Thanks for writing this Victoria. My own brief experience reflected in what you said about the expectation that care for my elderly parents would be available when not in a hospital bed. Suddenly I was expected to know how to nurse my terminally ill father, and to have the practical capacity to do that, that maybe I had been hanging around in my own life with loads of free time, I was looking to fill rather than working full time and raising a family. Perhaps I was naive to think that there was wraparound care (perhaps is superfluous in that sentence).
Hi Johanna, thanks for sharing. I'm sorry the 'system' failed you. I don't think you're naive! It's a lack of awareness that we all share until a health crisis happens.
There's an unspoken assumption that the NHS does everything, with little focus on social care and how it operates — or rather, doesn't operate (vacancies, high turnover, and the scarcity of quality relational care, as well as a complex funding system). It's a complex black box.
It's a human right to have a choice whether to take on caregiving or not. But systemic failures remove that choice, and assume 'someone' will be the carer.
If you've some spare energy, explore the 'Virtual ward' system. I may refuse to do it next time, and I can already anticipate the 'guilting' I'll get.
Your experience touches a raw nerve and a vast amount of empathy from me because it's precisely the time when care support is needed for everyone in the family! But I've heard the same thing countless times. HUGS!
I need to say I know several people who are in social care roles / paid caregivers and they struggle with workloads and what they're 'allowed' to do. There are good people out there.
So many points here that resonate with me Victoria, particularly the issue of us being left to project manage it all as well as care, and the whole issue of the onus being placed on us to look after ourselves, often seemingly impossible (as Anna brilliantly articulated in her post). I'm amassing a few posts on this topic myself, and will write about it in time.
I do feel that relying on our communities, whilst ideal, is unlikely to happen unless we start to talk about this more in forums like this but also mainstream media - exposing the burdens on carers, and explaining what carers actually are. Misconceptions abound around that word too - so many of us aren't providing personal care. We need to be asking the state to provide support that isn't just financial e.g social workers that offer useful joined up advice, and referring us to the various agencies who need to know we are carers. Wouldn't it be amazing if HMRC and DWP were told of our status, so that we can easily access our cared for records (who often cant inform them themselves?) Too many things to suggest here, but its great to discuss this!!
PS I knew re Mary Bourke's podcast but didn't realise it was coming off Sounds so soon!
Yes no matter whether the government is making noises in the right direction we have to keep raising awareness through writing here and calling for action. I love the synergetic thinking coming from Anna and you, affirming and inspiring my own thoughts. I used to work in policy and advocacy for the humanitarian sector so this is very much my way of thinking!
Thanks for taking the time to comment, Siobhan. I hear you. I lost count of how many drafts, edits and points I reworked. I totally agree, our communities - IF we have good connections - are no substitute for 'the welfare state'. Social care reform is overdue. In my view, I don't see any government motivation to change the current 'way of working' or to implement innovations that provide meaningful improvements, despite several recommendations already being proposed by various committees.
I see the government's focus on reducing NHS waiting lists, pushing care 'into the community', and the use of digital as soundbite actions - all of which will place a greater burden on all carers to be the 'glue', communicating to join up fragmented systems and quality-check information. I my opinion, there is a lack of public awareness about the differences between social care and the NHS system. Especially, the current state of funding and availability of social care services.....
My hope lies in raising awareness and promoting local action and support.
I look forward to reading your articles. Like Anna and I said, it already feels good, to feel the solidarity! Thank you!
I'll try to tidy up my transcriptions of the podcasts to share later
Thanks, Sammie! It was tough to write and I'm sure it's tough to read all in one go. It was somewhat cathartic releasing these insights into the open. I read so many caregiver stories over the last week...Thanks for your comment. Best wishes
Two great takeaways from your post. "Trying to set boundaries around our energy and time can feel like an impossible task with a never-ending caregiving list, and well-meaning people care-splaining what we need to do." "Caregivers need care, too. Caregiving is what they do, but not who they are."
Many kind and loving people tried to tell me what to do when I was caring for my husband, but I knew him best, and some of their well-meaning suggestions just would not work.
As a psychologist, I thought I had the tools to manage the changes in our lives as more caregiving became necessary. But I was wrong. I needed respite care, family involvement, and outside services to support me through the day-to-day wear and tear, and I was better prepared than most. Many people have no prior training or experience when taking on the role.
