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Financial Lose Caring For My Partner
38 Answers
Hi, hoping for some good financial advice. My partner has kidney disease and has been on dialysis for the last two months. It has all happened so very quickly and we’re still struggling to come to terms with it. My predicament is that I’ve had to keep taking time off of work because he’s just so ill and is unable to do anything for himself at times eg, washing/dressing taking in medical deliveries, driving himself to appointments the list goes on. Last week was particularly bad I had to stay home all week, and whilst of course I am more than happy to be there when he needs me, I’m not getting paid for time off and I still need to support my two children financially and I’m really struggling now. I’m terrified of the future, worry about him my kids and money. And I worry I’m going to end up ill myself at this rate and then who will look after everyone. I have no idea where to turn, who can help me or where to start. Everything just seems so hopeless. Any advice welcome.
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There might be quite a lot you can claim financially and also quite a bit of help.
First do the PIP form and ESA as well, anyone can fill these in, get an advocate if you can to do it. I used to fill in lots for people and it doesn't take long once you are used to the forms, and do it from the perspective of a 'bad day' if he has good and bad days.
Carer's allowance is a possibility but slightly more complicated and sometimes it takes thinking about whether you would be best to claim it or if there is another family member who would be better given there are earnings limits and hours constraints on it.
Basically it's as follows, as it's considered a 'wage replacement benefit' which tbh is dreadful :-
You must look after someone who gets a qualifying disability benefit
for at least 35 hours a week, you must not be in full-time education
you can't earn over £120 a week (after deductions).
The qualifying disability benefits are Disability Living Allowance (where that still exists- higher or middle rate only), Personal Independence Payment (Daily Living component), Attendance Allowance and Armed Forces Independent Payment.
The £120 per week ceiling for claiming Carer's allowance is particularly harsh and they are quite stringent about how they enforce it, however if you are in employment and are paid monthly, your monthly earnings are normally multiplied by 12 months to get a yearly figure and then divided by 52 weeks to get a weekly figure.
If you are in employment and have fluctuating earnings it is possible for your earnings to be averaged out over a recognisable cycle of work or over five weeks.
If you are in self-employment your average weekly earnings are normally calculated by looking at a specific trading period, which is normally a year. However if you have only recently started your self-employment, or if there has been a change in your circumstances, then a different period more representative of your average weekly earnings can sometimes be used.
The following amounts are deducted from your gross weekly earnings (if you are in employment) or your net profit (if you are in self-employment) before your earnings are taken into account for Carer’s Allowance:
Income Tax
National Insurance
half of your contributions towards an occupational/personal pension
If you already claim an overlap benefit you are also not entitled to carer;s allowance AT ALL ( which is frankly a disgrace as it means a slightly less disabled partner cannot be a paid carer for their partner or indeed a pensioner).
State Pension
Contributory Employment and Support Allowance
Incapacity Benefit
Maternity Allowance
Bereavement or widow’s benefits
Severe Disablement Allowance
Contribution-based Jobseeker’s Allowance
If I can help any further let me know but I would also contact various Kidney charities as discussed and speak to the carer's support service for advice on getting in help as well. x
First do the PIP form and ESA as well, anyone can fill these in, get an advocate if you can to do it. I used to fill in lots for people and it doesn't take long once you are used to the forms, and do it from the perspective of a 'bad day' if he has good and bad days.
Carer's allowance is a possibility but slightly more complicated and sometimes it takes thinking about whether you would be best to claim it or if there is another family member who would be better given there are earnings limits and hours constraints on it.
Basically it's as follows, as it's considered a 'wage replacement benefit' which tbh is dreadful :-
You must look after someone who gets a qualifying disability benefit
for at least 35 hours a week, you must not be in full-time education
you can't earn over £120 a week (after deductions).
The qualifying disability benefits are Disability Living Allowance (where that still exists- higher or middle rate only), Personal Independence Payment (Daily Living component), Attendance Allowance and Armed Forces Independent Payment.
The £120 per week ceiling for claiming Carer's allowance is particularly harsh and they are quite stringent about how they enforce it, however if you are in employment and are paid monthly, your monthly earnings are normally multiplied by 12 months to get a yearly figure and then divided by 52 weeks to get a weekly figure.
If you are in employment and have fluctuating earnings it is possible for your earnings to be averaged out over a recognisable cycle of work or over five weeks.
If you are in self-employment your average weekly earnings are normally calculated by looking at a specific trading period, which is normally a year. However if you have only recently started your self-employment, or if there has been a change in your circumstances, then a different period more representative of your average weekly earnings can sometimes be used.
