“I told myself, I don’t care how ugly and hard caregiving can be. It’s okay because I’m writing these poems. It’s the process of giving life to something versus the process of dying.” ~ Frances H. Kakugawa
Last week I read a poem that stopped me in my tracks.
It was written in the voice of an Alzheimer’s patient and reminded me of my Auntie Ella, who suffered from dementia. Some of you may remember my Thanksgiving post from a few years back, where I mentioned how grateful I was to have seen her in Hawai’i just two weeks before she died.
It was of course heartbreaking that someone I had been close to for so long didn’t recognize me at all. Instead of the always-up-to-something, forever baking, reading, and talking-a-mile-a-minute aunt I’d grown up with, I saw a faraway stranger wholly dependent on her son, the victim of a baffling disease that daily threatened her human dignity and robbed us of a beloved member of our family.
“Emily Dickinson, I Am Somebody” was written by Hawaii-born author, poet, teacher, and speaker Frances H. Kakugawa, who served as primary caregiver to her mother, Matsue, for five years. She graciously granted me permission to share her poem today and had this to say:
One word kept flashing before me as I cared for my mother who was losing herself to Alzheimer’s disease. The word was Dignity. This word clarified for me what caregiving was all about. If I could believe that above everything else that was going on, if I honored human dignity in both my mother and myself, then this journey would be one of compassion, love and dignity.
One day I looked at her and wondered what she would say if she could speak. I took poet Emily Dickinson’s lines, “I’m nobody, are you nobody, too?”, and used my mother’s voice in this poem, “Emily Dickinson, I’m Somebody,” to remind me that she is still there, without voice and bodily functions, she is still there, and deserves my own humanity.
My own words from this poem would come to haunt me when things got really difficult and put me right back on track.
Emily Dickinson, I Am Somebody
by Frances H. Kakugawa
If I could speak, this is what
My voice would say:
Do not let this thief scare you away.
Do not let this thief intimidate you
Into thinking I am no longer here.
When you see me, tell me quickly who you are.
Do not ask me, “Do you know me?”
Help me retain my own dignity by not forcing me
To say, “No, I don’t know who you are.”
Save my face by greeting me with your name
Even if the thief has stolen all that from me.
It shames me to such indignities to know
I do not know you. Help me
In this game of pretension that the thief
Has not stolen your name from me.
My words have all forsaken me,
My thoughts are all gone. But do not
Let this thief forsake you from me.
Speak to me for I am still here.
I understand hugs and smiles and loving kindness.
When I soil my clothing or do something absurd,
Do not ask me “Why didn’t you?”
If I could, I would.
I know I have turned into a monstrous baby,
If I could, I would not allow this thief
To let you live and see what he
Has stolen from me.
I know my repeated questions
Are like a record player gone bad,
But my words are gone and this is
The only way I know to make contact
With you. It is my sole way of saying,
Yes, I know you are here. This thief has stolen
Everything else except for these questions
And soon they, too, will be stolen away.
I am still here
Help me remain a human being
In this shell of a woman I have become.
In my world of silence, I am still here.
Oh, I am still here.
~ from Mosaic Moon (Watermark Publishing). Copyright © 2002 Frances H. Kakugawa. All rights reserved.
* * *
Because journaling and writing poetry became her saving grace, helping to ease the heavy burden of caregiving, Frances founded a writing support group for the Alzheimer’s Association-Aloha Chapter in 2002. She worked with caregivers who’d never written poetry or even attempted any other form of creative writing before and helped them harness the power of the written word to heal and transform.
They embarked on a spiritual journey born in the depths of despair, overwhelmed at times by fear, sadness, guilt, anger, self pity, frustration, resentment and helplessness. Every aspect of whom they once thought they were was tested and they found the courage to write about it. They gradually moved toward enlightenment as they discovered their truest selves, reborn as strong, compassionate poet-caregivers.
