Alzheimer's book: he used to be Somebody by Beverly Bigtree Murphy

Amazon order logo Contents 12 Things Not to Say to a Caregiver Great ideas for answers to questions, statements and perceptions of Alzheimer's He Used To Be Somebody and other books by Beverly Bigtree Murphy Caregiver Corner Caregivers share their stories Reviews of Other Alzheimer's Books Who is Beverly Bigtree Murphy? Beverly Available as Speaker Beverly's Appearances and Events Contact Us, Order Books Links to Other Alzheimer's Resources	*INCONTINENCE AND OTHER CARE ISSUES SPECIFIC TO ALZHEIMER'S DISEASE* "The feeling you experience when you put your loved one in a nursing home may be grief, not guilt!"
Tom in London, 1983. Tom and Beverly, 1994. From Beverly Murphy: I want this web page to be a forum where caregivers can come together to share some of the quality moments that happen in the care of a family member with Alzheimer’s. I also feel we caregivers need a place where we can air the affect the public has on us when they say the things that don’t help and often hurt. I know, even with all my experience, and being the sort of person who almost automatically asks; "Why Not!," when someone tells me I can’t do something I feel in my gut is doable, I also fell victim to the standing rhetoric. And then one day I listened to the words being spoken and separated them from the emotion they carried and I realized that most of the answers I got to the questions I asked weren’t really answers at all, they were merely empty clichés. Over the past four years I compiled a list and I share this with you. I welcome your comments and perhaps you will share some of your favorite non-answers with me and I will share them with those who tap into this web page.: Do You Know This About Alzheimer's? Exploding the Myths about This Disease Letter From Beverly Bigtree Murphy Dear Caregivers, I am first and foremost a caregiver, having cared for my husband Tom in our home until he died of Alzheimer’s Disease in October 1995. I also had 25 years experience as a counselor, designing training programs and altering environments for handicapped people as a Certified Rehabilitation Counselor. I taught, as adjunct faculty, in the graduate Department of Guidance and Counseling, City University New York for several years and have led numbers of support groups both as a part of my function as a counselor and now as an advocate for family members facing Alzheimer’s disease. However, even with all that experience and a Master’s degree to proclaim my credentials as a professional, nothing prepared me for the reality I faced as my husband’s symptoms developed. Like everyone else, I grew into my role as caregiver learning to draw from resources I didn’t even know I had. While I was able to find strength in my resourcefulness I also felt the isolation that took over. It was a fairly solitary 10 years for me but I did come away with certain revelations. Nothing was ever as bad as I thought it was going to be. It was fear of the unknown, fear of change, that was my greatest enemy. Information, resources and drawing from the experience of others was the answer. Every change faced, every decision made was colored by how I handled my grieving. Being able to name the process helped me find the strength to continue. The one constant Tom needed most was to feel safe and loved. It was Tom who encouraged me to write this book and it was Tom, who unwittingly, gave me the title. The words not only expressed his own frustrations at his losses, but they expressed how both of us were treated by those who witnessed those losses. My experience ultimately belied the rhetoric about this illness and that is what I tried to relate in this book. This is the book I wish I could have read when Tom and I started on this journey. I began each chapter with the lyrics to our favorite songs and the poetry expressed in the songs speak to a time when commitment, unconditional love, and sacrifice were thought to be positive qualities. My experience proved to me that those qualities still have a place in our lives and their power to strengthen in times of great need should not be underestimated. Ours, after all, was still a love story. Beverly Bigtree Murphy Do You Know This About Alzheimer's? Contrary to belief, the majority of care is not done in nursing homes. According to the National Alzheimer’s Association statistics, 75% of the care is being done at home, usually by a family member. That translates into 3,000,000 out of the 4,000,000 who have this disease, at home with a lone caregiver, who is isolated, left with few resources, little encouragement, and someone who watches a great deal of television. The remainder of care is done with a combination of family/private pay, group homes, supported