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We're feeling forced for my husband to become a full-time ca

Posted: Thu Aug 17, 2017 12:19 pm
by Sarah_170812
I'm new here although I've been a carer for 15 years+ for our autistic children and in the last 7 years for my elderly mother who is now severely visually impaired due to macular degeneration and has memory and cognitive problems due to a silent stroke that we think took place at the end of 2015.

This is a long post but hopefully some of you can stay with me to the end - the top and bottom of it is basically it is we're have to consider my husband leaving work (even though he doesn't want to and we probably can't afford to live on benefits), to become a full-time carer for for family members.

Things have changed dramatically for us over the last 18 months because I have developed severe chronic fatigue syndrome/ME, fibromyalgia and I'm under investigation for postural tachycardia. The stress of dealing with social care has had a massive negative impact on my health for many years and they ignored my requests to reducing the demands on me and stress they were causing me, so I'm sure it was a major part of the cause of my conditions.

My autistic children have had social care plans for many years and my mother for several years and I have been a registered carer and received carer support for many years too.
Historically Devon County Council have managed the care and support very poorly with major issues when my children reached 18yr and when my mum's care needs increased due to a stroke particularly. Making complaints has actually made things worse because they do things even slower now.

My conditions have become very severe this year and I submitted my own social care assessment in February and informed relevant social workers that my health wouldn't allow me to continue with my care responsibilities but nobody contacted me until May and my husband needs as a carer for for disabled people have still not been addressed - apparently is assessment form a is still with Devon carers.

My husband has had to become everyone's main carer including mine and has to work full time to provide for our family finanicially; social care do not seem to understand he can't give care when he's out at work and why he can't take me or other disabled family members to appointments during his working day, or that he can't make up the hours he's missed when he is caring every hour he is awake and not at work. I've deteriorated further over the summer holidays partly due to having to continue providing support to our autistic children and my mum and do vast amounts of social care admin, luckily its been the summer holidays and our 15 year old daughter has been able to give me the extra personal care that I need but she'll be back at college in September and she hasn't had much of a summer holiday.

We have direct payments because the flexibility and being able to employ carers that are suitable for a families multiple needs is essential but my social care package is unworkable - just 30 minutes here and 30 minutes there and not enough to cover my basic needs whilst my husband works full time and my daughter legally has to attend full-time education.

Then yesterday my social worker sent an email asking to review how statutory care and carer support could be reduced!!!! (apparently it's policy) when they're not even fully in place yet because we haven't received the support we need with employing carers and we're too busy caring or unwell and they haven't completed the assessment and provided my husband's carer plan.

My husband's employer has been amazing allowing working from home, flexible hours and him to take time out in the day to support family members with appointments, whilst social care was supposed to be getting the support sorted out so he didn't have to do that but social care are not getting things sorted out and and causing our whole family ongoing continual stress.

My husband is also going to a major reorganisation at work and will have to reapply for his job in September but logistically at present he cannot do it let alone have time to put in a re application.

So right now I've had enough of fighting for statutory provision, advocacy is pointless it just caused more stress and I really just want some quality of life for my family and I, especially as I'm now bed bound and my husband's and daughter's health is deteriorating.

So we're having to consider my husband giving up full-time work to become a full-time carer, even though he doesn't want to and I think work and getting out of the house is the only thing that keeps his sanity.

I'm not even sure we could survive on benefits as my husband has a good job which is essential because we have to support our autistic young adult children who cannot work yet and I'm still in full-time education.

Unfortunately we don't have the savings to finance an unpaid break for my husband even in the short term and these issues are short term anyway even though social workers think they are.

I have emailed carers UK asking for benefits advice and just waiting for a reply as I can't get through on the phone.

I'm really interested to hear from anybody else who has had to give up work to care full time or whos partners have had to give up work to care full time and how it affected them emotionally and your relationship too? And how did you cope financially?

Many thanks
Sarah

Re: We're feeling forced for my husband to become a full-time ca

Posted: Thu Aug 17, 2017 12:37 pm
by bowlingbun
Don't let your husband give up his job. Your children are likely to qualify for Legal Aid, my son has. Let someoone else fight your battles.

Re: We're feeling forced for my husband to become a full-time ca

Posted: Thu Aug 17, 2017 8:42 pm
by Sarah_170812
bowlingbun wrote:
Thu Aug 17, 2017 12:37 pm
Don't let your husband give up his job. Your children are likely to qualify for Legal Aid, my son has. Let someoone else fight your battles.

Sorry I'm confused, how would our young adult children getting legal aid help?

We can't cope with the stress of more battles, I'm too ill, my husband has no time and advocates have just caused more stress.

