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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I still remember when you called me in California, where I was living at the time, to say, “Something’s wrong with Mommy.”
She was just before her 50th birthday at the time, and already a widow; we had no aunts or uncles or cousins or grandparents, so I (the older sister, and about-to-be head of the family really by default, as Mommy declined in capability) came home and moved in with her, back into the family home.
Those were a span of hideous years, to put it mildly. Nobody even knew the word Alzheimer’s back then. And we were so young.
As for whether I loved her or not, well, she was my mother and I loved her; I just did not appreciate some of the decisions she made, the “secret” life she lived when she would disappear a day or two a week with some transparent excuse, and the dishonesty that we were forced to live with because of her choices. I did not like her very much.
It may help visitors, on background, to read about our two sides of the Mommy story a little bit:
About the photograph I found at age 9 that changed everything;
Or maybe our “25 Random Things About My Childhood” lists, first your version, and then mine.
And as for how I feel about your writing about this these days: *so proud.* I am proud of all the times you have spoken up (lobbying all these years for long-term care rights in Albany and D.C., lecturing and all of it). It was never an easy topic for you to revisit, but you did, anyway for the greater good. To help others.
In the throes of it, back in those days, I wasn’t happy to have our story told; no, you are right. The wounds were too fresh, the chaos too chaotic.
I was in my mid-20s and in a family support group for *spouses* of Alzheimer’s Disease (men and women in their 60s and 70s, except for me). The experts at NYU, where we both went for help, said my role (again, surrogate head-of-household, living with Mommy, her faux spouse really as they saw it) was no longer like that of a child of an Alzheimer’s patient. And you were in the children’s group, on another night of the week. How hard on us.
It is a wonder, thinking back, that we even know each other now. I expect many other siblings could say the same thing: It’s a wonder we made it through. But it really speaks to the bond that began when you showed up when I was 22 months old and ended my reign as an only child. :)
I will shut up now. Thanks for starting this important conversation anew. As Daddy would have said, you are a pip.
Grandpa changed so much the last years of his life. He lived with us after breaking his hip. He became violent after a few years and was put into a nursing home. After attacking the nursing staff he was committed to a psych center where he later died. Putting him there was the hardest thing my mother had to do in her life.
I admire anyone who cares for the elderly/alzheimer’s/infirmed etc.
Happy mother’s day to you.
Jim Eber
Well Marion, you have already heard so many of my stories about my father-in-law, written in your memoir class. His last few years were a maze of confusion due to Alzheimers. My husband really struggled to deal with it until a doctor showed him a CAT scan of his father’s brain. He said that once he saw the large voids on the film (his brain had atrophied due to the dementia plus previous strokes), he suddenly realized that his father was doing the best he could with what he had left. That realization gave him an opening to feel compassion for the man for the first time.
Hello, Jim. Thanks so much for bringing your own story here. That’s what we want: to give people a place to talk about this. How brave of you, and how generous. Caregiving can be a time of crisis for many. Getting the needed skills is essential to not only surviving, but thriving, in that time. I suspect many people will benefit from your candor. Thank you, and please come back.
Hi, sister-Sandy. It’s fascinating that your husband struggled until he saw the ravaging effects. I relate to that, as will so many others when they read it. Thank you for your generosity. It’s wondrous. Please keep following the TSP Alzheimer’s story and offering your thoughts. We treasure your comments.
Marion you were brave to share your family’s story. Margaret, you were right to be wary. It is reasonably difficult to unshutter windows to our personal world. Especially when there are so many levels of woundedness potentially revealed.
My father was a Roman Catholic priest who discovered he
wantedneeded a wife and family as deeply as he needed to serve God. That was it really, for him, to serve God, not the church. So he left.The church promptly excommunicated him. As did his Mother and the rest of his extended family, except for one older brother, Hector. My father referred to him as “The Count”, a veiled reference I never understood as a child.
Hector had divorced his wife to marry his secretary. This was unheard of in nice families in those days (late 1950s). As a result of pursuing his heart’s desire, Hector was also a “brother in exile”.
Hector and his wife Lillian were the only family members we ever knew on my father’s side. The rest of his relatives were, inexplicably to my brother and I, uninterested. The shame of his exile meant my father, with the cooperation of my mother, attempted to keep his past as a priest secret from everyone in his present.
When Hector was diagnosed with Alzheimer’s in his 80s, it both deeply saddened and frightened my father. It then fell to my mother to keep in touch, as my father’s fear became stronger than his need to connect.
Lillian cared for Hector as long as she could, until he became paranoid, and then violent. Hector spent the last few months of his life in a nursing home, in restraints. Lillian spent hours with him there, every day, until he died.
