The challenges of Alzheimer’s disease — the physical burdens, financial costs, emotional turmoil and family strife — can reduce our loved one to a “he” or a “she,” a person almost devoid of humanity.
As caregivers, our lives revolve around the basics, like doctor’s appointments and dressing, feeding and cleaning up after our loved ones. Their life becomes our life; our life becomes theirs. But who are they now that this disease has taken over? And just as important, who are we?
In “I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving,” dignity-in-caregiving advocate Frances H. Kakugawa presents a new vision of caregiving.
“I Am Somebody” is a reminder that both loved one and caregiver deserve compassion, respect and a life with dignity. As a caregiver for her Alzheimer’s-afflicted mother for many years, Kakugawa often felt embattled and at odds with her mother. Through writing, she had a revelation:
“I wrote a poem, from my mother’s point of view, imagining what she would say: ‘When I soil my clothing, or do something absurd, / Do not tell me, “Why didn’t you?” / If I could, I would.’ This idea came to haunt me and became my mantra whenever I wanted to shout in exasperation, ‘Why did you?’ or ‘Why didn’t you?’”
In poetic voice, Kakugawa explored further what her mother might have wanted to say: “Speak to me, for I am still here. I understand hugs and smiles and loving kindness. Speak to me and not around me. I am not a she or her or even a room number.”
Having put herself into the position of patient — a label she eschews for the negative attitudes it engenders — Kakugawa discovered her attitude toward caregiving had shifted. “Once I embraced this new person who was evolving before me, once I let go of the person I wanted my mother to be and instead let her be herself, caregiving turned into a freer-flowing river.”
“I Am Somebody” offers guidance in using poetry and journaling to become a more compassionate caregiver. It is a therapeutic tool providing advice and insights in the form of poems and journal entries from 12 individuals — men and women with a diverse range of cultural backgrounds, ages, faiths and education who have cared for mothers, fathers, wives and husbands — who have made this difficult journey.
Kakugawa and her fellow caregivers paint a vivid picture of the caregiving journey and all of the attending struggles, triumphs and deepest fears. “I Am Somebody” gives voice to the caregiver experience, allowing unspoken feelings to be expressed and caregivers the space to explore what their loved ones might say, if they could.
Caregivers will find this assemblage of experiences resonant, while those who are more peripherally involved, such as non-caregiving family members and medical professionals, will gain new insight into the daily caregiving experience. Kakugawa opens each chapter with advice directed toward both caregivers and those in their support circle.
“I Am Somebody” is Kakugawa’s fourth book on caregiving. Her previous works are Watermark Publishing titles “Mosaic Moon: Caregiving Through Poetry” and “Wordsworth Dances the Waltz,” a children’s book about families living with grandparents with Alzheimer’s and other dementia-related illnesses (a Mom’s Choice Award Silver recipient), and “Breaking the Silence: A Caregiver’s Voice” from Willow Valley Press of California.
The award-winning author of 12 books and “Dear Frances,” a monthly advice column for caregivers in The Hawaii Herald, Kakugawa conducts workshops and lectures nationwide. Through her writings, workshops, school visits, readings and speaking engagements, she helps others embrace caregiving and, through their writing, discover their own humanity.
Kakugawa was born and raised on the Big Island in Kapoho, a plantation village that was covered by lava flows. During her years as an educator, she taught in Hawaii, Micronesia and Michigan and lectured at the University of Hawaii. She is the recipient of the Hawai‘-Pacific Gerontological Society Award for her work with the elderly and appears in “Living Legacy: Outstanding Japanese Women of the 20th Century in Hawaii.”
“I Am Somebody” is available in softcover for $16.95 at bookstores, other retail outlets and from online booksellers, or direct from the publisher at www.bookshawaii.net. Contact Watermark Publishing, 1000 Bishop St., Suite 806, Honolulu, HI 96813. For more information, call (808) 587-7766 or 1-866- 900-BOOK (toll free); fax (808) 521-3461; or email [email protected]