Summer is here even though it doesn't look like it in New England; mid-60s and raining. I'm home with a nasty cold, laryngitis, ear infectiions, so my orienting at my new position in psychiatric nursing is on hold until I can hear adequately to do my job. I wonder how our body knows we are stretched to our limit? It does, though, and gets sick, laying us up to rest. I think that is what this sickness is all about. Caregivers, whether informal family caregivers, or professional caregivers (social workers, nurses, homecare aides, doctors), need to tend to their need for rest. If we don't pay attention, the body makes us take a rest. What happens to you when you are forced to rest? Can you give in and let nature heal you, or do you, like so many of the caregivers we coach here at StilMee, keep plowing along, not asking for help, and not able to give the attention to caregiving that they want.
This summer take stock of yourself. Do you take time for yourself to refresh and revive your energy? I used to say to myself, "I think I need an Abby fix." referring to delicious time with my granddaughter. An hour or so with an innocent child who expected nothing but smiles and hugs, made me feel whole again.
Whether it be visiting with family members or friends who are light-hearted and can laugh, reading a good book, listening to music, sitting outdoors doing nothing but gazing at the sky, or exercising at a local gym, you MUST take time away from your caregiver duties and refresh yourself. I've learned that when I'm sick, I stay out of work, trusting the place won't fold if I'm not there. As I give over the reins of StilMee to the coaches, I find the company runs well, I can see what strength and knowledge the coaches have without me, and my body heals. I hope you've learned this lesson too. It has taken me a long time but I learned. Practice taking care of yourself. It will pay off generously.
BEv
Showing posts with label The Caregiving Journey. Show all posts
Showing posts with label The Caregiving Journey. Show all posts
Friday, June 24, 2011
Sunday, October 17, 2010
Language and its impact
I've been reading a book about a couple's journey through alzheimer's disease called 10 Thousand Joys, 10 Thousand Sorrows. It is an unusual book as the person, the husband, with Alzheimer's has always been a lover of language. Poetry and prose had been his life along with his wife's as well. They taught, wrote and enjoyed the nuiances of language. As his disease progresses in the story he is able to express his feelings about his confusion, his aphasia, his disorientation and his angst about losing language.
This is unusual because most who get Alzheimer's are not linguists or poets . They can't express these feelings easily if at all. Do they suffer alone? What can we as caregivers do to help? Reading the book gave me insight into what it might be like to know you are losing your cognitive abilities. It gave me more empathy towards those who cannot express their feelings. As caregivers we need to be sensitive to the struggles to understand that the person with the disease must have. One patient said, "I go to talk and words run away and hide." As I read this book I became anxious and sometimes felt jealous anger about his being able to express his confusion,fear and frustration. I remembered all the spouses who try to understand but can't what their partner is experiencing.Oh that all could do that; caregiving might take on a more shared experience. As it is, most caregivers complain of missing conversation, companionship of their loved one. Caregiving is a lonely existence. We need to slow our pace to match theirs, try to 'read' expressions on the face, and perhaps guess what the person is feeling. This is hard work. We need to reach out to the person, not get stuck in the label Alzheimer's. Maybe we'd have more of a chance to have that shared journey and not be so lonely.
This is unusual because most who get Alzheimer's are not linguists or poets . They can't express these feelings easily if at all. Do they suffer alone? What can we as caregivers do to help? Reading the book gave me insight into what it might be like to know you are losing your cognitive abilities. It gave me more empathy towards those who cannot express their feelings. As caregivers we need to be sensitive to the struggles to understand that the person with the disease must have. One patient said, "I go to talk and words run away and hide." As I read this book I became anxious and sometimes felt jealous anger about his being able to express his confusion,fear and frustration. I remembered all the spouses who try to understand but can't what their partner is experiencing.Oh that all could do that; caregiving might take on a more shared experience. As it is, most caregivers complain of missing conversation, companionship of their loved one. Caregiving is a lonely existence. We need to slow our pace to match theirs, try to 'read' expressions on the face, and perhaps guess what the person is feeling. This is hard work. We need to reach out to the person, not get stuck in the label Alzheimer's. Maybe we'd have more of a chance to have that shared journey and not be so lonely.