And its the insufficient care for myself, for my mother and especially the lack of carer support, especially for my husband thats the issue.

After battling the system for years its quality of life that's most important now.

Re: We're feeling forced for my husband to become a full-time ca

Posted: Thu Aug 17, 2017 8:53 pm
by bowlingbun
You need to make sure everyone is getting the care they are entitled to. If you are on bebefits, or a child, you can have legal aid if the LA is not complying with the Care Act. When was their needs assessment last updated, was it complete, accurate, with risk assessments, personal budget etc. Etc.?

Re: We're feeling forced for my husband to become a full-time ca

Posted: Thu Aug 17, 2017 9:11 pm
by MrsAverage
Hello Sarah
Lots of us on here will identify with that 'I can't fight any more feeling' . Unfortunately some councils do seem to apply more and more pressure until peopl just cave in and agree to anything, and it seems like you are at that point.
I agree it wouldn't be good for hubby to give up work and Ss should be doing what they can to keep him there as the sole breadwinner.
They do seem to not be following the Care act at all and I too would recommend you looking into getting legal aid on behalf of anyone in your family who is not getting the support they need and who is on benefits. That way some else will fight your battles for you.
Kr
MrsA

Re: We're feeling forced for my husband to become a full-time ca

Posted: Fri Aug 18, 2017 9:51 am
by Sarah_170812
I'd really like to hear from people who have given up work - the pros and cons and how they've got used to it individually and as a family and how they've made it work for financially.
And especially where there's multiple family members living in the same household that have statutory care needs.

We wouldn't give up social care and carers support but we don't want to be at their whim anymore - this is about increasing the quality of family for us all. Managing four social care packages and two carers packages, that provide anything let alone what we actually need, is a crazy amount of administration and the amount of time and meetings and the negative impact on my health and on my husband and daughter as well as the rest of the family is not worth it.

Fighting is all well and good and very important but we've been doing that for 16 years!

The recent severe deterioration in my health and becoming housebound, then bedbound very quickly, has made me reassess what is really important in life and that's quality of life for my family and I.

So it's time to think creatively and to stop putting my husbands and daughter's health and well-being at risk. I know the negative impact it had on me, all the continually fighting social services and education and health, so I am not going to do that to them.

More fighting even if somebody else is doing it for us is not the solution as it causes more stress from the time and energy that is needed for meetings and explaining everything for the millionth time and that decreases quality of life.

So if anybody out there is trying to find creative ways to decrease stress and increase quality of family life I'd love to hear from you :)

Re: We're feeling forced for my husband to become a full-time ca

Posted: Fri Aug 18, 2017 10:24 am
by Melly1
Hi Sarah,
Your hubby should look here https://www.carersuk.org/upfront/ and see what financial help he will be entitled to.

I would also recommend him contacting the helpline for advice too. ( same link.)

A lot of carers who give up work to care, find it a lot harder than they imagined. Would your husband be able to take a year out of work as a sabbatical and at the end of his year you could evaluate as a family the pros and cons of him being a stay at home carer?

Plenty on here have given up work to care, others have tried reducing their working hours instead.

Melly1

Re: We're feeling forced for my husband to become a full-time ca

Posted: Fri Aug 18, 2017 11:31 am
by Sarah_170812
Melly1 wrote:
Fri Aug 18, 2017 10:24 am
Hi Sarah,
Your hubby should look here https://www.carersuk.org/upfront/ and see what financial help he will be entitled to.

I would also recommend him contacting the helpline for advice too. ( same link.)

A lot of carers who give up work to care, find it a lot harder than they imagined. Would your husband be able to take a year out of work as a sabbatical and at the end of his year you could evaluate as a family the pros and cons of him being a stay at home carer?

Plenty on here have given up work to care, others have tried reducing their working hours instead.

Melly1
Thank you for your reply.

We're waiting to hear back from the helpline about benefits.
Yes we know it would be hard on benefits but trying to weigh that up against up health and quality of life, as my husband has had to take so much sick leave due to the pressures of caring for family members.

My husband couldn't take any unpaid leave as financially we couldn't afford, it so I'm not sure if the sabbatical allows you to claim benefits, as I suppose legal aid still be employed?

A year can make a big difference and it would give us some breathing space.

There has to be an answer, something to improve life because it's just got way on silly for far too long.

Re: We're feeling forced for my husband to become a full-time ca

Posted: Tue Sep 19, 2017 8:03 pm
by Jess_1612
Hi,

I am afraid I don't have any practical advice. But just wanted to say I have Postural Tachycardia Syndrome (PoTS) so if you need anyone to chat to about that drop me a message any time.