I’m excited to announce my newest resource, By Your Side, A Guide for Caring for the Dying at Home. It is written for the family caregiver, who is caring for their loved one approaching end of life from old age or disease. The person who may be caring for their mother or father who is elderly and coming to the end of their life. Or a person who is caring for a partner who has a life threatening illness. It is also a much needed tool for those caring for a loved one who is approaching end of life from dementia.
Last year my husband became ill. I spent several weeks taking care of him. He recovered, BUT I WAS EXHAUSTED! Taking care of him as his primary caregiver was not only hard work, it was emotionally draining. He did not die, nor was I expecting him to, BUT being the caregiver caring for an 88 year old with a serious illness made me think about what other caregivers, with more serious life threatening illnesses must be feeling.
I’m a nurse and trained in the medical arena. I knew the questions to ask, the nutrition to try (operative word there is “try”) to get him to eat, the fluid intake and output to watch for. I knew a lot and still I was struggling.
I‘ve looked back on those weeks and thought if I can feel this way with my knowledge how does a person who has the same responsibilities with no training or knowledge provide care? How do they do this alone? Add to that the idea that death may be the end result of this caregiving and you add fear to all the feelings the caregiver is experiencing.
SO—-I took my decades of working in hospice and the end of life field, my experiences of caring for my own parents in my home, and my new experience of being a caregiver for my husband and wrote what I would tell someone who was thrust by life circumstances into the position of caring for someone who may not get better. Caring for them in their home for an undetermined amount of time and with few resources available to them.
I started with the premise that taking care of someone as the end of their life approaches is not the same as taking care of someone who is going to get better. BUT most people don’t know that. Most caregivers provide the care they would if someone were getting better—nutrition, sleeping, conversations, activity. We know what the guidelines are for getting better, most of us do not know the guidelines for caring for someone who probably isn’t going to get better.
By Your Side offers guidance in the area of making choices: cure, life sustaining, comfort care, making advanced directives, and funeral planning. It details signs of approaching death (what to look for and what to do about what you find), describes end of life care at home, medical equipment, oxygen, pain management, care of someone with dementia at end of life, and very importantly how to take care of yourself as you fulfill your role as caregiver. How you need to put your oxygen mask on first, as the airlines tell us, so we have the breath, the energy, to help another.
While caring for Jack I noticed my memory just disappeared, that I was not remembering important areas of his care. I was not only not remembering occurrences to report to the doctor but really simple things—-Did he poop today? How many times did he pee? Did he eat, sleep all day? I created a worksheet for myself that I filled as the day progressed. I then took the sheets with me to the doctor. I believe the worksheet which I’ve include is simple, comprehensive, and you’ll find it helpful in being organized in providing care.
The journey of caring for your special person will be challenging and exhausting. My hope is that with this guidebook and the support of others (family, community, and professionals) this experience will be a special time for you that will become a sacred memory.
Something More… about It’s Here! By Your Side, A Guide for Caring for the Dying at Home
I want to encourage my dear end-of life Doulas to use this book as a tool for the families they work with. This book covers how to write an advance directive, to how to get medical equipment and even how to care for yourself as a caregiver. There are “Daily Care Plan” forms and pain management guidance. This is a valuable offering for you to support your families.
8 comments
SandeeForeshee
Some guidance please. Ive known this responsibility would come, and ive chosen the challenge. This lady, 82. Shes a breast cancer survivor +2. Her heath, mind and body, well lets just say, her life is on hold right now for she needs hip surgery, got all the tests back from her gp giving the go ahead but the surgeon schedules sept 8! Is there any info. You may suggest i really think its gonna be a bad outcome, shes used yo working in her yard, taking herdsrlk
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BK Books replied:
Hi Sandee, it’s frustrating that the health care system, as well as just about everything, has a long waiting list (thank you covid). What to do between now and September, focus on good nutrition and some activity. Maybe chair exercises for her arms, keep her spirits up, laugh, bring her joy. Blessings to you both during this challenging time. Barbara
Some guidance please. Ive known this responsibility would come, and ive chosen the challenge. This lady, 82. Shes a breast cancer survivor +2. Her heath, mind and body, well lets just say, her life is on hold right now for she needs hip surgery, got all the tests back from her gp giving the go ahead but the surgeon schedules sept 8! Is there any info. You may suggest i really think its gonna be a bad outcome, shes used yo working in her yard, taking herdsrlk
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BK Books replied:
Hi Sandee, it’s frustrating that the health care system, as well as just about everything, has a long waiting list (thank you covid). What to do between now and September, focus on good nutrition and some activity. Maybe chair exercises for her arms, keep her spirits up, laugh, bring her joy. Blessings to you both during this challenging time. Barbara
Kathleen Lechner
This is definitely a must read for all generations.
This is definitely a must read for all generations.
Faith
I so agree Rena. It is not easy for any of us. I have learned and passed on so much from Barbara’s Books. I’m truly grateful for the easy to understand style of her writing and wealth of information.
Faith
I so agree Rena. It is not easy for any of us. I have learned and passed on so much from Barbara’s Books. I’m truly grateful for the easy to understand style of her writing and wealth of information.
Faith
Lorrie
I have all my ducks in a row.
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BK Books replied:
Hi Lorrie, Good for you. We all need to have our “affairs in order”. Blessings! Barbara
I have all my ducks in a row.