living arrangements and nursing homes. Less than 10% of the care is done in nursing homes. One has to wonder why home care is the best kept secret in the movement. National television and the media at large has yet to address the positives that exist in the home care choice for Alzheimer’s families. No one ever talks about how rich the last years with an Alzheimer’s person can be. No one ever acknowledges their needs for nurturing, security, acceptance, or their ability to give love back. No one ever characterizes their caregivers in positive or life giving terms. Instead, only the most negative aspects of this illness are ever presented and the only message the public gets is one of hopelessness and rationalized abandonment. Not one show has even offered home-care as an option. One has to wonder if our official spokespeople, who either made the nursing home choice for their Alzheimer’s person, or who never faced this illness in their family, and who routinely appear on these shows, can give an unbiased, informed picture of this disease to those of us, (the 75%) who are struggling to maintain our people at home. Our people are routinely stripped of their worth as human beings because they lose their ability to think and communicate. That is discrimination at its worst. It is nothing less than bias that is so accepted it isn’t even recognized as bias. People in comas are afforded more regard than are those with Alzheimer’s. As a result, caregivers, who ignore the rhetoric, who see continued connection, who honor their commitment, who struggle alone, are smugly characterized as symbiotic, martyrs, co-dependent, potential abusers, or saints, depending on who is casting the role, and that’s everyone from doctors to uninvited strangers. Our people are dismissed as having no valid reason to live, but they do live, for years until this disease kills them, and I’m not sure euthanasia or institutionalization is any more valid a solution to their care needs than it is for a developmentally disabled child. One has to wonder why this ‘death’ justifies the withdrawal of love.. Those who make the nursing home choice aren’t being dealt with properly either. Guilt is too easy a label to fling at people experiencing grieving. While they mourn the losses, they also feel a sense of failure, no matter how irrational, that goes hand-in-hand with the nursing home choice. Telling family members to ‘not feel guilty,’ really doesn’t help them much and it trivializes the enormity of their choice. In comparison, we home-caregivers more often come out of our experience with a sense of accomplishment and peace, partly because we don’t miss the moments left to share. We also find the tasks are merely tasks, they don’t reflect on who we are as human beings. What home-caregivers feel is fatigue and abandonment. What we don’t feel is a sense of failure. One has to wonder if more would find a sense of accomplishment in their caregiving if the stigma of Alzheimer’s was removed and more options and support were offered. The end-stage home-care tasks aren’t different from any other terminal or chair-bound person. While our caregivers face a myriad of problems unique to this disease during the early stages, with information, basic skills, respite and a positive attitude the care needs can be met at home until death. The horror of Alzheimer’s is really about communication, unresolved issues, and mourning what should have been, but those issues face everyone with terminal illness. Unfortunately, people don’t resolve issues even when they can talk to each other. One has to wonder how so many of us find resolution and closure in relationships once thought to be insurmountable in spite of the communication barriers. Alzheimer’s is probably, the only illness that can truly be described as being the opposite of birth. The Alzheimer’s brain shrinks as the disease progresses and the layers of learning are stripped away in much the same order in which they were laid on from birth. At death, the brain resembles that of a newborn infant. Emotion, the first thing a newborn experiences, is necessary for their survival and bonding instincts. Emotion is the last thing an Alzheimer’s person retains. They respond to love, nurturing, acceptance, touch, body language, inflection in voices until the moment they die. If our caregivers have a mission it is to help their family member regress with the same respect they afford an infant’s development. I ask you, how do caregivers recognize the ramifications of their role, how do they face this challenge if the only message they get is: "You can’t do it," and more important: "You are crazy to try!" One has to wonder if it really matters if our people know who we are when we still know who they are.

