Breaking the Silence: A Tribute to Sufferers of Alzheimer's and Their Caregivers
Despite striking 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 65 years of age and 50% of those over 85 years of age, has no cure. As many as 5.3 million Americans are now living with the devastating disease. According to a study, unless new treatments are developed to decrease the likelihood of Alzheimer’s disease, the number of individuals with Alzheimer’s disease in the USA may rise to 14 million by the end of the year 2050.
Read against this background, Frances Kakugawa’s book, a mix of poetry, story and practical guide, is a recognition of the services rendered by professional and voluntary organizations that seek to minimize the pangs of Alzheimer’s sufferers as well as the sufferings of their near and dear ones. It pays tribute to caregivers who have been untiringly working for creation of a world without dementia, stroke, or cancer just as it seeks to help them endure the innumerable crises of caregiving.
Breaking the Silence: A Caregiver’s Voice merges Frances Kakugawa and her poet-colleagues’ varied experiences with a broad human perspective, engaging both mind and heart. The caregivers seek to share their compassionate spirit with a sense of gratitude to all those who help the victims of Alzheimer’s disease negotiate their mentally vacant existence. They are not only aware of the sufferers’ substantial loss of brain cells or progressive decline in their ability to think, remember, reason, and imagine, or their language problems and unpredictable behavior, confusion, or loss of sensory processing, but they also know well how the Alzheimer’s victims suffer a sort of living death, becoming a mere body stripped of its humanity. They have been witness to caregiving family members of increasingly confused and helpless sufferers themselves often becoming the disease’s exasperated and exhausted victims:
“ Is she the mom who nurtured me?
Is it the dementia playing havoc with my mind?
Or is this really my mom? I don’t know.”
(‘More Glimpses of a Daughter and Mother’)
and
“I am torn between two needy factions.
Mom unaware, daughter pushing all boundaries
Both out of control.”
(‘The Sandwich’)
For Frances Kakugawa, caregiving is a mission even as the memory and image of her Alzheimer’s struck mother persists in her life as a “loud presence”. She gives voice to many caregivers who are ever worried about their loved ones not even able to carry out the simplest tasks and/or are completely dependent on others for their care. She expresses the very haunting fear of death:
“Is she breathing? Is she alive?
Is she finally gone, freeing me once again?
I continue my sentinel watch.”
(‘Unspoken Mornings’)
Frances not only articulates their fear but also learns to negotiate it by boldly facing it as part of life. In fact, she turns the metaphor of death as integral to life, be it in the form of “an ache of emptiness”, “unfulfilled dreams”, or “unlived moments”. In her deeper silences, she explores the very meaning of life:
“A second gust of wind
Lifts another fistful of ashes.
Be still and listen.”
(‘Song of the Wind’)
It is hearing the inner silence, which is something meditative, Biblical, and spiritual. It is awaking to the self, the Holy Spirit, the Divine himself. When the soul peaks into silence, human becomes divine. She sounds earnest and exceptional, seeking harmony with the highest ideals, irrespective of chaotic personal experiences. As Setsuko Yoshida says in ‘Can I?’ :
“Poems by Frances this morning
Reveal the feelings of ‘divine’
In caregiving.”
In fact, as women poets, Frances Kakugawa and her caregiver colleagues (Elaine Okazaki, Linda McCall Nagata, Eugene Mitchell, and others) present a feminine and yet very humane perspective to the dementia-related illnesses. Jason Y. Kimura, Rod Masumoto, and Red Slider, though male poets, demonstrate the ‘Prakriti’ or ‘Yin’ aspects in rhythm with other contributing caregivers’ sensibility. They variously turn the Alzheimer’s into a metaphor for the loss of language, the loss of memory, and the loss of voice. Their poetry, often brief and personal, and rich and insightful, becomes a means to communicate the sufferers’ loss of feeling, love, dignity, honor, name, and relationship; in short, their isolation, or threat to living itself:
“All my life I have lived
With crayons in one hand,
Filling in spaces,
Spaces left by departed lovers, family, friends,
Leaving me crayons smashed against walls
Creating more grief than art.”
