gait measured, memorized alphabetized grocery lists and recited them backwards, and donated what feels like buckets of blood to help to find the cure for disease that caused my mother to lose her mind in handfuls. I’ve also written a lot about her and her illness, including a piece about the long term study for the Science Times section of The New York Times.

While I still participate in that NYU study, I think it’s now time to do something for a sister’s (or brother’s) illness. And I hope I choose well. This has been on my mind since hearing from those of you who commented on my post about losing a sister.

It was amid that correspondence that I read of Angela Lansbury’s recent loss of her sister to ALS, or Lou Gehrig’s Disease. In response, the actor has become the public face of the devastating disease and has taped a wonderfully effective public service announcement (above) for the ALS Association.

Talk about showing up. There are many reasons to love Angela, but this may be her best role yet.

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An article in TSP’s Sisterpedia offers details of the largest and latest breast-cancer studies involving siblings.

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