Who Cares for the Caregiver?

Originally Published June 22, 2023

I've come to acknowledge I've been a caregiver for over 32 years. I've been caregiving for my daughter, my mom, and also my husband. I know caregiving very well. I am a caregiver.

I bet you know a caregiver; maybe you are one.

Caregivers are a focus these days. Terms like "caregiver burnout" ... "care for the caregiver" ... "caregiver grief" ... and "caregiver support groups" ... abound. Acknowledgment of the role caregivers play within our healthcare is important. It's the family caregiver who becomes responsible for being the lead in their loved one's medical care, and advocacy; managing medications, appointments, and personal care. It is a 24/7 job that can only be appreciated by those who are doing it. It is a lonely and isolating role to play with your loved one.

You become a nurse, therapist, housekeeper, bed changer, chauffeur, lead cook, and bottle washer. It's also likely the blue jobs that become pink jobs, or pink jobs that become blue jobs - depending on who is ill. Balancing all of this makes life intense.

Caregivers become frustrated, short-tempered, and exhausted. Each morning their feet hit the floor, and prayers fill their hearts "Let's make it through another day". Friends and family see and hear the weariness they carry; offering platitudes every caregiver has heard far too often. "Take care of yourself", "don't forget about you", "remember what you need", "get a pedicure", "take time for you". My friend Jennifer O-Brien, The Hospice Dr's Widow, calls this "self care shaming", and I absolutely love her for that! We both agree, well intentions are sometimes best simply left unsaid.

As a caregiver, there is little time to take care of yourself. If there is time, there is likely no energy. Exhaustion robs you of the capacity to even decide what you might want to enjoy, or how. There is no energy left for such decisions. The only thing you have energy for is sleep, and yet everyone will tell you ... "take care of yourself" ... "let me know if I can help". Help. Sometimes I am barely getting through the days and you want me to decide how you can help? It won't happen. Remember, I am already too exhausted to make another decision.

No matter the illness or disease your life becomes dictated by medications, appointments, symptoms of disease, exhaustion, and ongoing grief and loss. You bear witness to the person you love and the life you've lived forever changing. Your person focuses on their departure from this space and time, while you, the caregiver, try to figure out how you will survive it

You change. They change. Everything changes.

You stop talking about it. You just keep doing it. You are together. You are alone.

Who cares for the caregiver when everyone expects the caregiver to care for themselves, too? When the caregiver is expected to have the time, energy, and capacity to make their own caregiving decisions and ask for help. Impossible.

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About the author:

Karen Hendrickson is an Elevation Coach, focused on helping others to rewrite their life story, befriend their mortality, and find the richness and magic that lives at the intersection of our lives where life and death meet. When we allow our authentic self permission to shine our life becomes full of MAGIC and GREATNESS.  Contact karenttjourney@gmail.com and start working with her today!