20 Comments

Sharron, I totally agree. Keeping it all locked inside isn't healthy.

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I also continue to be fascinated, and in some ways amazed Janice, at the new and improved understandings we seem to come to over time. Although painful, perhaps the experiences are actually needed as part of a deeper soul healing that then takes place. Stay well.

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Marilyn, I suspect that is true - writing has allowed me to get the thoughts and painful memories out of my head and into the open where I can process - and perhaps see them in a different life.

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Me too. I wrote several pages immediately after my mother's death. I cannot even go back and allow myself to read them as they are too painful, but the writing of them helped because I had no one to listen to me.

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Hi Sharron, That makes perfect sense. I'm sorry there was no one there for you at the time. In truth, I feel as if readers on Substack listen and I wasn't expecting that. I am so very grateful.

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Very insightful, Marilyn. Caring for a dying loved one made me a permanently changed person. I hope improved, certainly more compassionate toward myself and toward others.

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"I learned that additional factors may contribute to caregiver burnout." Wow, Janice! It feels like you wrote this section specifically for me. I found it exactly so when caring for my mother. I sorely needed someone to commiserate with THEN. It would have been so helpful. I wrote a little essay for Saturday about how we feel when our work is finished- that traumatic mix of grief and relief and not knowing what to do next.

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Absolutely and me too :-)

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You are doing an angel's work. You are saving someone (perhaps many) from the agony of burning out, feeling guilty about doing so, and resources to reach out to... I wish this would have been available to me when I was caring for my mother. Thank you for sharing.

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Hi Patti, Thank you so much. I don't think there was so much of a focus on care provider burnout previously as there is now.

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You are right. Back in 2001 through 2007 I put my all in and suffered greatly later on. But. I wouldn't trade the time spent for the world.

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Janice, I'm not sure one ever heals from this experience and certainly never forgets. But your sharing openly about your situation will surely help others along their journey. Thank you for having the courage to do that.

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Hi Heather, Thanks so much for your thoughtful words. That is my hope that others will be better prepared than I was.

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Such important information that you're sharing Janice. All these years later (and in no way comparing my own situation to yours) I've come to a place of replacing the word "caretaker" with "caregiver" for it seems to me that's what we were (and can still fall into if I'm not being mindful). The idea of self-care is still somewhat foreign to me but I will continue to practice implementing small pieces into my world as best I can. My Dr. was an enormous support in showing me how to be an "advocate" for my Donald which of course resulted in a wee bit of self-care in spite of myself.

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Hi Marilyn, I really liked the term care partner and in the beginning it fit - but the more the disease progressed the more it didn't fit any longer and I was kidding myself. Today if I had to pick one I, would prefer care provider over caretaker. Thanks for helping me clarify it in my mind. You had a wise doctor.

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Janice, this is heartbreaking but so important. I’m sorry you had to go through it in order to talk this honestly about the grueling, often thankless job of caretaker.

Big hugs. 💕

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Hi Ramona, Thank you so much. To talk about it seems like part of the healing process - for me. And if I my experience can help anyone better manage the trauma - that would be good.

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Talking about these things is surprisingly healing for me, too. That was kind of a revelation. And people can and do relate. We're not alone. That helps, too, though I wouldn't wish any of this on anyone else.

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I totally agree

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Yes. Talking about it. So important. And if there is no one who wants to listen to you, write it down. It has to come out.

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