Expenses as a Carer (sorry this is likely to be a long one)

Share information, support and advice on all aspects of caring.
MIL is chair bound/bed bound, with 4 x daily care package. I do shopping, laundry, errands, sort out all appointments, paperwork, meds, meal deliveries etc. I submitted Attendance Allowance form last Sept on her behalf. She said nothing about letter approving higher rate of £83/week from 1 November ... normally correspondence is thrust under my nose - "can you sort this out as I don't understand" . I only discovered claim had been accepted in a recent conversation with lady who did her care financial assessment, and I subsequently found letter in a drawer.

Now don't get me wrong, I don't want £80 a week, but there is so much running around, phone calls, paperwork/forms to complete/scan/copy/post, people to chase when things not done etc, not to mention my extra electricity for washing and drying her laundry, I am out of pocket. When I found letter, she denied seeing it - "you know I don't understand things" ... I told her it was to pay for extras she can no longer do herself, like cleaner who comes in every week to do her housework. I then said I too need to cover costs for my extra help ... "Oh I do appreciate all you do" ... Mmmm, that doesn't cover my expenses though does it?

One day last week, I spent nearly an hour on phone over 4 separate calls trying to sort her council tax rebate and correct her prescription that had been messed up, followed by trip to surgery, then chemist to pick up correct meds and deliver to her - I had already visited her that morning, so this was another 14 mile 'round trip. Then in middle of the night, her lifeline called us to say she had thrown up on her bed, so we went down at midnight, stripped her and her bed, cleaned her up etc - 14 mile trip again, 42 miles in one day!. But I have nothing to show what that cost. Mum pays for shopping and other bills as I have a receipt or invoice, but how can I quantify the "unseen" stuff I do to make sure things happen? I wouldn't mind if it was just occasional or short term, but its been ongoing since she went into Hospital last May, and not changing any time soon as she is dependant on me for everything other than her personal care. It was her choice to be at home, but financial consequences on me doesn't seem fair.

Hubby said I should just take it out of her account (I have her card once a month to withdraw cash from her account for her to keep at home), but not comfortable doing that. Does anyone else take a portion of AA to cover their costs, and if so, how do you make it work. Thanks if you have waded through all this, and apologies if this sounds like a rant ...
Hi LesleyAnne,
Feel free to rant away. You are quite right, Attendance allowance IS to cover the cost of this sort of thing, either paying a relative/ friend or a support worker for their time and expenses. This money isn't for saving it's for spending on support. I think this is a conversation you both need to have with her.

She should definitely be paying for her own cleaner!
Could you do the washing at her house, thus using her electricity- would the care workers have time to unload the washing machine etc if you put a load on etc

As most of the journeys are routine, just calculate the mileage X 45p, so a round trip to MIL costs £6.30, work out the same for a trip to the shops/ pharmacy etc Add up the number of hours you support her and pay yourself the National Living wage (or whatever you have lost earnings,) either calculating this each week or work out a monthly average. You could keep notes in an exercise book to show where the expenses have been incurred.

Then ideally hubby ( but will probably end up being you,) can tell her that you've taken out a bit extra to cover costs and if she wants more info you can show her the notes you have made. This isn't being greedy, just being fair.

Melly1
Is there any reason the carers don't do her laundry? My father's put laundry in washing machine, run the machine, then take washing out, hang on airers and put away when dry. If there's no time, the once-a-week cleaner will put stuff away. If there's still no time, we've agreed that the cleaner must be paid for extra time to do it.

I've just set up with the caring agency that they will send in someone once a week to do the shopping, as well. I will draw money out of dad's account and give them enough to get through a month. They send me receipts etc and spreadsheet.

This is the sort of stuff the AA is designed to cover., as I understand it. not sure how you could deal with throwing up in the night, though. Perhaps others have more info.
Thanks for replies.

The carers do not have the time to do the amount of laundry she generates - she is often urine incontinent between visits, even though she has maxi pads, so they have to change her underwear and sometimes clothing, plus this week there have been 2 lots of full bedding in 2 days, due to her being sick overnight as well. They offered to put in machine and next one to take out and hang up, but washing could be in machine over 24 hours as she has uses up her half hour visits just getting her toiletted, changed and fed. I buy washing powder and fab soft on her shopping so covers that cost, but just easier for me to nip in, pick up and wash/dry at home to return on my next visit. I work part time too, so have to fit around my hours and its just easier to do it this way, even though there is a cost implication.

She does pay for her cleaner herself, and her home hairdresser as she can no longer get to salon, but seems she doesn't realise or understand the costs incurred by the things I do. I doubt she really appreciates how much work goes on behind the scenes, when you are dealing with totally overwhelmed officialdom and red tape which needs everything completed in triplicate and sent umpteen times as it gets lost or fails to be passed on to correct department so needs to be repeated. I seem to be constantly moaning at her about how much paperwork and chasing calls I have to make, but she just replies "At least its getting sorted out now" ... yes at my expense ...

