My partner is a full time carer, and she's close to breaking point.

A place for those 18-35 to chat about all things caring.
Matt73
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My partner is a full time carer, and she's close to breaking point.

Postby Matt73 » Sun Jul 09, 2017 2:56 pm

Hi,

I have a problem, although not as big as the one my partner currently faces. The username I have is a pseudonym to protect my identity as well as my partners and her family as I'm doing this without her permission, but I feel like I have no choice because I honestly don't know what to do. I think she's reached a point where things are getting serious, and I feel she's simply walking in to it hoping it'll go away. I'm sorry that this may end up being quite long. I should also point out that if you are a carer and you see this thread and all the problems within, remember that you don't want it to get this serious before you can reach out for help, if you feel trapped or lost, seek help here as soon a possible. Don't feel intimidated by the problems we are having, seek help early if you feel you need it - Don't let it get this bad.

My partner is a full time carer for her mother and her brother. Her mother has a vast multitude of disabilities all stemming from cerebral palsy. Her brother is on the autism spectrum but is otherwise fully able. The father has left and no longer provides assistance to the family in any form. I don't want to go in to detail about her mothers health and what her doctor has prescribed her, but I do feel her doctor has been massively negligent in her mothers care.

I've recommended that she come to Carers UK for advice before, but it's been some time now and she hasn't, so I'm here on her behalf as I feel she's reaching a breaking point. She's working with a social worker/occupational therapist that is very difficult to get a hold of and has a tendency to over promise and under deliver. The house (owned by the mother) needs work done, but the area is one of the most deprived in the country and she has difficulty contacting someone who isn't a cowboy to do the work, if they can even afford it. The council has told them that (due to a mortgage they have no hope of paying off, and a particularly hard to work with building society) because they can't guarantee they'll be living in the property for five years, they aren't entitled to have a stairlift fitted. Without a stairlift it takes her mother approximately 30-40 minutes to climb the stairs due to her knees having chronic arthritis. She has also been told that she is no longer entitled to carers unless it's for three hours a week to vacuum the house and do general housework that my partner does anyway, but all of the actual care that her mom needs has not been made available, the social care services available have always found a way to avoid helping. My partner moved her bed downstairs to the living room so her mother didn't have to worry about climbing the stairs on a daily basis. She sleeps downstairs in an armchair in the same room as her mom so she can provide help if her mother needs to go to the toilet.

As she's a full time carer my partner can't work, which means they have an income comprised entirely of benefits.

Problem two, stems from the needs of her brother which her mother insists on putting him first before her own care. Due to him having autism he has difficulty understanding the situation that they find themselves in. For a number of years, he has been given a percentage of his benefits directly from his mother which has allowed him to buy things he wants and her mother has also allowed him to have a second room downstairs, which my partner now wishes to move her mothers bedroom in to so she has more privacy. He said no, and her mother says this is OK, even though she's visibly depressed about remaining staying in the living room.

The third problem is my partner herself. During her childhood years she used to suffer from depression, and I'm worried she may fall in to depression again if things continue as they are. I feel this is all affecting her mental state of mind and has over the past six months as her mothers conditions have deteriorated broke down over the phone or on Skype every two-three weeks.

Lastly, I'm 300 miles away to the west of Britain. We have a long range relationship that has last almost 10 years. I'm paying off two large debts which I'm fully in control of and now have three years left before the debts are closed, earlier with any extra payments I make. I live with and financially support my mother (her boyfriend has some health complications and is no longer earning the money he was on before so I'm having to step in to help). I am in full time work, and I mostly provide moral support to my partner and visit when I have the money. In the earlier years I tried to get them to move away from where they live now but her brother doesn't want to move, even though my partner and her mother does want to move. My partner also felt that any move would have a detrimental affect on her mother as she'd be unable to move for a prolonged period.

I'm earning £30k, and I can't move myself as I'd be moving to an area with little to no job prospects and would find myself in serious financial difficulty if I did, and the nearest town that I have a chance at getting a job in is also one of the most expensive places to live in the UK outside of London. I also feel that if I provide financial assistance to my partner, their benefits would be at risk meaning I would then be responsible for the financial needs for them all and in all likelihood would then no longer be able to meet my debt repayments.

My own personal circumstances are good, but I've reached a point where I feel that my partner needs some specialist help as she feels hopeless and out of control. In three years once my debts are paid off, I am planning to take out a slightly larger loan to close the remaining mortgage on the house as in the next three-four years they are in danger of being evicted. I can afford the loan provided I move to a higher paid job in the coming years and I don't mind being shackled with debt for another five years if it means my partner can keep the house and focus on providing care for her mother, although I feel in the long term it'd be more beneficial if they moved out of the area entirely so I could not only live with them but also maintain my full time job so I could pay the bills so my partners family no longer has to worry about that as finances are a huge stress point.

Moving either the brother or mother in to a care home is out of the question. My partner has also resigned herself to never having a career in her chosen field (she's in her mid 20's) because of the demand on her that the role of carer has, and while she has friends she doesn't keep in contact because there is little point when she is needed almost 24/7.

I think we need professional help, although I don't know where that could possibly come from. There is so much more I haven't mentioned, but I feel I've covered the necessary to get a hold of the situation we find ourselves in.

I feel social services aren't doing anywhere near enough to help. When my partner had her last needs assessment she was told she needs "time off" but this isn't possible when her mothers own needs require her to be available at any time with little to no notice. Because of the social services workers over promising and failing to deliver or working their way out of something, she's used to being told there is nothing else that can be done.

