When both her parents were diagnosed with Alzheimer’s on the same day, Jean started journaling about her experience caring for them, eventually publishing her memoir, Alzheimer’s Daughter, with the hope to help other caregivers.
Tell us a little about your background…
I was born and raised in a close-knit, faith-filled, family in a very small town in Ohio (population 700), married my high school sweetheart, raised our son and daughter, and worked as a third-grade teacher in that same small town for 22 years. I was happy with my life, loved my family and my little students.
When did you start to think about making a change?
During the last decade of my teaching career, both of my parents were diagnosed with Alzheimer’s disease on the same day, when they were age 86. About three years prior to their diagnosis, my sister and I had begun to question our parents’ mental clarity. Because she lived far away, in Florida, she suggested I start a journal documenting these oddities so we could discuss these concerns when we talked by phone.
I felt like a betrayer documenting these things about the people who had sacrificed and given me every opportunity in life. I hid the journal of my secret writings in the bottom of my kitchen junk drawer so no one would find my traitorous entries.
As their decline worsened, I stopped by my parents’ house every day after work, refilling meds, supporting them as best I could even through bouts of food poisoning and falls resulting in broken bones. I feared for their safety as they were near-hoarders—they were raised in the Depression era, believing every item that was not biodegradable had value—with stuff stashed in every crevice and corner and overflowing from kitchen and bathroom cupboards.
My parents did not want to leave their home or have their car taken away but, after their diagnosis, my sister and I did move them away from their beloved little town, first to a senior living facility and, after two more moves, to a locked memory care unit.
The above words sound logical as I write them, but only a caregiver understands what agony was involved in convincing them to move and losing them little by little.
My mother died in 2010. Only a few days later, my dad had no remembrance of her or their 66-year marriage. At that point, I realized my journal, still hidden in the bottom of the kitchen drawer, might help someone else. I started transposing the journal from chicken-scratched entries to something more full-bodied, a memoir of my Alzheimer’s journey with my parents.
Dad died one year after Mom. On the day of his funeral, my sister and I were cleaning his final belongings out of his room and we found the box of their love letters written to one another during WWII. We thought it would be an invasion to read the letters because they were meant only for one another. But we peeked and found the foundation of their romance within.
These letters would become the chapter beginnings for my book, contrasting their young love with their decline from Alzheimer’s. Here’s an example of one of their letters. I think their voices in the book, their writings, are so much better than my own.
December 24, 1943
My Dearest Ed,
Momma and Daddy, Lydia, Dottie and I just came home from Christmas Eve service. I couldn’t hold back my tears while singing “Silent Night” in the candlelight.
Lydia went straight from church to Peter’s family’s gathering. I know she aches for him. Ed, I miss you terribly and wish you were here. It doesn’t relieve my sadness hearing Bing Crosby’s “I’ll Be Home for Christmas.”
Don’t misunderstand, I thank God you’re not shipped out yet and I pray for all our soldiers in danger overseas. But I long for you.
It’s been said that people in love are not sensible. We are the exception to that rule. I waited for you, a prize package. You are such a wonderful optimist about the war ending soon. You are so good to me––so considerate, kind and thoughtful. Your faith is strong, dear, and I love you with all my heart.
I’m lonesome, honey. I wish you were home for Christmas, even though I know we’ll always be together, ‘if only in our dreams.’
P.S. I hope the slipper socks I knitted arrived in time for Christmas.
Through it all, my job teaching third graders was my “normal,” my refuge. It was the one aspect of my life where I had some control. During the time of Mom and Dad’s illness, my first grandchild had been born, but I had no time or energy to be the wonderful grandmother that my mom had been to my children. She had nurtured them, taught them to garden, cooked and baked with them. So many of their good qualities were due to my mom’s influence.
I talked it over with my husband, and decided I’d retire so I could a better grandma. I’ve never regretted that decision. Now I’m the grandma of five, three of them toddler triplets. Becoming a good grandma, like my mom, was my reason for retiring from teaching, but it also gave me time to pour into my memoir.
What is your next act?
