1500 people a day leaving work to become carers

[Throwaway380]

Was grimly cheered to see this article on the Guardian this morning as within my social circle this does seem to be increasing and no one is talking about it.

I include myself in that number as I took a career break last Summer and am still not working, looking after my Mum and Dad as well as doing normal Mum of primary aged kid things for my DD. For me it was definitely the combo of kids and parents that meant I was about to have a breakdown.

But within my social circle I know of one other good friend who is also only able to do the most meagre bank shifts as she has three kids and a Mum that needs lots of support. Another friend both her and her partner are working very part time due to their autistic daughter.

For me, it was the ‘right decision’ in the sense I’m not struggling as much mentally. But it’s awful in terms of my pension, independence, long term career prospects. Social care is utterly broken in my opinion.

I was just wondering if there are other Mumsnetters out there who are in this position?

I'm a carer for my adult autistic son. It is easier now he is an adult, there are fewer professionals involved and I don't have the school run. He stays at home most of the time and is OK being left at home alone so I'm not trapped in the house. But he isn't independent and I need to take him to appointments, deal with his benefits and provide lots of support. It could be possible to fit in work around my caring, but I have younger dcs as well and it's too much to juggle, and would be bad for my mental health to have more demands on my time.

I’m a full time carer for my 15 ye old who has a rare chromosome disorder causing learning disabilities , gross and fine motor delay , autism , hypermobility , v weak immune system and is doubly incontinent . I’m now a single mother as my STBXH decided life was “ not exciting enough “ ( his words ) and had an affair and left to live 90 mins away . If my daughter’s not at school ( she’s only there 65% of time due to illnesses and appointments ) she’s with me . I have no family support and she won’t go to her dad’s so not an evening off since December last year .
I’m fighting him hard in my divorce settlement for 1/2 the pension pot he seems to think I’m being greedy but I have no earning capacity and won’t even have enough stamps to qualify for the state pension for a few more years .. he’s also refusing spousal support saying of course I can get a job ?! Currently waiting for Universal Credit application action to go through .
Before hand I had a great career I loved but life throws these curveballs .
My parents both need help caring as in mid 80s one with cancer and one advanced Alzheimer’s but I’m too far away to help which selfishly I’m glad as I hsve zero capacity physically or mentally for anymore caring .

I wish you the very best with your divorce and well done for fighting for what you deserve. Go after his pension, go for spousal, child support and assets. How dare these men walk away from their responsibilities to their children without a backward glance. Sending strength and best wishes to you @PurpleYarnivore

Thank you , and luckily I have a great specialist divorce lawyer …. 18 months later I still can’t comprehend what he’s done to me and our family and how he has no remorse and is out living the child free life of pubs , weekends away and gigs , while I don’t get any time off except school , but as his solicitor says …. I’m just too lazy to look for work !

Yep. Me @Throwaway380.

Not even traditional caring either, just the admin and management of incredibly complex care needs across two parents.

Reduced hours to 2 days a week from full time for two years to get the right care in the right place, sort out finances, make sure property was dealt with, deal with hoarding issues, monitored care packages, deal with care issues as they arise, make sure the parents had the right care team in place, clean clothes, food and more... plus manage my own home life and children.

I have held senior roles in large complex organisations so I don't say this lightly, but it was a full time role plus without my own actual need to earn and managing family life and home. Exhausted and spent doesn't even come into it. And I had good boundaries in place. I don't know how people manage it when they don't (or can't because it is their child, not a parent) and my heart goes out to them. It has caused me health issues (hopefully short term), cost me financially and impacted my husband and children with the sheer stress of it all.

Have only just got things back on an even keel enough to go back to work proper, but am always watching over my shoulder to wait for the wheels to fall off. And if one more person tells me I will be ok because I will inherit money, I may not be responsible for my actions. Because it isn't true. Everything will go on care fees.

It is not talked about. It is just assumed it will all happen. Quietly, in the background without a fuss.

As ever, women's labour is unseen and undervalued. I do feel quite bitter at the years I struggled, working full time while caring for two children (one with high care needs) and a partner who developed Alzheimers at a very young age. It broke me, physically and mentally.

I'm doing better now, but Im still furious at the lack of help available. My partner was too young to qualify for dementia support, my child was refused CAMHS assessment because she has attachment difficulties, my employer (the department of bloody health!) refused me unpaid leave to sort out the developing crisis - the only solution was for me to work harder and faster and absorb EVERYTHING.

I left a professional career I’d been in for 25 years last year when caring for my terminally ill mother and two autistic children became too much. My work was suffering and I felt burnt out and at the end of my capabilities. I’m now receiving carer’s allowance and we’re surviving on my DH teacher’s salary.

My DM has since died but both children have been diagnosed with (yet) more diseases/syndromes commonly comorbid with autism. This is not at all where I expected to be at this stage of my life.

I am broken by the sheer amount of fighting I’ve had to do for DM (died of lymphoma, no palliative care available, no hospice care available) and for my DC (school placements, health care provision - often had to use our rapidly dwindling savings for private care where the NHS can no longer offer specialist care,eg rheumatology for my daughter’s condition). I am stunned to be where I am and to be leading the life I am.

