Alzheimer's, Dementia, and A DOLL FOR GRANDMA

With more than 6 million Americans living with Alzheimer's or dementia (2021 Alzheimer's Facts and Figures), you may know someone affected. The enormous changes in family dynamics are hard to handle and hard to explain to children. That's why I really like the book I won from author Paulette Boching Sharkey, illustrated by Samatha Woo, and published by Beaming Books. 

A Doll for Grandma: A Story about Alzheimer's Disease shows a close, fun relationship between young Kiera and her Grandma. Kiera notices changes in Grandma that she doesn't understand. Mom explains that there's something wrong with Grandma's brain. When Grandma is moved to a memory care home, Kiera tries to think of ways to reconnect with the Grandma she knew. With her mom's help, Kiera's idea of getting Grandma a doll did the trick. They were able to enjoy their dolls together and establish a different, but still special relationship. The book includes a page for grownups by Judy Cornish, "Helping Children Understand Alzheimer's Disease." While real life may differ, this book gives adults a way to help children understand, with encouraging ideas of how to connect and engage the person with dementia.

Sometimes the process of living with Alzheimer's or dementia is called "the long goodbye." This is well described by my friend Carmen Graber, who graciously allowed me to post her poem here. 

A LETTER TO MY FATHER

Dear Papa

I know, I know

I never called you papa

While I was growing up.

It was always “dad”

I called out

When I needed help

When I needed advice

Or when I just needed to know I was loved.

You were always there

Sometimes even before I called.

You taught me how to love,

How to serve,

How to talk to anyone and everyone,

How to have faith in God and myself.

You guided me into the person I am today

You were my hero, my dad.

And then came a disease called Alzheimer’s.

It began to take pieces of you

And hide them from view:

Slowly at first

Then faster and faster

Until all of my dad was hidden,

Blocked from view.

This is when you became papa.

You no longer responded to dad,

And you no longer responded to me as your daughter.

My heart was broken

And I was devastated.

But a new relationship was needed

Because you needed my help, my guidance and my love.

I was now a new person to you

And you were a new person to me

And that is how you became papa.

Together we journeyed this uncharted territory

Through your anger and fear,

Through your stories of the past

Both real and created in your clouded mind.

I grieved for the man I had lost

While you struggled to find your way back.

Sometimes, when I took your hand

And looked deep into your eyes,

I could catch a glimpse of my dad,

But just as quickly, he was gone

And you became papa again.

This went on for years

Until your mind betrayed your body

And it too began to fail.

Only then did dad began to return.

But dad was too weak to speak

Too weak to open his eyes

Too weak to hold my hand.

Then one cold night

You slipped away

Joining dad and papa

Making you whole once again

When you returned to your heavenly home.

Now after all these years,

I am telling our story.

I am saying my farewell to you

My father, my dad and my papa.

I will love you forever

And miss you for always

Till I see you again.

~Carmen Graber, Copyright 2020, All Rights Reserved

Research continues, and we hope for the day when we will have solid answers for prevention and treatment. Find help and support at the Alzheimer's Association.

Memory, Dementia, and Poetry: National Poetry Month

Poetry and song can reflect the blossom of youth. I'm bringing back Elizabeth Healy for today's post. If you know elderly people, this poem may resonate with you.

Don

I watched him today
during the trivia time.
He couldn't answer--
No memory for details,
But then he went to the hymn sing.
I watched him sing along,
marveling at what he knew.
Those wonderful words of life
bringing amazing grace.
He goes to the garden alone
for a sweet hour of prayer,
and Jesus walks with him
and he talks with him.
Though in his chair
still, he is standing
on the promises of God.
In spite of everything
in his heart there rings a melody.

                   ~Elizabeth Healy

When my mom was in a nursing home, many residents with memory loss sang along to every word at hymn sings or sang along with entertainers who sang "the old songs." What is learned early seems to stick. That gives us ways to connect with people who find difficulty in remembering the now. It also gives them peace and comfort, as they remember their faith and their true, younger selves.