Tuesday, August 17, 2010
Visit our website www.StilMee.com
StilMee's website is updated with all the services we offer. I am excited about the family forum trainings we'll offer in the fall and the StilMee Certification Training for professionals. 5 CEUs for social workers makes it a great way to expand your knowledge of working with folks with dementia. If you are in the healthcare field you will have contact with both those with dementia from various causes and their families. I guess I've always gravitated toward educating the caregivers in whatever healthcare field I was in at the time. I had an educational support group for families of mentally ill people at Deaconess Hospital in the late 70s and early 80s. It amazed me to find the lack of knowledge of the diagnosis a family member had. This is true today of families who muddle through caring for someone with dementia. There is no reason a person must 'muddle' through! There is valuable education from a coach, from support groups, from the Help Line at the Alzheimer's Association 800-272-3900, and books. I'm including a bibliography here that can start you on your way to confidence.
Alzheimer’s A Caregiver’s Guide and Sourcebook by Howard Gruetzner; John Wiley and Sons, Inc. New York, 1992.
Alzheimer’s Early Stages; first steps in caring and treatment by Daniel Kuhn, MSW; Hunter House Publishers, Inc., California 1998.
Care That Works; A Relationship Approach to Persons with Dementia by Jitka M. Zgola, Johns Hopkins University Press, Baltimore and London, 1999.
Learning to Speak Alzheimers by Joanne Koenig Coste, Houghton Mifflin Company, Boston and New York, 2003.
Matters of the Mind…and the Heart Meeting the challenges of Alzheimer care by Beverly Moore, Strategic Book Publishing, New York, New York 2009.
Rethinking Alzheimer’s Care by Sam Fazio, Dorothy Seman, & Jane Stansell, Heatlh Professions Press, Baltimore, London, Winnepeg & Sidney.
I'm Still Here by John Zeisel PhD, Penguin a division of Avery Publishing, NY, NY.
Alzheimer’s A Caregiver’s Guide and Sourcebook by Howard Gruetzner; John Wiley and Sons, Inc. New York, 1992.
Alzheimer’s Early Stages; first steps in caring and treatment by Daniel Kuhn, MSW; Hunter House Publishers, Inc., California 1998.
Care That Works; A Relationship Approach to Persons with Dementia by Jitka M. Zgola, Johns Hopkins University Press, Baltimore and London, 1999.
Learning to Speak Alzheimers by Joanne Koenig Coste, Houghton Mifflin Company, Boston and New York, 2003.
Matters of the Mind…and the Heart Meeting the challenges of Alzheimer care by Beverly Moore, Strategic Book Publishing, New York, New York 2009.
Rethinking Alzheimer’s Care by Sam Fazio, Dorothy Seman, & Jane Stansell, Heatlh Professions Press, Baltimore, London, Winnepeg & Sidney.
I'm Still Here by John Zeisel PhD, Penguin a division of Avery Publishing, NY, NY.
Tuesday, July 27, 2010
Marriage and Alzheimer's
An Alzheimer diagnosis of a spouse is a life crisis. Life is irrevocably altered. When one is sick, two need care. The healthy spouse is grieving the loss of his or her other half. Roles change, identity as a husband or wife changes, and there is more often than not a social change. People shy away from inviting you as a couple, perhaps fearing looking at the change, or embarrassed around the ill friend.
Sexuality changes; sometimes spouses withdraw from the diagnosed spouse and feel that sexual expression now is inappropriate or distasteful. There are hygiene issues, fear that the partner will forget who their partner is.
If a couple can preserve aspects of their sexual relationship, there is still a sense of 'couple'. Other times passion is relabeled compassion. There may be lonliness within the relationship; the relationship now defined by loyalty, not necessarily love. If less attracted to the mate, there is guilt around rejecting advances. Males may wonder if sex is still consentual, and don't make advances. Couples need help accepting the many losses in their marriage when a diagnosis of Alzheimer's is given. They must learn other ways of communicating caring.
The couples I've coached over the years mostly talk about the loss of relationship; little conversation or one sided, the well spouse carrying the conversation.
I'd love to hear from spouses and what you've discovered in your experience and how you've found solutions.
Sexuality changes; sometimes spouses withdraw from the diagnosed spouse and feel that sexual expression now is inappropriate or distasteful. There are hygiene issues, fear that the partner will forget who their partner is.
