Recently I asked if Brain Support Network super-volunteer Denise Dagan could read the memoir Last Dance at the Savoy, by actress Kathryn Leigh Scott (kathrynleighscott.com). I was honored to meet Kathryn last year at a progressive supranuclear palsy (PSP) conference in the local area. Her husband had PSP.
Below, Denise shares her review of the book and some highlights. The symptoms and behaviors mentioned below are found in most of the disorders in Brain Support Network.
Robin
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Denise’s review of
“Last Dance at the Savoy”
by Kathryn Leigh Scott
Robin asked me to review this memoir. The diagnosis is PSP, but it is about caring for the love of your life until the very end.
Kathryn says she wrote this book because, when her husband was diagnosed with PSP she, “…yearned for someone to take my hand and figuratively walk me through the difficult times I knew were ahead.” She’s done that for you in spades by beautifully sharing her own story! She’s also included a good resource guide.
Kathryn is a good writer. She spends the first several chapters introducing herself and her 2nd husband, Geoff. She doesn’t just run through the history of how they met and their respective professions, but invites you to witness romantic moments, annual jazz pilgrimages, favorite haunts and travel destinations. You are right there with them through everything. Every experience is conveyed with thoughtfulness, honesty, and humor.
By the time she gets into the nuts and bolts of caring for Geoff you understand their devotion to friends, loved ones, and each other. You understand her motivation to join in his denial, protect him from the injury of falls, and support his remaining life. You understand their great desire to push through the difficult bits and continue enjoying all that their respective, amazing, lives have to offer.
Since it is a memoir, and not a caregiving guide, there’s little in the way of tips and tricks for helping someone with PSP (his diagnosis, after many exams), although as she describes how she manages, you pick up on what works and what doesn’t.
Most useful to caregivers of any long-term illness is her frank recollection of her thoughts and feelings, how she dealt with the stress of caregiving, complicated by trying to be available for her husband, her family, and her career. She is not shy about sharing her mistakes and correcting them, nor her guilt over injuries he suffered because of those mistakes. At the same time she reprimands herself for not always carrying a book in her bag for those long hours in the ER after his falls.
It took some struggle on both their parts for Geoff to accept each new dependence on Kathryn, even though he had cared for his first wife, Barbara, through 12 years of Multiple Sclerosis until her death. It’s not the same when you’re the one being cared for and he had no control over emotional outbursts because of the disease process. And they didn’t know PSP itself was a factor in those outbursts for a few years.
When Kathryn was frustrated with her mother’s behavior in the last weeks of cancer, Geoff recognized her mother’s behavior as separating from the family and the world in preparation for death. He had seen the same in Barbara and shared that with Kathryn to ease the strain between her and her mother. She remembered this when he was in hospice and his advice about her mother, “This is her journey. Just be there for her.” As difficult as it was, she was there for her mother, and for Geoff.
Kathryn takes us with her through the funeral arrangements and some months after. She shares with us not only her grief, but the support of friends and family, and a bit of how she moved on. In a quiet moment she realized that she was not only going to need to learn to live without Geoff, she would need to redefine her life. She would find his presence in unexpected places, and make peace with that.
– Denise