In Alzheimer’s Daughter published earlier this year at age 60—I recount the grit, grief, and love of our journey. It is my attempt to tell my parents, “Even though you couldn’t understand at the time, this is what I had to do to keep you safe. I hope you can forgive me.”
Writing Alzheimer’s Daughter was a labor of love, and I learned so much in the process, but it was also filled with personal agony. The words poured out of me. Floodgates couldn’t hold them back. I tried to stop writing and move on so many times, but the manuscript itself kept calling me back.
It took three years to write the book, after which I queried publishers for a year and launched my blog and Facebook page. I did have interest in the manuscript but was told I had no name or fame with which to sell a memoir. At that point, I researched self-publishing. Now Alzheimer’s Daughter is available through Amazon in paperback and Kindle formats. Without much promotion, the book is selling itself, likely because of the title. Anyone searching for books about Alzheimer’s easily stumbles across it on Amazon.
I am completely humbled by the response the book is getting. I receive reviews and letters from people I’ve never met of all ages and walks of life saying the book is helping them through a rough situation, helping them to look for the sunshine peeking through the clouds of the disease.
How hard was it to take the plunge? How did you prepare?
While writing had been agonizing, the decision to publish was guilt-laden because the story of Alzheimer’s is so personal and private. In essence, I was opening my traitorous journal for the world to read.
I joined a writing group led by a salty, seasoned editor. She and other group members helped me shape what I’d written into a book that we thought could provide truth and solace to other caregivers.
How supportive were your family and friends?
My sister and I struggled with whether or not we had a right to publish my story; we had tried, while Mom and Dad were alive, to protect their dignity and privacy by not talking about the disease. My own adult children, however, were very supportive of my writing and of the publication of Alzheimer’s Daughter. At one point, when I was wavering about publishing, my son asked me if I’d be proud of him if he wrote a book. I told him of course I would! He then asked me if I’d be proud of him if he wrote a book about me if I should get Alzheimer’s. That hit me hard and finally made sense to me. Of course, I would be so proud of him if he shared painful truths about me in order to support others on the same road.
I cannot advise others memoir writers about whether to publish sensitive life stories, but know that what you publish will be read, and will probably be read by those you least want to read it, so be sensitive and aware of that. Make sure your heart is in the right place. In my case, I was not completely at peace when I published, but I’ve found that the truth, sensitively revealed, is honored. Many of the details of Alzheimer’s are shrouded, yet revealing those details can help others know they are not alone in their journey.
What advice do you have for women seeking reinvention in midlife?
At the time I contemplated retiring from teaching, I felt like I was standing on the sill of a large open window in the darkness, about to jump out. I had no idea how far I’d fall before I landed. My future was unknown but I was certain there were other things I wanted to do in my life, namely come to know my grandchild. I’ve never regretted the decision to take that step out the window, and I approach every day of my next act with gratefulness.
If you have a spouse or partner, be sure they support and agree with your decision to leave a profession. This decision will affect your bottom line. If you can live with less, but give more to others, then cut the cord and pursue what is within you.
What advice do you have for would-be writers? What resources do you recommend?
First, if you are a writer, you need support and input from other writers. I can’t stress enough how important it is to be a part of a writing group. I found my writing group at my local library. We meet monthly. We range in age from 16 to 85 and come from varied backgrounds. A retired editor leads our group. We don’t study writing; we write. We submit our writing to the group for honest critique. We are careful not to become friends, because friendship could make us hold back in critique. We accept critique, positive or negative, and say “Thank you for reading, your insights are valuable.” All feedback is a gift of time from readers. Honest reactions must never be squelched.
Second, social media and technology will be integral to your success in your next act. The world awaits through your computer or smart device. You must reach out to connect. As stated earlier, I started working on my social media two years ago, during the time I spent querying Alzheimer’s Daughter.
My Alzheimer’s Daughter Facebook page allows me to post news about Alzheimer’s and share connections to my blog. Honestly, I have difficulty blogging. I knew blogging was my weakness, so I’ve started posting images I create using an app called Canva. This app allows me to incorporate words and pictures, many of them family pictures. The picture triggers thoughts within me about my experience or the caregiving experience in general; then I can write a few paragraphs related to the image.