(‘Empty Spaces’)
They also use the metaphor for challenge to survive, to exist, without fears and anxieties:
“I am woman,
Suppressed,
Dying.”
(‘Nissei Woman’)
and
“I am not merely heaven, man and earth
Rooted by cultural hands.
Sift those sands. Yes!
I am free!
I am tossed into the winds.
I shed my kimonos.
I spread my legs.
I am free.”
(‘Lesson #3’)
and
“When I am 88
I will still be woman,
Yes!”
(‘’When I am 88’)
and
“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.”
(‘Emily Dickinson, I am Somebody’)
They convert the Alzheimer’s into a search for reprogramming the mind, the thought, and the attitude to overcome the irreversible suffering and helplessness. As Frances very feelingly asserts: it is the search for
“…the same umbilical cord
That once set me free
Now pulls and tugs me back
To where I had begun.
There must be hidden
Somewhere a gift very divine
In this journey back.”
(‘Mother Into Child, Child Into Mother’)
They are true to themselves as they voice their search for the whole. With an empathetic awareness, they disclose their innate goodness, trust, and compassion to make a “symphony of truth.” At the core of their musing lies a desire to integrate themselves, to live in time as well as in eternity:
“What other path is there
Except the divine
Where love, kindness, compassion,
Help me discover little pieces of myself
That make me smile
Bring me such quiet joy
At the end of each day.”
(‘Bless the Divine’)
They reveal the working of the primal impulses of the human soul which rises above the differences of race and of geographical position. In short, they give vent to the thought of all people in all lands.
As poet-caregivers they cope with their tensions, fears and anxieties through introspection, and accommodate their inner and outer conflicts, sufferings and celebrations through imaginative insight. They mirror the broad social or familial conditions as well as their own personal state with perceptions that are often different from those of the male poets (or male caregivers). Their quest is for real reality vis-à-vis degeneration, privation, insecurity, helplessness, anonymity, and death. They search for life and live with awareness of what lies beneath the skin of things around, the psycho-spiritual strains, the moral dilemmas, the betrayals, and the paradoxes:
“Why do you say I am sacrificing
Good years of my life
For caring for my mother,
When it shouldn’t be a secret
That I am really living
In a way I have never lived before?
…
No, this is not sacrifice.
It is just reality.
I am really living
In a way I have never lived before.
I am living love.”
(‘What I Know’)
Against 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 turn personal, inward, spiritward, or Godward, without indulging in 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 elevate the readers’ senses. As they create discourse of themselves as caregivers, they also sound committed to their home, family, children, motherhood, and neighborhood, often voicing their own vision and understanding which cuts across cultures and regions.
They seek to transcend their body or feminity and respect the woman in themselves, even if affected by the Alzheimer’s environment. They turn inside out and reveal what is personal yet universal in their different roles as mother, wife, daughter, and feel the agony of the spirit while trying to know “Who I am?”, or “How I should live, who I should be”, or “What am I looking for? Why did I come?”
As they look back or reflect their present, they also voice the need for strong sense of togetherness vis-à-vis their inner conflicts, spiritual hunger, loneliness, or dependence. They sound challenging the Alzheimer’s itself:
“You could not rob us, though we forgot.
You could not erase us, though we could not write.
You could not silence, though we could not speak.
The stories, the laughter, the moments that passed
Into their keep, you could not steal
Into a night of silence.”
(‘Hey Alzheimer’s’)
As they fill one with hope for ageing with grace and dignity despite the challenges of loss, they create an alternative motive and impulse for social action at a very personal level:
“Through this deepest darkened night
I will hold the light
To take away all your fears.
Just know I will always be near.”
(‘To My Mother’)
There is an urge for changing the situation for themselves, or for being in peace with oneself. The poets and caregivers of Breaking the Silence seek to create a new culture as they rationalize how we ought to live in future.
Work Cited
Kakugawa, Frances H. Breaking the Silence: A Caregiver’s Voice. Nevada City, California: Willow Valley Press, 2010. Print. (All references are from this book).
