Caregiver Reciprocity: How Can We Work Together to Craft Better Lives?

May 20, 2020

I’ve talked about and written about the concept of caregiver fatigue over the years. It’s a thing.
I know that I’ve hit that point more than once. I’ve talked about how hard this special-needs parenting journey is, and how I have no idea how people do it without help. And many people do it without help because the special-needs divorce rate is significant.

While I was writing this blog, I crowd sourced my special-needs parent peers on Facebook as to what the statement caregiver fatigue means to them, because it’s so much more than being the only income and trying to make ends meet, or worrying about if your kid is out late. These are some of the responses:

“Neverending. Groundhog Day, the movie. No respite, no break, no end of the tunnel. Random glimpses of joy mixed with the monotony of the everyday.”

“Bone tired, neverending responsibility with no end in sight. No respite.”

“The realization that I will always be thinking, doing, and creating a safe space for [kid’s name].

“I’m in charge. If I say ‘Meh, I’m done,’ there’s no one else to do it.”

“Same shit every day. Dreading things like feeding and diaper changes, knowing every meal will likely include a meltdown that traumatizes everyone.”

“I’ve had a toddler for eight years and counting.”

“Resentment towards my child / partner.”

Having felt all of those over the last few years at one time or another, I’m so very grateful to share that this year my village has solidified beautifully and we really do have help now. I can (and, in fact, did this weekend) just drop Dominic off and know that he’s taken care of and loved on and safe, and that who he is with would step in front of a car for him. And while I’ve had people tell me that they will do it, and we’ve certainly had people step up during emergencies, this is the first time I’ve just dropped Dominic off so I can shop without him (I don’t like taking him into stores during the pandemic drama, because he cannot manage masking or keeping hands to himself).

Last fall a course that Mallory McClelland, an autism mom and intuitive friend of mine, offered called “Caregiver to Caregetter” came across my feed and I signed up for the 12-month commitment. The class concept was about caregiver fatigue and special needs-moms learning how to step out of the hyperfocus we have. Because we are really tired. The course included group work, a Facebook group, and monthly private sessions with Mallory. Almost from the get-go, things became remarkably chaotic in my private life, and I didn’t manage to attend a single one of the group sessions. I went ahead and pulled out of the program a few months ago, leaving the last couple of private sessions in the “bank” so to speak for when I needed them. I used them last week for a pretty profound session.

As part of that session, the concept of caregiver reciprocity came out of my mouth – I’ve never heard the statement and it resonates so beautifully. I literally said “I don’t want someone to take care of me during the hard things of life; I want someone to take care of the hard things of life with me.”

Mallory stopped me because it was such a profound statement.

Special-needs parenting is hard. Special-needs parenting in the middle of the end of the world is ridiculous. Special-needs parenting during the end of the world when the government says you cannot have your village to help you is impossible. We don’t need—or want—to be rescued and set aside and fed bonbons. We need to be with people who see when we are exhausted and step in to help, shoulder to shoulder.

Discussion questions (I’d love to host a discussion on this in comments here or on Facebook):

What do you think of the idea of Caregiver Reciprocity?

Do you have anyone in your life who will shift into caregiving with you?

What would that kind of relationship look like?

What does your village look like right now?

What do you want your village to look like going forward?


~ JuicyFruit

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2 Responses to Caregiver Reciprocity: How Can We Work Together to Craft Better Lives?

  1. Rebecca Lee says:

    I took care of my brother with dementia for many years. Only I was able to say, “I am burned out “ and stop. I know you guys can’t do that.
    Just like to say I know what you are talking about. I am very sorry this has happened to you.
    Please consider the Andy Cutler protocol.

  2. Stacy says:

    My husband and I are completely alone, caring for our 18 year old son. We sleep on separate floors of the house, in shifts, so we can monitor the exits and our other children, for safety. Our lives seem filled with near constant trauma and exhaustion. All we hear is that he needs to go live in a group home. However, I work full time in administration for adult residential services. I do not feel a group home, as the options are now, would be any safer. In fact, I feel they would be less so. Certainly, trauma would not be lessened but likely increased, as his risk of being abused is so high. These are our choices? It’s deeply painful. The idea of this “village” everyone talks about is foreign to us. I would love to be any part of creating one. Thank you for your article.

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