Twitter was very intimidating when I opened my account. I started following others interested in Alzheimer’s and actively read the tweets of others daily. But it took me nearly six months of studying the hashtags, links, and use of the 140 characters before I had the courage to tweet. But, now Twitter is my best friend. I believe it is the most effective way to communicate with like-minded individuals and find caregiving resources.
I limit myself to these three social media. I think writers can become spread too thin if they try to participate in too much media, which takes time away from new writing. Through social media, I’ve connected with hundreds of experts in the field of Alzheimer’s and dementia, as well as caregivers. With the click of a button, I can talk with someone in Australia who has read my book and participate in their book club.
Third, if you plan to self publish, you must have an editor, and it must be an editor who is not just correcting spelling and grammar issues. I was lucky because the leader of my writing group had spent a career editing and took such a special interest in my book. Some of the most beautiful parts of Alzheimer’s Daughter have impact because of changes my editor crafted. If I had not known this editor, I have no idea how I would have found someone who could give this kind of guidance.
Finally, I was determined that Alzheimer’s Daughter would rival traditionally published books, so I worked with a cover designer, Robert Harrison, in order to achieve a personalized, professional cover. Then I decided to use CreateSpace (owned by Amazon) to publish the paperback version. They worked with me through their layout editing services to achieve the look I wanted for the interior of the book. For such a large company, I cannot say enough good things about CreateSpace. I was always able to talk to a live person who opened up my digital file and worked through all my questions pre and post publication. I also paid CreateSpace to upload my book to Kindle (KDP) so the interior layout would look the same regardless of whether the book was being read in paperback or Kindle versions.
Please contact me at the email listed below if you have questions about getting started on social media, if you need lists of Twitter contacts as they relate to Alzheimer’s and dementia, or if you need to talk to someone who has self-published through Amazon. I’m very willing to share.
What advice do you have for those in your situation, caring for someone with Alzheimer’s?
Most of us will care for a loved one (whether from Alzheimer’s or other debilitating conditions) in our lifetimes, or will need care from a loved one. I hope the experience I’ve been through, being the caregiver and primary decision-maker for my parents, will remain in my memory so I can be compliant when the time comes that I must relinquish control of my own independence. Honestly, if I can understand that my children love me, want only the best for me, and want to keep me safe, that understanding will be the greatest gift of the Alzheimer’s experience for me.
I was so lucky that my sister and I were able to agree on our course of action for our parents. Even though she lived 1,000 miles away, she was my rock, my therapist by phone. I had her on speed dial after every visit to Mom and Dad. I would encourage siblings to try with all that is within them to understand one another and to remain close. Yes, most likely one sibling who lives nearby will become the primary caregiver. This is not going to change. The sibling who lives far away most likely has a family and a livelihood that they cannot leave to come home to help. So you all have to do your best to support one another. There will be times when the nearby caregiver feels abandoned, but far-away siblings may be trying to do what they can on their end to help. Verbalize, communicate, stay in touch, and keep those far away informed. It’s unfair to place blame if you have not communicated your situation and your needs regularly.
A dying parent wants the love of their family to continue. Your parents will have some peace if they can envision their children going on without them, but still having family respect and harmony.
Often in the worst of times, happiness can be found if you dig deep enough. When my dad was so advanced in the disease that he didn’t know his own name, couldn’t remember my mom, or recognize me, he would murmur these words as though there was a ding in the vinyl record album of his mind, “We’ve been so happy. We’re so lucky.” Dig deep, look for any positive coming out of the negative and hold those thoughts in your mind.
The second guessing that comes from being a caregiver for an incapacitated loved one will never leave you, and you can live in torment wondering what would have been if you’d made different decisions. Or you can move on, share your experience, share your compassion, and try to make things better for the next to walk your path. Moving forward is so much better than living in regret from the past.
What’s next for you?
I hope to continue to learn. I learn things every day, and I shock myself, at age 60, at what I’m able to do.
I continue to spend time with my five grandchildren. I babysit for them three days a week. It is my joy. Now my grandchildren bring me newness to my writing.
