A friend recently sent me a link to a blog titled “God’s Grace and Mom’s Alzheimer’s,” and specifically to a post from August of 2013: “What I’ll Say to My Children If I’m Diagnosed With Alzheimer’s.” I agree with many of her sentiments and recommend the blog to anyone caring for someone with Alzheimer’s. Here’s a sample:
I fear having AD someday myself. (My mind already concerns me too often.) But if that day comes … what I would say to them is this…. Pray and trust God to guide you. Get as much help as you can. I don’t want you to sacrifice your life plans or family for my sake, but I want to always be part of your life.
If you need to find a nursing home for me, I understand. Pray about it and seek wisely. And then visit me often. Even if I don’t seem to know you, believe in your heart that part of me does. Hold my hand and talk to me. Tell me all about your life. Sing to me and read the Bible to me, please. Brush my hair and tell me memories of your childhood.
Everything will be better in heaven. Meanwhile, when I can’t talk anymore; just know that I love you forever and that being a mom to you was an honor and the delight of my life.
What powerful words. I wish I had known about this blog during the decade or so that I was caregiving for Mom, because I think we are kindred spirits. I can’t find the author’s name on the blog (or the blog’s Facebook page) but I’m sending kudos to her, and also saying, “Memory Eternal” since I just read that her mother recently died. Maybe she and Effie are exchanging stories in heaven.
Someone sent me this hilarious sign they saw on Facebook. He sent it because this past Friday night I rolled a joint on the square in Oxford, Mississippi, following my reading of Tangles and Plaques at Square Books. The joint was my left ankle. I had gone to dinner with a group of folks following the reading (with over 80 in attendance at Square Books!) and was walking back to my car when I missed the edge of a curb and fell. Thankfully I didn’t break a hip or hurt my neck or back or something more serious than my ankle.
And also thankfully it’s not broken. This morning’s x-ray shows some torn ligaments that should heal in a few weeks. Back in 2013 when I broke my other ankle and leg in a car wreck, I had two surgeries, wore a cast, then a walking boot. The walking boot was uncomfortable because it made my stride uneven, I didn’t have any safe, flat shoes that were high enough. Now they ‘ve got this cool new thing called an “Even Up” that you put on the bottom of your shoe to make your feet at even heights. What a difference that makes!
I posted lots of pictures on Facebook from the event at Square Books Friday night, and also at Lemuria in Jackson on Saturday, so I’ll only repost one here. It was so much fun seeing several of my Tri Delt sorority sisters in Oxford (including my “big sister” whom I hadn’t seen since my wedding in 1970!) and several high school classmates and other friends and family in Jackson. Great reception at both Mississippi events. Thanks to everyone who helped organize them, and to everyone who came to the readings and bought books! Next event for Tangles and Plaques is a salon in a private home here in Memphis, then on to WordsWorth Books in Little Rock, Arkansas on the 18th. What a ride!
Tomorrow is the one year anniversary of Pat Conroy’s death (March 4, 2016). Pat was my favorite author. I read all his books and saw all the movies based on his books. He was a master of literary fiction and packed a big emotional punch in all his work. Beautifully crafted sentences, paragraphs, and pages that I just kept turning. My favorite of his novels is Prince of Tides, but recently I have loved the collection of his blog posts and presentations in A Lowcountry Heart. Magic. Just magic. We all miss you, Pat!
I love these words from Pat’s Facebook page:
“Why do they not teach you that time is a finger snap and an eye blink, and that you should not allow a moment to pass you by without taking joyous, ecstatic note of it, not wasting a single moment of its swift, breakneck circuit?”
Pat was just 70 when he left us… only four years older than I will be on my birthday next Wednesday. His words make me want to be more alert to life moment by moment.
Pat loved his readers, and spent lots of time with them at book signings, listening to their stories. Last night I had my first reading/signing for Tangles and Plaques: A Mother and Daughter Face Alzheimer’s, at Burke’s Books in Memphis. Corey and Cheryl Mesler, owners, are dear friends and stalwart supporters of books and authors and readers. Corey is also an accomplished poet and novelist. I tried to remember to ask each person as I signed their books if they had an Alzheimer’s story, or if they were a caregiver. I don’t think I did a very good job of this, but I will try to do better as I continue on my “book tour”… to Square Books in Oxford, Mississippi, at 5 p.m. tonight, and Lemuria in Jackson, Mississippi, at 3 p.m. on Saturday.
I’ll close with a few photos from last night’s event at Burke’s Books. Have a great weekend everyone!
This morning I worked today’s crossword puzzle (from the newspaper) at one sitting. I work these puzzles almost daily. I also play Scrabble regularly with my husband (Pass ‘n Play on his iPad). I read somewhere that these activities can help stave off the ravages of Alzheimer’s Disease.
Well, my mother and her mother both died with Alzheimer’s, and they both worked the crossword puzzle DAILY until, well, until they couldn’t. I don’t care what the research says, it’s not a magic bullet. So there have to be other motivations for working puzzles and playing games. How about fun?
The same article I linked to above included reading and writing as activities that help slow the processes of dementia. Reading. Writing. I’ve already read four books in 2017 and I write (or edit) daily.