--Dr. R.K. Singh
Professor of English and Head
Department of Humanities & Social Sciences
Indian School of Mines
DHANBAD 826004, India
__________________________________________________________________________________
Comments on my article by Red Slider, a contributor to the book. His letter was received by email on April 23, 2011:
Professor Singh,
Thank you for your article, on Frances Kakugawa's recent book "Breaking the Silence - A Caregiver's Voice". The need for increasing attention and awareness about Alzheimer's is of great importance, not only in advancing our attempt to understand and ultimately cure this cruelest of all diseases, but in bringing the world a little closer in understanding the universality of the problem and that we all share in a common understanding about the dignity of life and its passing. Your article on Ms. Kakugawa's book amplifies the many voices who speak in that cause and you are to be thanked for your contribution in bring us all a little closer together
I should mention that my name was spelled wrong in the article. The correct spelling is 'Red Slider' rather than 'Red Silver.' Perhaps you can see to that being corrected in any future reprints or publications?
Finally, perhaps my thoughts on one brief moment in the article might be useful.? I don't intend them to be critical or in any way distract from the overall theme of your discussion. Just a small comment that might lead to further insight. It regards the following paragraph:
In fact, as women poets, Frances Kakugawa and her caregiver colleagues (Elaine Okazaki, Linda McCall Nagata, Eugene Mitchell, and others) present a feminine and yet very humane perspective to the dementia-related illnesses. Jason Y. Kimura, Rod Masumoto, and Red Silver, though male poets, demonstrate the ‘Prakriti’ or ‘Yin’ aspects in rhythm with other contributing caregivers’ sensibility. They variously turn the Alzheimer’s into a metaphor for the loss of language, the loss of memory, and the loss of voice. Their poetry, often brief and personal, and rich and insightful, becomes a means to communicate the sufferers’ loss of feeling, love, dignity, honor, name, and relationship; in short, their isolation, or threat to living itself:
I noticed what I am sure was the unintentional contrast drawn in the phrase, "feminine and yet very humane perspective". The appearance of "yet" ('though', 'although; 'in contrast to') would strike an American reader as a little strange, employing the subordinate conjunctive to describe a contrast between the "feminine perspective" and "the humane" perspective. Though the distinction is arguable, most feminist writers might assert that the "feminine perspective" is, by nature and nurture, a humane perspective .
That aside, the next sentence does seem to suggest gender differences in cargegiving sensibilities. It is nuanced into the remark, "[These individuals,] though male poets, demonstrate the ‘Prakriti’ or ‘Yin’ aspects in rhythm with other contributing caregivers’ sensibility." I would be reluctant to assign these characteristics (Prakriti, Yin) using the phrase "though male", as if it was uncharacteristic of males or differenced from their nature to manifest such qualities. After fifteen years of caregiving and hundreds of personal encounters with other caregivers, I conclude that this difference is a misconception made part of expectation and part of projection. A construction which attaches more to the observer than the subject. As you rightly infer, male caregivers demonstrate these qualities; but not, I think, despite the fact they are males. A subtle distinction, but perhaps important when it comes to discussing the real gender differences that caregivers do encounter in practice. One, for example, is the possession of linguistic codes that are differently assigned to males and females in a society. In the States, the large majority of intermediate professionals a caregiver is likely to engage for assistance and resources are female. It took me some time to realize that I needed to learn and use some of the female language codes that women are quite accustomed to using if I were to have equal access to important resources. Something as simple as saying "I have family obligations" would get me much further than itemizing a set of important priorities that males might typically use to make some scheduling arrangement. Gender may have important implications in matters such as deciding which community may need instruction about properly adjusting a diaper and which may be more confused about how to assemble a potty chair. It seems to me, therefore, that discussions of inborn characteristics of nurture and nature (Yin, Prakriti) as gender assignments may only serve to mask the actual level on which these things become relevant to caregiving. It was nice of you to suggest that Mr. Kimura, Masumoto and myself exhibited these 'yin' and 'Prakriti' qualities as well. But I think it beside the main point of your thesis, the common humanity of caregiving and how that instructs us about ourselves as well as those we care for.