I mentioned that I’m the granny to triplets. My latest writing project is a series of books written at the 3rd to 4th-grade reading level entitled Lexi’s Triplets, written through the eyes of the 70-pound family mutt. Each book encompasses one year in the life of the triplets and Lexi. Book one is finished, Book two is in revision, and Book three is in outline form. I have not published Book One yet, as I’m just trying to keep up with Lexi and her adventures. I could see the series having at least five books, taking the triplets up until Kindergarten.
While tears splashed on my keyboard when I wrote Alzheimer’s Daughter, now I can be heard giggling while writing about Lexi and her antics in Lexi’s Triplets.
Contact Jean Lee at firstname.lastname@example.org
Book: Alzheimer’s Daughter
What a wonderful and heartfelt story and great accomplishment. The disease is epidemic. If you don’t know someone now you will know all about dementia. This book looks like a great resource for anyone connected.
Haralee, Thank you so much for your kind words. Have you had a family experience with the disease? The book is receiving good reviews. My heart is touched to have something positive grow from this sadness which, as you say so well, will touch us all.
I am a caregiver for a nearly 88 year old mother in law and her 56 year old son who is developmentally disabled. I am not dealing with dementia – not yet, anyway, but your post resonates with me in many ways. Beautifully told.
My heart goes out to you. Lovely blog. We share a sisterhood of the heart.
What an extraordinary interview! Your gentle, giving nature rings through and leaves no question that you walked an often difficult dementia journey with grace and love. How fortunate your parents were to have you as their daughter!
Thank you, Vicki.
Thank you so much for sharing this wonderful story!
Thank you, Kari.
I read about Jean’s book in a blog post on My Alzheimer’s Story, featuring recommended memoirs on this subject and downloaded it. I just finished reading Being Mortal and an note ready to read Jean’s book. My mother was moved into a memory care unit across the country 2 months ago. The mother-daughter relationship can be complicated. Add in Alzheimer’s, 3000 miles and 50+ years of baggage and it is not easy. We have made peace, now that she is fading away, but it is sad. I have written a few posts on the subject on my blog, but it does feel like an invasion of her privacy and dignity at times. Thanks for sharing your story. It helps not to feel alone.
I read your blogposts and can certainly empathize.
Thank you for reading Alzheimer’s Daughter.
Have you heard of the book My Mom My Hero by Lisa Hirsch? Her mother lives across the country as well. You might enjoy reading from that perspective. But, it sounds as though you have been your mom’s caregiver, so you will certainly be able to identify with my role as the daughter who lived only a mile away.
Blessings to you Heidi. We all have much healing to do dealing with long-term caregiver grief.
So very proud of you for telling your story. I’d love to read your book. My mother was diagnosed about 8 months ago with Alzheimer’s at the same time my father developed physical health problems. We now have full-time care in place for my mom. We are definitely at the beginning stages, seeing neurologist and noticing improvement in Mom’s memory from Aricept. Cherishing every good day we have.
Thank you for your kind words.
I read your post about your next act, mediation. Sounds like you have a full plate.
I believe you do have yet another next act, as you are at the beginning of the caregiving journey with your parents. Do they live in close proximity to you? Do you have involved siblings, whether near or far?
It happened that my parents’ attorney was also my attorney. When things became tough and I knew Mom and Dad needed to move out of the family home for their own safety, that attorney whom my father counted as a friend and giver of guidance, facilitated calm and loving mediation between us. I don’t think we would have come to agreements so peacefully without the intervention of our attorney.
Your experience in seeking common ground for the good of all will certainly benefit you through these years of caregiving.
I hope you read Alzheimer’s Daughter. I’d be so interested in your thoughts. Please stay in touch.
Thank you for sharing your story I am so glad I ran across this on my Pinterest account . I am 35 and my mom is 73. She was diagnosed last year 2017 with Alzheimers. It has been so hard on my family but by far the hardest on my dad and I . I have two siblings but they both live out of town . Each day is different and at times I too feel so alone . Thank you for sharing your story . I am doing my best to understand her and the disease.