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Susan Fusco-Fazio's avatar

“Our heavenly moments are when there are no issues or drama, a few quiet, peaceful days without medical check-ups. “

I can’t relate to this and many other things you’ve written…but this in particular struck me -I recall us feeling this way during the pauses, when we were caring for our daughter Laura with cardiac disease.

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Victoria's avatar

Big hug, Susan. Yes, boring is beautiful when you're in a constant storm. Thankfully, these days are calmer here. Sending best wishes xo

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Danusia Malina-Derben's avatar

What a beautiful personal essay laced with awesome resources.

Last year my brother died and I was the only person able to do all things needed. It was another side of death and grief I’d not experienced. He hadn’t thought about a grey file but scribbled wishes across paper hoping I’d assemble the sequence into order. Bless!

Thank you so much for serving us all ♥️

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Victoria's avatar

Thanks, Danusia! Heartfelt condolences for the loss of your brother. I won't tell you how many books and resources I've read since 2020 and they each offer something, but the video - I found the short version first, felt true for me and fit. We'd experienced so much since 2020 with Mum's treatment, but I was right back in the grief at specific moments/events.

As always, my mission and hope is that this can reach those who need it when they need it to feel seen, connected and supported. Thanks for your support & being part of this community.

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Laurita Gorman | Therapist SEP's avatar

Thank you for this post and resources Victoria, and for including my article on grief, a piece of my journey xx

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Victoria's avatar

Welcome Laurita. Thank you for sharing part of your journey for others to read.

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Victoria's avatar

Thanks, yes, I saw them. I think it depends on how we each process / do things, how we interact with our loved ones or how we collate info for ourselves. Planners can be overwhelming or intimidating to some or excellent guides to others. It's all a personal preference. I've found carer associations or charities have more comprehensive 'prompts'. though

Dad's grey folder had a lot of hardcopy info and gave him reassurance. I have a folder for my own Will and an Excel file for Mum's medical info - it is easier to update that way.

Thanks

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Amber Groomes,Ph.D. (she/her)'s avatar

This is good to know, I will keep that in mind.

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Amber Groomes,Ph.D. (she/her)'s avatar

I’m sure you are helping so many people by sharing your experiences and resources Victoria. I haven’t had to care for an aging or ill lived one, but I’ve watched my mother do it a few times. The toll is immense, and the grief afterwards can be complex. Thank you for the work you are doing, and linking to my writing ❤️ It is very appreciated!

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Victoria's avatar

Thanks, Amber. I hope this article reaches those who need it and that I can include links to many different experiences of grief like yours. Hopefully, this also helps raise awareness of the struggles those grieving go through to normalise not being okay is ok - instead of fulfilling society's expectation of false positivity.

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Nancy Allen's avatar

It’s so reassuring to hear you say “move at their pace”. That’s what I’ve begun with my MIL and it required me to let go of my desire for a perfect plan accomplished this month. It’s allowed me to feel better about what I know while also giving us time together not focused on a task. Thank you so much for sharing your story and tips, tools, research and experience. 😊❤️

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Victoria's avatar

Ohhhh Nancy - this is EXACTLY what I hope to hear - sniff, welling up!

THANKS! Some people may think I'm writing to preach about how caring for a loved one 'should' be done (the hated swear word should),

BUT MY AIM is to offer other carers/caregivers greater peace of mind and self-permission NOT to be perfect.

Living in the moment with our loved ones, while they're here, in the ways that bring them peace and joy in snatches of time we have, is so precious. (I realise personalities and dementia or illness create so many complexities to this though!)

Thank you. for making this painful-share worthwhile.

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Mary Beth Kaplan's avatar

This is helpful. The grief is always there. I’m saving that video and will watch it when I’m ready.💛

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Victoria's avatar

I hear you, right there with you - big side hug. Yes, only when you feel ready. xo

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