Again, this is not at all to detract from your excellent article. Only to offer some small contribution by way of further conversation. I hope it serves that purpose in some small way.
With Appreciation,
Red Slider
www.holopoet.com
redslider@holopoet.com
Read against this background, Frances Kakugawa’s book, a mix of poetry, story and practical guide, is a recognition of the services rendered by professional and voluntary organizations that seek to minimize the pangs of Alzheimer’s sufferers as well as the sufferings of their near and dear ones. It pays tribute to caregivers who have been untiringly working for creation of a world without dementia, stroke, or cancer just as it seeks to help them endure the innumerable crises of caregiving.
Breaking the Silence: A Caregiver’s Voice merges Frances Kakugawa and her poet-colleagues’ varied experiences with a broad human perspective, engaging both mind and heart. The caregivers seek to share their compassionate spirit with a sense of gratitude to all those who help the victims of Alzheimer’s disease negotiate their mentally vacant existence. They are not only aware of the sufferers’ substantial loss of brain cells or progressive decline in their ability to think, remember, reason, and imagine, or their language problems and unpredictable behavior, confusion, or loss of sensory processing, but they also know well how the Alzheimer’s victims suffer a sort of living death, becoming a mere body stripped of its humanity. They have been witness to caregiving family members of increasingly confused and helpless sufferers themselves often becoming the disease’s exasperated and exhausted victims:
“ Is she the mom who nurtured me?
Is it the dementia playing havoc with my mind?
Or is this really my mom? I don’t know.”
(‘More Glimpses of a Daughter and Mother’)
and
“I am torn between two needy factions.
Mom unaware, daughter pushing all boundaries
Both out of control.”
(‘The Sandwich’)
For Frances Kakugawa, caregiving is a mission even as the memory and image of her Alzheimer’s struck mother persists in her life as a “loud presence”. She gives voice to many caregivers who are ever worried about their loved ones not even able to carry out the simplest tasks and/or are completely dependent on others for their care. She expresses the very haunting fear of death:
“Is she breathing? Is she alive?
Is she finally gone, freeing me once again?
I continue my sentinel watch.”
(‘Unspoken Mornings’)
Frances not only articulates their fear but also learns to negotiate it by boldly facing it as part of life. In fact, she turns the metaphor of death as integral to life, be it in the form of “an ache of emptiness”, “unfulfilled dreams”, or “unlived moments”. In her deeper silences, she explores the very meaning of life:
“A second gust of wind
Lifts another fistful of ashes.
Be still and listen.”
(‘Song of the Wind’)
It is hearing the inner silence, which is something meditative, Biblical, and spiritual. It is awaking to the self, the Holy Spirit, the Divine himself. When the soul peaks into silence, human becomes divine. She sounds earnest and exceptional, seeking harmony with the highest ideals, irrespective of chaotic personal experiences. As Setsuko Yoshida says in ‘Can I?’ :
“Poems by Frances this morning
Reveal the feelings of ‘divine’
In caregiving.”
In fact, as women poets, Frances Kakugawa and her caregiver colleagues (Elaine Okazaki, Linda McCall Nagata, Eugene Mitchell, and others) present a feminine and yet very humane perspective to the dementia-related illnesses. Jason Y. Kimura, Rod Masumoto, and Red Slider, though male poets, demonstrate the ‘Prakriti’ or ‘Yin’ aspects in rhythm with other contributing caregivers’ sensibility. They variously turn the Alzheimer’s into a metaphor for the loss of language, the loss of memory, and the loss of voice. Their poetry, often brief and personal, and rich and insightful, becomes a means to communicate the sufferers’ loss of feeling, love, dignity, honor, name, and relationship; in short, their isolation, or threat to living itself:
“All my life I have lived
With crayons in one hand,
Filling in spaces,
Spaces left by departed lovers, family, friends,
Leaving me crayons smashed against walls
Creating more grief than art.”
(‘Empty Spaces’)
They also use the metaphor for challenge to survive, to exist, without fears and anxieties:
“I am woman,
Suppressed,
Dying.”
(‘Nissei Woman’)
and
“I am not merely heaven, man and earth
Rooted by cultural hands.
