The story of Jules is the quiet nightmare of the Saved Underclass. As a care-giving spouse to my husband’s Aphasia and the 'Relentless Tide' of stroke recovery, I recognized Jules immediately. She didn't just have a heart attack; she was crushed by the 'Steel Beast' of a broken system that expects spouses and family to be infinite resources.
We are told our care is 'holy work,' but holiness doesn't pay for Tempus workers who never show up, and it doesn't fix a spine deteriorating from 24/7 lifting. I’ve started writing about Melanchosophy—the philosophy of surviving when the 'person we were' cannot be saved.
We have to stop being 'The Strong Ones' and start being the 'Sustained Ones.' I’m building a base for caregivers who are done with platitudes and ready for strategy. We all need to connect with each other to build our base so large that we cannot not be seen. Thank you for naming the cost.
Allie, thank you so much for sharing some of your story. I love your pivot to the "Sustained ones" who are strategizing and mobilizing. And "crushed by the steel beast of a broken system" sounds exactly right. And the sad part is, I featured Jules' story, but I have dozens more stories just like that one. I look forward to reading your work - especially about Melanchosophy and the base you are building.
Betsy thanks for reading and commenting! I'm glad to know that the medical students are benefiting from your wisdom and these topics are a part of their education. I've been doing some work with our medical school about teaching spirituality as a part of healthcare and it's been lovely learning from the students.
Dear Christine. This brought me back to my own caregiving season with my precious Mom. It was a time of emotional exhaustion and endless anxiety that almost did me in. To watch her suffer, to see the medical professionals unable to relieve her pain was more than I could take. I was so grateful when the Lord finally took her Home.
Her feeble, 'don't get old, Linda,' is something I live with til this day.
Thank you for your ministry here and there. I'll be sharing this all over the place.
Linda, thanks for sharing about your caregiving with your mother. That helplessness in the face of a loved one's suffering is soul-wrenching. So many of my patients' families are surprised by the relief they feel in death, on top of so much grief. If we talk/write about it more, we can normalize that experience for others who have yet to go through it.
Reflecting on my Mom's 8+ years journey of decline, all of this hit me. I felt all of these emotions. Mom suffered 2 recurrences of cancer in these days, was hospitalized numerous times, was intubated at least twice, we brought the family to say Goodbye at least twice, got a feeding tube, got a trach, and had round the clock nurses. And people would stop me or my brother or my wife or his wife all the time and tell us, "Your Mom is amazing. She sure has an incredible will to live."
Yes, that was true. She did possess an incredible will to live. And some of that is noble and wonderful and worthy of praise. And her will to live inflicted enormous hardship -- especially on Mom's sister, my brother and me, but also on other family members and even friends. In all those years of decline, as they praised Mom's "will to live," very very few ever stopped one of us to ask us how we were coping, if we needed support, or anything like that. Not zero, but very few.
I never once wished Mom would die. I'm not glad she's gone now. But I am relieved -- for her and for us.
Russell, thank you for sharing your caregiving story here. I'm struck by the constant hypervigilance that you endured, especially with the multiple goodbyes. Holding her memory while honoring your hard work for many years.
I hear you, Russell. I get it. I had a similar version of that with my Dad. Most phrases were around 'soldiered on' 'he's a fighter'. They never saw him crying with exhaustion and pain. He was a proud man who put huge effort into looking well for visitors. I was relieved for him when he passed, and for us. Sometimes, the natural attrition of contacts to the few who really care, with great empathy, is a blessing. My condolences for your loss.
Oops got sent too soon! This is so compassionate for "carers". I believe that every single one of us has been a caregiver at some time in our lives. And it is not a luxury to care for ourselves! It is a necessity! That is quite a sobering story. I gasped when I read "heart attack"!
I’ve worked with so many caregivers in the sandwich generation and this would definitely resonate with them. The guilt they feel for being angry and current life just exacerbates their negative feelings. Acceptance here is so important. I will be keeping this to share!
