Caring for live-in daughter on PIP. How much should she contribute? 31 March 2020 at 10:56AM in Disability money matters 11 replies 675 views

ReggieA

One of my daughters has multiple health problems and had to return home to be cared for. After a couple of years we finally applied for benefits and she has now been granted enhanced PIP for 10 years, as well as the full UC payment. Her care does cost a little more than average because she needs special products and gluten-free food. When she lived with us once before, I found it impossible to know how much to ask her for. There are so many unknowns, like an added heater being plugged in night and morning (no central heating), extra washing etc. We just had a stairlift fitted for her, and she will be paying something towards that with her back pay. But she needs a new bed, and a new sofa a bit earlier than I would have bought one, and has been assuming she'll have to save up to buy these - of course I said no. It's so complicated! I've always been inclined to help all the kids out and overlook costs, but this is permanent, so we need an agreement. Thinking about money panics her too, so I need to be kind, gentle and clear. She's not grasping or controlling, we just neither of us have a clue. Does anyone have any experience/thoughts please?

Spoonie_Turtle

You need to decide as a family what's reasonable. There's what you'd have asked her to contribute anyway if she were well but living at home (housekeeping - from her income, which is what UC is) then what's reasonable for the extra costs (which is the whole point of PIP). I'm not saying she should necessarily be contributing her whole PIP! Especially if she goes out sometimes and it's more expensive than if she were well - but think of what she'd have to pay for if living on her own, then it's not unreasonable for her to cover or largely contribute to costs for things that are solely or mostly for her.

I say this as a chronically ill, disabled adult living at home with my parents, just so you know where I'm coming from. (I contribute a third of my income - a third for housekeeping, a third to spend, a third to save. For me, larger purchases such as a new mattress do come under spending and/or having saved up. My parents are happy to help out where they can, but I feel that especially as I can't do anything else to help in the house, I want to be the least financial burden possible and maybe even help out with other household expenses to relieve some other financial pressure if possible.)

ReggieA

Thank you Spoonie_Turtle (love your name!) We're really finding it hard as a family to decide what's reasonable. We wouldn't have known what to set it at had she been well. I'm very grateful for your insight. Yes, I suppose it's fair to ask for a contribution for extra furniture, petrol for hospital trips etc. She can't go out anywhere unless I take her, and is very limited in what she can manage. A third seems to be a fairly common way of looking at it, but maybe I should list some extras. She's obviously expecting to reimburse me when I buy her clothes etc. I think she was hoping that back pay would go towards furniture, which she needs right now because of pain levels, but then she needed the stairlift. Sorry, rambling .. just a bit hard to wrap my brain around it all, on top of her declining health. 

Spoonie_Turtle

You're welcome, I can understand it's a lot to work through. What works for different families will vary, but I hope you can come to an agreement that's comfortable for everyone  

For things like furniture, one option you could consider is you paying for it all upfront and then your daughter 'paying you back' whatever she would have paid for it (either a contribution, or the whole lot), maybe over a few months or saving up to pay you back. [If you can afford that, of course, but I infer from your original post that you were considering paying for it anyway.]

You or she are welcome to PM me if you want to discuss anything specific, especially as it sounds like she and I are in reasonably similar situations.

KxMx

Another disabled adult here living with Mum.
I pay for all the food I choose myself and contribute to the cost of communal food in freezer, cupboard etc.
I pay the agreed amount of keep towards bills at Mums request. 70% goes towards gas/electricity and 30% towards water. I pay extra October-March due to heating, as I am home most days and Mum works full time. 
I am self funding for everything else I need, big purchases are saved up for. 
We have striven towards an arrangement which leans more towards adults living together than parent & child. 

Spoonie_Turtle

KxMx said:

Another disabled adult here living with Mum.
I pay for all the food I choose myself and contribute to the cost of communal food in freezer, cupboard etc.
I pay the agreed amount of keep towards bills at Mums request. 70% goes towards gas/electricity and 30% towards water. I pay extra October-March due to heating, as I am home most days and Mum works full time. 
I am self funding for everything else I need, big purchases are saved up for. 
We have striven towards an arrangement which leans more towards adults living together than parent & child. 

