Poetry as a means of negotiating Alzheimer’s and other dementia-related illnesses

Book Review:

Kakugawa, Frances H. Breaking the Silence: A Caregiver’s Voice. Nevada City, CA: Willow Valley Press, 2010.

Despite the impressive achievements of science and technology, the problems of human life and destiny have not ended, nor have the solutions been seriously affected by scientific knowledge. Alzheimer’s disease, which currently affects about 10% of people over the age of 65 and 50% of those over the age of 85, has no cure. As many as 5.3 million Americans are now living with the devastating disease. According to one study, unless new treatments are developed to decrease the likelihood of Alzheimer’s disease, the number of people with Alzheimer’s disease in the US may increase to 14 million by the end of 2050.

Read in this context, Frances Kakugawa’s book, a blend of poetry, history and practical guidance, is a tribute to the services provided by professional and voluntary organizations that seek to minimize the pain of Alzheimer’s patients, as well as the suffering of their loved ones. one is. It pays tribute to caregivers who have worked tirelessly to create a world without dementia, stroke or cancer, as well as helping them navigate the countless crises of care.

Breaking the Silence: A Caregiver’s Voice melds the varied experiences of Frances Kakugawa and her fellow poets with a broad human perspective, engaging both the mind and the heart. The caregivers seek to share their compassionate spirit with a sense of gratitude with all those who help victims of Alzheimer’s disease negotiate their mentally empty existence. They are not only aware of patients’ substantial brain cell loss or progressive decline in their ability to think, remember, reason and imagine, or of their language problems and unpredictable behavior, confusion or loss of sensory processing, but They also know how Alzheimer’s patients suffer a kind of death in life, becoming a maternal body stripped of its humanity. They have witnessed the care of increasingly confused and helpless relatives of patients who often become exasperated and exhausted victims of the disease:

“Is she the mom that raised me?
Is dementia ravaging my mind?
Or is it really my mom? I dont know.”

(‘More glimpses of a daughter and a mother’)


“I am torn between two factions in need.
Unaware mom, daughter pushing all limits
Both out of control.”

(‘The sandwich’)

For Frances Kakugawa, caring is a mission, even as the memory and image of her Alzheimer’s-stricken mother lingers in her life as a “noisy presence.” She gives voice to many caregivers who are always concerned that their loved ones cannot perform even the simplest tasks and/or are completely dependent on others for their care. She expresses the very disturbing fear of death:

“Is she breathing? Is she alive?”
Is it finally gone, setting me free once more?
I continue my sentinel guard.”

(‘Unspoken Mornings’)

Frances not only articulates her fear, but also learns to negotiate it by bravely facing it as part of life. In fact, she turns the metaphor of death into an integral part of life, be it in the form of “a pain of emptiness”, “unfulfilled dreams” or “unlived moments”. In her deepest silences, she explores the very meaning of life:

“A second taste of wind
Pick up another handful of ashes.
Stand still and listen.”

(‘Song of the Wind’)

It is listening to inner silence, which is something meditative, biblical and spiritual. It is awakening to the self, to the Holy Spirit, to the Divine itself. When the soul reaches its peak in silence, the human becomes divine. It sounds serious and exceptional, seeking harmony with the highest ideals, regardless of chaotic personal experiences. As Setsuko Yoshida says in ‘May I?’:

“Poems of Frances this morning
Reveal feelings of ‘divine’
In the care”.

Indeed, as women poets, Frances Kakugawa and her fellow caregivers (Elaine Okazaki, Linda McCall Nagata, Eugene Mitchell, and others) present a feminine and yet very human perspective on dementia-related illnesses. Jason Y. Kimura, Rod Masumoto and Red Silver, although male poets, demonstrate the ‘Prakriti’ or ‘Yin’ aspects to the beat of the sensibilities of other contributing caregivers. They turn Alzheimer’s disease into a metaphor for loss of language, loss of memory, and loss of voice. His poetry, often brief and personal, and rich and insightful, becomes a means to communicate the loss of feelings, love, dignity, honor, name and relationship of those who suffer; in a word, its isolation, or threat to life itself:

“All my life I have lived
With crayons in one hand,
filling spaces,
Spaces left by lovers, family, friends,
Leaving me crayons smashed against the walls
Creating more grievances than art.”