My husband has had to become a carer for me, following the removal of a brain tumour. I can see the demand this is placing on him, but I can't help- I'm physically unable to care for myself, I'm not 'mobilised' as they call it at hospital. If I fall onto the floor, I need an ambulance crew to assist me in getting me off the floor, because I haven't got sufficient strength in my arms and legs to push myself to a standing position.
My husband has gone - virtually overnight - from someone with satisfying work and a spouse who was able to share the work of running a household, to feeling completely responsible for my wellbeing. It's an impossible burden for him to take on without support, and there is little support. He desperately needs to care for himself to survive the pressure - yet that becomes another burden, or pressure.
Thank you for your kind answers, Victoria and Christine. I had no idea you could lose the ability to walk so quickly! I'll have a good look at the resources you suggest.
Pam, thank you for sharing your experience here of what it is to be forced to receive care. Blessings on both of you as you navigate this new normal that you didn't ask for. What a tremendous amount of grief for you and your husband. I'm holding you in prayer. I'm glad that Victoria chimed in with some resources and opportunity for connection - she is an absolute gem.
Hi Pam, I'm sending over some hugs (if you're ok with getting hugs). You and your husband have been through so much! I'm assuming you're in the UK too, so I get everything you've shared. I hear you. I feel for you both.
I'm hoping you're both connected to maggies https://www.maggies.org/ they have amazing centre of support, information and counselling.
You're absolutely right, someone telling me to 'look after myself' wasn't helpful ....my only advice is keep talking, aligning, figuring it out together—like I'm sure you're already doing!
Happy to offer suggestions or thoughts if it helps here/DM. It's obvious you don't need a boatload of unsolicited advice right now.
Kimberly, thank you for this blessing that dovetails so well with Christine's article, raising awareness of the emotional burden and challenges of caregiving
Dear friend, thank you for eloquently expressing the hidden toll of caregiving, and this especially:
"Long-term family caregiving is uniquely difficult because it is largely unsupported by the very systems it sustains. We continue to treat caregiving as a private family matter rather than the population-level health crisis it clearly is. The physical, logistical and financial strain can be staggering."
Few realise that hands-on care is a small fraction of what carers do. My heartfelt condolences for the loss of Jules. I can pinpoint moments I was Jules, deflecting because if you pulled that thread, everything would come undone.
I'm honoured that you've generously called out my work and the community support network of many carers writing to support other caregivers by sharing their insights and ideas. Empathy is flowing. It's both heartbreaking and warming to learn from the diverse experiences that are being shared so vulnerably.
Lastly, thank you for recognising that we are more than our caregiving role! While it's my priority, I also have a small business alongside building Carer Mentor - i.e., a very curious brain! I appreciate your compassion, the humanity woven into your words and your concern for carers. Thank you, Christine.
I'm so grateful for the community you have built here in addition to everything else you have going on in your life! I think that's an excellent point about the physical aspects. When I was a mom to young kids, so much of it was physical, but that was a limited and welcome season. It seems like the mental, emotional and financial toll is much more significant when caring for loved ones with chronic conditions.
Thanks, Christine - exactly! There are studies on caregiver PTSD and long term effects of chronic hypervigilance. There is an increasing realisation of the financial toll personally, and how many don't have money for their own futures.
This also ties to macroeconomic impacts. When traditional work practices are not flexible enough to meet carer needs, people leave work—a smaller workforce, lower productivity, and the loss of legacy knowledge from seasoned managers and leaders trained in the business —mean slower business / economic growth. This is one of the vicious cycles I see recurring in the UK
The story of Jules is the quiet nightmare of the Saved Underclass. As a care-giving spouse to my husband’s Aphasia and the 'Relentless Tide' of stroke recovery, I recognized Jules immediately. She didn't just have a heart attack; she was crushed by the 'Steel Beast' of a broken system that expects spouses and family to be infinite resources.
We are told our care is 'holy work,' but holiness doesn't pay for Tempus workers who never show up, and it doesn't fix a spine deteriorating from 24/7 lifting. I’ve started writing about Melanchosophy—the philosophy of surviving when the 'person we were' cannot be saved.