The following amounts are deducted from your gross weekly earnings (if you are in employment) or your net profit (if you are in self-employment) before your earnings are taken into account for Carer’s Allowance:
Income Tax
National Insurance
half of your contributions towards an occupational/personal pension
If you already claim an overlap benefit you are also not entitled to carer;s allowance AT ALL ( which is frankly a disgrace as it means a slightly less disabled partner cannot be a paid carer for their partner or indeed a pensioner).
State Pension
Contributory Employment and Support Allowance
Incapacity Benefit
Maternity Allowance
Bereavement or widow’s benefits
Severe Disablement Allowance
Contribution-based Jobseeker’s Allowance
If I can help any further let me know but I would also contact various Kidney charities as discussed and speak to the carer's support service for advice on getting in help as well. x
Carer's allowance plus attendance allowance for the OH and if above 12 hours, then higher attendance allowance. Plus 25% rates reduction for normal attendance and a further 25% for higher attendance if you are not married. Some councils give out an annual award to - just found that out here - £400 to the carer as a thank you.
Adults cannot make a new claim for DLA and AA can be claimed only if the person is State Pension age so it's PIP that could be claimed.
As Universal Credit (UC) has rolled out nationally, KALAN's OH would need to claim New-Style ESA (which is based on contributions) or UC (based on the household's income.)
As Universal Credit (UC) has rolled out nationally, KALAN's OH would need to claim New-Style ESA (which is based on contributions) or UC (based on the household's income.)
Thank you all so much for your advice, I think I will speak with citizens advice it all seems like a mine field that I just can’t cope with right now, I hate that I’m having to go down this route but I honestly just cannot juggle everything. Sorry just over emotional at the moment. Thank you all so much
Hi K, I'm sorry you're both having to go through this. I can't advise about finances as we were in a different situation and when MrG was on dialysis three or four times a week the hospital provided transport so I was able, in the early days, to work.
Neither did I have the children and financial strains you are having to consider but FSGS did cost us thousands one way or another.
I read that you were trying to have help with home dialysis and this may be where you are. If so you do need to be at home.
I do know a fair bit about FSGS though and in particular FSGS and transplants. It's a nasty condition but whatever you are told it is possible for someone with FSGS to have a successful transplant. Some just work but some need plasma exchange and for much longer than the six weeks offered to try to rid the body of the antibodies causing the damage.
When the antibodies began to attack MrG's transplanted kidney I fought to have the plasma exchange continued for as long as I felt necessary. I think the renal folk were happy to give in so they could experiment but the blame would lie with the feisty wife if it failed.... :-)
Took a very long time but plasma exchange once or twice a month is much kinder to the body than dialysis at least three times a week and MrG ended up with a well functioning kidney....and no dialysis!
If I knew what I knew after the transplant I would be investigating and perhaps pushing for plasma exchange before a transplant....maybe even a live donation which they are reluctant to perform on an FSGS sufferer. That I don't know enough about but all avenues are worth investigating.
Things may have moved on wonderfully since our experience....I do hope so but if I can help at all I will....I wish you both well.... Gx
Neither did I have the children and financial strains you are having to consider but FSGS did cost us thousands one way or another.
I read that you were trying to have help with home dialysis and this may be where you are. If so you do need to be at home.
I do know a fair bit about FSGS though and in particular FSGS and transplants. It's a nasty condition but whatever you are told it is possible for someone with FSGS to have a successful transplant. Some just work but some need plasma exchange and for much longer than the six weeks offered to try to rid the body of the antibodies causing the damage.
When the antibodies began to attack MrG's transplanted kidney I fought to have the plasma exchange continued for as long as I felt necessary. I think the renal folk were happy to give in so they could experiment but the blame would lie with the feisty wife if it failed.... :-)
Took a very long time but plasma exchange once or twice a month is much kinder to the body than dialysis at least three times a week and MrG ended up with a well functioning kidney....and no dialysis!
If I knew what I knew after the transplant I would be investigating and perhaps pushing for plasma exchange before a transplant....maybe even a live donation which they are reluctant to perform on an FSGS sufferer. That I don't know enough about but all avenues are worth investigating.
Things may have moved on wonderfully since our experience....I do hope so but if I can help at all I will....I wish you both well.... Gx
Hi, K....MrG developed FSGS following an operation for a Mekel's diverticulum performed by a surgeon in the undiagnosed early stages of encephalitis.....the surgeon made mistakes. That was in 1997.
Despite the offer of two live donations, one of which was a perfect match the doctors refused to go ahead with that transplant at the very last moment.
He then received a slightly damaged kidney from a dead donor partly as an experiment in 2003. I'm told there were 13 experiments around the same time on FSGS patients using plasma exchange in an effort to save the donated kidney. MrG was one of the few for whom the plasma exchange partially worked. Some on the trial worked well...some failed straight away.
I persuaded the doctors to continue with plasma exchange well past the six weeks they usually tried for.