If a couple can preserve aspects of their sexual relationship, there is still a sense of 'couple'. Other times passion is relabeled compassion. There may be lonliness within the relationship; the relationship now defined by loyalty, not necessarily love. If less attracted to the mate, there is guilt around rejecting advances. Males may wonder if sex is still consentual, and don't make advances. Couples need help accepting the many losses in their marriage when a diagnosis of Alzheimer's is given. They must learn other ways of communicating caring.
The couples I've coached over the years mostly talk about the loss of relationship; little conversation or one sided, the well spouse carrying the conversation.
I'd love to hear from spouses and what you've discovered in your experience and how you've found solutions.
Friday, July 23, 2010
The Seasons of Caregiving
When I was very little my mother introduced me as her little nurse. Did that have anything to do with my choice of professions? I’ve focused my last 32 years in the mental health field. I thought about this question “Why that population; the mentally ill and now the cognitively impaired and their caregivers?”.
I grew up hearing about my uncle Harold who was hospitalized when he was 27 for acting in a bizarre harmful way towards his mother. He spent the next 50 years in mental institutions. I visited him once when I was a student nurse on rotation at Medfield State Hospital and talked with a mild mannered pleasant man who looked just like his sister,my mother. I started to think how terrible for him to have had a psychotic break before the advent of psychotropic drugs. He missed out on 50 years of family life and perhaps years of pursuing and enjoying his dream of teaching. Today he would be treated with medications and probably released within a week or two….if his insurance company allowed that long.
The helper’s journey goes through seasons as I see it. First comes the spring; an awakening of a need of a person or population. There is the gathering of tools; information, education, and skill building.
As the skills needed to help are developed and refined, the summer brings confidence in oneself as helper. There may be a broadening or narrowing of the area in which we see we can best be effective. This may be grant writing, lobbying, directing, speaking,or teaching for the professional or hands on care. We find out what brings us satisfaction.
When I asked an audience in an assisted living residence to look at the satisfaction factor, we found some realized it in bringing comfort to the elder, others in teaching them easier ways of caring for themselves, others in advocating for services. The helper sees “This is how I can make a difference and feel satisfied doing it”
As caregiving continues there is a fall season in which there is ‘more of the same’, or little improvement in spite of our best efforts. There is a danger here of despair or burnout. This is the time when affirmation of what has been accomplished by our efforts becomes important. New ideas get generated as one reaches out to others for help in continuing.
Winter is a season of endings; perhaps that of a career, a program or an area of compassionate work. I underestimated the grief I felt 3 years ago when a program I developed and worked at for seven years waned as budget crunches emerged and finally ended for me when I was laid off. This is a time of new beginnings as well as endings.
And so we continue our individual journeys, learning about ourselves along the way, learning more about how to work with others in a team, and perhaps learning to let go when a caregiving area ends.
During all these seasons, the gift of appreciation and validation of work a person does cannot be overstated. We can each care for our team members who are helpers in their own unique way. An attitude of gratitude and appreciation among workers spreads like wildfire the same as an attitude of complaining and blaming can. We can choose the attitude of gratitude and carry on with our journey and support others in theirs.
I grew up hearing about my uncle Harold who was hospitalized when he was 27 for acting in a bizarre harmful way towards his mother. He spent the next 50 years in mental institutions. I visited him once when I was a student nurse on rotation at Medfield State Hospital and talked with a mild mannered pleasant man who looked just like his sister,my mother. I started to think how terrible for him to have had a psychotic break before the advent of psychotropic drugs. He missed out on 50 years of family life and perhaps years of pursuing and enjoying his dream of teaching. Today he would be treated with medications and probably released within a week or two….if his insurance company allowed that long.
The helper’s journey goes through seasons as I see it. First comes the spring; an awakening of a need of a person or population. There is the gathering of tools; information, education, and skill building.
As the skills needed to help are developed and refined, the summer brings confidence in oneself as helper. There may be a broadening or narrowing of the area in which we see we can best be effective. This may be grant writing, lobbying, directing, speaking,or teaching for the professional or hands on care. We find out what brings us satisfaction.
When I asked an audience in an assisted living residence to look at the satisfaction factor, we found some realized it in bringing comfort to the elder, others in teaching them easier ways of caring for themselves, others in advocating for services. The helper sees “This is how I can make a difference and feel satisfied doing it”
As caregiving continues there is a fall season in which there is ‘more of the same’, or little improvement in spite of our best efforts. There is a danger here of despair or burnout. This is the time when affirmation of what has been accomplished by our efforts becomes important. New ideas get generated as one reaches out to others for help in continuing.