I'm glad this resonated with you and your experience, Janice. Thanks for sharing.
Exactly, friends/loved ones don't like to see us in pain, but caresplaining is anti-helpful! In a small wave of 'splaining I resented wasting my energy on why something wouldn't work. I learnt to close and pivot off the advice only much later.
I hear you, finding and integrating support is not easy for anyone, I'm glad you were able to get empathetic, daily support.
Thank you, Victoria, for continuing to shed light on the lived experience for caregivers. The term "caresplaining" says it all - others may think that prescribing 'self care' is helpful, when it can actually be harmful. I'm glad that my recent thoughts on self care resonated, thank you for sharing them.
Thanks Anna. It's SO good to feel the solidarity and to spark each other's thoughts!
Yep, I used to get mansplained at work - in that environment, I was almost gleeful to be underestimated. Being Caresplained is a very different animal to tame inside my head, depending on who said it. I think my default response now is a deadpan, 'ok, thank you' - when inside voice is saying something very different. ;-)
Thank you, Geraldine I appreciate you taking the time to comment. It's an intense read and I tried hard not to over-soapbox but rather, explain my thoughts....so it was hard to press the button to publish this today.
Yes, Caresplaining is just uggghhh. I try to highlight it as much as poss because it stokes new caregiver's guilt, AND repeat offenders will continue caresplaining under an assumption that they're maybe comforting or 'helping' us...when actually it's not.
It's a perfect example of how carers can end up gaslighting their own experiences, second-guessing themselves— 'look at how much others care about me, they're giving me advice. They mean well.' UGGGHH' You can see how it devolves into a downward spiral for some - between siblings, or if there's limited social connections. (me thinks I need to write another article and add in some Rebecca Solnit quotes)!
There's a market out there for greeting cards for carers, with passive-aggressive / useless "positive advice":
"Get out and do something for YOU - even just for one hour a day!"
"Get a part-time job!"
"Join a Carers' Club and meet other Carers!"
"Ask people in your community if there are activities for your [elderly parent / disabled child / sibling - tick box as appropriate] and sign them up!"
Thanks for writing this Victoria. My own brief experience reflected in what you said about the expectation that care for my elderly parents would be available when not in a hospital bed. Suddenly I was expected to know how to nurse my terminally ill father, and to have the practical capacity to do that, that maybe I had been hanging around in my own life with loads of free time, I was looking to fill rather than working full time and raising a family. Perhaps I was naive to think that there was wraparound care (perhaps is superfluous in that sentence).
Hi Johanna, thanks for sharing. I'm sorry the 'system' failed you. I don't think you're naive! It's a lack of awareness that we all share until a health crisis happens.
There's an unspoken assumption that the NHS does everything, with little focus on social care and how it operates — or rather, doesn't operate (vacancies, high turnover, and the scarcity of quality relational care, as well as a complex funding system). It's a complex black box.
It's a human right to have a choice whether to take on caregiving or not. But systemic failures remove that choice, and assume 'someone' will be the carer.
If you've some spare energy, explore the 'Virtual ward' system. I may refuse to do it next time, and I can already anticipate the 'guilting' I'll get.
Your experience touches a raw nerve and a vast amount of empathy from me because it's precisely the time when care support is needed for everyone in the family! But I've heard the same thing countless times. HUGS!
I need to say I know several people who are in social care roles / paid caregivers and they struggle with workloads and what they're 'allowed' to do. There are good people out there.
I know it's a system not personal failure and am full of gratitude and awe for the people who work in the care system!
Thanks for the hugs!
So many points here that resonate with me Victoria, particularly the issue of us being left to project manage it all as well as care, and the whole issue of the onus being placed on us to look after ourselves, often seemingly impossible (as Anna brilliantly articulated in her post). I'm amassing a few posts on this topic myself, and will write about it in time.
I do feel that relying on our communities, whilst ideal, is unlikely to happen unless we start to talk about this more in forums like this but also mainstream media - exposing the burdens on carers, and explaining what carers actually are. Misconceptions abound around that word too - so many of us aren't providing personal care. We need to be asking the state to provide support that isn't just financial e.g social workers that offer useful joined up advice, and referring us to the various agencies who need to know we are carers. Wouldn't it be amazing if HMRC and DWP were told of our status, so that we can easily access our cared for records (who often cant inform them themselves?) Too many things to suggest here, but its great to discuss this!!