Life is definitely made so much harder by having to fight for everything. If all agencies involved did what they should the first time of asking instead of making you jump through hoops and appeals or signposting you somewhere different that can't help after all, we'd all have much more bandwith to do the actual physical caring.

My dad passed in January after 10 years of living with dementia. We were able to keep him at home, and only had outside help in the final month, because my mom (who is a good deal younger than him) was his full time carer. I supported but continued working full time.

However, if and when mom needs care I am aware that it will fall to me to quit the career I love, to facilitate her remaining at home (if I possibly can).

It's the choice I would make, based on the priorities we have as a family, I suppose. I don't feel that I have NO choice - I just feel this would be the right thing for us. Not in the slightest would I ever judge families who make different choices.

I think this is happening more perhaps because people are living longer?

Massive respect for everyone posting on here by the way, and the things you do for your families - you sound like amazingly strong, resilient, loving women. And you should definitely get more support.

I retired early to care for three of our elderly parents. Two with dementia, one with frailty. I'm way too old for this nonsense and I wouldn't be at all surprised to die before them.

How are there so many more disabled children now? I don’t remember this at all when I was growing up. Where were they?

I agree. I had 1 Granny die in 1982, she was sick and died within 6 months and was cared for in hospital. My other Granny (who was only 5 years younger) died recently in her late 90s, she needed full time care at home for her last 10 years. Its a huge shift which massive implications, particularly now in a world of smaller families.

Similar to my other post on my Grannys, medical advances make a huge difference. DS would have died in childhood, loads of premie babies now survive too.

I am actively considering this at the moment, I have an autistic daughter with very poor mental health whom LA couldn't find a school for so she goes to a tuition centre at different times each day. Now shes post 16 our LA have refused transport and if I dont take her she cant get there , we are taking legal advice, its absolutely draining and has been for several years. My work isn't supportive or flexible, im constantly on high alert and state of anxiety trying to juggle it all.
Financially it would be a disaster not to work, but for my wellbeing and health , and to meet my daughters needs. it seems impossible to continue working.

Unpaid?

I am amazed that people can afford it. There is no way I/we could do that. We have bills to sort. Rent, food...

They were at the graveyards.

Not to mention that you’re often doing physical tasks, solo and untrained , that paid carers do double handed

Benefits, savings, food bank...and reducing outgoings.
For us, it wasn't a choice.

It depends how old you are really but since the war. Infant mortality has dropped was around 31 births per 1000 in the 50s and its now around 3.

There was much more institutionalised care even up into the 80s and 90s.

Also more mums were at home anyway, maternal employment has gone up 25% and far more work full time, so it wouldn't have been so unusual for a parent to be off anyway. It wouldnt have registered they were supporting a disabled child as much.

Also I think recollections from growing up can be very different from reality of the time, memories are quite fallible.

Medical advances. At diagnosis 16 years ago DS was predicted to live into his mid- teens, now it's increased to mid-30s.

People can’t afford it, they do it because who else is going to? There is very little support for children with disabilities, if you’re lucky to get a school they can manage you still have holidays to cover with no formal childcare, you have multiple health appointments, meetings with various professionals most of whom are of no practical help. Any employer would need to be endlessly flexible and you then end up working at odd hours to make up time, while caring for your child.

Disability benefits/UC keep your head above water to an extent, but it’s a frugal existence and you have no pension provision or savings to speak of. But there’s no choice because parents caring for their disabled child - even with state benefits - is massively cheaper to society than providing care to enable someone to work. Absolutely disastrous for personal finances though.

Sorry I disappeared - a crisis with Mum and Dad so I’m now looking at care homes. I apologise I can’t reply to everyone individually.

So many of these stories are horribly familiar. Just the sheer level of admin and management required, as well as the physical caring. Also I feel very few of us have talked about the emotional impact of caring and potentially seeing those we love suffer with awful diseases. I honestly don’t have time to think about that - which sounds harsh but I just don’t - I suspect others might be the same?

For me, stopping work has been beneficial, but the gains I can see rapidly disappearing as for various reasons the demands are going up again for both my child (some minor health and SEN diagnoses that just need attention) and parents (Dad not coping, need to arrange significantly more care which I suspect is care home, at least for respite, so sourcing and organising all of that). Basically the quieter periods allow me to regroup sometimes before the inevitable crisis. I miss working tremendously and we’re currently dipping into savings - which I realise we’re lucky to have. The confidence thing that a lot of people spoke about and feeling disconnected from society is so true though. It’s like people don’t want to see what the system can demand people to do so it ignores you the carer as well as the issues.

Also to @PurpleYarnivore - this is not the first time I’ve heard of men doing like this and it’s despicable- take him for everything you can get!

they died or a generation or two back were shoved into institutions to be ' cared for' . I use the term loosely!

And if they work more hours the carer's allowance, which amounts to 76p an hour, is deducted.

Carer's allowance does allow the full state pension but when state pension is reached, they no longer get it.

eta I agree 💯 with your post.