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.

Originally Published on https://bkbooks.com/blogs/something-to-think-about

Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.