We have to stop being 'The Strong Ones' and start being the 'Sustained Ones.' I’m building a base for caregivers who are done with platitudes and ready for strategy. We all need to connect with each other to build our base so large that we cannot not be seen. Thank you for naming the cost.
Allie, thank you so much for sharing some of your story. I love your pivot to the "Sustained ones" who are strategizing and mobilizing. And "crushed by the steel beast of a broken system" sounds exactly right. And the sad part is, I featured Jules' story, but I have dozens more stories just like that one. I look forward to reading your work - especially about Melanchosophy and the base you are building.
This is absolutely crucial and so resonant and countless levels, Christine. Thank you, thank you, thank you.
Thanks Arianne, caregiving can feel so invisible and lonely, so I'm glad that others feel seen by this post!
Thank you for this article. I teach medical students about autism and we talk a lot about caring for the caregiver.
Betsy thanks for reading and commenting! I'm glad to know that the medical students are benefiting from your wisdom and these topics are a part of their education. I've been doing some work with our medical school about teaching spirituality as a part of healthcare and it's been lovely learning from the students.
Interesting!
Dear Christine. This brought me back to my own caregiving season with my precious Mom. It was a time of emotional exhaustion and endless anxiety that almost did me in. To watch her suffer, to see the medical professionals unable to relieve her pain was more than I could take. I was so grateful when the Lord finally took her Home.
Her feeble, 'don't get old, Linda,' is something I live with til this day.
Thank you for your ministry here and there. I'll be sharing this all over the place.
Linda, thanks for sharing about your caregiving with your mother. That helplessness in the face of a loved one's suffering is soul-wrenching. So many of my patients' families are surprised by the relief they feel in death, on top of so much grief. If we talk/write about it more, we can normalize that experience for others who have yet to go through it.
Reflecting on my Mom's 8+ years journey of decline, all of this hit me. I felt all of these emotions. Mom suffered 2 recurrences of cancer in these days, was hospitalized numerous times, was intubated at least twice, we brought the family to say Goodbye at least twice, got a feeding tube, got a trach, and had round the clock nurses. And people would stop me or my brother or my wife or his wife all the time and tell us, "Your Mom is amazing. She sure has an incredible will to live."
Yes, that was true. She did possess an incredible will to live. And some of that is noble and wonderful and worthy of praise. And her will to live inflicted enormous hardship -- especially on Mom's sister, my brother and me, but also on other family members and even friends. In all those years of decline, as they praised Mom's "will to live," very very few ever stopped one of us to ask us how we were coping, if we needed support, or anything like that. Not zero, but very few.
I never once wished Mom would die. I'm not glad she's gone now. But I am relieved -- for her and for us.
Thank you, Christine and Kimberly.
Russell, thank you for sharing your caregiving story here. I'm struck by the constant hypervigilance that you endured, especially with the multiple goodbyes. Holding her memory while honoring your hard work for many years.
Thank you, Christine. ❤️
I hear you, Russell. I get it. I had a similar version of that with my Dad. Most phrases were around 'soldiered on' 'he's a fighter'. They never saw him crying with exhaustion and pain. He was a proud man who put huge effort into looking well for visitors. I was relieved for him when he passed, and for us. Sometimes, the natural attrition of contacts to the few who really care, with great empathy, is a blessing. My condolences for your loss.
I wish more people could give voice to this and I'm so glad you all are doing that!
Thank you, Victoria. All well said. I appreciate it.
I just read this and thought of your comment, Russell.
Christine - FYI
https://substack.com/@lifeaftertheshitshow/note/p-188825040?utm_source=notes-share-action&r=a9y7d
Oh that is such a powerful essay, thanks for sharing! These lines are resonating:
"The thoughts you are afraid to admit do not mean you love them less.
They usually mean you have been loving them for a very long time under very hard circumstances.
And that kind of love changes you."
Oh Christine, this is so compassionate and sensitive to carers"
Oops got sent too soon! This is so compassionate for "carers". I believe that every single one of us has been a caregiver at some time in our lives. And it is not a luxury to care for ourselves! It is a necessity! That is quite a sobering story. I gasped when I read "heart attack"!