I’m doing my part. Did I mention praying? I do that as well.
So, my daughter and her family are spending a few days with us (from Denver) so this will be short…. Have a great weekend, everyone, and if you’re doing crossword puzzles to prevent dementia, just keep on keeping on and have fun!
Yesterday was release day for my first book, Tangles and Plaques: A Mother and Daughter Face Alzheimer’s. After 24 hours of emotional celebration, I woke up today thinking, “and now the reviews will begin.” A few months ago I clipped this cartoon from the newspaper, hoping that one day I might get a 5 star review.
My book has been sent to several professional reviewers, and then of course there are readers who might review it on Goodreads or Amazon or their personal blogs. I’ve reviewed many books on my blog over the years, so I know what it’s like to be on the other side of the experience. But how should I gear up for reading other people’s reviews of my book?
This article by James Parker and Zoe Heller from a few years ago in the New York Times has some good advice. First from Parker:
A writer should not respond to his or her critics. A writer should rise above in radiant aloofness.
I don’t know about the “radiant aloofness” part, but I can see the wisdom in not responding to reviews, whether they are good or bad. I don’t plan to argue with someone who gives a bad review or bubble over with thanks for a good review. They are just doing their jobs, right? (Unless it’s a friend praising me out of the goodness of their heart.)
Heller’s advice also sounds good:
Art is long, and life is quite long too. There will be other books, other nasty critics, and with them, a myriad of other opportunities to maintain a dignified silence.
I imagine that my little book won’t garnish reviews in either extreme, but who knows? At this point, I think I will welcome any words from someone who takes the time to read the book and respond in print. Of course I’ll post links to the good ones. We’ll see how I respond if there are any bad ones. Holding my breath….
Since my first book, Tangles and Plaques: A Mother and Daughter Face Alzheimer’s, is coming out soon (release date is January 31!) and I have numerous events at which I’ll be reading and discussing the book in the coming months, I’ve begun preparing for those events a bit. I’ve chosen which excerpts from the book I might like to read at various events, but I’ve also been thinking about how much is NOT included in the book. About the questions I might be asked during discussion times—including questions for which I might not have answers.
To that end, I’ve created a list of books I DID NOT WRITE about Alzheimer’s, which might serve as resources for those wanting to read/learn more. I’m going to print the list off and give out copies at readings. This is a very short list. If you Google the topic, you’ll find dozens, possibly hundreds of other books and articles. And while you might wonder why I have not read more widely on the subject, all I can see is that I was too busy living the very personal journey with my mother.
Inside the Dementia Epidemic: A Daughter’s Memoir by Martha Stettinius
The Living End: A Memoir of Forgiving and Forgetting by Robert Leleux
Tangles: A Story About Alzheimer’s, My Mother, and Me (an illustrated/graphic memoir) by Sarah Leavitt
Still Alice by Lisa Genova (movie starring Julianne Moore) “Alice” is a cognitive psychology professor at Harvard who is diagnosed with Alzheimer’s….
Turn of Mind by Alice LaPlante (New York Times bestseller about a retired orthopedic surgeon suffering from dementia.)
Families Caregiving for an Aging America
Follow this link to purchase the report or download a free (PDF) copy of the report:
The books on my short list aren’t included in other lists I found online, like these (for those who want to read more widely):
This morning I was interviewed on Behind the Scenes with Richelle Putnam on Meridian, Mississippi’s 103.3 Supertalk Mississippi radio station about my upcoming book, Tangles and Plaques: A Mother and Daughter Face Alzheimer’s. You can listen to the 16-minute interview here.
When you click on the link, fast-forward to 5:15 minutes in to listen to the interview, which ends 21:35 minutes into the one-hour show.
Richelle and I met almost ten years ago at the first Mississippi Writers’ Guild Conference in Clinton, Mississippi, (August 2007) and we’ve been keeping up with each other Facebook. She’s not only a radio show host, she’s also a musician, songwriter, and author. I’m looking forward to being with her again in person some time this spring, when I’ll be in Meridian for another interview as well as a literary/musical event with Richelle.
My particular interest in Meridian stems from the fact that my mother was from Meridian, and I lived there for a couple of years when I was 3-5 years old (1954-56). And some of my favorite childhood memories are of summer vacations spent with my grandmother (my mother’s mother) who sewed all my clothes for the coming school year while I was with her each summer. For many of those summers my parents would come over (from Jackson, Mississippi, where we lived then) for a few days for Dad to play in the Northwood Country Club golf invitational tournament. As I got older my pre-teen and teenage memories include hanging out at the swimming pool with friends I made in Meridian—including Carol Pigford and Missy McWilliams—while Dad played in the tournament. And I loved following him around the course each year that he was in the final round of the championship flight.
I haven’t been back to Meridian since the last trip I made there with my mother about fifteen years ago. We visited the cemetery where my grandparents are buried, and old neighborhoods and homesteads. I look forward to returning in the spring for an event for Tangles and Plaques. Stay tuned for more information. Thanks for reading, and I hope you enjoy the interview.