Sift those sands. Yes!
I am free!
I am tossed into the winds.
I shed my kimonos.
I spread my legs.
I am free.”
(‘Lesson #3’)
and
“When I am 88
I will still be woman,
Yes!”
(‘’When I am 88’)
and
“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.”
(‘Emily Dickinson, I am Somebody’)
They convert the Alzheimer’s into a search for reprogramming the mind, the thought, and the attitude to overcome the irreversible suffering and helplessness. As Frances very feelingly asserts: it is the search for
“…the same umbilical cord
That once set me free
Now pulls and tugs me back
To where I had begun.
There must be hidden
Somewhere a gift very divine
In this journey back.”
(‘Mother Into Child, Child Into Mother’)
They are true to themselves as they voice their search for the whole. With an empathetic awareness, they disclose their innate goodness, trust, and compassion to make a “symphony of truth.” At the core of their musing lies a desire to integrate themselves, to live in time as well as in eternity:
“What other path is there
Except the divine
Where love, kindness, compassion,
Help me discover little pieces of myself
That make me smile
Bring me such quiet joy
At the end of each day.”
(‘Bless the Divine’)
They reveal the working of the primal impulses of the human soul which rises above the differences of race and of geographical position. In short, they give vent to the thought of all people in all lands.
As poet-caregivers they cope with their tensions, fears and anxieties through introspection, and accommodate their inner and outer conflicts, sufferings and celebrations through imaginative insight. They mirror the broad social or familial conditions as well as their own personal state with perceptions that are often different from those of the male poets (or male caregivers). Their quest is for real reality vis-à-vis degeneration, privation, insecurity, helplessness, anonymity, and death. They search for life and live with awareness of what lies beneath the skin of things around, the psycho-spiritual strains, the moral dilemmas, the betrayals, and the paradoxes:
“Why do you say I am sacrificing
Good years of my life
For caring for my mother,
When it shouldn’t be a secret
That I am really living
In a way I have never lived before?
…
No, this is not sacrifice.
It is just reality.
I am really living
In a way I have never lived before.
I am living love.”
(‘What I Know’)
Against 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 turn personal, inward, spiritward, or Godward, without indulging in 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 elevate the readers’ senses. As they create discourse of themselves as caregivers, they also sound committed to their home, family, children, motherhood, and neighborhood, often voicing their own vision and understanding which cuts across cultures and regions.
They seek to transcend their body or feminity and respect the woman in themselves, even if affected by the Alzheimer’s environment. They turn inside out and reveal what is personal yet universal in their different roles as mother, wife, daughter, and feel the agony of the spirit while trying to know “Who I am?”, or “How I should live, who I should be”, or “What am I looking for? Why did I come?”
As they look back or reflect their present, they also voice the need for strong sense of togetherness vis-à-vis their inner conflicts, spiritual hunger, loneliness, or dependence. They sound challenging the Alzheimer’s itself:
“You could not rob us, though we forgot.
You could not erase us, though we could not write.
You could not silence, though we could not speak.
The stories, the laughter, the moments that passed
Into their keep, you could not steal
Into a night of silence.”
(‘Hey Alzheimer’s’)
As they fill one with hope for ageing with grace and dignity despite the challenges of loss, they create an alternative motive and impulse for social action at a very personal level:
“Through this deepest darkened night
I will hold the light
To take away all your fears.
Just know I will always be near.”
(‘To My Mother’)
There is an urge for changing the situation for themselves, or for being in peace with oneself. The poets and caregivers of Breaking the Silence seek to create a new culture as they rationalize how we ought to live in future.
Work Cited
Kakugawa, Frances H. Breaking the Silence: A Caregiver’s Voice. Nevada City, California: Willow Valley Press, 2010. Print. (All references are from this book).