During this time period my young family moved from California to East Texas where the tiny Lutheran church we attended included an elderly man who cared for his Alzheimer’s beleaguered wife, all by himself.
When I inquired about respite care he explained there were no groups in our area, no resources close enough for him to take advantage of. He didn’t mind, he said. Caring for his wife was never any trouble. He owed her that, and more.
His welling eyes affirmed the truth in his words, but the fatigue was etched deeply in his face.
I researched and discovered (at that time) only Alzheimer’s relatives could begin a support group. The families in our area were so actively consumed with caregiving, they had neither the time nor the energy to organize.
Because I had my uncle Hector to claim, I was allowed to found a chapter of the Alzheimer’s Association in our area. It was the first caregiver’s support group north of the greater metropolitan Houston area, and we rapidly began to draw members from three surrounding counties.
I reluctantly turned leadership of the group over when we moved away. It had been hard to start up, but it was much harder to let it go. When I last checked, there were three different support groups active in that county.
I was never able to directly assist my step-aunt in her care for my uncle. I still feel gratitude for their including us as family after having been mutually shunned by their parents (my grandparents), brothers and sister.
Starting that support group was my small attempt to keep sharing the healing balm of sanctuary and acceptance originally offered us by Hector and Lillian. I had unconsciously discovered that need for acceptance and sanctuary is not singular to Alzheimer’s families, but can be something many families require and cannot supply on their own.
Sharing your story so many years ago doubtlessly offered healing to many who caught a reassuring glimpse of their own lives in your words. The stigma of Alzheimer’s may be melting away, but the need to know we are “not alone” is always there.
Dear Deb: How astonishingly generous this is of you to share this fascinating tale. Yes, as you say so beautifully, the “need for acceptance and sanctuary is not singular” to Alzheimer’s families, making your story universal. But then there is that uniquely wonderful part–all yours–of starting that support group. I bow to that in the truest sense of honoring what you did. Thank you, from someone who did 7 years in a family support group. I know how you saved lives; mine was saved in one. Thank you. Please come back.
That is a brilliantly crafted Op-Ed piece. You are a master, Marion. Awesome job.
Oh, Winetipper. How sisterly of you to offer such tremendous support. I appreciate that so much. Thank you.
Thanks for sharing your mother’s story, Marion (and Margaret). This is close to home for me too. My father died shortly after Christmas, after having had Alzheimer’s disease for 15 years. In some ways, we were more fortunate than most, as the course of his disease turned his personality from a driven, impatient, striving man to that of more child-like person with an appreciation of the good things in life – such as his garden. There was a difficult stage of erratic behavior at the very beginning, but it did not last that long. However, it was my mother (now 81), who did ALL of the care-giving, and who never complained when the incontinence issues and so on came on. My mother is now free of care-giving, and she is at her advanced age seriously considering doing that famous Santiago de Compostela pilgrimage with a tour group. She is training with daily hikes. She’s a tough cookie, and I have to laud her strength on this Mother’s Day.
Hello, Country Gardener. And welcome. Oh, dear. Fifteen years. I’m so sorry to hear it. We did 15, as well, so I understand the length of your challenge. Your mother’s story is wonderfully inspiring, and suggests that if we do what we really believe, we can thrive after–and not merely survive–the caregiving experience. Please stay in touch to tell us of her journey, and yours. With a mother like that you’ve got many adventures ahead.
Hi Marion: I will. I feel kind of guilty that I’m not prepared to go with her on her trip. Mind you, she has not asked me. She knows that I’m not fond of travel, or hardship. I was surprised that this was her dream, but then I told her to go for it.
Marion: bravo on such a strong, beautiful piece, persuasive words that keep your family’s story more relevant than ever and still helping others. A trade, indeed. Your phrase “pieces of silver,” and what those slim boxes hold for you & Margaret, will stay with me, simmering, for a long time.
An incredible post (and op ed) from Marion, and equally incredible responses. Having just had my (aging, but still vigorous and all together) mother move in with me and my family, I am on a different side of this road, and have no idea where it might lead. But I am so grateful to everyone for sharing their tales.
Country Gardener, prepare yourself. Your mother may still ask. Let us know if she does.
Thank you, Marilyn. Anything that simmers with you is nourishment to us all.
Hey, sister Paige. Thank you. Hope yours was a double-wonder Mother’s Day.