Winter is a season of endings; perhaps that of a career, a program or an area of compassionate work. I underestimated the grief I felt 3 years ago when a program I developed and worked at for seven years waned as budget crunches emerged and finally ended for me when I was laid off. This is a time of new beginnings as well as endings.
And so we continue our individual journeys, learning about ourselves along the way, learning more about how to work with others in a team, and perhaps learning to let go when a caregiving area ends.
During all these seasons, the gift of appreciation and validation of work a person does cannot be overstated. We can each care for our team members who are helpers in their own unique way. An attitude of gratitude and appreciation among workers spreads like wildfire the same as an attitude of complaining and blaming can. We can choose the attitude of gratitude and carry on with our journey and support others in theirs.
Wednesday, July 21, 2010
A Matter of her mind...and my Heart
I'm beginning a new book about my Alzheimer caregiving journey, sometimes peaceful, sometimes not, with my mother in law, Bette. This is the opening paragraph. I'm hoping it helps others to read it as it did me to write it.
I should call this Confessions of an Alzheimer Coach. As I read back on the last 10 years of caring for Bette, I am aware of how much I’ve learned since the beginning, when I thought I knew a lot about Alzheimer care. It was after my father in law died of Alzheimer’s in 1996, that I realized Bette would require more attention. I didn’t know then just how much attention she would need and how little of what she needed she’d be wanting or accept. I confess I was a very reluctant caregiver, only agreeing to become primary caregiver to relieve my husband of a job he was ill-equipped to handle mainly because he loved her too much. His sister, although living nearby her mother, didn’t drive due to low vision and had limited knowledge of Alzheimer’s and the medical systems her mother would need. And so I accepted the position that would prove very challenging, frustrating, frightening in its impact on my marriage, my caring for my own mother and my feeling of emotional well being.
I’m writing this for one reason only; so caregivers can console themselves for the mistakes, the failures in care and the lack of heart for the job of caregiving. And, now one year after her death at 99 years of age, I can stand back and assess what kind of caregivers we were. As a professional, a nurse and owning a business coaching Alzheimer caregivers, I can adopt the professional stance when working with families. I often look very smart and an expert on Alzheimer’s. I have studied a great deal about the disease and caring with Habilitation Therapy approaches. I don’t really believe there are any experts on Alzheimer’s disease; just people who specialize in it. We learn very quickly there is no Alzheimer archetype to go by; no concrete model or typical patient. Each person is unique as he should be. A person expresses this crazy disease out of his experience coping with the world and its challenges. Whatever worked in the past to make a person feel as if they could relate in the world will be magnified in their response to the disease.
Probably the most difficult person to care for who has Alzheimer’s or any related dementia is the independent strong minded person who never felt they needed anybody. They handled life the way they saw it; they coped well, or perhaps sometimes not so well by others’ viewpoint, without adopting anyone else’s way but their own. I coached a man once whose wife had many difficult to manage behaviors. She resisted care, wandered, refused to wear protective underwear for her incontinence, and became belligerent when bathed or dressed. I asked him on our last coaching visit, “Is there anything in this that is positive for you?” “Oh, yes.” He exclaimed, “She needs me. She’s never needed me before, always so competent. It’s the first time in our 48 years of marriage that I feel essential. That feels good!”
My mother in law was such a woman.
I should call this Confessions of an Alzheimer Coach. As I read back on the last 10 years of caring for Bette, I am aware of how much I’ve learned since the beginning, when I thought I knew a lot about Alzheimer care. It was after my father in law died of Alzheimer’s in 1996, that I realized Bette would require more attention. I didn’t know then just how much attention she would need and how little of what she needed she’d be wanting or accept. I confess I was a very reluctant caregiver, only agreeing to become primary caregiver to relieve my husband of a job he was ill-equipped to handle mainly because he loved her too much. His sister, although living nearby her mother, didn’t drive due to low vision and had limited knowledge of Alzheimer’s and the medical systems her mother would need. And so I accepted the position that would prove very challenging, frustrating, frightening in its impact on my marriage, my caring for my own mother and my feeling of emotional well being.