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BK Books replied:
Hi Lorrie, Good for you. We all need to have our “affairs in order”. Blessings! Barbara
Lorrie
I am 90 and take only synthroid. But I do not want to die at home and put all that burden on my daughter. I am wearing out with most notably fatigue. All blood work is fine. I don’t know what to do. I will give up driving because of my eyesight. if I go to independent living that will relieve her of some things like grocery shopping and doc appointments. I am at a loss what to do. I can afford independent living but assisted living is impossible. I am very fortunate but I do not want to burden my daughter . She has been gracious but having cared for my husband with dementia I understand the horrible burden caregiving takes.
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BK Books replied:
Hi Lorrie, talk with your daughter, tell her your concerns for her, work out a plan for the future that is agreeable to both of you. I don’t know your daughter, but I will say many adult children feel it is a gift to return the care to their parents that they have been given their entire life. A closing of the circle so to speak. It is a gift she may want to give you. Let her. Blessings to both of you. Barbara
I am 90 and take only synthroid. But I do not want to die at home and put all that burden on my daughter. I am wearing out with most notably fatigue. All blood work is fine. I don’t know what to do. I will give up driving because of my eyesight. if I go to independent living that will relieve her of some things like grocery shopping and doc appointments. I am at a loss what to do. I can afford independent living but assisted living is impossible. I am very fortunate but I do not want to burden my daughter . She has been gracious but having cared for my husband with dementia I understand the horrible burden caregiving takes.
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BK Books replied:
Hi Lorrie, talk with your daughter, tell her your concerns for her, work out a plan for the future that is agreeable to both of you. I don’t know your daughter, but I will say many adult children feel it is a gift to return the care to their parents that they have been given their entire life. A closing of the circle so to speak. It is a gift she may want to give you. Let her. Blessings to both of you. Barbara
Lisa
Barbara,
I learned of your new book through my End of Life Doula book club. I am also an experienced CNA. I was so excited to get your new guide. Like you mentioned, even when you are a knowledgeable professional, you still need help – especially in a home based setting. I think that it’s a great tool for everyone. Thank you, as always, for your insightful material.
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BK Books replied:
Hi Lisa, The Book Club is a great place to learn and share ideas. I so enjoy doing it. Blessings to you and the help you are giving others. Barbara
Barbara,
I learned of your new book through my End of Life Doula book club. I am also an experienced CNA. I was so excited to get your new guide. Like you mentioned, even when you are a knowledgeable professional, you still need help – especially in a home based setting. I think that it’s a great tool for everyone. Thank you, as always, for your insightful material.
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BK Books replied:
Hi Lisa, The Book Club is a great place to learn and share ideas. I so enjoy doing it. Blessings to you and the help you are giving others. Barbara
Christine Anderson
Hi Barbara….Boy, I could have used this in 2015 when I took care of my 90 yr. old Dad. And I had just completed a course in Brevard county, Melbourne Florida for end of life caregivers, and I never saw the signs. When Dad was in hospice, tho, they gave us your booklets about the signs of dying so we would know what to watch for. I must say I was hypervigilant throughout those 5 days. Dad really wanted to leave, but he kept telling me that St. Peter kept telling him it wasn’t time yet.
Having Dad in hospice, and walking around the William Childs Hospice in Palm Bay, Wi, part of the Health First Community really put us at peace. I keep telling my partner that when my time comes, if I’m able, that’s where I want to go!
Thank you for your insightful thought in writing this information in words we can all understand. It has been a great help and solace to those of us who need it.
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BK Books replied:
Hi Christine, as you point out having loving, knowledge filled support as end of life approaches is what we all want when it is our time to leave. Thank you for sharing your experience. Blessings! Barbara
Hi Barbara….Boy, I could have used this in 2015 when I took care of my 90 yr. old Dad. And I had just completed a course in Brevard county, Melbourne Florida for end of life caregivers, and I never saw the signs. When Dad was in hospice, tho, they gave us your booklets about the signs of dying so we would know what to watch for. I must say I was hypervigilant throughout those 5 days. Dad really wanted to leave, but he kept telling me that St. Peter kept telling him it wasn’t time yet.
Having Dad in hospice, and walking around the William Childs Hospice in Palm Bay, Wi, part of the Health First Community really put us at peace. I keep telling my partner that when my time comes, if I’m able, that’s where I want to go!
Thank you for your insightful thought in writing this information in words we can all understand. It has been a great help and solace to those of us who need it.
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BK Books replied:
Hi Christine, as you point out having loving, knowledge filled support as end of life approaches is what we all want when it is our time to leave. Thank you for sharing your experience. Blessings! Barbara
Rena Stricker
Barbara
This is exactly what all of us need,no matter who we are or what profession we are.
I also am a nurse and most people assume we know everything and it is easy for us to care for a loved one.
It is not easy for any of us
Thankyou
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BK Books replied:
Thank you, Rena. Blessings to you in the work you are doing. Barbara
Barbara
This is exactly what all of us need,no matter who we are or what profession we are.
I also am a nurse and most people assume we know everything and it is easy for us to care for a loved one.
It is not easy for any of us
Thankyou
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BK Books replied:
Thank you, Rena. Blessings to you in the work you are doing. Barbara