Caregiver PTSD is real. I still feel the same clench in my chest whenever my phone rings early in the morning or late at night. The only time that used to happen was when something was going wrong with my mom. Now I'm riding the grief waves of losing my best friend in January. I carry the absence of her and my mom with me, but I still manage to carry greater joy.
I love the concept of love persevering. I’ve also heard it described as love with nowhere to go, but I try to think of it as love that goes everywhere with us, always.
Me too, my Dad was...tenacious to say the least, so I definitely know his love is persevering! I've heard that phrase too but when I hear 'nowhere to go' it feels odd because when grief is so big it definitely knows where to go - those memories or to our loved one... perhaps because I have little remembrances / goto music to help move with the grief now...
For me, I carry this love, grief, and feel it heavier some days and lighter on others... or 'BAM' knocks me unexpectedly..in a supermarket! It's moulded into part of who I am now - so I very much agree with you, Leslie. xo
Victoria, I love your phrase 'Human-ing hard.' It’s exactly what I'm navigating as the tide of active caregiving recedes. I'm finding so much radical gratitude in the capacity to just feel the weight of things again—a concept I've been calling Melanchosophy. It’s that 'wisdom of sadness' that proves we are finally whole enough to hurt. Truly appreciate the space you've built for us to process this.
“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.
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!
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.
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.
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!
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.
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. 😊❤️
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.
Caregiver PTSD is real. I still feel the same clench in my chest whenever my phone rings early in the morning or late at night. The only time that used to happen was when something was going wrong with my mom. Now I'm riding the grief waves of losing my best friend in January. I carry the absence of her and my mom with me, but I still manage to carry greater joy.
I love the concept of love persevering. I’ve also heard it described as love with nowhere to go, but I try to think of it as love that goes everywhere with us, always.
Me too, my Dad was...tenacious to say the least, so I definitely know his love is persevering! I've heard that phrase too but when I hear 'nowhere to go' it feels odd because when grief is so big it definitely knows where to go - those memories or to our loved one... perhaps because I have little remembrances / goto music to help move with the grief now...
For me, I carry this love, grief, and feel it heavier some days and lighter on others... or 'BAM' knocks me unexpectedly..in a supermarket! It's moulded into part of who I am now - so I very much agree with you, Leslie. xo
Thank you for reading and sharing your thoughts, Leslie. I feel for you.
I still have 0 to 1000 in a few seconds when there's a thump akin to a fall, or when we go to the hospital (often)
This may seem cliché to some, but I wanted to share a phrase that helped me reframe some of my grief, with you . I wrote about it here back in 2024 https://www.carermentor.com/p/the-wandavision-of-grief
"what is grief, if not love persevering."
I have great love for my father, but it's complicated by the painful caregiving and events, and I remember piercing bittersweet joy.
Hugs xo
Victoria, I love your phrase 'Human-ing hard.' It’s exactly what I'm navigating as the tide of active caregiving recedes. I'm finding so much radical gratitude in the capacity to just feel the weight of things again—a concept I've been calling Melanchosophy. It’s that 'wisdom of sadness' that proves we are finally whole enough to hurt. Truly appreciate the space you've built for us to process this.
Thanks, Allie. That’s a great word and concept, ‘whole enough to hurt’ resonates.
“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.
Big hug, Susan. Yes, boring is beautiful when you're in a constant storm. Thankfully, these days are calmer here. Sending best wishes xo
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 ♥️
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.
Thank you for this post and resources Victoria, and for including my article on grief, a piece of my journey xx
Welcome Laurita. Thank you for sharing part of your journey for others to read.
Oh I also wanted to mention, are you aware that there are death planners that can be purchased? Something like this:https://www.amazon.com/s/?ie=UTF8&keywords=i+m+dead+now+what+planner&index=aps&tag=hydsma-20&ref=pd_sl_7xnh3k86sb_e&adgrpid=56958434293&hvpone=&hvptwo=&hvadid=617133980843&hvpos=&hvnetw=g&hvrand=15137939113528950954&hvqmt=e&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9009159&hvtargid=kwd-412463578521&hydadcr=15148_13597721
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
This is good to know, I will keep that in mind.
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!
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.
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. 😊❤️
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.
This is helpful. The grief is always there. I’m saving that video and will watch it when I’m ready.💛
I hear you, right there with you - big side hug. Yes, only when you feel ready. xo