Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.
Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.
I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.
I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.
Wednesday, September 21, 2016
Wednesday, September 14, 2016
Meet Deborah Shouse, author of Connecting in the Land of Dementia: Creative Activities to Explore Together
Fingers on the Keyboard, Heart on the Page
By Deborah Shouse
Wednesday, September 7, 2016
Monday, September 5, 2016
The reason I bring up the age and retirement demographic of the area is that it also means there are many people here in their forties, fifties, and sixties who are caregivers for older relatives. Dinner parties are fraught with stories of relatives’ broken hips, the anger that comes with loss of mobility, horrible driving, the forgetfulness and paranoia that comes with dementia, and most often – the cruelty that is heaped upon caregivers who once had close relationships with the person in their care. Plans are often postponed because friends have to deal with a medical or housing emergency that comes up for their elderly parent.
I wrote The Risk of a Fall, a novel, after a particularly difficult few years with my grandmother. She was in her late 90s, independent to a fault, and morphing from the spunky conversationalist she’d once been into the bitter, spiteful, distrusting, and paranoid person she became in her last few years.
The Risk of the Fall is a fictional amalgamation of thoughts, feelings, and situations that either happened in my own family or that I’d heard in stories from other people. The book is a bit unique in that it is written from two characters’ perspectives (actually three, as a third character narrates a few chapters). It first occurred to me to write it that way after I’d had a uniquely difficult conversation with my grandmother about her living arrangements.
To put it bluntly: she was pissed off. And I was on the receiving end of that ire. At first I was fuming, then hurt. Then I tried looking at it from her point of view. She’d lived to be in her late nineties, had been a widow taking care of her own affairs for the last twenty years, and now she was having to share decision-making about her life with a granddaughter sixty years her junior. I realized how powerless she must have felt, and that led me to the exercise of trying to view everything from her point of view.
Over time, I listened to caretakers in tears because of the awful things their elderly parents had said to them; I listened to seniors (especially in the few years when I took my dog to visit nursing homes as a therapy pet) complain about their families “doing everything wrong” and for treating them “like a child”.
Out of those experiences came the idea to write The Risk of a Fall from the perspective of both the caregiver and the person in need of care. In doing so, I think I was able to capture the frustration felt on both sides.
I have been told by caregivers and healthcare professionals that when they read The Risk of a Fall, it makes them feel like someone out there understands how hard they are trying and how soul-crushingly tired they feel. But it also gives them a bit of an “a-ha” moment when they stop and think of how their elderly relative or patient might be viewing the same situations.
The multi-view perspective the reader has of the family in The Risk of a Fall shows how desperately hard everyone tries, how much love is involved, and ultimately, how diseases that come with aging can be explosively destructive forces that leave no one unscathed.
Thursday, September 1, 2016
Tuesday, August 23, 2016
Twitter account: @marceecorn
Thursday, August 18, 2016
Like many, my father’s struggle with Alzheimer’s was a long and gradual one, but that did not make it easier for him, and it didn’t make it easier for all of the people who loved him. We had to say goodbye over and over as parts of who he had been vanished like color from a beloved garment, never to be restored.
It was toward the end of my father’s struggle (though even then, the end was agonizingly attenuated) that I wrote WHAT A BEAUTIFUL MORNING, a picture book about a boy and his grandfather (and grandmother!) coping as best they can with the changes forced upon them. I had been visiting my parents every summer on the island where they had a home. It was a special place for all of us.
When my son was a baby, those two-week visits were a blessed reprieve, as my parents would joyfully babysit while my husband and I snuck away for an hour or two to play tennis or go to a movie. And as my son grew, so did his love for these visits. He spent precious unstructured time following his grandfather around and helping with tasks like cleaning up the garden, raking sticks, riding to the garbage dump!
But now everything had changed. My son was still helping, but he was helping my father find his way around his own home. He was making sure grandpa got to the dinner table. It was crushing to him. And confusing.
Now I used my two-hour “break” not to relinquish childcare, but to cope with my own emotions about my father’s struggle, so I could come back and be helpful to my mother, and to my son. So I wrote about my dad and how much he loved to sing. I wrote about the very real way we could still – even as other means of communication had vanished! – sing songs together, how my father’s face would light up as all the lyrics of a complicated song would come flowing out of him. In those few moments of music-making, it felt like we were having a conversation again. And we were.
A dear friend who had been through this same loss advised me that, rather than focus on the long road of loss ahead, I should try to celebrate each individual day in the present knowing and appreciating that it was the best my dad would ever be. I found that awareness and appreciation in music. And I hope maybe reading WHAT A BEAUTIFUL MORNING will bring a moment of comfort to other families as well.
Arthur Levine is the publisher of Arthur A. Levine Books at Scholastic, whose books include the Harry Potter series. He is the author, most recently, of the picture book “What a Beautiful Morning,” about a family dealing with Alzheimer’s disease.