Since my husband’s MCI diagnosis from the Neurology NP nearly two years ago, I’ve downloaded nearly 60 book samples on living with dementia into my kindle and read a dozen or so of them. I read the sample first, buy the digital version if I think I’ll learn something new, and buy the print version when I know I’m going to want to share it. I have three print books sitting on my desk.
Let me introduce you to nine of the dozen I’ve read.
I started with the ever present The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias by Nancy L Mace, MA and Peter V Rabins, MD, MPH. This is a kind of dementia encyclopedia and whenever I have a specific question, I can generally find the answer somewhere in there. It has two small sections on MCI and I devoured them.
the next book I read was In Love: A Memoir of Love and Loss, by Amy Bloom, a New York Times bestselling author. This book was recommended to me by an old friend who did not understand this was not the book I needed, though it was very well written. It is the story of her husband’s decision to end his life because of his diagnosis and the journey they took to find a legal way to do that. I was introduced to Dignitas, the Swiss program they found. This book troubled me for many months.
Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain by Dasha Kiper, a clinical psychologist who has worked with both dementia patients and caregivers, came highly recommended, and rightly so. From it, I’ve learned why and how this illness is changing me as well as my husband. I bought two copies.
There are a slew of good dementia journey memoirs to be read. And much can be learned from reading another person’s story. I’ve mentioned In Love by Amy Bloom; she set a high bar for writing quality. Two local authors (with impressive writing credentials) have memoirs out and I enjoyed them both. Alzheimer’s Canyon: One Couple’s Reflections on Living With Dementia by Jane Dwinell and her husband Skye Yardley is unique in that it weaves together both Jane’s life as the caregiver, and Skye’s experience as his dementia progresses. The other is Strange Relation: A Memoir of Marriage, Dementia, and Poetry by Rachal Hadas, which weaves those three together.
I’ve got Oh, Hello Alzheimer’s: A Caregiver’s Journey of Love by Lisa Marshall; and Mother, Daughter, Me: A Memoir by Katie Hafner downloaded to my Kindle awaiting a bit of time.
I read You Say Goodbye, We Say Hello: The Montessori Method for Positive Dementia Care by Tom and Karen Brenner on my kindle. It’s a lighthearted book, with not only the title, but each chapter pulling from a line in a Beatle’s song. The Long and Winding Road is the Introduction. Others include The Magical Mystery Tour, I Want to Hold Your Hand, In My Life, With a Little Help From My Friends, and Let It Be.
Contented Dementia by Oliver James offers another “method” for those caregiving loved ones with dementia. Though I bought three copies to give to family and friends, I’ve now decided not to buy any more “method” books. Each patient is different, with different families, circumstances, environments, values, and needs. And there are lots of writers out there who think their method is the one to use.
Next time, I’ll introduce you to my very own FIVE PHASES of the Alzheimer’s journey, but this one refers to the phases the caregiver goes through.
How about you? I’m eager to hear if any of these have helped you in any way. I hope you’ll write and let me know.
Tim F.
All caught up. Janet, it’s nice to see you blogging again, even if it involves a tough topic. (Then again, when did you shy awy from tough topics)? As always, I admire your curiosity and willingness to throw yourself into a new challenge with gusto and a positive attitude. As someone with ADD who had a paternal grandmother who died relatively young with dementia, I, of course, and interested and concerned about this subject matter, and will be tuning in. Regardless, I hope you are well and taking care of yourself, also, and I wanted to poke my head in here, if nothing else, to simply say “hello.”
Janet Givens
Well, hello back, Tim. And welcome. Your comments always brighten my day. I was knocked out yesterday by a bad reaction to the shingles vaccination. (And no, I will NOT recommend no one gets those vaccinations. Since stress seems to bring on a painful flareup, I thought it important Woody and I follow our doctor’s advice and get the double dose inoculations.) I’m back to “normal” today.
How’s your novel coming along?
Janet Givens recently posted…Educating Myself: The Books
Tim F
Oy–that shingles vaccine really kicked my backside, both times. Worse, I scheduled the second roughly six months after the first, not knowing it was the same day as my oldest’s high school graduation. About halfway through the ceremony the effect kicked in. I didn’t want to miss it or hold her back as she said her farewells, so I grinned and bore it the best I could. By the time I got home, I was so cold and shaking and miserable, I immediately put on every warm fuzzy thing I owned and jumped in bed under as many blankets as I could find where I still shivered and shook for the next 12 hours or so. Glad I got it, but even gladder that the experience is behind me.
As for the never-ending book: in a nutshell, I’ve finished four drafts and am hoping this, the fifth, will finally be the last. I’m ready, and it’s close, I think.
Susan Scott
Hi Janet I hope my comment comes through. I believe accompanying a partner or parent or sibling, or anyone I suppose, has to be one of the hardest things to do, as caregiver. My friend who writes under pseudonym of Samantha Mozart or the scheheherazade chronicles has two lovely books on her personal experience with her mother. Services available or not. But the toll on the caregiver needs to be addressed more.
Janet Givens
“The toll on the caregiver” indeed. As I get further into blogging on this journey I’m on, my hope is that I’ll shed some light there. My fifth “gerund” — Finding ways to feel gratitude and joy in the midst of this unexpected journey— helps enormously. In fact as I now look over my list, I see all of them (even the one we’re in now, Educating myself) have an element of self care. Thanks for calling my attention to that.
Janet Givens recently posted…Educating Myself: The Books