I'd like to call attention to Mind's Eye Poetry, which has the mission of using poetry as dementia therapy. Founder Molly Middleton Meyer says, "Through the use of poetry facilitation, I help my poet/patients access memories and imagination. I turn those memories and imaginings into poems using their ideas, phrases, words, and even non-verbal cues." See sample poems here.

Have you used poetry in this way? How does poetry comfort you? Please leave a comment below.

Oscars, Alzheimer’s, and What Flowers Remember

Chances are good that you know someone with Alzheimer’s. The Alzheimer’s Association says that every 67 seconds someone is diagnosed with the disease, more than 5 million Americans are living with it, and 1 in 3 senior citizens in America dies from Alzheimer’s or another dementia.

Awhile back, I won the book What Flowers Remember from author Shannon Wiersbitzky. In the book, the main character, Delia, learns about Alzheimer’s as her elderly friend, Old Red, goes through changes caused by the disease. Wiersbitzky graciously offered to answer a few questions about this book for young people.

Jane: Your story is set in Tucker’s Ferry, a nice small town in West Virginia that reminds me somewhat of Mitford, Jan Karon’s made-up town. How did you go about creating Tucker’s Ferry, and what other writers influenced your own writing?

Shannon: Tucker’s Ferry is modeled after the small town of Culloden, West Virginia. Growing up, I spent all my summers there. It was where my grandparents lived. It had a little post office where everyone met to get mail and share news, one little grocery store, a gas station and a fire department. And that was about it. The fictional Tucker’s Ferry is an idealized version I suppose, and that fits the story. 

I think everything you read influences you in some way. As a child, it was probably more about learning the arc of story. Growing up I loved Robert C. O’Brien books, Judy Blume, Noel Streatfeild and all her dancing shoes, there was the Tripod Trilogy by John Christopher and the Little House series by Laura Ingalls Wilder. The person who has influenced my writing the most though is probably my editor Stephen Roxburgh. He is simply brilliant.  

Jane: I love the intergenerational aspects of this book. People of all ages do things together and learn from each other, whether or not they’re related. Our society tends to lump people together by age, so that young people don’t mix with senior citizens unless they are grandparents. What are some benefits of intergenerational activities, and how can we promote them in our own communities?

Shannon: You’re absolutely right. And it is such a loss for everyone! I was fortunate in that I lived with my grandparents three months of every year from the age of about seven until I was almost out of high school. We’d visit the requisite amusement park and such, but most of the time it was just regular life. I remember my grandfather heading off to work and coming home in the evening. I’d help my grandmother clean. We’d talk to neighbors. And my grandfather had a big garden. He didn’t grow flowers like Old Red, he grew vegetables, and then my grandmother would preserve hundreds and hundreds of jars for winter. I really got to know them as people, which is such a gift. 

Today I think too many young people only see their grandparents or other senior citizens as old. Every older person was young once! They had first kisses and got in trouble, they’ve been scared or brave, and they are usually more than happy to share their stories. And the stories can be so surprising and wonderful.

I wish there were more ways to connect the generations, through real conversation, not lecture. We should absolutely invite senior citizens into schools. Have them lend real context to an era or a war, read books aloud, listen and mentor, participate in activities. If kids are describing what they want to be when they grow up, have seniors answer that same question based on their own younger dreams. Ask children to interview a senior they know and give them some prompts. Tell me about a time when you got into big trouble as a kid. What were you most scared of when you were my age? What did you do for fun? 

When a young person can discover the personality behind the age, that is the key. From there, anything is possible.  

Here are a couple of recent news items about young people and Alzheimer's patients: 

Let Me Be Your Memory is a school curriculum to link kids to seniors to gather and record memories and create memoirs. 

"These Middle School Girls Had an Idea That Could Help Alzheimer's Patients Remember Loved Ones" by Kim Bellware, Huffington Post, 2/5/15.

Jane: The heart of the book is about young Delia and Old Red, who have a flower seed business together. Old Red has been teaching Delia about flowers, seeds, and gardening. Where did you get the expertise to write accurately about flower gardening?

