How nice to be acknowledged. An interesting read. However to be asked by a neurologist how ‘we’ are doing- I can’t see that ever happening, even our own doctor doesn’t check on us, anti-depressants given and off you go… forever, left to get on with it. ‘Care’ outside the home is declining in this country and I can’t see it ever changing now. These organisations that are supposed to help are a nice thought but what can they actually do. And if you work forget any help, as usual.
Oh and did you know carers, once you reach 66 and start receiving your state pension your carers benefit stops - talk about adding insult to injury …..
Very interesting read, thank you for sharing. I am a full time carer for my husband with MS who has also just been diagnosed with cancer.
There was no choice involved in me taking on this role, I had to leave my own 26 year career in Higher Education & the level of support I have since discovered carers receive is completely unacceptable. From the insulting carers allowance there is a complete lack of recognition for what we do & all other support basically comes down to talking with others, which whilst helpful in a certain regard, it does not address the much needed practical support required by so many carers dealing with so much.
Caring is a hugely complex role & much of it seems to go unspoken & unsupported.
I’ve actually just started a new publication of my own on here, called ‘The Other Role’, where I have decided to start sharing some of the more personal aspects of my life as a carer, since my husband’s additional cancer diagnosis, because not only do I hope it will help others going through difficult times, but also because I think more people need to understand the many aspects, impacts & pressures involved in the life of an unpaid carer.
Thanks for sharing your story. I would recommend "The Selfish Pig's Guide to Caring"
by Hugh Marriott. I have several copies of the book and used to lend it to my patients' carers and ask them to return it when they had finished reading it. Most carers found it very helpful.
People don't choose to become a carer, it's their partner or family member. It's a responsibility. I don't feel particularly comfortable with it being called unpaid, as I haven't chosen it as a job. Ironically I may consider it as a job when I stop doing my full time job. I always think about the safety briefing on a plane when thinking about looking after myself ; if helping someone else with their oxygen mask, put on yours first so you can help them. To look after myself, I am able to work at home. Friends and family accept I can't necessarily go out to an event and don't pester me about it.. I don't fret about the house being messy. I play walking football once a week. We have a lovely son who encourages me to eat better and go for works. And look after my skin! He has a whole morning skin care routine. After living with my partner's diagnosis for a long time, this is my choice ; acceptance makes life a lot easier. He should have as good a life as anyone else. Money would make a difference. Not worrying about the mortgage would be once less stress.. And his mum is now in a care home, that was extremely stressful looking after her for the last few years, not physical care, everything else.
Reverend Mary Webster began campaigning in 1963 after giving up work to care for her parents, highlighting the immense "unpaid caregiving," lost income, and lack of rights for those supporting elderly relatives.
The term "unpaid" was popularised in the UK to describe carers primarily by Reverend Mary Webster and the organisation she founded in 1965, the National Council for the Single Woman and her Dependants (now known as Carers UK).
I want to stress that I am not the first person to use this term.
I hope that this is relevant. I’m the one with MS in this marriage and in the main I don’t need any help. Last early Spring my wife received a diagnosis of stage 4 endometrial cancer after which she had a full hysterectomy, followed by chemotherapy and immunotherapy and then 5 weeks of radiotherapy. I can quite understand how and why informal caring is bad for the carers brain especially when the carer is caring for someone close and important to them.
When supporting my wife through cancer and treatment my mind and emotions were focused totally on her : my mind just blocked out everything else and I spent the whole time feeling anxious and fearful. It’s only now , over a year since diagnosis, that I’m beginning to feel more relaxed and that my mind and emotions are recovering and ‘opening up’ again. It’s been an awful time but for now it’s over. Caring for someone with MS who needs care permanently and with no chance of things improving must be incredibly demanding on the carers mind, emotions and whole physiology.
