After losing a loved one to Alzheimer’s, many caregivers turn to writing as an outlet. Esther Altshul Helfgott was a caregiver to her husband, Abe, and has been writing for over 40 years. She started blogging and interacting online to ease the loneliness of caregiving. Esther recently published a book to reach others who have been affected by Alzheimer’s. Learn more about Esther, and find out how you can win a copy of her book.
Esther’s new book, “Dear Alzheimer’s: A Caregiver’s Diary and Poems,” is a collection of her diaries and poems over the years. Writing the book was an easy decision for Esther — her love for tangible books goes back to childhood.
Q: How long have you been writing poetry and what motivated you to start?
Esther: I’ve been writing diaries and letters all my life; but I started writing poetry in the early 1970s when the feminist movement, especially the women’s poetry movement, introduced me to the works of Anne Sexton, Diane Wakowski, Erica Jong, Sylvia Plath and others. I’d always been a slow reader, and I learned — wish I’d had known this earlier — that poetry allowed me to put my feelings back into the words I was reading in a different fashion than prose did. The space on the page — between the lines and words, the stanzas — gave me breathing room, time to take in what I was reading.
Though I love prose too and wouldn’t have known what reading was without Jane Eyre and Wuthering Heights. But the space on the page that poetry allows gave me permission to truncate sentences where I felt breath needed to be. It continues to do that for me. I tend to think in line breaks rather than in sentences. Although when I write biographical essays, for instance, I don’t think of line breaks. A different part of the brain is at work.
Q: What is the hardest part about writing this book and sharing your story?
Esther: Abe’s not here to share it with me. He can’t go over the language with me, tell me a comma’s out of place, cry with me when I write something sad, laugh when something’s funny. Tell me, as he did when I wrote a bubbe meinse — (wive’s tale) for instance — that Shalom Aleichem would be proud. Abe was my audience, my best audience. Nobody else ever cared as much about my writing.
Writing about an experience is healing, but it also keeps that experience alive. I often think that if I didn’t have to write down my thoughts, life would be a lot easier.
It’s not hard to share my story. It’s important. Telling stories is the way people build communities, brick by brick. Each story is a component of whatever community we are a part of. The more we know about the Alzheimer’s community, the stronger caregivers will be. The stronger doctors and researchers will be. The less alone people will feel.
Q: You have been blogging for a while. What motivated you to put everything into a book?
Esther: Well, I love books. I love to hold them in my hands, feel the strength of the language and characters within. Know the authors. Blogging is something I came to do as a result of diary writing. I have 40 years of diaries in my house or in the University of Washington Archives where I’ll eventually put the rest. When computing came along, I thought of all the words I had stashed away in notebooks and file cabinets. I had planned to give the diaries to the archives because I know from reading diaries —women’s diaries of the Western Expansion for instance— that they tell the real stories of domestic life and—if the writer searches into the self—of life’s interiority, the self’s internal life.
I started blogging and interacting with the Internet to give some of my story away maybe—so as not to be so alone with it anymore. Aloneness is a debilitating state of being. I don’t mean being alone. I like to be alone. That’s different from aloneness. A person who writes needs to share what she’s written, not thrust it into the dark space of a drawer. I’d been writing and publishing work — articles and poems for years so it wasn’t such a big step for me.
Then Alzheimer’s reared its ugly head and I had no right to keep our goings on to myself. I felt a responsibility to interact with the growing Alzheimer’s public, so began the Witnessing Alzheimer’s column for my local paper, the Seattle Post Intelligencer.
But blogging goes only so far. You can’t hold a blog in your hand. You can’t fall asleep with it (or I can’t). You can’t be in love with a blog or a computer site. Can you? I can’t. I can be in love with a book. So I organized the material and sent it out to a publisher. I should have done that with my writing decades ago but… shoulda woulda coulda. I suppose I didn’t have the confidence, in spite of writing a doctoral dissertation and a Master’s thesis. People in your life need to give you confidence. You don’t just get it, don’t just scrape it up from the dirt. Families need to give each component– whether parent, child or sibling—confidence. That’s what we need to do for Alzheimer’s patients and caregivers. We need to tell them we’re proud of them. Say, “I’m proud of you” to your child or parent, your grandmom and granddad, your uncle and aunt, your mother-in-law, your father-in-law, your stepparent and siblings and stepsiblings.
Say, “I’m proud of you” to any one you feel proud of. I guess that takes a lot of thinking because so many people are jealous of each other. Imagine, once I was jealous of an aide who was taking care of Abe because he knew who she was. I couldn’t believe I had that feeling but I did. I also caught it fast enough to hug the aide for taking care of Abe.