Shannon: I’m so glad it all seems accurate! As I said, my grandfather grew vegetables, so I knew a tiny bit about tending to plants and such. The rest I learned through research. I did my best to get it right for all the real gardeners out there. I’m not very good at it myself. I love the IDEA of gardening, but I don’t love all the hard work it actually requires. My own gardens start out beautiful and then end in a tangle of weeds. It’s shameful. 

Jane: Delia takes over more and more of the work, as Old Red becomes unreliable. He finally must be moved to a senior care center. This process is difficult for everyone in town, but they try to help each other cope with Old Red’s Alzheimer’s diagnosis. Delia uses creativity to help Old Red hang onto his memories. I read on your website that your grandfather had Alzheimer’s. Did you use a similar tactic? If not, where did you get the idea?

Shannon: My grandfather did have Alzheimer’s and eventually he forgot me. That was horrible, and very hard to comprehend, even as an adult. And I’m certain that is why I was drawn to write about the topic. My grandfather and I never talked about his disease. And not once did I think to record as many memories as I could. Delia’s bravery and ability to confront the problem head on is so admirable. I love her for it. 

The idea for the memory wall that Delia creates in Old Red’s room just popped into my mind one day. I’m a very visual writer. I tend to imagine scenes first and then write them. I knew she was capturing all these stories and folks were giving her photos and I could see this entire wall of Old Red’s life, there for everyone to see. The thought was so beautiful it made me cry. Which meant I absolutely had to get it on paper.   

Jane: The contrast between flowers bursting into bloom and dropping seeds as Old Red loses his faculties and fades away is very poignant. What DO flowers remember? What would you like to tell people who know someone with Alzheimer’s?

Shannon: I would like to think that flowers do remember the people who tended them and the stories they’ve told. Certainly as humans we have the ability to carry stories forward. To tell them to our own children or grandchildren. Perhaps we’re both the flowers and the seeds. 

Alzheimer’s is a terrible disease. It hurts everyone it touches. In the early stages, if I could do it over, I would have asked more, listened more, recorded more. In the later stages, prepare the best you can for the day when your loved one won’t remember you. And simply know you're not alone. So many have been touched by it. Read, talk, ensure you have a support system. 

Jane: I hope we’ll hear more from Tucker’s Ferry. I have a feeling Delia and her friends might have more to learn—and more to teach us. Thanks for talking with me.

Shannon: Thank you! 

Alzheimer’s makes an appearance in the glamour of Hollywood, too. One of tonight’s Oscar nominees is Julianne Moore for Best Actress in “Still Alice.” Moore portrays a college linguistics professor with a happy home life who starts forgetting words and is diagnosed with Alzheimer’s. She is only 50, and the disease progresses quickly, affecting herself and everyone around her. Is she still Alice?  

Avid reader and friend, Jan Mullin, wrote this about the book Still Alice by Lisa Genova: "A Novel." Really? The voice of Alice feels like it comes from my own heart and head and couldn't be more real. Genova writes in such a personal way (Oh my God, what's happening to me?) Her poignant phrases--"She’d rather die than lose her mind" or " Who was she if she wasn’t..." professor, wife, mother, researcher--bring home the realities of the monster under the bed. Alzheimer's is something Alice can't fight, "a demon in her head, tearing a reckless and illogical path of destruction, ripping apart the wiring…" Through diligent research, interviews and personal interactions (and great writing), Genova gives a heart-rending view of the fear, isolation, and confusion as the disease evolves. On the brighter side, Genova includes very positive actions such as early diagnosis and intervention, support groups not just for the caregiver, but also the AD person, and how Alice's family comes to care for and about her in her new reality. The title isn't a question, but through the entire book Alice questions the concept of still being Alice. At the end, the question remains: Still Alice?

Here’s a clip of Moore’s performance in the movie trailer:

 A portion of the sales from Wiersbitzky’s book goes to the Alzheimer’s Association. See how you can help or receive help: http://www.alz.org/