This went on for a very long time because it's difficult to tell if or when the antibodies have been beaten. The treatment was weaned down to once a month, which after dialysis was bliss, then in 2008 we all felt it was safe to discontinue completely....and it was!
We were back to having a lovely life and had planned a long holiday in Ireland. MrG developed a slight urine infection so, to protect the working kidney, he was admitted to LGH for intravenous antibiotics.
It was the first time I'd not been able to be with him during his stay to make sure all was clean and safe.
He contracted C-diff during the treatment......dirty hospital or careless staff......and after a long and horrid few weeks he died...from C-Diff but with a perfectly working kidney. So sad and unforgivable.
I had never let him be in hospital for a stay without being with him and cleaning everywhere with Tea Tree Oil......I was known as Mrs Tea Tree and I don't forgive myself for not being with him on that last visit.
Now that I've scared you...I'm sorry.....what happened to him is rare and few have such bad luck so don't worry....just use lots of Tea Tree Oil.....all around his bed, locker etc.. :-)
When you feel able investigate plasma exchange and FSGS....speak to his team about it and if I can help in any way please ask...though as I said things have, I hope, moved on since our time and I may be out of date on the progress made.....x
Despite the offer of two live donations, one of which was a perfect match the doctors refused to go ahead with that transplant at the very last moment.
He then received a slightly damaged kidney from a dead donor partly as an experiment in 2003. I'm told there were 13 experiments around the same time on FSGS patients using plasma exchange in an effort to save the donated kidney. MrG was one of the few for whom the plasma exchange partially worked. Some on the trial worked well...some failed straight away.
I persuaded the doctors to continue with plasma exchange well past the six weeks they usually tried for.
This went on for a very long time because it's difficult to tell if or when the antibodies have been beaten. The treatment was weaned down to once a month, which after dialysis was bliss, then in 2008 we all felt it was safe to discontinue completely....and it was!
We were back to having a lovely life and had planned a long holiday in Ireland. MrG developed a slight urine infection so, to protect the working kidney, he was admitted to LGH for intravenous antibiotics.
It was the first time I'd not been able to be with him during his stay to make sure all was clean and safe.
He contracted C-diff during the treatment......dirty hospital or careless staff......and after a long and horrid few weeks he died...from C-Diff but with a perfectly working kidney. So sad and unforgivable.
I had never let him be in hospital for a stay without being with him and cleaning everywhere with Tea Tree Oil......I was known as Mrs Tea Tree and I don't forgive myself for not being with him on that last visit.
Now that I've scared you...I'm sorry.....what happened to him is rare and few have such bad luck so don't worry....just use lots of Tea Tree Oil.....all around his bed, locker etc.. :-)
When you feel able investigate plasma exchange and FSGS....speak to his team about it and if I can help in any way please ask...though as I said things have, I hope, moved on since our time and I may be out of date on the progress made.....x
I’m so sorry for your loss. To have gone through all you did and loose him like that. We see his consultant tomorrow so I will definitely be asking questions about plasma exchange. Thank you for bringing that to my attention, I’d not heard of this before. He’s always been such a hard working man who is so full of energy. From that to how he is now gets us both down. It’s all happened so quickly, less than 2 years ago he was diagnosed, the last 8 months have been shocking how quickly it progressed. Still can’t get our heads around it. Just feels like we’re in a bad dream that we can’t wake up from
Thanks, K....I know just what you are both going through. I had a never ill husband...fit and full of life. Suddenly it was days in bed or on the sofa sleeping...unable to drive safely...watching that happening to the person you love is heartbreaking...
If you feel like posting I'd be interested in what your consultant says about plasma exchange. I knew nothing about it at all until post transplant. I wish I'd known beforehand. I've done a little research on pre transplant plasma exchange but of course it was too late for us so I don't know enough about it. I would be interested to know if things have moved forwards with this or if...probably because of the cost...it's still on a back burner......x
If you feel like posting I'd be interested in what your consultant says about plasma exchange. I knew nothing about it at all until post transplant. I wish I'd known beforehand. I've done a little research on pre transplant plasma exchange but of course it was too late for us so I don't know enough about it. I would be interested to know if things have moved forwards with this or if...probably because of the cost...it's still on a back burner......x
Wow this is what AB is about, such support out there :)
All I may add, and may have missed if someone already said sorry, is do you have to take unpaid time? Can your employer be more flexible at all while you take the time to follow the advice and contacts given? Apologies if youve tried already. Best wishes xx
All I may add, and may have missed if someone already said sorry, is do you have to take unpaid time? Can your employer be more flexible at all while you take the time to follow the advice and contacts given? Apologies if youve tried already. Best wishes xx
Chelle....that is exactly what Dave said when I asked him whether I should answer K although I couldn't help with her OP....