Frances once said, “Each time I wrote a poem, I felt it was a gift from my mother and Alzheimer’s. Each time I wrote a poem, it was a step toward the divine.” She believes that “the golden rule of caregiving is to take care of yourself first.” Writing is a way of “transcending the burden of care with love, understanding and kindness.”
Today, Frances lives in Sacramento, California, where she leads yet another writing support group for caregivers. She also conducts poetry writing workshops for both children and adults and presents lectures at conferences around the country.
She’s published three books on the subject: Mosaic Moon: Caregiving Through Poetry (Watermark Publishing, 2002), and Breaking the Silence: A Caregiver’s Voice (Willow Valley Press, 2010) contain poems, journal entries and stories by Frances and workshop caregivers, as well as practical advice for novice poets seeking solace, strength, support, and inspiration for their own journeys.
Wordsworth Dances the Waltz (Watermark Publishing, 2007), is an award-winning picture book that helps children better understand behavioral changes and/or memory loss experienced by their grandparents or other family members. It is the second in a series of picture books featuring Wordsworth, the poetry-writing mouse, and I’m pleased to share that Frances will stop by Alphabet Soup during April to tell us more about him.
If you’re reading this today, chances are good you know someone affected by Alzheimer’s or another long-term illness. Though it’s sobering to think that someday we might find ourselves as either patient or caregiver, it is reassuring to know that for Frances and her fellow caregivers, poetry helped them hold onto themselves and survive the experience, a true testament of its cathartic, therapeutic power and the durability of the human heart. As one reviewer said, “memories may wax and wane, but love endures.” As Frances says, “Art in whatever form puts us in touch with our humanity.” I can’t think of a better reason to write.
* * *
♥ Read this post from Frances’s blog, which includes another poem she wrote about her mother. It kills me with its unadorned beauty and poignancy.
♥ Visit Frances Kakugawa’s website for information about all her books. Besides these three caregiver books, she’s published four volumes of poetry, a memoir, two other Wordsworth books, and a book just for teachers. 🙂
* * *
The eminently talented Heidi Mordhorst is hosting today’s Roundup at My Juicy Little Universe. Be sure to check out the full menu of poetic goodness being served up in the blogosphere this week, and enjoy your weekend!
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Copyright © 2013 Jama Rattigan of Jama’s Alphabet Soup. All rights reserved.
Jama's Alphabet Soup 
Wow, what a powerful and touching post! Thanks for sharing all this!
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You don’t have to be an Alzheimer’s caregiver or even someone connected to an Alzheimer’s patient to be moved profoundly by the poems included in Frances’s two books. The resiliency of the human spirit in the face of such challenges gives us all so much hope.
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It stopped me in my tracks, too, Jama. My thanks to Frances Kakugawa for writing it, and to you for sharing it with us.
>>> they discovered their truest selves, reborn as strong, compassionate poet-caregivers. <<<
How wonderful! What good work to do in the world.
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Poetry with a purpose, invaluable on so many levels. I’m looking forward to reading more caregiver poems.
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Frances’ words are so touching. Since we don’t hear Alzheimer’s patients telling us their feelings & thoughts, this intimacy is very striking!
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It was like hearing my aunt’s voice, and made me appreciate my cousin’s efforts as her caregiver even more.
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That was really beautiful and, as you said, extremely power. Thank you for sharing.
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For most of us, it’s unimaginable what caregivers have to endure, whether for an Alzheimer’s patient or any patient with a long-term illness.
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Just lovely, Jama.
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Thanks, Michelle. ♥
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How beautiful that Ms. Kakugawa has shared her own journey in a way that helps so many others – sometimes touching lives she’ll never meet. Stunning poem. “My own words from this poem would come to haunt me when things got really difficult and put me right back on track.” – Wow – that certainly speaks to the power of poetry.
I look forward to learning more about her and Wordsworth here next month! Thank you for sharing, Jama.
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She’s an amazing person — through helping so many other caregivers and their families, her work helps to dispel the belief that poetry is something lofty and inaccessible for the average person. It’s about uncovering emotional truths and laying them bare through words so one can distance themselves enough from them to survive the ordeal of caregiving. This shift in perspective has been life-changing for these poets.
