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Leslie Senevey's avatar

A lovely illustration of how life can be both heartbreaking and heart opening all at once. Thanks for sharing.

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Natalie Silverstein's avatar

This is so beautiful, Pam and it resonates so deeply for me personally. Thank you for sharing it, and for being so honest and vulnerable. I know it's not easy. Your writing is a gift to others who are walking this path, as well.

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Ella Ben Emanuel's avatar

Incredibly moving. I hope that through your prose, you find yourself again.

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Philip Ruge-Jones's avatar

Whew! "Mike is still physically present, but he doesn’t share my life anymore."

And this: "The person who chooses to come back again, every time she walks away."

The reflection you have written that moved me most so far. And given what you have offered in the past, this is no small thing.

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Jill Kelly's avatar

Pam, I left this comment on another stack just now, but it relates closely to what you are saying.

We become widows/widowers long before the end. I believe The rest and rebuild stage has to start before the end. Rest, so we can stay healthy enough to keep caregiving. Rebuild, because our former identity and sense of self unravels along the way. Dreams are deferred and extinguished. I can’t wait until my spouse dies (or even assume I will outlive her) to start rebuilding. To keep as much of myself in the land of the living. Doing that as we continue the grinding process of caregiving under the shadow of ambiguous loss is very hard. But my own existence as a unique human being is at stake.

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Pam Johnston's avatar

Oh Jill, I completely agree. It's so hard. But I've started taking some small steps--changing things around the house to suit my own tastes and needs, for instance--as a way to acknowledge that this is my life now. Not ours. Not the way it was, but the way it is. If I don't do that, I'm going to get lost in the shuffle. This much is very clear to me.

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Searching for the Words's avatar

I was reflecting this morning - while fighting the feeling of weepiness - on my marriage vows and how it is the fact of having made them almost 40 years ago that tells me I’m in this for the long haul, no matter how hard things get. (And they were hard last night, hence the emotional morning.) As I read this honest piece it occurred to me that “I am a person who keeps my commitments - that’s who I am.” (Clearly, you are too.) That single thought helped to shift my mood. Thank you for helping to turn things around.

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Pam Johnston's avatar

Big hugs to you. Some days are really hard, no matter committed we are to getting through them. 🫂

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Erica Lucast Stonestreet's avatar

This is beautiful and real. I don't face anything like this at the moment, but as my parents age, and when I think about what life will look like when I'm their age, I think about it. Thanks for the honesty.

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Catherine H Palmer's avatar

A gut-punch of an essay. This line hit me especially hard: "there’s more to me than being a co-person." Caregiving in later life is a burden, period. Yes, some say it is a sacred act, a kindness, a generosity of spirit, a vow kept. Maybe so, for some. It's not a responsibility that anyone should have to bear without abundant, available, affordable support and respite. Our selves should never pay the price of being lost. I wish you continued resilience!

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Pam Johnston's avatar

Can I just say how heartening it is to hear someone speak the truth about the onerous work of caregiving? Thank you! People behave as though we're only allowed to say it's a gift. Well, no. It's not. And that fact doesn't mean I love my husband any less.

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Catherine H Palmer's avatar

Two things can be true. Sending hugs.

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Victoria's avatar

Aww, Pam, there's so much here that resonates with me. At the same time, my daughter-cargiver experience is very different.

Still, I had flashbacks to how my Dad had his confused look, then angry, then frustrated then sad and guilty. I appreciate how you've captured the compassion, frustration, and empathy we can feel for our loved ones with dementia.

Thank you for sharing the 'hardest adjustment' and THIS brought a big lump to my throat, 'Because who am I, if not Mike’s very nice wife? Not half of MikeandPam, all one word, the nucleus of our delightful little family? Not his power of attorney, not the co-owner of all our assets?'

Hugs.

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