Taking care of someone as they approach the end of their life is hard, scary, frustrating, sad, and often guilt-ridden work. Caregivers carry the burden of care but are often invisible.
We tend to give our attention to the patient by focusing on their wants, needs and changes. We come, often bringing gifts and food, and we sit with the patient. We talk, tell stories, try to laugh, then we say goodbye and leave.
Meanwhile, the caregiver is behind the scenes doing all the work, receiving no attention, receiving no acknowledgment.
My hope in writing this blog is to draw our attention to the “unsung heroes” caring for their special person as end of life approaches, as well as to those caring for family and significant others who are not dying but in need of care. These people do the physical work while carrying the emotional burden of caring for someone they know and have a relationship (positive or negative) with.
Caregiving is 24/7 work. The nights are usually the hardest. The dark, quiet, alone time is when it seems the “goblins” of fear, exhaustion, and general tiredness come out.
Family caregivers are untrained in physical care giving, let alone in end of life care. Think of the fear they carry knowing their special person is dying, will die, and that they are responsible for providing comfort and meeting the physical needs.
Enter hospice and end of life doulas. Their focus is as much about the caregiver as it is the patient. Now the caregiver is not alone, is not as unsure, has knowledge, support, and attention.
I suggest in addition to end of life guidance and support offered by professional end of life workers, the caregiver finds a friend who can be their support person. A friend they can call to cry or yell with. A friend who we can say “I’m scared. I’m tired. I’m mad. I’m frustrated” with. A friend that won’t have answers or even necessarily words, but who will listen.
Those of you who are caregivers know that love is a verb as well as a noun. It is an action word. It can be expressed in doing. By giving your time, your attention, and your energy you are LOVING the person you are caring for. Through the frustration, the tiredness, and the aloneness you are actively loving. What a beautiful gift you are giving.
Something More… about Caregivers Carry The Burden
As a caregiver for my dying husband I found it helpful to have my By Your Side: Caring For The Dying At Home guidebook, well, by my side, to log medications, prepare for his funeral, use the self-care tips and have friends & family read about what to expect when they visited with Jack. I hope that it eases the very heavy lift of caregiving for you and your family.
3 comments
Gina
Thank you Barbara for your emails and blogs which have reassured and guided me! I am a registered nurse from Canada, and recently supported my Mom who had pulmonary fibrosis and passed away Sept 2025. I will say my Dad, an 84 year old gentleman was so consistent and loving in his care of my mother. He is truly the hero in my mind and heart! Truly a living parable of what love looks like. Thank you for highlighting the importance of caregivers!
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BK Books replied:
Hi Gina, thank you for sharing. Blessings to you and your dad. Barbara
Thank you Barbara for your emails and blogs which have reassured and guided me! I am a registered nurse from Canada, and recently supported my Mom who had pulmonary fibrosis and passed away Sept 2025. I will say my Dad, an 84 year old gentleman was so consistent and loving in his care of my mother. He is truly the hero in my mind and heart! Truly a living parable of what love looks like. Thank you for highlighting the importance of caregivers!
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BK Books replied:
Hi Gina, thank you for sharing. Blessings to you and your dad. Barbara
Amy Derck
So true and so sad. I was a Caregiver for my husband with Multiple Myeloma for 20 years. He was a great patient, full of hope, humor and love. We tried to make the best life we could for ourselves despite the MM. And he had good care until COVID when there were staff shortages and overcrowded hospitals. That’s when the medical staff started sending medical procedures home for the Caregiver to perform. And after all those years of chemo, that’s when my husband needed more and more care from me at home. And if it weren’t for my sister and her husband who listened to my frustrations and sadness, offering encouragement and loving kindness, I don’t know where I’d be right now. That’s why I was compelled to write a book about our journey and include ideas and practices for inspiration and self-care for Caregivers. It not only helped me heal, but seems to help other Caregivers who have the book and respond to me. I had a friend who meant well tell me I should stop giving my book away to Caregivers. “Tell them to go to Amazon and order it,” she said. She meant well, but was never a Caregiver. And I told her, "when Caregivers take their loved one home, they have 20+ chores waiting for them when they walk in the door. They don’t have time to sit down and scroll Amazon to find a book. And to see their eyes when I place a book in their hand, the understanding, the knowing someone cares, hat’s worth all the gold in the Kingdom. Amy Derck
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BK Books replied:
Hi Amy, thank you for sharing your experience as your husband’s caregiver. 20 years is a very long time. Sounds like you learned a lot. Blessings to you. Barbara
So true and so sad. I was a Caregiver for my husband with Multiple Myeloma for 20 years. He was a great patient, full of hope, humor and love. We tried to make the best life we could for ourselves despite the MM. And he had good care until COVID when there were staff shortages and overcrowded hospitals. That’s when the medical staff started sending medical procedures home for the Caregiver to perform. And after all those years of chemo, that’s when my husband needed more and more care from me at home. And if it weren’t for my sister and her husband who listened to my frustrations and sadness, offering encouragement and loving kindness, I don’t know where I’d be right now. That’s why I was compelled to write a book about our journey and include ideas and practices for inspiration and self-care for Caregivers. It not only helped me heal, but seems to help other Caregivers who have the book and respond to me. I had a friend who meant well tell me I should stop giving my book away to Caregivers. “Tell them to go to Amazon and order it,” she said. She meant well, but was never a Caregiver. And I told her, "when Caregivers take their loved one home, they have 20+ chores waiting for them when they walk in the door. They don’t have time to sit down and scroll Amazon to find a book. And to see their eyes when I place a book in their hand, the understanding, the knowing someone cares, hat’s worth all the gold in the Kingdom. Amy Derck
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BK Books replied:
Hi Amy, thank you for sharing your experience as your husband’s caregiver. 20 years is a very long time. Sounds like you learned a lot. Blessings to you. Barbara
Lee Amor
Hi Barbara. Thanks so much for your words. It does make such a huge difference to read about how we family care givers are kind of invisible. My beautiful wife (married 55 years ) was such a fun, bubbly person. We met when she was 16 and myself at 17.
We have shared the most wonderful times – sometimes hard of course but nothing like now. She is now non verbal, fully incontinent handicapped 2 year old who has unlearned everything. She is now in late stage dementia and fortunately is quite placid most of the time except for bouts of incredibly sad crying.I will always look after her until I’m unable to. Reading your words gives me such strength to carry on and I thank you deeply for that. Regards
Lee
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BK Books replied:
Hi Lee, it seems like being a caregiver for our special person when dementia is involved is even harder than care for other illnesses. It is like caring for a stranger a lot of the time. Blessings to the two of you as you travel this challenging life journey. Barbara
Hi Barbara. Thanks so much for your words. It does make such a huge difference to read about how we family care givers are kind of invisible. My beautiful wife (married 55 years ) was such a fun, bubbly person. We met when she was 16 and myself at 17.
We have shared the most wonderful times – sometimes hard of course but nothing like now. She is now non verbal, fully incontinent handicapped 2 year old who has unlearned everything. She is now in late stage dementia and fortunately is quite placid most of the time except for bouts of incredibly sad crying.I will always look after her until I’m unable to. Reading your words gives me such strength to carry on and I thank you deeply for that. Regards
Lee
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BK Books replied:
Hi Lee, it seems like being a caregiver for our special person when dementia is involved is even harder than care for other illnesses. It is like caring for a stranger a lot of the time. Blessings to the two of you as you travel this challenging life journey. Barbara