What a journey this is—working with four publishers at various stages for four different books being published in 2017 and 2018. I’m so thankful for these opportunities, and I’m learning a lot about the business as I continue in the editing phase for some and enter the pre-publishing and marketing phase for others.
Today I received cover art from eLectio Publishing for Tangles and Plaques: A Mother and Daughter Face Alzheimer’s. I love the way the tangled yarn fades from bright colors to almost black and white below the title line… just as memories fade for those suffering this disease. Good job, eLectio!
I appreciate each person involved in this complex process—editors, publishers, graphic designers, and marketing professionals. Although I chose not to work with literary agents (after an unsatisfactory experience) I’m learning my way without them. What that means is that I’m giving up on book deals from the big houses, like Penguin Random House, Harper and Collins, and Simon and Schuster (and big money) but what I’m gaining is more control, and more personal involvement in the process. So, if an agent sees one of my books and wants to take me on, I’ll listen to her pitch. But for now, I’m a happy camper.
Watch for more news about Tangles and Plaques in February.
In lieu of writing a post today, I’m going to share a personal essay by a friend, the excellent writer and teacher Lee Martin. “This October Sunday,” published in The Rumpus, is the personal essay at its best—filled with intimate truths and universal pathos.
I knew that Lee had a difficult childhood. I had read about it in his wonderful memoir, Such a Life. His personal struggles along with his excellent writing skills led me to ask him to write a blurb for my book, Tangles and Plaques: A Mother and Daughter Face Alzheimer’s, which is coming out in February. Lee’s words were encouraging and humbling:
Susan Cushman writes with clarity and grace about the gnarled pathways between her and her mother, and about the terrible disease that holds a surprising grace within its irrevocable sadness. Tangles and Plaques has the courage to see it all. This is a memoir about caretaking and taking care. It’s a book that will touch your heart.
—Lee Martin, author of From Our House and Such a Life
Thanks for sharing your story with us, Lee. In your memoir. In your novels. And in such a fine personal essay.
Rumpus original art by Liam Golden.
It’s been almost six months since my mother’s death on May 24. I wrote about my grief process back in July initially, and then again in August. Both of those posts included reflections on the series of booklets by Kenneth C. Haugk, Journeying through Grief. This week I received the third of the four books in the series, from Mary Lewis, the Stephen Minister and Grief Ministry Coordinator at Covenant Presbyterian Church in Jackson, Mississippi—the church my parents helped establish in the 1950s. The church in which I was confirmed as a communing member when I was twelve. The church in which I was married in 1970.
This third booklet is titled Finding Hope and Healing. I found two sections to be especially helpful. The first is “Talking Is Healing.” Haugk encourages those of us who have lost a loved one to talk about it—to share our feelings:
Talking is healing. Talking helps you locate your pain, bring it to the surface, and let it go. And because your grief doesn’t suddenly go away, the pain recurs, and you need to talk about it again an again and again. That’s why grieving people need to talk about the same feeling or memory over and over.
I remember one night a few weeks ago when I was a bit depressed and my husband asked me what was wrong. I simply answered, “My mother died.” He smiled gently and embraced me, making himself available for my words. Talking helps. And for a writer, that often means writing. It’s almost ironic that just before my mother died I finished writing a book about my years of caregiving with her. Tangles and Plaques: A Mother and Daughter Face Alzheimer’s will be published in February. But this summer I read all the way through the manuscript again, not only proof-reading for errors but also letting my words into places where my heart needed healing. I read parts of it aloud, which felt like sharing those words with a friend, or maybe with the little girl inside who had lost her mother to Alzheimer’s years ago—the little girl who had always been grieving for a different kind of mother, for one who could love her unconditionally.
Another section in the booklet spoke to me—“Letting Go of Guilt.” I’m sure my feelings of guilt are shared by everyone who has ever been the caregiver for an aging parent. It’s that feeling that you can never do enough—that you could have been a better daughter. One thing that I found helpful in this section was this:
View your guilt as someone else might. It may be helpful to look at yourself as if you were a third person. You may see how unrealistic your expectations are. If you wouldn’t blame another person, why are you blaming yourself? If you’d have compassion on another person who is grieving, why wouldn’t you have compassion on yourself?
I actually experienced this from real, living “third persons”—close friends who reminded me not to blame myself. Friends and family who told me that I had been a good daughter. That what I had done was enough. Again, Haugk says:
Remember the good that you did…. Take a fresh look at your relationship with your loved one and recognize the good things you did as well. Commend yourself for those.
One of my favorite memories of “good things I did with Mom” is from six years ago. I wrote about it here: “Coloring Violets With Effie.” Mother was very artistic, but I couldn’t get her to draw or paint in her latter years. So I took a coloring book and crayons to the nursing home and we colored together. At first she was shy about it—perhaps she was thinking it was childish. But once she got into it with me, she started remembering things she loved and talking about them—her favorite color (purple); how much she loved flowers and making flower arrangements. It was one of my favorite visits with my mother.
So today I’m again thankful to the folks with the Stephen Ministry at Covenant Presbyterian Church in Jackson for this gift, and I look forward to the fourth and final booklet in the series when they send it. What a blessing for my grieving heart, which is healing.