Oh yes, forgot about food, toiletries, etc. Anything that's mine alone I pay for, and contribute towards other communal things (e.g. go halves on toiletries that Mum and I both use). Same with my brother who is well but can't afford to move out.

That is a good way of viewing it, adults living together rather than parent and child. Helpful for self-esteem to retain at least one form of independence, especially if one has no control over any other forms.

ReggieA

@Spoonie_Turtle Sorry I took so long to reply - I had to face the dreaded rounds of shops to find the few things that she can eat, which is a slow and exhausting process round here.
Thank you so much! That a very kind suggestion, and it means a lot. Sadly, she can't do things like that (message friends). She's very weak, with severely low energy levels, and lots of brain fog. And even knowing that I found you in trying to think about finances would be enough to cause anxiety that would overwhelm the ability to chat with you. It's sad, because healthy people don't understand how to reach out to her, so she's lost most friendship. But yes, thinking of it in terms of her paying a contribution, over time, makes a lot of sense. i'm feeling more able to have that conversation with her now, when she feels able. Thank you for your help and encouragement.

PasturesNew

One figure to look at is the figure for those in care homes.  They get provided with furniture, food/meals, little parties, occasional outings, laundry done, cleaning done etc .... and if they're on any benefits/state pension then all they get to keep is ~£22/week (figure needs checking as that's from about 2012-2015 or so). 

From that £22/week they'd buy their own clothes, sweets/treat/food requests, shampoo/toiletries, pay for their hair cuts, or anything else they wanted. 

Ultimately though... it all depends on how much you've got/are prepared to fork out for and your ability to do so.  

ReggieA

@KxMx @Spoonie_Turtle Fortunately we were already doing well with the two adults rather than adult/child thing. But sadly, a lot of the time it's a relationship of carer and patient. I think, for us, it's too complicated to work out the cost of all her food, electricity etc, but yes, she will pay for extras. I do most her shopping for her and she's trusting me to take payment for things like clothes from her funds. We have an account in my name for her benefits to come to, and leave some of the benefits in there already, to cover those general expenses, before the rest goes by standing order into her account. And, even though she trusts me, I'm keeping records, just in case she wants to check anything. So my question was really to see if anyone had already done some sums and come to a logical figure from the benefits. Some people suggest going with a third, but that seems to me to be reverting to the parent/child situation. KxMx, you wrote, '70% goes towards gas/electricity and 30% towards water.' Could you elaborate on that please, I'm not sure I understand. Thank you both.

KxMx

What I mean is 70% of the amount I pay goes directly towards the utility bills (money gets put onto a Post Office Budget Card) and 30% goes via standing order to water company.

Anything joint like food shopping usually goes on my card (for points) and Mum sends me what she owes for her personal food and half the communal food. 

That is the arrangement that works for us 😊

Maybe do some budgeting to see what the increased costs actually are and find a figure from there that you are both happy with. 

Spoonie_Turtle

ReggieA said:

@Spoonie_Turtle Sorry I took so long to reply - I had to face the dreaded rounds of shops to find the few things that she can eat, which is a slow and exhausting process round here.
Thank you so much! That a very kind suggestion, and it means a lot. Sadly, she can't do things like that (message friends). She's very weak, with severely low energy levels, and lots of brain fog. And even knowing that I found you in trying to think about finances would be enough to cause anxiety that would overwhelm the ability to chat with you. It's sad, because healthy people don't understand how to reach out to her, so she's lost most friendship. But yes, thinking of it in terms of her paying a contribution, over time, makes a lot of sense. i'm feeling more able to have that conversation with her now, when she feels able. Thank you for your help and encouragement.

No worries, I understand completely [It's only since stabilising that I've been more active on here anyway, and still don't have the energy to really maintain any friendships.] I'm glad you feel a bit more prepared to be able to work something out.