Amazon order logo

12 Things Not to Say to a Caregiver Great ideas for answers to questions, statements and perceptions of Alzheimer's

He Used To Be Somebody and other books by Beverly Bigtree Murphy

Caregiver Corner Caregivers share their stories

Reviews of Other Alzheimer's Books

Who is Beverly Bigtree Murphy?

Beverly Available as Speaker

Beverly's Appearances and Events

Contact Us, Order Books

Links to Other Alzheimer's Resources

INCONTINENCE AND OTHER CARE ISSUES SPECIFIC TO ALZHEIMER'S DISEASE

"The feeling you experience when you put your
loved one in a nursing home may be grief, not guilt!"

Tom in London, 1983 Tom and
Beverly, 1994

Tom in London, 1983. Tom and Beverly, 1994.

From Beverly Murphy:

I want this web page to be a forum where caregivers can come together to share some of the quality moments that happen in the care of a family member with Alzheimer’s. I also feel we caregivers need a place where we can air the affect the public has on us when they say the things that don’t help and often hurt. I know, even with all my experience, and being the sort of person who almost automatically asks; "Why Not!," when someone tells me I can’t do something I feel in my gut is doable, I also fell victim to the standing rhetoric. And then one day I listened to the words being spoken and separated them from the emotion they carried and I realized that most of the answers I got to the questions I asked weren’t really answers at all, they were merely empty clichés. Over the past four years I compiled a list and I share this with you. I welcome your comments and perhaps you will share some of your favorite non-answers with me and I will share them with those who tap into this web page.:

Do You Know This About Alzheimer's?
Exploding the Myths about This Disease

Letter From Beverly Bigtree Murphy

Dear Caregivers,

I am first and foremost a caregiver, having cared for my husband Tom in our home until he died of Alzheimer’s Disease in October 1995. I also had 25 years experience as a counselor, designing training programs and altering environments for handicapped people as a Certified Rehabilitation Counselor. I taught, as adjunct faculty, in the graduate Department of Guidance and Counseling, City University New York for several years and have led numbers of support groups both as a part of my function as a counselor and now as an advocate for family members facing Alzheimer’s disease.

However, even with all that experience and a Master’s degree to proclaim my credentials as a professional, nothing prepared me for the reality I faced as my husband’s symptoms developed. Like everyone else, I grew into my role as caregiver learning to draw from resources I didn’t even know I had. While I was able to find strength in my resourcefulness I also felt the isolation that took over. It was a fairly solitary 10 years for me but I did come away with certain revelations.

Nothing was ever as bad as I thought it was going to be. It was fear of the unknown, fear of change, that was my greatest enemy. Information, resources and drawing from the experience of others was the answer.

Every change faced, every decision made was colored by how I handled my grieving. Being able to name the process helped me find the strength to continue.

The one constant Tom needed most was to feel safe and loved.

It was Tom who encouraged me to write this book and it was Tom, who unwittingly, gave me the title. The words not only expressed his own frustrations at his losses, but they expressed how both of us were treated by those who witnessed those losses. My experience ultimately belied the rhetoric about this illness and that is what I tried to relate in this book. This is the book I wish I could have read when Tom and I started on this journey.

I began each chapter with the lyrics to our favorite songs and the poetry expressed in the songs speak to a time when commitment, unconditional love, and sacrifice were thought to be positive qualities. My experience proved to me that those qualities still have a place in our lives and their power to strengthen in times of great need should not be underestimated. Ours, after all, was still a love story.

Beverly Bigtree Murphy

Do You Know This About Alzheimer's?

Contrary to belief, the majority of care is not done in nursing homes. According to the National Alzheimer’s Association statistics, 75% of the care is being done at home, usually by a family member. That translates into 3,000,000 out of the 4,000,000 who have this disease, at home with a lone caregiver, who is isolated, left with few resources, little encouragement, and someone who watches a great deal of television. The remainder of care is done with a combination of family/private pay, group homes, supported living arrangements and nursing homes. Less than 10% of the care is done in nursing homes. One has to wonder why home care is the best kept secret in the movement.