--Dr. R.K. Singh
Professor of English and Head
Department of Humanities & Social Sciences
Indian School of Mines
DHANBAD 826004, India
__________________________________________________________________________________
Comments on my article by Red Slider, a contributor to the book. His letter was received by email on April 23, 2011:
Professor Singh,
Thank you for your article, on Frances Kakugawa's recent book "Breaking the Silence - A Caregiver's Voice". The need for increasing attention and awareness about Alzheimer's is of great importance, not only in advancing our attempt to understand and ultimately cure this cruelest of all diseases, but in bringing the world a little closer in understanding the universality of the problem and that we all share in a common understanding about the dignity of life and its passing. Your article on Ms. Kakugawa's book amplifies the many voices who speak in that cause and you are to be thanked for your contribution in bring us all a little closer together
I should mention that my name was spelled wrong in the article. The correct spelling is 'Red Slider' rather than 'Red Silver.' Perhaps you can see to that being corrected in any future reprints or publications?
Finally, perhaps my thoughts on one brief moment in the article might be useful.? I don't intend them to be critical or in any way distract from the overall theme of your discussion. Just a small comment that might lead to further insight. It regards the following paragraph:
In fact, as women poets, Frances Kakugawa and her caregiver colleagues (Elaine Okazaki, Linda McCall Nagata, Eugene Mitchell, and others) present a feminine and yet very humane perspective to the dementia-related illnesses. Jason Y. Kimura, Rod Masumoto, and Red Silver, though male poets, demonstrate the ‘Prakriti’ or ‘Yin’ aspects in rhythm with other contributing caregivers’ sensibility. They variously turn the Alzheimer’s into a metaphor for the loss of language, the loss of memory, and the loss of voice. Their poetry, often brief and personal, and rich and insightful, becomes a means to communicate the sufferers’ loss of feeling, love, dignity, honor, name, and relationship; in short, their isolation, or threat to living itself:
I noticed what I am sure was the unintentional contrast drawn in the phrase, "feminine and yet very humane perspective". The appearance of "yet" ('though', 'although; 'in contrast to') would strike an American reader as a little strange, employing the subordinate conjunctive to describe a contrast between the "feminine perspective" and "the humane" perspective. Though the distinction is arguable, most feminist writers might assert that the "feminine perspective" is, by nature and nurture, a humane perspective .
That aside, the next sentence does seem to suggest gender differences in cargegiving sensibilities. It is nuanced into the remark, "[These individuals,] though male poets, demonstrate the ‘Prakriti’ or ‘Yin’ aspects in rhythm with other contributing caregivers’ sensibility." I would be reluctant to assign these characteristics (Prakriti, Yin) using the phrase "though male", as if it was uncharacteristic of males or differenced from their nature to manifest such qualities. After fifteen years of caregiving and hundreds of personal encounters with other caregivers, I conclude that this difference is a misconception made part of expectation and part of projection. A construction which attaches more to the observer than the subject. As you rightly infer, male caregivers demonstrate these qualities; but not, I think, despite the fact they are males. A subtle distinction, but perhaps important when it comes to discussing the real gender differences that caregivers do encounter in practice. One, for example, is the possession of linguistic codes that are differently assigned to males and females in a society. In the States, the large majority of intermediate professionals a caregiver is likely to engage for assistance and resources are female. It took me some time to realize that I needed to learn and use some of the female language codes that women are quite accustomed to using if I were to have equal access to important resources. Something as simple as saying "I have family obligations" would get me much further than itemizing a set of important priorities that males might typically use to make some scheduling arrangement. Gender may have important implications in matters such as deciding which community may need instruction about properly adjusting a diaper and which may be more confused about how to assemble a potty chair. It seems to me, therefore, that discussions of inborn characteristics of nurture and nature (Yin, Prakriti) as gender assignments may only serve to mask the actual level on which these things become relevant to caregiving. It was nice of you to suggest that Mr. Kimura, Masumoto and myself exhibited these 'yin' and 'Prakriti' qualities as well. But I think it beside the main point of your thesis, the common humanity of caregiving and how that instructs us about ourselves as well as those we care for.
Again, this is not at all to detract from your excellent article. Only to offer some small contribution by way of further conversation. I hope it serves that purpose in some small way.
With Appreciation,
Red Slider
www.holopoet.com
redslider@holopoet.com
posted by Ram Krishna Singh at 11:29 PM
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