I’m writing this for one reason only; so caregivers can console themselves for the mistakes, the failures in care and the lack of heart for the job of caregiving. And, now one year after her death at 99 years of age, I can stand back and assess what kind of caregivers we were. As a professional, a nurse and owning a business coaching Alzheimer caregivers, I can adopt the professional stance when working with families. I often look very smart and an expert on Alzheimer’s. I have studied a great deal about the disease and caring with Habilitation Therapy approaches. I don’t really believe there are any experts on Alzheimer’s disease; just people who specialize in it. We learn very quickly there is no Alzheimer archetype to go by; no concrete model or typical patient. Each person is unique as he should be. A person expresses this crazy disease out of his experience coping with the world and its challenges. Whatever worked in the past to make a person feel as if they could relate in the world will be magnified in their response to the disease.
Probably the most difficult person to care for who has Alzheimer’s or any related dementia is the independent strong minded person who never felt they needed anybody. They handled life the way they saw it; they coped well, or perhaps sometimes not so well by others’ viewpoint, without adopting anyone else’s way but their own. I coached a man once whose wife had many difficult to manage behaviors. She resisted care, wandered, refused to wear protective underwear for her incontinence, and became belligerent when bathed or dressed. I asked him on our last coaching visit, “Is there anything in this that is positive for you?” “Oh, yes.” He exclaimed, “She needs me. She’s never needed me before, always so competent. It’s the first time in our 48 years of marriage that I feel essential. That feels good!”
My mother in law was such a woman.
Monday, July 5, 2010
Five Facts every caregiver must know
FIVE FACTS EVERY ALZHEIMER CAREGIVER MUST KNOW
1. THE PERSON WITH ALZHEIMER'S IS STILL A FULL PERSON; RELATE TO HIS PERSON
2. THE PERSON WITH ALZHEIMER'S CAN LEARN; WHEN GIVEN TIME AND LOW FRUSTRATION LEVEL,
HE CAN LEARN NEW THINGS AND ENJOY IT. GO TO WWW.SERPERMETHOD.COM FOR MORE.
3. THE PERSON WITH ALZHEIMER'S HAS MORE BRAIN POWER LEFT THAN IS GONE; TAP INTO
WHAT IS REMAINING AND ENJOY HIM.
4. THE PERSON WITH ALZHEIMER'S HAS A FUTURE (MAYBE MORE THAN YOU OR I HAVE).
MAKE IT A MEANINGFUL FUTURE.
5. AN ALZHEIMER CAREGIVER CANNOT DO IT ALONE; ASK AND ACCEPT HELP.
1. THE PERSON WITH ALZHEIMER'S IS STILL A FULL PERSON; RELATE TO HIS PERSON
2. THE PERSON WITH ALZHEIMER'S CAN LEARN; WHEN GIVEN TIME AND LOW FRUSTRATION LEVEL,
HE CAN LEARN NEW THINGS AND ENJOY IT. GO TO WWW.SERPERMETHOD.COM FOR MORE.
3. THE PERSON WITH ALZHEIMER'S HAS MORE BRAIN POWER LEFT THAN IS GONE; TAP INTO
WHAT IS REMAINING AND ENJOY HIM.
4. THE PERSON WITH ALZHEIMER'S HAS A FUTURE (MAYBE MORE THAN YOU OR I HAVE).
MAKE IT A MEANINGFUL FUTURE.
5. AN ALZHEIMER CAREGIVER CANNOT DO IT ALONE; ASK AND ACCEPT HELP.
Sunday, April 25, 2010
The Nature of Caring; A talk I gave in 2008
The Nature of Caring; the Helper’s Journey
Beverly L. Moore
What is caring? Why do people choose to care for others? How do we keep caring without burning out? People through the ages have taken care of others; their family members and sometimes strangers. The story, the Good Samaritan, in the Bible (Luke 10: 30-36) is a story of a wise compassionate helper. While two religious leaders passed by a wounded man in the road, a Samaritan stopped, washed and bound the man’s wounds, placed him on his donkey, brought him to an inn, and paid for his stay at an inn while he recuperated. He returned on his return trip to see if the innkeeper needed more money to care for the wounded man. Why did he stop when the others didn’t? He had compassion.
All of you are here because you are compassionate people. You’ve taken it upon yourselves to help another lead a healthier safer life in sickness of body, mind or soul. You are special people.
I’ve learned some things working with caregivers for some 30 years; first, most caregivers don’t see themselves as caregivers at all, and expect no recognition for what they do. They just do what they feel needs to be done. “I’m his wife, of course I am going to care for him.” “My mother cared for me all my life; now it is my turn to care for her.” Others with little motivation to care, simply say “someone has to do it; I guess it is me.”