As someone who has known both of you for a very long time, and also someone who has been thru caring for a parent alongside a sibling —- in my case a brother, youger by five years —- i’ve long been impressed by the solidarity of the roach sisters thru a time that i suspect fractures more sibling pairs than it bonds and under circumstances more trying than most of us can even imagine. for me, one of the more stunning and blessed surprises following my mother’s death —- NOT of alzheimers —- was the way the architecture of a family changes when the “grown-ups” are both gone. michael and i were often excellent collaborators and sometimes hateful antagonists during the final 4 years of my mother’s life. we shouted terrible things at each other, by phone, the night she died, and barely spoke at her funeral. but the years since have brought us full circle. i see the way i was big sister self-righteous, thought only i could do anything right and under-valued his very different contibutions…… all the result of old baggage……..finally wanting to prove myself the “better” child, win my mothre’s elusive approval that he had always had. and he sees the way my obsessive attention to detail kept our heads above water at times when we might have glub-glub-glubbed even worse than we did. our reward now is each other………….in a way we never had before and never would have were it not for our shared and often contentious ordeal. he is my best friend [most of the time] and my b iggest cheerleader [all the time] and vice versa. and it is only because of his friendship, cheerleading and generosity that i am now 100 pages into a book about this generational role reversal, a book that is not always kind to him and that he has permission to challenge at any time. so far, he hasn’t argued about a single word. for any of you in the throes of this with siblings, trust each other’s basic goodness, don’t wish you were both the same and know that something special, and in our case totally unexpected, awaits you at the far side. i know, despite a belief system that includes no pink clouds where mom is sitting and looking down at us, that my mother knows her two children are at long last siblings in the deepest and truest sense of the word………………her gift to us and ours to her.
What an incredible piece of work.
Momma was older when she was diagnosed, and while our experience was not as devastating, some of the story rings very true. Fortunately, at this point, our society recognizes it at being the disease of the century, and is more capable to deal with it. We found a good place that cared for Momma until other issues took her at 87. She still had her sense of humor, even if she couldn’t remember what she had for breakfast. And she always always recognized her kids.
Oh dear and wow.
I have been sensitive all day — read, raise an eyebrow at me and I’ll cry – because of Mother’s Day and the fact that my dear sweet and only girl — age 17 — will be gone soon and I will not be a “mother” anymore. (Yes, I know, I will be a mother always — but in some ways I am soon getting my pink slip). And then yesterday, Mother’s Day again, I talked to my own mother…and it is becoming so clear that we are changing roles — and yes I am losing her.
I have no other parents, siblings or even cousins. I will not be an orphan — that would be a presumptous label to assume after arriving at age 45, with plenty of being a daughter and being a mother combined behind me — but I am more and more feeling like a “motherless child” and realizing that I must take on the mantle of adult — woman.
Thank you both for the sharing of your experience and your pain which so exemplifies the beauty and the fragilty of being human, being a daughter, being a mother. I read both of your childhood rememberances, and then the 1983 story in the Times and then the OpEd piece in the LA paper.
I am humbled by your honesty and your experience. The mother daughter — female to female transmission — relationship is so rich and so fraught, even without complication. What you all have endured and the knowledge and strength you emerged with is inspiring.
And though you were both robbed of a mother too early — and had to assume way too much in her care — I can only imagine the two of are who you are, and are writing and are advocating as you do, because of who she was. I want to thank Allene and her story for helping me to push past my sadness on Mother’s Day because of my perceived and projected losses, and to be so thankful of what I can and will be present for and witness to in my life, my daugher’s life.
Thank you both for sharing so completely. And I am so glad that you are sisters and that you have each other.
Hi, Jane. Welcome back. We are so grateful for the reminder that Margaret and I have maintained some solidarity amid the tumult. Our memories distort this, of course, for reasons so generously illustrated by your depiction of the behavior of you and your brother during your caregiving. Yours is an expert’s opinion, and one we cannot wait to read in your book. Congratulations on being 100 pages into it. It will change things for everyone who reads it, as foretold by your offered nugget that we trust one another’s basic goodness and stop wishing we were the same. Yes, yes! The She said, (S)he Said, has its intirinsic value. It does. It does. Thank you.
Hello, Becky. It is so wonderful to be reassured that the Alzheimer’s experience does not necessarily have to be utterly harrowing. Thank you for that reminder. Please please come back soon.
Hi, Vennie. And welcome. “Rich and fraught.” What a great phrase. Thank you for such a remarkably thorough read of our story. You’re right: We learned at home to speak up and speak out. You are so kind to credit that source. You enjoy being a mother, sister. With a heart like yours, rich and fraught though the dynamic may be, we bet you are doing a fine job. Please come back.