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You brought a tear to my eye, Jama. Frances’ work is so important, such a gift.
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I’ve been reading through the poems in Mosaic Moon — heartbreaking sometimes, but there is also humor and hope.
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Wow! Thanks for sharing this wonderful poet and poem. This is a subject very important to me; my MIL, mother and one other relative whom I won’t name have been affected by this terrible disease.
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Glad this post resonated with you, Barb, and sorry to hear about your loved ones suffering from this disease. Of course it affects the entire family circle. My FIL also suffered from dementia so we’ve experienced this on both sides.
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Huge lump in my throat…beautiful poem.
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The other poem I linked to pretty much did me in too. . .
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Jama, this is beautiful and moving, both Frances’s poem and your reflection. Thank you.
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Thanks for reading, Mary, and for commenting today.
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Dignity – it’s all there in that one word. Frances’ poem, her experience with her mother, your experience with your aunt shows us that the “thief” can be tempered with the written word and creativity. Thank you SO much for sharing this today, Jama.
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Thanks so much for reading, Bridget — let’s keep hoping that doctors will also find a way to temper this thief sometime soon.
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What a powerful poem! Thank you so much, Jama, for sharing it and for all the background about Frances Kakugawa and her poetry. I’m sorry about your aunt. Losing loved ones reminds us how important it is to treasure every moment.
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Thanks so much, Catherine. We should definitely treasure every moment. Because I lived far away from my aunt, I didn’t witness a gradual decline. She was cognizant all along, and then suddenly on my next visit she was someone else. Our only comfort was that she seemed happy in her own little world and was well cared for by my cousin.
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Jama,
I really resonated with the part about the repeated questions being the only way to connect. When they are understood this way it is so much easier to be patient and answer again, and again.
Liz
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You’re right, it would be very frustrating for the caregiver unless he/she realized that. That’s why Frances’s books are so very helpful — so much to learn not only from her poems, but those of the other caregivers, showing that so much of our thinking has to be re-learned.
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Honestly, I am afraid to give this poem to my mother, since it was a year ago February when my grandmother died, and it was hard to stop the tears then, and my grandmother lost so many things along the way… but. This resonates so clearly, and gives us a way to go forward if we are faced with that war of attrition that the thief brings. This is an amazing poem, chronicling the brave and selfless act of caregiving, even when the soul of the one for whom we cared has wandered into change.
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I hear you. Reading the caregivers’ poems has been a huge eye-opener for me, re-defining what it means to be selfless and sacrificing.
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So moving, Jama. This reminds me of my mother in law whose last years were lost to ALS- and caregiving was so heart wrenching. I love these lines in particular:
I am still here
Help me remain a human being
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Sorry to hear about your mother-in-law, Tara. The lines you cited can be thought of as the caregivers’ creed; it’s at the heart of everything they do and have to endure for their loved ones.
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What a moving post, Jama, and what a thoughtful heartfelt reminder of the very core, the essence, in each one of us – forever present, albeit our apparent-indifference or seemingly-lost gazes wrapped in various forms of illnesses that simply can not be helped. Beautiful. Caregiving through poetry indeed – heals the soul more than any pills, I bet.
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This is a good reminder to assess and re-assess what really makes us human. Courage sometimes speaks in unexpected ways and places.
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Dignity. Such an important word to remember.
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Amen!
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I’m sorry about your aunt. 😦
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Thanks, Erik. I miss her a lot.
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Thank you both, for the tears and healing and so much loveliness. I love the way the caregiving and poetry are compatible.
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Thanks, Jeannine. I sort of always knew poetry was a great source of solace for some, but never really seriously considered how valuable a tool it could be to help people cope with these types of seemingly impossible situations. The beauty of creativity = birthing something new in the face of loss.