Is there anyone experienced in this able to tell us if there is something we're missing? Should I or my partner really be calling about this instead? I love my girlfriend, and I do feel hopeless not being able to do anything right now for her.

Thanks in advance for any help provided.

bowlingbun
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Re: My partner is a full time carer, and she's close to breaking point.

Postby bowlingbun » Sun Jul 09, 2017 3:57 pm

Firstly, I'd say not to get involved with ANYTHING financially.
Your partner's family have a very complex relationship by the sound of things, and if she won't even come to the forum, then it shows she doesn't really feel she needs the help. In fact, she doesn't have to do ANYTHING at all for her mum and brother.
What should happen? Mum and brother should ask, in writing, sent Recorded Delivery, for a Needs Assessment. This should be COMPLETED within 6 weeks. Partner should also ask for a Carers Assessment. Draft copies should be sent to them, to be approved and signed off IF they think they are complete and accurate. Then a Care Plan should be drawn up for each of them.
If this doesn't happen, then they should complain, in writing/email, to the complaints officer at County Hall, NOT the local office.
Information is Power!!!

Henrietta
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Re: My partner is a full time carer, and she's close to breaking point.

Postby Henrietta » Sun Jul 09, 2017 10:19 pm

Hi Matt
Your partner is very lucky to have you. I would strongly advise you not to pay anything towards the mortgage for your partner. The sad fact is that if eventualy the care needs of her family mean that a care home is the only option, the property will be sold off if it is in her mums name and used to pay the care home fees.
Your partner is still very young in her 20s and you really do need to extract her from this situation if you are to have a future together. Care can consume the years all too quickly and either your partner needs to make a life time commitment to her vocation or extract herself by making some positive moves to set up an alternative care plan for her family. I think you need to give her a gentle ultimatum and explain that she is putting your life on hold at the moment.
Assuming her mum will not be self funding if she has mortgage arrears and so the SS MUST provide adequate care fo rher one way and another. If someone is there doing their job for them fo rfree they will wriggle out of their responsibilities. It is essential really that your partner firmly declines to help and gets SS involved asap.
She needs to become the care manager and not the carer -overseeing the care provided for her family but not giving up her life to be their carer.

jenny lucas
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Re: My partner is a full time carer, and she's close to breaking point.

Postby jenny lucas » Mon Jul 10, 2017 11:20 pm

Matt, I agree strongly. Do NOT get financially involved in this! Remember, if your partner's mother/brother have to go into residential care at any point, they will be assessed as to whether they are over the self-funding limit or not, and any money you contribute will simply mean they have to pay for their own care .... you are simp ly saving the local authority money!

Personally speaking, I'd say the following:

- The brother's views are 'irrelevant' in that he is obviously not going to want to either move out of his downstairs room, or move house. But that is because of his autism. But whether it is because of his autism preventing him from understanding that others have needs, etc, or whether it's just because he's thoughtless and thankless and selfish (I do hope not!), the point is he's living in someone else's property, and therefore has no 'rights' to say what goes on, or if that property is sold etc etc. Bascially, he gets what he's given by his mum, and that's that!

Of course, his mum won't either want to 'force' him, or will feel guilty about doing so, but in that case, sadly, she has to gtake the consquences of letting him stay in the downstairs room, and of saying no to her selling up and moving somewhere easier for her.

BUT, she can only do that if her daughter then takes the consquences - ie, stays to keep looking after the two of them. So, bottom line, it's your partner that has to put her foot down. Make it clear that first of all her brother moves upstairs to vacate the downstairs room for her mum, or else she, your partner, is walking out (and coming down to you!). That HAS to force her mum's hand....(and if it doesn't, well, that's her mum's responsibility - she has to live with her decision not to make her son vacate his room....)

Really, though it sounds like it would be much more sensible for her mum and brother to move to a bungalow where the best adaptations can be made for her mum's physical limitations. I suspect that in the end, what her brother doesn't like is 'change' of any kind - hence his refusal to move out of his room. Again, that is just 'tough' when it's not his house, it's not his decision.

I dont' think you should move at all - stay where you are, earning your good salary, and, above all, repaying your debts as fast as you can. Until you do they will be a chain around your neck. They are the priority I'm afraid, not your MIL and BIL. Not even, I would say, your partner.

If you would prefer to stay 'for ever' in the west country, where your job prospects are good, etc, and want to base yourself there permanently, then maybe if your partner's mother bought a bungalow in the west country, and the brother either moved with her, or went into some kind of appropriate supported accommodation for suitable for his autistic needs, that would enable your partner to go on offering a degree ofcare to her mum. Though, as others are urging, this needs to be 'care organiser' - ie, getting in care workers etc - rather than hands on , so that she can finally get on with her own life and her own career ...and hopefully move in with you as well.

It's not an easy situation ,but you cannot get yourself sucked into it to 'save' your partner. Lines have to be set down, and ultimatums issued - and those you issue them to have to take the consquences if they don't go along with them. YOU do not 'carry' them in ANY way. Or you just perpetuate a hopeless situation....

Your 'best love' for your partner is to 'free' her as much as possible from the trap she's in, and that means getting her out of the place she is, even if that means her mum moving closer to where you are....

Colin_1705
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Re: My partner is a full time carer, and she's close to breaking point.

Postby Colin_1705 » Sun Jul 16, 2017 12:36 pm

Tell your partner she must have a holiday this August


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