(‘Empty spaces’)

They also use the metaphor of the challenge to survive, to exist, without fear or anguish:

“I’m a woman,

(‘Nissei Woman’)


“I am not simply heaven, man and earth
Rooted by cultural hands.
Sift those sands. Yes!
I am free!
I am thrown to the winds.
I took off my kimonos.
I spread my legacy.
I am free.”

(‘Lesson 3’)


“When I’m 88
I will continue to be a woman

(‘When I’m 88’)


“I’m still here
Help me to remain a human being
In this shell of a woman that I’ve become.
In my world of silence, I am still here.
Oh, I’m still here.”

(‘Emily Dickinson, I’m somebody’)

They turn Alzheimer’s into a quest to reprogram the mind, thought, and attitude to overcome irreversible suffering and helplessness. As Frances states with great emotion: it is the search for

“…the same umbilical cord
that once set me free
Now pull and pull me back
Back to where it had started.
must be hidden
Somewhere a very divine gift
On this return trip.”

(‘Mother into child, child into mother’)

They are true to themselves when they express their search for the whole. With empathic awareness, they reveal their innate kindness, trust, and compassion to make a “symphony of truth.” At the center of his reflections is the desire to integrate, to live both in time and in eternity:

“What other way is there
except the divine
where love, kindness, compassion,
Help me discover little bits of myself
that makes me smile
Bring me such quiet joy
At the end of each day.”

(‘Bless the Divine’)

They reveal the workings of the primal impulses of the human soul that rise above differences of race and geographical position. In short, they give free rein to the thought of all people in all lands.

As poet-caretakers, they face their tensions, fears, and anxieties through introspection, and accommodate their internal and external conflicts, sufferings, and celebrations through imaginative insight. They reflect broad social or family conditions as well as their own personal status with perceptions that are often different from those of male poets (or male caretakers). His search is for the real reality in the face of degeneration, deprivation, insecurity, impotence, anonymity and death. They seek life and live aware of what is under the skin of the things around them, the psycho-spiritual tensions, the moral dilemmas, the betrayals and the paradoxes:

“Why do you say that I am sacrificing
good years of my life
For taking care of my mother,
When it shouldn’t be a secret
i’m really living
In a way I’ve never experienced before?

No, this is not sacrifice.
It’s just reality.
i’m really living
In a way that I have never experienced before.
I’m living love.”

(‘What I know’)

In the face of the complexities of experiences, they demonstrate a sense of values ​​such as love, faith, truth, tolerance, patience, peace, charity, harmony, humility, and healthy relationships. They tend to think intuitively and/or become personal, inward, spirit or God, without falling into intellectual abstraction. They write with poetic sensibility. Their metaphors and images reflect their inner landscape as much as their responses to what they observe or experience externally. They are often reticent and honest in their verbal expression, and their inner vibrations touch or uplift readers’ senses. As they create a discourse about themselves as caregivers, they also sound committed to their home, family, children, motherhood, and neighborhood, often expressing their own vision and understanding that transcends cultures and regions.

They seek to transcend their body or femininity and respect women themselves, even if they are affected by the environment of Alzheimer’s. They turn inside out and reveal the personal yet universal in their different roles as mother, wife, daughter, and feel the agony of the spirit trying to know “Who am I?”, or “How am I to live, who am I to be?” or “What am I looking for? Why did I come?”

When they look back or reflect on their present, they also express the need for a strong sense of togetherness in the face of inner conflict, spiritual hunger, loneliness, or dependency. They sound challenging to Alzheimer’s itself:

“You couldn’t rob us, though we forgot.
You couldn’t erase us, although we couldn’t write.
You couldn’t shut up, although we couldn’t speak.
The stories, the laughs, the moments that passed
In his keep, you couldn’t steal
On a silent night.”

(‘Hello Alzheimer’)

As they fill you with hope to age gracefully and with dignity despite the challenges of loss, they create alternative motivation and momentum for social action on a very personal level:

“Through this deepest and darkest night
I will hold the light
To take away all your fears.
I just know I’ll always be around.”

(‘For my mother’)

There is an urge to change the situation for themselves, or to be at peace with oneself. The poets and caretakers of Breaking the Silence seek to create a new culture while rationalizing how we should live in the future.

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