National television and the media at large has yet to address the positives that exist in the home care choice for Alzheimer’s families. No one ever talks about how rich the last years with an Alzheimer’s person can be. No one ever acknowledges their needs for nurturing, security, acceptance, or their ability to give love back. No one ever characterizes their caregivers in positive or life giving terms. Instead, only the most negative aspects of this illness are ever presented and the only message the public gets is one of hopelessness and rationalized abandonment. Not one show has even offered home-care as an option. One has to wonder if our official spokespeople, who either made the nursing home choice for their Alzheimer’s person, or who never faced this illness in their family, and who routinely appear on these shows, can give an unbiased, informed picture of this disease to those of us, (the 75%) who are struggling to maintain our people at home.

Our people are routinely stripped of their worth as human beings because they lose their ability to think and communicate. That is discrimination at its worst. It is nothing less than bias that is so accepted it isn’t even recognized as bias. People in comas are afforded more regard than are those with Alzheimer’s. As a result, caregivers, who ignore the rhetoric, who see continued connection, who honor their commitment, who struggle alone, are smugly characterized as symbiotic, martyrs, co-dependent, potential abusers, or saints, depending on who is casting the role, and that’s everyone from doctors to uninvited strangers. Our people are dismissed as having no valid reason to live, but they do live, for years until this disease kills them, and I’m not sure euthanasia or institutionalization is any more valid a solution to their care needs than it is for a developmentally disabled child. One has to wonder why this ‘death’ justifies the withdrawal of love..

Those who make the nursing home choice aren’t being dealt with properly either. Guilt is too easy a label to fling at people experiencing grieving. While they mourn the losses, they also feel a sense of failure, no matter how irrational, that goes hand-in-hand with the nursing home choice. Telling family members to ‘not feel guilty,’ really doesn’t help them much and it trivializes the enormity of their choice. In comparison, we home-caregivers more often come out of our experience with a sense of accomplishment and peace, partly because we don’t miss the moments left to share. We also find the tasks are merely tasks, they don’t reflect on who we are as human beings. What home-caregivers feel is fatigue and abandonment. What we don’t feel is a sense of failure. One has to wonder if more would find a sense of accomplishment in their caregiving if the stigma of Alzheimer’s was removed and more options and support were offered.

The end-stage home-care tasks aren’t different from any other terminal or chair-bound person. While our caregivers face a myriad of problems unique to this disease during the early stages, with information, basic skills, respite and a positive attitude the care needs can be met at home until death. The horror of Alzheimer’s is really about communication, unresolved issues, and mourning what should have been, but those issues face everyone with terminal illness. Unfortunately, people don’t resolve issues even when they can talk to each other. One has to wonder how so many of us find resolution and closure in relationships once thought to be insurmountable in spite of the communication barriers.

Alzheimer’s is probably, the only illness that can truly be described as being the opposite of birth. The Alzheimer’s brain shrinks as the disease progresses and the layers of learning are stripped away in much the same order in which they were laid on from birth. At death, the brain resembles that of a newborn infant. Emotion, the first thing a newborn experiences, is necessary for their survival and bonding instincts. Emotion is the last thing an Alzheimer’s person retains. They respond to love, nurturing, acceptance, touch, body language, inflection in voices until the moment they die. If our caregivers have a mission it is to help their family member regress with the same respect they afford an infant’s development. I ask you, how do caregivers recognize the ramifications of their role, how do they face this challenge if the only message they get is: "You can’t do it," and more important: "You are crazy to try!" One has to wonder if it really matters if our people know who we are when we still know who they are.

12 Things Not to Say to a Caregiver	Who is Beverly Bigtree Murphy?	Caregiver Corner
Book: He Used To Be Somebody	Beverly Available as Speaker	Links to Other Alzheimer's Resources
Reviews of Other Alzheimer's Books	Beverly's Appearances and Events	Contact Us, Order Books

Contents

Letter From Beverly Bigtree Murphy