Caring can take the form of being there emotionally, socially, spiritually, financially, physically to someone disabled. There are all kinds of disabilities; some may not be apparent to a casual observer. You can’t see depression, mental illness, or a cognitive impairment like Alzheimer’s disease. The cognitive disabilities call for a different kind of care. There is sometimes little cooperation from the person being cared for, making care more difficult and emotionally stressful, and lonely if done alone.
When a person needs help short term giving help is often doable. When that short term turns into a long term commitment one must give over and over, sometimes with little improvement, perhaps little thanks from the person cared for or from other family members.
There are stages in caregiving, and the needs are a bit different in each. In each season or stage there are pleasures and pitfalls.
When there is an awakening to a need which I call the spring season, education and resources are needed. Once these are in place the caregiver feels empowered to make a difference. I call this the summer season of caregiving. The caregiver feels satisfaction in being able to make a difference. A caregiver needs this feeling of satisfaction and control to persevere on the journey. Later on, however, there is a time when the caregiving continues and one sees little, slow, or no improvement, perhaps even decline in spite of one’s best efforts. I call this the fall season, when tiring of an often thankless job is common. In this stage the caregiver may need new information, new management tools and further resources as well as emotional support during the grieving process. The last season is winter, that period of saying goodbye, perhaps deciding that long term placement or hospice is needed. This is time for grieving the loss and thinking about moving on in life. ( I believe there is ongoing grief in a progressive illness as well as an anticipatory grief in looking to the future.)
What keeps us going through these stages? It is said that the caregiver needs 3 things; satisfaction, a sense of control, and validation. What gives you satisfaction to keep going? What does that look like? Wherein do you find a sense of control over the progression of the disability or disease? And where do you get validation for what you do?
The pleasures or benefits of the caregiving journey:
• Discovering who you are anew
• Discovering a sense of mastery
• Discovering new ideas, interests, skills
• New or renewed relationship with the person cared for.
• A new relationship with other family and friends
• Time to say ‘thank you’
• Time to say ‘I forgive you’
There are times, however, when none or few of the needs are met. We care as if involved on a continuum; sometimes we need to detach ourselves, other times we become over involved. A healthy place is to have a detached involvement, a place of keeping ourselves intact emotionally while deeply involved in caring. It is almost a professional stance that is self preserving. Because our caregiving is personal, not ‘professional’, we are apt to feel burnt out from time to time. Remember, only people ‘on fire’, burn out. Having compassion is the nature of, and a risk in caregiving. How can we avoid getting burnt out and falling into the ‘helper’s pit’?
The pitfalls of caregiving are:
• Trying to do it alone
• Refusing relief
• Doing it too long
• Jeopardizing one’s health and well being in service of another.
Can you add to this list? How about anger and resentment? How does that creep in and what do you do about it?
I’ve also learned that each caregiver has a ‘perceived burden’ in the experience. Each one’s tolerance is different; for one, a task is nothing, to another, a major problem. Each person needs different help, each sees respite or relief differently. It is a personal journey, so…………..
What is caregiving to you?
What are the rewards?
Do the rewards outweigh the problems?
What are the problems? What is the ‘perceived burden’ to you?
What would ease the burden of caring for you?
What season of caregiving are you in?
What do you need to keep going?
What does respite (time out) look like to you? Do you take it?
Do you accept help from others when offered?
What do you do when you need help and no one offers? Can you ask?
How do you handle others resistance/refusal to helping you?
Where or to whom do you go for relief or comfort?
Beverly L. Moore, RN, CS
StilMee™
The leader in Alzheimer coaching™
‘ Making for a more peaceful caregiving journey’
Serving Eastern Massachusetts and northeastern Rhode Island
Serving anywhere in the U.S.A by telephone.
www.StilMee.com
Beverly L. Moore
What is caring? Why do people choose to care for others? How do we keep caring without burning out? People through the ages have taken care of others; their family members and sometimes strangers. The story, the Good Samaritan, in the Bible (Luke 10: 30-36) is a story of a wise compassionate helper. While two religious leaders passed by a wounded man in the road, a Samaritan stopped, washed and bound the man’s wounds, placed him on his donkey, brought him to an inn, and paid for his stay at an inn while he recuperated. He returned on his return trip to see if the innkeeper needed more money to care for the wounded man. Why did he stop when the others didn’t? He had compassion.