Thinking more about this, there are so many different aspects to the issue. I can see that in some cases the main issue could be relatively simple in terms of providing the carer with help in dealing with the practicalities of caring although the carer might be facing the extra demand of looking after all the financial etc matters. What is going to be far more difficult to deal with , however, is how on Earth do you provide the emotional support to a carer who is caring for the love of his/her life and the myriad of emotions and memories tied up with that?
Prof G, There is one large piece that I don't see here: a presentation of the state of social care, the postcode lottery in its availability and reliability, and the delay in reforms while we wait for Baroness Casey's independent commission report in 2028. When the social care infrastructure has not kept pace with demand, more people are taking more time out of work, or leaving work completely to care for their family. https://www.carersuk.org/reports/the-tipping-point-when-unpaid-carers-can-no-longer-combine-work-and-care/ "The most commonly cited factor that would have helped carers stay in work was more affordable, accessible, or reliable social care services. 35% of carers who had given up employment said this would have prevented them from reaching a tipping point. "
I think your article frames 'care' = the unpaid carer being the backbone and respite/replacement care being a supplement, this assumes someone is there giving unpaid care - is that a correct interpretation of your view?
"Uptake is poor: Carers UK report that around 39% of those who haven’t had one cite simply not knowing it exists. Please note that employees in England, Scotland and Wales (not yet Northern Ireland) are entitled to five days of unpaid Carer’s Leave per year under the Carer’s Leave Act 2023, taken as half-days, full days or a block."
Please note - unpaid carers leave may not be possible for low income households, carer's use this time to attend appointments or orchestrate care it's not 'holiday', and has to be planned in advance vs responding to an emergency, sudden symptoms or an impromptu caree need. Perhaps it would be more interesting to ask - a)what do carer's think of the Carers assessment, b)what value - tangibly and emotionally, has or does it offer c) logistically/operationally what's the feedback on getting one.
I hope these help you to expand and fine-tune your lens on what it's like to be an unpaid carer in the UK
Thanks. This newsletter was not meant to be a state-of-the-art critique of care services in the UK, which we know have problems. The newsletter was prompted by the following article, which is likely driven by chronic stress.
Xue et al. Association between becoming a carer in later life and changes in the trajectory of cognitive function: results from the English longitudinal study of ageing. Age Ageing. 2026 May 4;55(5):afag132.
Thank you, Prof G. Apologies, I appreciate your article and how you've presented the information and recommendations to support carers in response to the article. I especially like your conclusion
I think your article hit a nerve - "Are you a carer? Is informal caring good or bad for the carer’s brain?"
Over the last decade, I've met older carers, trying to navigate the social care system, who can't receive carers allowance anymore (beyond pensionable age) and are under chronic stress trying to care for a loved one - spouse/partner/adult child with disabilities/a parent. I've cared for my parents over the last decade. So perhaps, for me, the study shares what I already know and see in others - that over time, there is increasing stress and it becomes more intense and/or the amplitudes are more acute with events. So my mind quickly pivots to the question - why is this happening, and what needs to change? - hence my reactive response.
Increasing numbers of people are becoming carers, and the Carers UK report is a useful reference on how that stress affects us as carers.
Thank you for your conclusion and that last paragraph. Changes are needed.
Dr G, et al - US citizen / EDSS 8...My husband is killing himself caring for me..
Your attention and insights into the profound toll of caring is profound and L-O-N-G overdue. GRRR - We the people, and our "elected representatives must legislate / publicly support / pay / contribute to the toll on families for care. More unpaid mostly "women's work" in a world of grotesque inequality and distorted priorities is NOT ok.
My wife cares for me and she is only 43. It scares me that she is wasting a young healthy life just looking after me. I have had long open and honest chats with her about whether she should really be sacrificing this much but she insists.
How nice to be acknowledged. An interesting read. However to be asked by a neurologist how ‘we’ are doing- I can’t see that ever happening, even our own doctor doesn’t check on us, anti-depressants given and off you go… forever, left to get on with it. ‘Care’ outside the home is declining in this country and I can’t see it ever changing now. These organisations that are supposed to help are a nice thought but what can they actually do. And if you work forget any help, as usual.
