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Questions about Disability Living Allowance and Carers Allowance and Dialysis (if anyone knows)

(11 Posts)
suwoo Mon 18-May-09 10:12:57

My BF is one step away from total renal failure sad. They are going to Florida at half term and when they return she will be starting dialysis. She will be having it 3 times a week for 4 hours at a hospital that is around 30 mins away. She will also be placed on the transplant register.

Obviously she will be unable to work, so will they be eligible for disability living allowance? I am assuming that it is not means tested? They are fairly comfortable now, but her giving up work will affect this.

Also will her DH be able to claim any kind of carers allowance, or is this just for people who don't work and care for someone full time? He will be staying in his full time job.

She is used to dialysis as her mum had it when BF was younger and had two transplants. Her older brother just started it this week after avoiding his health issues for years- the doctors told him this week that they would have given him 2 weeks to live sad

Poor BF sad

noddyholder Mon 18-May-09 10:21:37

sad.I was on dialysis for 2 yrs
ánd got incapacity benefit and DLA.I'm not sure about carers allowance as I think we looked into it at one point and dp would have got it but they would have taken it from my money so we would have been in the same situation.Dp had to give up work to look after me though so not sure what the situation is with a partner still working.I think when I had a transplant and dp back at work everything stopped fairly quickly.She needs to fill out the form stating the worse case scenario Send her my best wishes I really know what she's feeling atm Hope she gets a transplant asap xxxxx

CMOTdibbler Mon 18-May-09 10:21:52

She should talk to the dialysis unit about when she can have her dialysis - one of my mums friends has just started (had to have both kidneys removed), and his session is 7-11pm. That might mean she could keep working

Is she not eligible for peritoneal dialysis ? That can be done at home fairly easily

noddyholder Mon 18-May-09 10:25:49

You can still work if you feel up to it.I never did.Peritoneal doesn't suit everyone but is a great option if you can do it.

suwoo Mon 18-May-09 10:46:47

I think she is worried about her 7 year old DS if she has it at home. She grew up with her mum having it at home and doesn't want that for her DS. Noddy, you got your transplant so quickly, I hope my friend can be as lucky. How are you feeling now? I will be linking her to this thread so any advice is great.
Thanks.

noddyholder Mon 18-May-09 11:00:44

I have had 2 transplants the first in 1985 and the second in 2000.I was v lucky as they were both live related donors.I started at home and hated the impact on our home life as I couldn't distinguish between the 2 My ds was 6 and i wanted normality for him and so kept it all at the hospital.I have other health problems but my transplant function is escellent and I take each day as a gift tbh.I have a great life and althouigh its different it is still fab.I never had more children and would have liked them but apart from that life is good.

suwoo Mon 18-May-09 11:05:27

My friend has very high blood pressure which I think is related to the renal problems and she had been told they won't be able to have any more children (possibly after her transplant). I don't think she has any people related to her that would be suitable donors. Thanks for your input, I'm sure I can wish you well on her behalf x

noddyholder Mon 18-May-09 11:08:18

I have had an ongoing BP battle although when she starts dialysis it should hopefully come down.She will need a lot of support I found the whole 'being kept alive by a machine'difficult and never really accepted it.Some of the patients were amazing though and worked holidyas everything and really lived well It is different for everyone She is lucky to have a good friend like you in her corner she'll need you x

suwoo Mon 18-May-09 11:25:18

She is a massive support to me too. She hasn't had it easy, with her and her mums health problems and she lost her dad a few years ago. Her MIL passed away recently and her FIL has terminal cancer. sad

Glad, I can do something albeit small to help.

lazymumofteenagesons Mon 18-May-09 11:51:41

Disablilty living allowance is not means tested and it makes no difference whether you work or not. I don't think you can get carers allowance if you work full time, there are rules about the hours a carer should be 'caring'. Check out adviceguide.org.uk
HTH and good luck

Podrick Thu 10-Sep-09 21:35:06

I wanted to ask, how is it going? My dad needs to start dialysis so I have searched mumsnet threads for dialysis experiences as I am feeling pretty bad about it

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