Ten Things I Learned From Caregiving

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Not being a rainbow and pink unicorn kind of gal, I have to applaud the honesty of Ann Brenoff’s recent piece on HuffPost entitled, “No, Caregiving is Not Rewarding. It Simply Sucks.”  There isn’t a caregiver alive who can’t identify with that kind of bone-deep exhaustion, anger, and frustration.

Let’s face it, if given a choice, we’d rather the people we love remain healthy and vital forever, making this role unnecessary. But, that’s not how it happens, which brings me to the point of writing this piece.

As a family caregiver and working daughter, juggling the demands of a father with dementia and a mother with breast cancer and heart disease, there were often days I questioned my sanity, and ability to keep on. I fantasized about getting my real life back, then instantly felt guilty knowing what that would mean. I was doing too much. I wasn’t doing enough. Compassion fatigue, fractured family dynamics, and issues with paid caregivers often  stressed me to the max, and every ring of my cell phone triggered a fight or flight response.

Yeah, a lot of it did suck, but there were also moments of clarity, purpose, and deep connection that might never have happened without the accompanying angst.

This is what I know, for sure.

1. I believe in kindness, but don’t mess with me when my parent’s well-being is at stake.

2. Digesting large amounts of medical information quickly? No problem. Hospital food?           That’s another story.

3. Forgive the woo-woo, but part of my purpose for being here was to care for my folks.

4. Not really a crier, the kindness of a stranger can still disarm me, every time.

5. After six years as my parent’s healthcare advocate, there isn’t much that intimidates me.

6. At the end, our deepest conversations can have little to do with words.

7. Just being with my folks was sometimes more important than doing for them.

8. Whether giving or receiving care, we all have a deep need to be understood and                      appreciated.

9. Laughter and tears can both be ways of dealing with loss.

10. You can ultimately see caregiving as a gift, and still want to return it now and then.

Now you know mine. How about sharing a few of your own caregiving truths.

And by the way, the bird’s nest in this post is a treasured batik, created by my mom, Sally, many years ago.

14 Comments

  1. Liz O'Donnell says:

    Beautiful. Thanks for writing this. 4,5 and 6 resonated most for me. An act of kindness always seemed to set off the tears!

    • Judith Henry says:

      Thanks, Liz. A simple act of kindness from someone we don’t even know can mean so much!

  2. pia says:

    My incredible mother went almost completely blind when I was a nursing home social worker.
    A few of the people in the home, one 64—younger than me now–enjoyed living there. It was the first time anybody had paid her any attention so I did but honestly in my heart I would think that my 80 year old mother was fighting to stay in her apartment, fighting for her independence. It was hard.

    So much more….It’s very a difficult balancing act!

    • Judith Henry says:

      Pia, thanks for sharing a comment. How difficult it must have been for your mom and for you, understanding how much she wanted and needed her independence. As you point it, it’s all such a delicate balancing act.

  3. Sheila Axner says:

    The moment I saw recognition in my mom’s eyes was a gift when it happened. The last year she didn’t know me as her daughter but as the person caring for her. She would talk about me not knowing it was me sitting next to her.
    I would give anything to be sitting there today!

    • Judith Henry says:

      Sheila, I’m so sorry. That must have been incredibly hard for you, and yes, what a gift. To be given a moment where you mom truly sees who you are. Sending you love and hugs.

  4. Vivian Geary says:

    Judith, I really appreciate your insights (especially #9 & #10). And I believe that laughter and tears can both be ways to begin healing after a loss.

    • Judith Henry says:

      Thank you, Vivian. Glad those insights resonated with you. Caregiving is such a combination of bitter and sweet, isn’t it.

  5. Carole Brecht says:

    This is wonderful Judith. Really demonstrates the range of emotions a Caregiver goes through. I related to many of your points. 2 weeks after Mom died, I found out I had a health issue from stress from being her Caregiver. I fully recovered, but I didn’t take care of myself, without realizing it and that was the result. Lately I’ve been reading articles that downplay self care & I don’t understand why. It’s well documented that Caregivers are known to get sick in that job position. At any rate,your Mom’s batik is beautiful. I studied batik for a yr and loved it! Can I share your post this week on SanGenWoman Facebook page,is that ok?

    • Judith Henry says:

      Thank you, Carole. What you describe is one of the hardest things for caregivers to do – take care of themselves. (regardless of what the articles say.) As someone who has lived it, you’re a wonderful resource for others. So glad you recovered fully. Thanks for the kind words about Mom’s batik. She loved bird nests. Sure, happy to have you share the post. Take care.

  6. Donna Thomson says:

    Hi Judith, this is a very wise post – I will share, thank you! I’ve learned the same lessons as you and my personal additions would be that I can’t do alone and that care is in the doing, not the outcome (a recent lesson I wrote about here: http://www.donnathomson.com/2016/07/the-limitations-of-love.html. Warm wishes!

    • Judith Henry says:

      Thanks very much, Donna. So well said. I just read your recent post and it resonated deeply with me. One of the hardest lessons to learn is that we can’t always make things better for a parent, despite our love and efforts. Lovely to meet you.

  7. Marcia Mendel says:

    Some times my husband get aggravated with me, usually for something really silly and inconsequential. When that happens, I respond by saying ” honey, I am doing the best I can with what I ‘ve got. Once I started to forgive myself for not being perfect, I have become a better person and more importantly a much better caregiver.

    • Judith Henry says:

      Bravo, Marcia! You’ve really hit on a key issue for caregivers – this idea that we have to be perfect while dealing with flawed institutions and impossible situations. With that said, you’ve discovered the PERFECT response to your husband! Thanks so much for stopping by.

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