PS I knew re Mary Bourke's podcast but didn't realise it was coming off Sounds so soon!
Yes no matter whether the government is making noises in the right direction we have to keep raising awareness through writing here and calling for action. I love the synergetic thinking coming from Anna and you, affirming and inspiring my own thoughts. I used to work in policy and advocacy for the humanitarian sector so this is very much my way of thinking!
Thanks for taking the time to comment, Siobhan. I hear you. I lost count of how many drafts, edits and points I reworked. I totally agree, our communities - IF we have good connections - are no substitute for 'the welfare state'. Social care reform is overdue. In my view, I don't see any government motivation to change the current 'way of working' or to implement innovations that provide meaningful improvements, despite several recommendations already being proposed by various committees.
I see the government's focus on reducing NHS waiting lists, pushing care 'into the community', and the use of digital as soundbite actions - all of which will place a greater burden on all carers to be the 'glue', communicating to join up fragmented systems and quality-check information. I my opinion, there is a lack of public awareness about the differences between social care and the NHS system. Especially, the current state of funding and availability of social care services.....
My hope lies in raising awareness and promoting local action and support.
I look forward to reading your articles. Like Anna and I said, it already feels good, to feel the solidarity! Thank you!
I'll try to tidy up my transcriptions of the podcasts to share later
So many important points are detailed in this excellent read for all caregivers to process.
Thanks, Sammie! It was tough to write and I'm sure it's tough to read all in one go. It was somewhat cathartic releasing these insights into the open. I read so many caregiver stories over the last week...Thanks for your comment. Best wishes
Two great takeaways from your post. "Trying to set boundaries around our energy and time can feel like an impossible task with a never-ending caregiving list, and well-meaning people care-splaining what we need to do." "Caregivers need care, too. Caregiving is what they do, but not who they are."
Many kind and loving people tried to tell me what to do when I was caring for my husband, but I knew him best, and some of their well-meaning suggestions just would not work.
As a psychologist, I thought I had the tools to manage the changes in our lives as more caregiving became necessary. But I was wrong. I needed respite care, family involvement, and outside services to support me through the day-to-day wear and tear, and I was better prepared than most. Many people have no prior training or experience when taking on the role.
I'm glad this resonated with you and your experience, Janice. Thanks for sharing.
Exactly, friends/loved ones don't like to see us in pain, but caresplaining is anti-helpful! In a small wave of 'splaining I resented wasting my energy on why something wouldn't work. I learnt to close and pivot off the advice only much later.
I hear you, finding and integrating support is not easy for anyone, I'm glad you were able to get empathetic, daily support.
Thank you, Victoria, for continuing to shed light on the lived experience for caregivers. The term "caresplaining" says it all - others may think that prescribing 'self care' is helpful, when it can actually be harmful. I'm glad that my recent thoughts on self care resonated, thank you for sharing them.
Thanks Anna. It's SO good to feel the solidarity and to spark each other's thoughts!
Yep, I used to get mansplained at work - in that environment, I was almost gleeful to be underestimated. Being Caresplained is a very different animal to tame inside my head, depending on who said it. I think my default response now is a deadpan, 'ok, thank you' - when inside voice is saying something very different. ;-)
This is such an important article. "Caresplaining" is indeed patronising, and shows some people's inability to grasp what caring is.
Thank you, Geraldine I appreciate you taking the time to comment. It's an intense read and I tried hard not to over-soapbox but rather, explain my thoughts....so it was hard to press the button to publish this today.
Yes, Caresplaining is just uggghhh. I try to highlight it as much as poss because it stokes new caregiver's guilt, AND repeat offenders will continue caresplaining under an assumption that they're maybe comforting or 'helping' us...when actually it's not.
It's a perfect example of how carers can end up gaslighting their own experiences, second-guessing themselves— 'look at how much others care about me, they're giving me advice. They mean well.' UGGGHH' You can see how it devolves into a downward spiral for some - between siblings, or if there's limited social connections. (me thinks I need to write another article and add in some Rebecca Solnit quotes)!
There's a market out there for greeting cards for carers, with passive-aggressive / useless "positive advice":
"Get out and do something for YOU - even just for one hour a day!"
"Get a part-time job!"
"Join a Carers' Club and meet other Carers!"
"Ask people in your community if there are activities for your [elderly parent / disabled child / sibling - tick box as appropriate] and sign them up!"
I hear you!