All of you are here because you are compassionate people. You’ve taken it upon yourselves to help another lead a healthier safer life in sickness of body, mind or soul. You are special people.
I’ve learned some things working with caregivers for some 30 years; first, most caregivers don’t see themselves as caregivers at all, and expect no recognition for what they do. They just do what they feel needs to be done. “I’m his wife, of course I am going to care for him.” “My mother cared for me all my life; now it is my turn to care for her.” Others with little motivation to care, simply say “someone has to do it; I guess it is me.”
Caring can take the form of being there emotionally, socially, spiritually, financially, physically to someone disabled. There are all kinds of disabilities; some may not be apparent to a casual observer. You can’t see depression, mental illness, or a cognitive impairment like Alzheimer’s disease. The cognitive disabilities call for a different kind of care. There is sometimes little cooperation from the person being cared for, making care more difficult and emotionally stressful, and lonely if done alone.
When a person needs help short term giving help is often doable. When that short term turns into a long term commitment one must give over and over, sometimes with little improvement, perhaps little thanks from the person cared for or from other family members.
There are stages in caregiving, and the needs are a bit different in each. In each season or stage there are pleasures and pitfalls.
When there is an awakening to a need which I call the spring season, education and resources are needed. Once these are in place the caregiver feels empowered to make a difference. I call this the summer season of caregiving. The caregiver feels satisfaction in being able to make a difference. A caregiver needs this feeling of satisfaction and control to persevere on the journey. Later on, however, there is a time when the caregiving continues and one sees little, slow, or no improvement, perhaps even decline in spite of one’s best efforts. I call this the fall season, when tiring of an often thankless job is common. In this stage the caregiver may need new information, new management tools and further resources as well as emotional support during the grieving process. The last season is winter, that period of saying goodbye, perhaps deciding that long term placement or hospice is needed. This is time for grieving the loss and thinking about moving on in life. ( I believe there is ongoing grief in a progressive illness as well as an anticipatory grief in looking to the future.)
What keeps us going through these stages? It is said that the caregiver needs 3 things; satisfaction, a sense of control, and validation. What gives you satisfaction to keep going? What does that look like? Wherein do you find a sense of control over the progression of the disability or disease? And where do you get validation for what you do?
The pleasures or benefits of the caregiving journey:
• Discovering who you are anew
• Discovering a sense of mastery
• Discovering new ideas, interests, skills
• New or renewed relationship with the person cared for.
• A new relationship with other family and friends
• Time to say ‘thank you’
• Time to say ‘I forgive you’
There are times, however, when none or few of the needs are met. We care as if involved on a continuum; sometimes we need to detach ourselves, other times we become over involved. A healthy place is to have a detached involvement, a place of keeping ourselves intact emotionally while deeply involved in caring. It is almost a professional stance that is self preserving. Because our caregiving is personal, not ‘professional’, we are apt to feel burnt out from time to time. Remember, only people ‘on fire’, burn out. Having compassion is the nature of, and a risk in caregiving. How can we avoid getting burnt out and falling into the ‘helper’s pit’?
The pitfalls of caregiving are:
• Trying to do it alone
• Refusing relief
• Doing it too long
• Jeopardizing one’s health and well being in service of another.
Can you add to this list? How about anger and resentment? How does that creep in and what do you do about it?
I’ve also learned that each caregiver has a ‘perceived burden’ in the experience. Each one’s tolerance is different; for one, a task is nothing, to another, a major problem. Each person needs different help, each sees respite or relief differently. It is a personal journey, so…………..
What is caregiving to you?
What are the rewards?
Do the rewards outweigh the problems?
What are the problems? What is the ‘perceived burden’ to you?
What would ease the burden of caring for you?
What season of caregiving are you in?
What do you need to keep going?
What does respite (time out) look like to you? Do you take it?
Do you accept help from others when offered?
What do you do when you need help and no one offers? Can you ask?
How do you handle others resistance/refusal to helping you?
Where or to whom do you go for relief or comfort?
Beverly L. Moore, RN, CS
StilMee™
The leader in Alzheimer coaching™
‘ Making for a more peaceful caregiving journey’
Serving Eastern Massachusetts and northeastern Rhode Island
Serving anywhere in the U.S.A by telephone.
www.StilMee.com
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