Would you recommend caring.

Share information, support and advice on all aspects of caring.
My son was brain damaged at birth. He's now 39. 39 years of battles with health, education, social services. I wish they'd all realise that I've been doing a difficult job to the best of my ability. The more I ask for help, the more I am seen as the problem!
I'm actually a little younger than BB's son, have cared for 3 generations of family thus far and buried members from 2 of those.
My current caree's include an adult sibling

I grew up in this environment so it was never really a choice, things get worse and I find myself giving up more and more to compensate. In spite of originally being a young carer I had been able to achieve a successful (albeit short lived) career in the engineering sector and run a small business, which is the only reason I can tick the roof over head box from that list.

I do agree that many days you can feel like you are almost being deliberately sabotaged at every turn and it makes you wonder if bankrupting yourself mentally, physically and in the long-term financially is worth it.. but in the same breath looking after your own is the "right thing to do". I sometimes feel like it is unfair that we have to give up so much of our lives and still get treated so badly for it or made to feel at fault as the cause of something you have no control over.

I'm also seen as a problem because I compensate for my communication difficulties (aspergers/asd which is kept from almost everybody) with persistence and a very well rounded knowledge base, I absorb information exceptionally well and weaponize it. I am the sort of person that will make a cold caller actually hang up in seconds to amuse myself when I'm having a bad/stressful day :)

The original question is a big ask, unsupported which these days is 9/10 cases I would be leaning towards no.
I'm a 17 and a half year Traceaostomy carer for my daughter who is 18. She also has global development delay, cortical visual impairment and brain damage and is peg fed. The eldest daughter is 29 has severe Autism , Epilepsy and is on Anti Psychoctic medication as she is so violent. My son has come to live with us as my ex wife could not cope with him , he is the same Autistic with Epilepsy and in the 2 weeks he has lived with us we have been attacked twice by him we have had to drag him in off the street as he was lying down on the path and I was up with him screaming for no reason and at half 5 I had to give him a sleeping tablet. That is a small glimpse into my life as I'm sure many if not all of you are in the same boat or worse. If for some reason they all went what do we have nothing I'm telling if I knew then what I know now I would never become a carer. Best wishes to you all you all are amazing.
gary_18041 wrote:
Mon Apr 30, 2018 6:34 am
I'm a 17 and a half year Traceaostomy carer for my daughter who is 18. She also has global development delay, cortical visual impairment and brain damage and is peg fed. The eldest daughter is 29 has severe Autism , Epilepsy and is on Anti Psychoctic medication as she is so violent. My son has come to live with us as my ex wife could not cope with him , he is the same Autistic with Epilepsy and in the 2 weeks he has lived with us we have been attacked twice by him we have had to drag him in off the street as he was lying down on the path and I was up with him screaming for no reason and at half 5 I had to give him a sleeping tablet. That is a small glimpse into my life as I'm sure many if not all of you are in the same boat or worse. If for some reason they all went what do we have nothing I'm telling if I knew then what I know now I would never become a carer. Best wishes to you all you all are amazing.
Gosh, Gary, that is such a lot to be coping with. I think the thing that bothers me most is that I feel being my son's carer has stopped me being his mum. He didn't really start showing any difficulties until he was 3 and the first three years were amazing. But then it started to become apparent that there were some difficulties and, in our situation, the lack of support and dealing with the public sector have been the worst aspects. As time has gone on everything I do and focus on is to do with looking after him and I just don't feel like his mum. I was looking at pictures of him when he was a baby and I can't access that feeling of just enjoying him and enjoying being with him because I'm just so wiped out. I love him to bits but I don't actually feel it most of the time because I'm constantly focusing on getting through the day. It tears your soul out, I think.
Best wishes to you and yours as well.
" As I am in receipt of my state pension, I get paid nothing, it is considered a 'benefit'"

Anne, pause while I reach for my axe and SLAUGHTER THE VILE VILE VILE CIVIL SERVANTS WHO CALL PENSIONS A BENEFIT.

May they rot in HELL.

I get SOOOOOOO angry when OAP is called a 'benefit'.

IT's NO MORE A BENEFIT THAN A PRIVATE PENSION IS!!!!

We PAY into the damn state system - we PAY. Can't those vile morons of civil servants and politicians get that through their one-brain-cell brains?

It should be BANNED as a word, and EVERY time a politician or civil servant uses it they should be lynched.

The DWP is the Department of WORK and PENSIONS. It is not the Department of Work and BENEFITS.

And the very term BENEFIT is an insult as well! As though it's some 'gift' from a generous state to a pathetic and unworthy recipient who should be grovelling for it!