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Thank you for appreciating, and spreading the word about, Frances’ work. I am one of the caregivers who has had the life-changing experience of participating in one of Frances’ poetry-writing caregiver support groups. I certainly never knew I had a poem in me before I met Frances. Yet, under her tutelage, poetry-writing helped me express my emotions and create something for myself out of the incredibly heart-wrenching yet tedious job of caring for my mother for over ten years until she died about a year-and-a-half ago.
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Thanks so much for commenting, Eugenie — how wonderful to hear from you. So sorry to hear of your mom’s passing — ten years+ of caregiving is such a long time. I’m in awe of what you caregivers have to endure and also of the life-changing work Frances has been doing to help others all these years. You inspire the rest of us and give us all hope. Do you continue to write poetry now?
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Eugenie’s work is included in my Breaking the Silence: A Caregiver’s Voice.
Her poem “I Hate Costco” is a masterpiece. Her lines from another poem are etched in my head:
“No, this is not sacrfice….
….I am living in a way I have never lived before.
I am living love.”
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Heartbreaking. I’m sending this to a friend whose mother has Alzheimer’s. She still IS somebody.
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I think the poems contained in Frances’s books would really speak to her, Ruth — even if you’re not a caregiver yourself, there is so much to learn and reflect on — it’s ultimately about being human.
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What a beautiful poem about such an important subject, Jama.
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Glad it touched you, Kathleen. Thanks for reading and commenting :).
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I have read all your comments and I’m sitting here, so moved, not knowing what to say. So I lighted a candle. Jama, you knew, didn’t you, that you would be able to touch readers of similar heart and understanding as yourself, when you paused for my poem. Thank you for the beautiful presentation. To all the caregivers, post and present and those yet to become, I don’t have a magic wand, so I can only offer you my poetry in hopes that they bring you some insights so caregiving can become a gift. Thank you. frances
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Thank YOU, Frances, for all the work you’ve been doing on behalf of dementia patients and caregivers. Few would initially think of caregiving as a “gift,” or associate it as something “divine,” but as you’ve been showing us, there really is another way of looking at the situation. It’s very humbling and speaks to the best of what a human being can be, when he/she is tested in this way.
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Jama, thank you so much for sharing this inspirational post! I really needed to hear this and see how powerfully poetry can be a means of grace. Frances, thank you for sharing your passion and struggle and triumph! I want to follow your example. You’ve really touched me.
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Happy this post resonated with you Andi, reaching you just when you needed it. Poetry is like that, isn’t it? Do check out Frances’s blog, where you can find more caregiver poems. 🙂
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I’m too late to thank you for this important post, but not too late to say that Frances’s poem spoke to me in a different ear, if you will, It made me think of these difficult conversations i keep having with my 10 yo who really would do better if he could, who would remember his homework every day if he could, who is working hard all the time even when it’s killing me to remind him for the umpteenth time to do XYZ. Always something good in your alphabet soup, Jama.
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Heidi, I recently heard a study on youngsters’ inability to retain information such as “clean your room” or “take a bath.” So our “how many times do I have to tell you” doesn’t resonate with their brain cells. THis study reminded me of people with dementia who can’t recall or retain information. IF this study has its merits, than we may need to say, ” Home work time” as though it’s being said for the lst time. ( This study WAS NOT done by teenagers, btw.) . For us adults, we would like to think our words are like the printed word, etched forever in our children’s heads. One person once said, the most useless things said are the lectures and reminders given to kids.
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I have been giving addresses to conferences in various parts of the U.S. I will be in Denver, CO at the Brookdale National Group Respite Program Training Conference, speaking on caregiving and poetry, will give a workshop on poetry writing and one on children and dementia. Oct 18-20.
California:August 22: Memoir Writing
August 26: Dignity in Caregiving
Site: Asian Community Center in Sacramento
2014: April 27: Keynote address at the Keiro Institute for Healthy Aging conference. Subject: Dignity in Aging/ Poetry writing for caregivers.
Site: Los Angeles
If you are anywhere near these localities, I will happily refer you to the hosts.
Or if you can’t come to the mountain, the mountain can go to you via various organizations who will sponsor my work.
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