to feel angry or should I just shut up and put up?(39 Posts)
This is a long story....
My Mum has been ill for a couple of years with 'brain stuff'. She is mainly housebound and I am her main carer (no brothers or sisters). My Auntie (her sister) also helps her out with stuff. My Dad is not around anymore. I work full time, so does my husband and we have a house to run and a child- like most people. I do a lot for my mum- her tablets every week, a lot of running her about to appointments, taking time out of work etc. Normal carer stuff.
I managed recently to get her attendance allowance after making 2 applications- we eventually got them to send for a medical report and it was finally awarded. I spent a whole weekend filling the forms in and took annual leave to meet with a carer group to get advice.
She was obviously really relieved and I told her that it would be a good idea to get people in to help round the house. She has been having a cleaner in once a fortnight anyway (I pay half towards this every month to help her out and have paid this money since May 2012) and I said it might be an idea to get her in every week to maybe do some ironing and washing as well as cleaning. I also suggested a gardener because currently my husband does her gardening and it would be easier if he didnt have to. So I felt using her attendance allowance would allow her to get a proper gardener to do it. But she said she did not want strangers in to do stuff. She wanted us to do it and would like to give us money to do these jobs for her. I disagreed and said no but she insisted that we had done a lot over the past year or so and it was time we had a bit of money towards it (we are talking £20 a week). We still said no and she said that if we didnt want it, we should spend it on DD because we do a lot for her and she also wanted me to have the money back I'd paid for the cleaner over time. She also said she was doing the same for my Auntie to cover the washing being done etc. I can't lie- the money would be a help. It would cover petrol for when I take her to appointments and I also find I spend a lot of money picking up stuff for her with my weekly shop and I dont get the money back for this. So deep down, I felt a bit of relief. Especially as I just found out this week at work that I'm 'in the red' for the amount of emergency short notice leave I have taken this year- when I looked it was all because of time spent caring for mum. Its not that I mind BUT its hard not to feel shortchanged at times!!
However, today she has withdrawn her offer. My Auntie has said that she should keep the money and save it up for a new path in the back garden (she doesnt go outside because she falls a lot). I was a bit shocked at first but now after thinking about it, I feel cross.
If the money is being saved up, my husband will have to continue to cut her lawns, I will have to carry on paying the cleaner- we will be no better off for her having been awarded the AA. And to rub salt in the wound, my Auntie was at my mums today and my mum gave her £20 for my Uncle to put a curtain up for her. I thought I was going to fall off my chair.
TBH, I'm exhausted. I'm exhausted from working full time and feeling like I have another job in the evenings. My Mum is moody, shes difficult, she calls me names and berates me if I dont phone her by 9am each morning. And the fact that we keep being left out of pocket by caring for her. We cant afford it!!
My husband has said we should just not pay for the cleaner anymore and we should take a 'step back'. The guilt would be terrible but he says my Auntie needs to step up to the plate. She doesnt work.
Am I being bitter? I think I feel a bit hurt as well that I spent so much time filling the bloody forms in, I told her I wanted nothing from it but she insisted, only for someone else to tell her what to do with it!! I'd have preferred to be offered nothing than to be offered and have it taken away. Am I being harsh by expecting to not be out of pocket each month by 'picking up a bottle of squash' 'grabbing some vitamins on my way home'? As a carer, should I just put up with the fact that I will be second best to the person I am caring for and their needs should come first?
How do I approach this so that my sanity if saved, I don't feel bitter but also my mum isnt hurt?
And please be kind!!! x
Im so angry that she does all this on her sisters say so. Yet when I suggested she use the money for a gardener, it was the most stupid idea ever!! Oh well... Some really good advice here. Who wants a great path when chances are, ill be round there picking her up off it??!!
I really do know that money is not mine but I also don't believe it is hers to save for a path TBH. It is money she should be using for her care.
she should, but its her choice. when you step back, she'll probably re-think the path.
I would tell her that you can't do this in the same way any more. Your role at work has been compromised due to the time you've had to take, so you really have to pull your socks up there, and you and dh will have to take a back seat in her day to day care now. Say you've had a warning, even if you haven't.
As you say, she now has attendance allowance, so she can have others in to help.
That is totally it. The offer being withdrawn was like a slap in the face. Its like saying thanks for all you do- then, oh im not grateful any more sorry.
I need to try and muster the courage to ask for the £8 for the vitamins tomorrow and go from there. She will be shocked im asking for the money but I can't maintain this. Her sister already thinks im evil so no love lost there.
I see it... it's not the money is it but the feeling that you are not appreciated or recognised for what you do. Your mums offer of the attendance allowance was like a recognition of the time and effort you are making... which she then removed to make a path!
Even if you got the money you wouldnt feel valued and you seem to recognise that... I know where you are... my son has ASD and I have given up work to try and make his final chance at mainstream school work and most of the time I feel shattered and downtrodden. My son, being a child doesnt recognise what I do but being a single parent - no bugger else does either!! Its hard work!
Part of the reason I gave up work was the hot water I was in constantly at work as I was required to be elsewhere.
Drawing boundaries didnt work as I was constantly told that I didnt have to attend but it would be better for my son if I did ... services make no effort to fit round you.
You have had some really good advice about your mum using the AA for what it is supposed to be for... if she pays for the support she needs instead of relying on you, yr husband and aunt & uncle then your relationship will probably improve...
I agree with the others in stepping back a little bit
RE the medicine - boots and superdrug will offer a blister pack of meds, all set out for each day of the week- as she is housebound most chemists will set up repeat prescriptions to be home delivered, when its set up its all automatic and will come every week without you needing to do anything.