Oh and did you know carers, once you reach 66 and start receiving your state pension your carers benefit stops - talk about adding insult to injury …..
Very interesting read, thank you for sharing. I am a full time carer for my husband with MS who has also just been diagnosed with cancer.
There was no choice involved in me taking on this role, I had to leave my own 26 year career in Higher Education & the level of support I have since discovered carers receive is completely unacceptable. From the insulting carers allowance there is a complete lack of recognition for what we do & all other support basically comes down to talking with others, which whilst helpful in a certain regard, it does not address the much needed practical support required by so many carers dealing with so much.
Caring is a hugely complex role & much of it seems to go unspoken & unsupported.
I’ve actually just started a new publication of my own on here, called ‘The Other Role’, where I have decided to start sharing some of the more personal aspects of my life as a carer, since my husband’s additional cancer diagnosis, because not only do I hope it will help others going through difficult times, but also because I think more people need to understand the many aspects, impacts & pressures involved in the life of an unpaid carer.
Thanks for sharing your story. I would recommend "The Selfish Pig's Guide to Caring"
by Hugh Marriott. I have several copies of the book and used to lend it to my patients' carers and ask them to return it when they had finished reading it. Most carers found it very helpful.
Thank you so much, I will definitely take a look at that.
People don't choose to become a carer, it's their partner or family member. It's a responsibility. I don't feel particularly comfortable with it being called unpaid, as I haven't chosen it as a job. Ironically I may consider it as a job when I stop doing my full time job. I always think about the safety briefing on a plane when thinking about looking after myself ; if helping someone else with their oxygen mask, put on yours first so you can help them. To look after myself, I am able to work at home. Friends and family accept I can't necessarily go out to an event and don't pester me about it.. I don't fret about the house being messy. I play walking football once a week. We have a lovely son who encourages me to eat better and go for works. And look after my skin! He has a whole morning skin care routine. After living with my partner's diagnosis for a long time, this is my choice ; acceptance makes life a lot easier. He should have as good a life as anyone else. Money would make a difference. Not worrying about the mortgage would be once less stress.. And his mum is now in a care home, that was extremely stressful looking after her for the last few years, not physical care, everything else.
Thanks for your thoughts.
Reverend Mary Webster began campaigning in 1963 after giving up work to care for her parents, highlighting the immense "unpaid caregiving," lost income, and lack of rights for those supporting elderly relatives.
The term "unpaid" was popularised in the UK to describe carers primarily by Reverend Mary Webster and the organisation she founded in 1965, the National Council for the Single Woman and her Dependants (now known as Carers UK).
I want to stress that I am not the first person to use this term.
I hope that this is relevant. I’m the one with MS in this marriage and in the main I don’t need any help. Last early Spring my wife received a diagnosis of stage 4 endometrial cancer after which she had a full hysterectomy, followed by chemotherapy and immunotherapy and then 5 weeks of radiotherapy. I can quite understand how and why informal caring is bad for the carers brain especially when the carer is caring for someone close and important to them.
When supporting my wife through cancer and treatment my mind and emotions were focused totally on her : my mind just blocked out everything else and I spent the whole time feeling anxious and fearful. It’s only now , over a year since diagnosis, that I’m beginning to feel more relaxed and that my mind and emotions are recovering and ‘opening up’ again. It’s been an awful time but for now it’s over. Caring for someone with MS who needs care permanently and with no chance of things improving must be incredibly demanding on the carers mind, emotions and whole physiology.
Thinking more about this, there are so many different aspects to the issue. I can see that in some cases the main issue could be relatively simple in terms of providing the carer with help in dealing with the practicalities of caring although the carer might be facing the extra demand of looking after all the financial etc matters. What is going to be far more difficult to deal with , however, is how on Earth do you provide the emotional support to a carer who is caring for the love of his/her life and the myriad of emotions and memories tied up with that?