Thanks Karla. I wish Jules' story was an isolated incident, but sadly, there are so many others I could tell (as could you too!)
I’ve worked with so many caregivers in the sandwich generation and this would definitely resonate with them. The guilt they feel for being angry and current life just exacerbates their negative feelings. Acceptance here is so important. I will be keeping this to share!
Thanks Lindsey. That guilt about the feelings can be so isolating and hard to endure! I know you've helped so many work toward that acceptance!
My husband has had to become a carer for me, following the removal of a brain tumour. I can see the demand this is placing on him, but I can't help- I'm physically unable to care for myself, I'm not 'mobilised' as they call it at hospital. If I fall onto the floor, I need an ambulance crew to assist me in getting me off the floor, because I haven't got sufficient strength in my arms and legs to push myself to a standing position.
My husband has gone - virtually overnight - from someone with satisfying work and a spouse who was able to share the work of running a household, to feeling completely responsible for my wellbeing. It's an impossible burden for him to take on without support, and there is little support. He desperately needs to care for himself to survive the pressure - yet that becomes another burden, or pressure.
Thank you for your kind answers, Victoria and Christine. I had no idea you could lose the ability to walk so quickly! I'll have a good look at the resources you suggest.
Pam, thank you for sharing your experience here of what it is to be forced to receive care. Blessings on both of you as you navigate this new normal that you didn't ask for. What a tremendous amount of grief for you and your husband. I'm holding you in prayer. I'm glad that Victoria chimed in with some resources and opportunity for connection - she is an absolute gem.
Hi Pam, I'm sending over some hugs (if you're ok with getting hugs). You and your husband have been through so much! I'm assuming you're in the UK too, so I get everything you've shared. I hear you. I feel for you both.
I'm hoping you're both connected to maggies https://www.maggies.org/ they have amazing centre of support, information and counselling.
Carers UK has a good helpline and forum if your husband wants to connect live/online to anyone https://www.carersuk.org/help-and-advice/
You're absolutely right, someone telling me to 'look after myself' wasn't helpful ....my only advice is keep talking, aligning, figuring it out together—like I'm sure you're already doing!
Happy to offer suggestions or thoughts if it helps here/DM. It's obvious you don't need a boatload of unsolicited advice right now.
Kimberly, thank you for this blessing that dovetails so well with Christine's article, raising awareness of the emotional burden and challenges of caregiving
Dear friend, thank you for eloquently expressing the hidden toll of caregiving, and this especially:
"Long-term family caregiving is uniquely difficult because it is largely unsupported by the very systems it sustains. We continue to treat caregiving as a private family matter rather than the population-level health crisis it clearly is. The physical, logistical and financial strain can be staggering."
Few realise that hands-on care is a small fraction of what carers do. My heartfelt condolences for the loss of Jules. I can pinpoint moments I was Jules, deflecting because if you pulled that thread, everything would come undone.
I'm honoured that you've generously called out my work and the community support network of many carers writing to support other caregivers by sharing their insights and ideas. Empathy is flowing. It's both heartbreaking and warming to learn from the diverse experiences that are being shared so vulnerably.
Lastly, thank you for recognising that we are more than our caregiving role! While it's my priority, I also have a small business alongside building Carer Mentor - i.e., a very curious brain! I appreciate your compassion, the humanity woven into your words and your concern for carers. Thank you, Christine.
I'm so grateful for the community you have built here in addition to everything else you have going on in your life! I think that's an excellent point about the physical aspects. When I was a mom to young kids, so much of it was physical, but that was a limited and welcome season. It seems like the mental, emotional and financial toll is much more significant when caring for loved ones with chronic conditions.
Thanks, Christine - exactly! There are studies on caregiver PTSD and long term effects of chronic hypervigilance. There is an increasing realisation of the financial toll personally, and how many don't have money for their own futures.
This also ties to macroeconomic impacts. When traditional work practices are not flexible enough to meet carer needs, people leave work—a smaller workforce, lower productivity, and the loss of legacy knowledge from seasoned managers and leaders trained in the business —mean slower business / economic growth. This is one of the vicious cycles I see recurring in the UK