Got to go there this morning, my day off and have to meet a supplier of rise and recliner chairs at her place to assess her for a new one ... never any time for myself either, which is also getting me down, but I cannot put a financial cost on that :unsure: Already spent half hour on the phone trying to follow up her daycare placement this morning ...
Why not get her to pay for someone to come in form the care agency to deal with the washing? If it's beginning to get to you now, it will begin to reduce your ability to cope with all the demands... much better to get rid of one she can easily pay to have done and concentrate your time on the stuff she can't easily pay to have done by someone else.

If you prefer to carry on doing it, then why not sit down and discuss with her that she pays you the same rate as she would pay for someone from the agency? Surely your time can't be worth less than that?
When my Mum was alive and in receipt of Attendance Allowance we agreed that she would pay towards the running cost of my car as it was mainly used for her benefit in one way or another ! To do this she would 'pay' me the total Attendance Allowance on alternate months (one month it stayed in her bank account and the next month she'd give it to me).
Hi lesley-Anne
I do agree that its nice and there is a good argument for a caree paying for or towards costs, but reading between the lines of your post I do wonder if money would actually solve your problems? It sounds like there's as much resentment of the time it takes and that it all falls to you. Is there no one else to spread the load to, family-wise? Paying extra to carers/cleaners is just part of it, I think you need to look wider afield and further ahead as, sadly, this isn't going to be short term, or go away.
Even though she might not need or wantresidential care now, it might be an idea to start looking around at options for the future. Things can change quite suddenly.

Kr
MrsA
I doubt she really appreciates how much work goes on behind the scenes, when you are dealing with totally overwhelmed officialdom and red tape which needs everything completed in triplicate and sent umpteen times as it gets lost or fails to be passed on to correct department so needs to be repeated. I seem to be constantly moaning at her about how much paperwork and chasing calls I have to make, but she just replies "At least its getting sorted out now" ... yes at my expense ...

Got to go there this morning, my day off and have to meet a supplier of rise and recliner chairs at her place to assess her for a new one ... never any time for myself either, which is also getting me down, but I cannot put a financial cost on that :unsure: Already spent half hour on the phone trying to follow up her daycare placement this morning ...
Oh yes, I get this. I work four days a week and frequently my so called day off is spent on sorting out things to do with S. Professionals in particular don't realise how precious this time off is.
This is your MIL, perhaps it's time your OH did some of the running around and chasing?

Melly1
Excuse me for taking this off-topic, but just come back from assessment for her rise/recliner chair ... she is now saying its too expensive, as she can get a similar one out a magazine she saw for less than £400. I did warn her before guys turned up, that this chair is being made to measure to suit her, with memory foam cushion built in to promote her skin integrity. They even brought a similar chair for her to try and it was so much easier to get her on her feet without her having to reach and pull herself up on her Sara Stedy mobility aid. Carer happened to be there for lunchtime visit and she tried it to prove to mum how much easier it will be for them to transfer her.

Its 2 year guarantee and suppliers are less than 20 miles away, so can be there same day usually if any issues. They estimate it to be around £1200, which I don't think is expensive, but she cannot get her head around why it cost that much when there are cheaper ones in her magazine. Tried to explain that once that one of the cheaper ones is delivered, she would not have any guarantee back up and if it didn't suit her she would need to pay to sent it back. She started to get funny about ME wanting to spend her money ... only last week she was annoyed to find her savings had gone over the £10K limit for council tax rebate (hence my spending time on phone to sort it for her) and now she doesn't want to spend enough to get her under the limit again ... plus she has had around £700 AA since November which she also doesn't seem keen to spend ... I can only do so much to help make her understand ... just phoned hubby at work and told him he needs to ring and sort it with her so I can place the order today.

MrsAverage, just seen your reply ... yes there is a certain amount of resentment, but making right the money I am paying to achieve her needs would go a long way to help ease this. There are no other family here ... other son in Oz came home for Christmas and everything was wonderful. He hasn't the first idea what goes into looking after her, and she was on cloud 9, not a moan, groan or bad word all the while he was here. In fact, I was down there cleaning vomit off her at midnight last week, and she actually said "Its good this happened now, not last week, as wouldn't want .... to see me like this" ... could take as a compliment that she trusts me enough to deal with these embarrassing situations, or more likely, she doesn't want him to know how poorly she really is, or give him anything to worry about ... meanwhile me and hubby are happy to do whatever we can to help her, but just need our costs covered so we are not supporting her financially as well.
Time for you to start respecting yourself more!
The only power MIL has over you is the power YOU LET HER HAVE.
So give up caring for her for a week, ideally going away on a little holiday. Then she can either move into residential care, or pay her carers for more hours. Those arranged by the average agency charge around £15 an hour around me. So how many hours do you do a week - in the next week, count them up.
Either she pays you, or Social Services pay you (via Direct Payments), or she pays someone else.
Does she own her house? If so, if she moves into permanent residential care, it will have to be sold and used for payments, around £1,000 per week.
Does she have over £23,000 in savings - the limit at which the LA will say she is "self funding".
Find out what counselling is available for you locally, aimed at managing MIL's needs.
REFUSE to deal with laundry. The carers must do that. (If the LA is arranging the carers, then it's time for an updated Needs Assessment). There MUST be a high capacity tumble dryer for laundry. I've just bought an A rated Eco dryer, very cheap to run.