Prof G, There is one large piece that I don't see here: a presentation of the state of social care, the postcode lottery in its availability and reliability, and the delay in reforms while we wait for Baroness Casey's independent commission report in 2028. When the social care infrastructure has not kept pace with demand, more people are taking more time out of work, or leaving work completely to care for their family. https://www.carersuk.org/reports/the-tipping-point-when-unpaid-carers-can-no-longer-combine-work-and-care/ "The most commonly cited factor that would have helped carers stay in work was more affordable, accessible, or reliable social care services. 35% of carers who had given up employment said this would have prevented them from reaching a tipping point. "
I think your article frames 'care' = the unpaid carer being the backbone and respite/replacement care being a supplement, this assumes someone is there giving unpaid care - is that a correct interpretation of your view?
You may have already seen this Carers UK report "the impact of caring across carers' lives" https://www.carersuk.org/reports/state-of-caring-2025-the-cost-of-caring-the-impact-of-caring-across-carers-lives/
"Uptake is poor: Carers UK report that around 39% of those who haven’t had one cite simply not knowing it exists. Please note that employees in England, Scotland and Wales (not yet Northern Ireland) are entitled to five days of unpaid Carer’s Leave per year under the Carer’s Leave Act 2023, taken as half-days, full days or a block."
Please note - unpaid carers leave may not be possible for low income households, carer's use this time to attend appointments or orchestrate care it's not 'holiday', and has to be planned in advance vs responding to an emergency, sudden symptoms or an impromptu caree need. Perhaps it would be more interesting to ask - a)what do carer's think of the Carers assessment, b)what value - tangibly and emotionally, has or does it offer c) logistically/operationally what's the feedback on getting one.
I hope these help you to expand and fine-tune your lens on what it's like to be an unpaid carer in the UK
Thanks. This newsletter was not meant to be a state-of-the-art critique of care services in the UK, which we know have problems. The newsletter was prompted by the following article, which is likely driven by chronic stress.
Xue et al. Association between becoming a carer in later life and changes in the trajectory of cognitive function: results from the English longitudinal study of ageing. Age Ageing. 2026 May 4;55(5):afag132.
Thank you, Prof G. Apologies, I appreciate your article and how you've presented the information and recommendations to support carers in response to the article. I especially like your conclusion
I think your article hit a nerve - "Are you a carer? Is informal caring good or bad for the carer’s brain?"
Over the last decade, I've met older carers, trying to navigate the social care system, who can't receive carers allowance anymore (beyond pensionable age) and are under chronic stress trying to care for a loved one - spouse/partner/adult child with disabilities/a parent. I've cared for my parents over the last decade. So perhaps, for me, the study shares what I already know and see in others - that over time, there is increasing stress and it becomes more intense and/or the amplitudes are more acute with events. So my mind quickly pivots to the question - why is this happening, and what needs to change? - hence my reactive response.
Increasing numbers of people are becoming carers, and the Carers UK report is a useful reference on how that stress affects us as carers.
Thank you for your conclusion and that last paragraph. Changes are needed.
Dr G, et al - US citizen / EDSS 8...My husband is killing himself caring for me..
Your attention and insights into the profound toll of caring is profound and L-O-N-G overdue. GRRR - We the people, and our "elected representatives must legislate / publicly support / pay / contribute to the toll on families for care. More unpaid mostly "women's work" in a world of grotesque inequality and distorted priorities is NOT ok.
My wife cares for me and she is only 43. It scares me that she is wasting a young healthy life just looking after me. I have had long open and honest chats with her about whether she should really be sacrificing this much but she insists.
Yes, understood. I am lucky that I can work at home
I'm so glad you are highlighting this but it's too close to home atm to comment 🙏