I can't help with that but I do have experience of the fairly rare illness in adults that her partner is experiencing and it does help to chat and share....AB at its very best....x
I can't help with that but I do have experience of the fairly rare illness in adults that her partner is experiencing and it does help to chat and share....AB at its very best....x
It really has been and still is awful. I’m so glad by putting up this post I’ve had the chance to chat to someone who knows exactly what it’s like. I have put on my long list plasma exchange, so I hope consultant doesn’t expect us to be out of our appointment in 5 minutes. I will of course update you, I’m can’t tell you how grateful I am to learn more that could help him. I’d do anything to get him better and am putting myself forward to be tested as a live donor. Thank you so much, I just wish I could knock on your door and give you a hug after what you’ve been through. X
Thanks chelle7272, it has been a strength to come on here and get advice and support. I honestly don’t think my employer could afford to cover me financially whilst I deal with this, I’m honestly terrified because I would imagine any benefit income will be down to universal credit which will lead me even further in to debt. All I hear are horror stories about it on the news. It just feels like brick walls are up against us all the time just now.
Hi, K....I wanted to donate to MrG but we had different blood groups and it wasn't considered safe at all all those years back. I believe that there is now a treatment called plasmapheresis which can make this possible....if your blood groups don't match that may be worth investigating. Ask about it.
I also wanted to try a paired match transplant with another couple I met at one of the meetings.
I could give a kidney to him and his wife to MrG. The hospital refused because they couldn't do the transplants at the same time and another two couples had opted for this but the second pulled out immediately after the first transplant had taken place. How bloody mean. Nothing I said or did could persuade them to make an exception and try for same time transplants.
Never accept a hurried appointment...this is too important to both of you......we once, after a ninety minute drive and a very long wait in the waiting room, arrived at the consultants desk. A nurse popped her head in to remind the consultant she had to leave in five minutes to catch her train. I refused to continue with the consultation until we saw somebody who was prepared to give us the time we needed.
I'm in a good place now, K....but I'd love to give you a hug because all we went through is still so fresh in my mind even after all these years so I know just what you and your partner are going through....
Again...my knowledge is now a bit rusty but I'm happy to help in any way I can........xxx
I also wanted to try a paired match transplant with another couple I met at one of the meetings.
I could give a kidney to him and his wife to MrG. The hospital refused because they couldn't do the transplants at the same time and another two couples had opted for this but the second pulled out immediately after the first transplant had taken place. How bloody mean. Nothing I said or did could persuade them to make an exception and try for same time transplants.
Never accept a hurried appointment...this is too important to both of you......we once, after a ninety minute drive and a very long wait in the waiting room, arrived at the consultants desk. A nurse popped her head in to remind the consultant she had to leave in five minutes to catch her train. I refused to continue with the consultation until we saw somebody who was prepared to give us the time we needed.
I'm in a good place now, K....but I'd love to give you a hug because all we went through is still so fresh in my mind even after all these years so I know just what you and your partner are going through....
Again...my knowledge is now a bit rusty but I'm happy to help in any way I can........xxx
Tonyv I haven’t yet, it may sound daft and I know I need to do it but I’m also scared to, it just feels like another big hurdle to overcome.
G. I will make sure nothing is rushed for him. At diagnosis it was a case of “here take these pills” we left thinking nothing much of it other than a false sense that the pills would keep it under control. There was no explanation of how serious this could become. We learned a lot more about it from google. Since things started to go so rapidly downhill, I’ve gone to every single consultant appointment along with my list and we’re going nowhere until we’re satisfied all has been understood and actions are taken. Today will be a long day, so far we can see no benefits from dialysis, in fact he seems worse in some ways. He’s very depressed (understandably) I’m also feeling that way myself although I hide it as best I can from him he did catch me crying over the weekend. I don’t want him to feel bad for me because this is out of his control, and I don’t want him to feel like he’s a burden as this is something he keeps saying. We just need some sort of hope thrown our way at a very seemingly hopeless time. X
G. I will make sure nothing is rushed for him. At diagnosis it was a case of “here take these pills” we left thinking nothing much of it other than a false sense that the pills would keep it under control. There was no explanation of how serious this could become. We learned a lot more about it from google. Since things started to go so rapidly downhill, I’ve gone to every single consultant appointment along with my list and we’re going nowhere until we’re satisfied all has been understood and actions are taken. Today will be a long day, so far we can see no benefits from dialysis, in fact he seems worse in some ways. He’s very depressed (understandably) I’m also feeling that way myself although I hide it as best I can from him he did catch me crying over the weekend. I don’t want him to feel bad for me because this is out of his control, and I don’t want him to feel like he’s a burden as this is something he keeps saying. We just need some sort of hope thrown our way at a very seemingly hopeless time. X
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