There are VERY few people who have NOT paid, in their taxes, into the Welfare State Fund.. Yes, there ARE some 'scroungers' who have never worked and never intend to and think they can live off the state (and all too often 'breed' on the state too!) (and some, yes, will 'deliberately' have children to 'live off them') (but probably fewer than the Daily Mail thinks!)(but probably more than the Guardian thinks!!!!)

BUT NEARLY EVERYONE PAYS IN to the Welfare system, and that is why it is NOT a 'benefit' to claim on it when we NEED it (and we NEED it to SAVE THE STATE MONEY by doing what the State WILL NOT DO)


RIght, rant over! (I'm ranting to the converted, I know!!!!!!)
Right, I've put my temper back in the box!

As to the OP, no, I don't think anyone would 'recommend' caring. We give up our lives to do so.

BUT, as others are pointing out, that is only because the state effectively 'blackmails' us to do so.

Our love for our carees 'blackmails' us, because if we don't care, the state certainly doesn't.

I think that can 'backfire' on the state only when, say, and it's mostly in the case of eldery parent carees, I suspect, a carer simply doesn't have sufficient reason to love their caree enough to give up their life for them.

I wouldn't give up my life to make my MIL happy by having her live with me at the expense of my own life. I simply didn't love her, so I wouldn't make that sacrifice. I felt bad about it - because I'm fond of her, and I didn't want her to be unhappy in a care home etc etc - but in the end it was 'her or me' and I chose me. Maybe I'll pay for it myself and I'll be stuffed into a care home by my equally ruthless daughter in law at some point, but I guess in that case I won't have a case for complaint, will I.!!!!

To me ,the saddest cases I read about here (not the most tragic, see below), are when a hard pressed put upon dutiful son or daughter slaves away endlessly for an utterly ungrateful, thankless, oblivious, selfish, narcissistic parent.....

Sometimes, of course, it's because if they DON'T, they'll be left penniless and homeless.

(The truly tragic cases are parents devoting their lives to their own children.) (That's the ultimate 'blackmailed by love into caring'......)
Thank you to you all for your honesty and your passion I have enjoyed reading all your posts and thank you for allowing me a small glimpse of how you all feel. I would like to wish you all best wishes and lots of love as you are all heroes in my eye and deserve a lot more.
Anne. I have just read your post re not receiving anything for caring for your husband. Do you know about Attendance Allowance? It's a tax free social security benefit that isn't means tested. This benefit could be claimed by your husband and would, I'm sure, be of good financial help to you both. X
Just read this thread and felt I had to respond.
I care for my 26 year old disabled daughter who lives with me and until recently my Mum with dementia, Mum recently went into care home.
As others have said you get sucked into doing more and more as the state offer less and less.

In my own case it seemed impossible to coordinate respite for my daughter with sitters for my mother so when I was relieved of caring for one it mean't I could give time to the other but would much rather have had the time to myself.
Even with help you are have it on 'their' terms. Carers will want to put a client to bed at 8pm by the latest as they don't want to finish late. I personally knew a man in his forties who was put to bed around 5.30pm as the care agency struggled to get someone after that.
If I fancy going out with my husband for a meal and the pictures which would mean getting back about 11pm you can forget it because no care agency will have workers who work that late.
It's all very well having Direct Payments so you can employ someone privately but people willing to do it are not easy to find. Our own local brokerage service who I have contacted on numerous occasions could not find anyone for us. I think this is particularly true if the person cared for has complex needs, is a wheelchair user, is non communicating or has additional issues like epilepsy, incontinence or feeding issues or in fact anything that involves too much trouble.
My own respite service said my daughter was hard work to push around! Reducing her to a piece of luggage. Yeah tell me about it- you go off duty after 8 hours but after I have pushed her around the shops or the park I come back do the dinner, bath her, put her to bed and then answer some stupid e mail about the Direct Payment monitering forms which they want back within a week.
I care because I love my daughter and I know she deserves better than what statutory services offer.
Interested in five conditions list someone put up.

I certainly fulfill 4, arguably 5 (as my time caring will be small percentage of my life in all likelihood) but I still couldn't recommend it.

Any feeling of purpose gained from caring (that I had when was 'in limbo' couple years ago) has simply evaporated.

While I don't mind being my mum's care manager (let's be honest that role was always going be one have to assume hence POA's) I do resent having fill in for carers like did this morning.

I would say it suits my current lifestyle (semi-retired) :!: to care but should that cease to be the case (e.g. 'proper' paid opportunity in third sector present itself or I return to education full-time) then I'd reduce my caring commitment without second thought. Should that mean my mum misses (routine) appointments, tough titty! LOL