Q: In the book, you talk about meeting Abe for the first time in shul (synagogue). You mention that he had knowledge that you didn’t have, but needed at the time. What was the most valuable piece of information Abe ever gave you?
Esther: He gave me part of life that I was missing and longed for—the softness and strength, conflicts and craziness, the joys and sadness’s of the Ashkenazi background I grew up with. The most valuable piece of information he gave me—Many years ago when I was just getting used to technological fallouts, maybe around 1988 or so, I lost 40 pages of my writing to a broken hard drive. As I was walking down the steps from my study to our living room, Abe said my face looked as stricken as the face of the mother whose baby he performed an autopsy on that morning. He put life in perspective for me from a medical and scientific point of view. He knew the names of all the bones in the body. Imagine. He knew the stars and the planets. He taught me not to kill spiders! He also taught me not to be intimidated by doctors. The mistakes they make in relationships and at home are as awful and as wonderful as the mistakes everyone else makes.
Q: What lessons has caregiving taught you?
Esther: That I can’t make everything better for the people I love or, even, for myself. I knew that before, but I know it more now.
Q: You said that you thought you would stop blogging after Abe’s death, what are some of your biggest challenges you face with writing without Abe around?
Esther: Not having a partner is difficult for me, as it is for most people. I miss the intimacy. But there are other avenues. I know a lot of writers and I’m in writing communities. They help a lot. My challenge now at this stage of my life is to get more work out. I have another book coming out next year — also about Abe — this one is all in poem form; my biggest challenge for that project is helping the publisher find the right cover.
I’d like to get more diaries published but it’s hard to go back to what I’ve already written, especially if handwritten, and organize into a book. I have some scholarship I’ve been working on, and I’d like to finish that up. Not having Abe is not having Abe. I can’t do anything about that. I have to do my work in the world and my work is writing. I can feel Abe’s smile as I write this. He was proud of me, and I keep that with me.
Q: You mentioned that blogging keeps you from being isolated. Isolation is a common feeling for caregivers; do you have any advice for overcoming this feeling?
Esther: Well, to be a caregiver and a writer is to heap one load of isolation on top of another, not just once or twice but over and over again. Writing helps me overcome isolation. A caregiver in one of my groups said she had to do her mountain climbing and that’s what she did to overcome isolation. She got someone to take care of her husband and went mountain climbing. Do what you love: if you’re a dancer, dance. If you’re a singer, sing. Everybody can sing. That’s one thing I don’t do without Abe. I think I should sing more. My mother used to sing all the time. Maybe I’ll start singing. I’ll put some Joan Baez on.
Q: Being a caregiver took a lot of your time. Other than writing, what do you do to pass the time?
Esther: Collage art. Old movies. Poetry readings. Museums. Organizing (and throwing out) cases of papers and photos accumulated over the last umpteen decades. I’m going to see “Sister Act” with my granddaughter this weekend. I went to a poetry reading last night and will go to one tonight. I’m determined to get to the theatre more and to concerts and, especially, the dance troupes that come to town. It’s been three years, but I still seem to be “transitioning” from one life to another. I guess transitioning is part of the human condition. Perhaps we’re always transitioning.
Q: What has Alzheimer’s taught you about life?
Esther: It’s not a fairy tale
Q: If you could send one message to readers who are caring for a loved one with Alzheimer’s, what would it be?
Esther: Listen to him. Be in her moment; it’s different from yours.
Don’t ask him: Do you remember when? Or show him pictures and expect him to remember.
Curtail frustrations by not expecting her to do what you want her to do.
Respect yourself and what you are accomplishing. You can’t do everything. Do what you are physically and psychologically constructed to do.
Lower expectations — Try not to be upset with family and friends who aren’t doing as much as you think they should do. Your relationship with your loved one is different from theirs.’ I couldn’t take care of my mother the way I did Abe, for instance. I couldn’t hold her in my arms the way I could Abe or provide her with the warmth I gave him. Some daughters and sons can. Depends how you’re built and what you’re relationship has been. I couldn’t have taken care of my father the way I did Abe either. Only my children. I could take care of them. Honor that which you can do and let others do what they’re capable of doing. Do the best you can with the psychological, emotional, and financial resources available to you.
Esther Altshul Helfgott lives in Seattle, WA where she is a nonfiction writer and poet with a Ph.D. in history from the University of Washington. You can follow Esther’s writing on her blog, Esther’s Writing Works, or her column, Witnessing Alzheimer’s, on The Seattle Post Intelligencer.
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