Marion,
Your decision to share your family’s struggle was/is brave, powerful, deeply moving. I learned so much from your story and from working with you on projects and committees related to AD awareness and advocacy more than a decade ago (omg, has it really been that long?). Thank you (and Margaret) for sharing the story and helping so many of us understand.
Hey, Jane Ann: Back into the fray, you know? Thanks so much for joining the conversation. We’re very glad to have you here. So glad, as well, to be reminded of working together for the cause. Here’s the the cure! Please come back soon.
Marion,
Your stem cell op ed piece was in the Greenwich Time today. Beautiful piece. Thank you.
I cared for my mom for almost eight years. She had Lewybody. She died in my arms a year ago. The whole experience changed me forever. I don’t know whether I’ll ever feel a part of the mainstream again.
Mother was by no means perfect, but she was truly my best friend and ally.
Like you, I did all the research and dragged her to every doctor for answers…until she could no longer travel without falling and no longer knew my name. There was nothing I could do to stop the progression of this terrible disease.
Mom worked full time until she was eighty to keep her house. She wanted to leave a legacy to her children. We had to sell it to pay for her care. The expenses were $14,000 a month for the last three years of her life. I couldn’t even get coverage for physical therapy to keep her body from contracting. Insurance companies only cover physical illness. If protein deposits all over the brain aren’t physical, what is?
The devastation of this disease on families cannot be measured. As for me, I’m getting my life back, sadly without the support of my best friend.
Dear Maude: If protein deposits all over the brain aren’t physical changes for which there should be insured coverage, then what is? Oh, sister, you ask the right question. Thank you for sharing your story. So glad that the Greenwich paper ran the piece. Please keep visiting us here.
My Mother died suddenly, and she was my Dad’s caregiver. I lost my Mom, and two days later moved my Dad out of his house…
I know how you both feel. It’s wonderful (strange word) to share the experience…
I almost lost my sister, when we traded care giving responsibilities, and now I think we May be working the kinks out.
Sorry this is so disjointed, but my Dad just died on Easter. My mind is still somewhere else.
Our mother noticed nine years ago that her memory was slipping a bit, and knowing the fate of her mother to dementia (aka pre-Alzheimer’s) and also her elder sister to the same demise, our dad tried everything he could to stem the disease from taking its grip.
At 81 now, our mother is a rambling, incontinent shell of one of the greatest women we’ll ever know in this life.
Coming from depression-era upbringing, our mother cherished education and became a teacher in public school, while also raising four children. In addition to her full-time work, our mother devoted herself to the Democratic party and along with my father worked tirelessly to be delegates at every single Democratic convention since Kennedy.
Our mother worked so hard all her life to build a safe and secure world for her family, and what bitter irony that in her golden retired years she should be stricken like this.
We are blessed to have found a care giver who lives with my parents full-time and provides not only necessary relief for my father, but is also the dearest, most compassionate person you’d ever want to meet.
Dignity. That’s all anyone can hope for someone who has cared for so many for so long. Our mother can roam the old house she’s known and raised us all in for the past 45 years, eating well, smiling, laughing, and even singing a bit sometimes.
Her ramblings used to seem like a cry for help, as if the conversation stops, well the rest of her memory would go too. But now it as the disease progresses, it feels more like the last synapses that link to her incredible vocabulary are triggering automatically.
The challenge lies in all of us around her really, to find peace within ourselves, and to recall and hold on to the best memories we have of our mother, as the brightest light that lives within us forever.
Oh, James. That description of your mother just broke off a piece of my heart. Yes, you’re right about our challenge, to find peace within ourselves. You are perfectly spot on right about that. Good for you. I hope your bright light just beams on. Such love in your message, such love.
Thank you Marion for “Another Name for Madness.” I read it yesterday (finishing the last chapters this morning.) I was led to it by this wonderful website. I was led to the website by Margaret’s wonderful book (which I’ve turned many people on to) “and I shall have some peace there.” I am newly retired (from a major corporation – “Who am I if I’m not … …@… .com?”), and moved to my mother’s house to care for her as she is suffering from dementia/alzheimers. At 92, she has greatly declined mentally in the past 3 years. I too have a sister, and we both have “different” mothers. Our involvement with her disease is very different. Your book is my life with my mother, and has given me such support – and many “lightbulb” moments of next steps to look into. From the bottom of my heart – thank you for all of your work on alzheimers with the government, and thank you for writing this book and sharing your courageous journey. Suzanne
Dear Suzanne. How very kind of you to write me. I am teary as I write back, and thank you most sincerely for reaching out with your story. I wrote that book for you and for the millions of people affected by Alzheimer’s. I am so glad it has helped, if only in the smallest ways. We are delighted to have you here. Please come back soon for more.