I would just get a cleaner/ gardener to come - thats what the attendance allowance is for to pay for extra help. Most care agencies and Age UK can supply you with CRB checked people.
Just be honest with her. Mum i can do X,Y,Z but i dont have time to do X,Y,Z. Theres no shame in that, maybe a little guilt at first, but it will pass
Honestly i wouldnt take money on a regular basis, these things can easily be seen as elder abuse
I think you are in a bind. the cleaner seems like your only reasonable leverage.
you could just say you cannot pay for it anymore.
At least that way it frees up a bit of money for other things. if she complains tough. cleaner or path its her money her choice. she cannot decide that she can afford the path while you.pay for other things unless that is fine by you.
Also sounds like aunty has suggested this possibly to get at you.
Sounds like whatever you do she will make you feel guilty and unappreciated so you should do what you would think you could reasonably ask your own child to do for you and not what she thinks you ought to.
I think the most hurtful thing is the fact that I do all the groundwork- the form filling, time out of work. THEN my aunt and my mum make rash decisions regarding what will happen with the money.
I dont want the money, never did want the money, it was her that wanted me to have the money. And then, she is going to save it!!!
I think its wrong to save it- its not meant for that. And I will perhaps make it clear as well that when it comes to reapplying I will not be involved in applying for a benefit that is being used inappropriately.
You feel like you're having the piss taken because you ARE having the piss taken.
The arsehole comment shows exactly what her expectations are - she is acting like the family matriarch who expects to be able to control everyone around her and have all her needs met without any thought of anyone else's needs.
Your Aunt accepting 20 pounds for a small job is not very nice. I would be slightly suspicious of her motives tbh.
Don't ask for the money. Insist that it is spent on cleaner/gardener etc. You will benefit more from having your time freed up than from the small amount of money she was offering.
kungfupannda very well explained. It isnt sustainable. And I feel like I'm having the piss taken. My Auntie seems to be sitting pretty- I'm on a review at work for all the time out I'm having, I'm out of pocket and on top of it all, she calls me an ar*ehole.
God, this thread has been cathartic. I'm seeing sense.
Could you just say you can't pay for the cleaner any more because you can't afford it, and that DH can't do the gardening because he is tired and it is too much for him?
If she says "What am I going to do?" suggest she uses her carers allowance.
Then: "Whoops, sorry Mum, someone's at the front door, talk to you tomorrow, byeee."
I also think you should gently make the point that it is unfair for your mother to unilaterally decide that her care has to be done by you and not other people. It's not as though you are asking her to have very personal care done by strangers - this is fairly basic stuff which can be done by someone else.
At the moment she is getting everything her own way for very minimal outlay. While I am pretty judgy about families who won't lift a finger for their aging or infirm parents and grandparents, I think those older family members have to remember that other people have commitments of their own, and not try to dictate every aspect of the help they are given.
There was another long-running thread about a grandmother who didn't want outside help and the grandchildren were run ragged trying to do everything.
I really don't think the offer is still there now. When she first offered, I said I was happy to do it for free. But it was her that insisted so as far as I was concerned, she was going to give me this money for us to do all her 'jobs'.
The offer has been withdrawn so that she can save for a path.
Even if I said I wanted it, I dont think she is offering it anymore.
I think you need to be very clear and straight with her. This money was intended to pay for some of the tasks that currently fall entirely on you and your husband. She wanted to give it to you instead of paying other people to do these things - you were reluctant but came round to the idea because at the moment you are doing all the jobs AND being short of cash as a result.
With the current suggestion, you get to continue doing all the jobs and to continue being short of cash. Applying for this money has not reduced either your time commitment or your financial burden. This is not acceptable or sustainable.
I think you need to hammer home the point that this money is for professional help to take the burden off the family. You need some help with it and you therefore need the money to be spent on its intended purpose.
You may need to get hardline about it and say "Well the money is there for a cleaner so I won't be paying for that anymore. I can't afford it and it's not fair to ask me to pay for it when I've gone to the effort of arranging for you to have this allowance."
I'd be straight and say to your mum that you've changed your mind about the offer of money.
You could use it to pay someone to do your cleaning and ironing thus freeing you up to do your mums if she won't have strangers in the house.
I really do know that money is not mine but I also don't believe it is hers to save for a path TBH. It is money she should be using for her care.
your mum's money is not yours.
your time is not hers.
work out what you willing to do and tell her straight. err on the generous-to-yourself side, as you need a bit of space in case of emergencies.
How should I broach this though? I dont know what I should do- if I dont phone her in the morning I get the cold shoulder!!
This is where I am really struggling- how do you take a step back?
She has just had a free trial of social service care as well (which I organised) and she didnt like it.
lovelyladuree you have hit the nail on the head. She does think the sun shines out of their arses.
I recently arranged for my friend to cut her toenails for her and she told my friend I was an ar*ehole because I paid for somebody to go to the house and give her a blood test that the dr had ordered. I was an ar*ehole because I had organised this to save her leaving the house in the cold and I paid £9 for the liberty. My friend was shocked and really upset for me that she had called me that but I am an ar*ehole aren't I? I'm reading this thread back and I really am.
I am shocked that your uncle took £20 off her for putting up a curtain pole. I bet she thinks the sun shines out of their arses. YANBU. The situation sucks. I don't know how the system works but can you swap the care allowance for a social services carer to visit her instead? Then, the other relatives can't decide for her where the money goes, and you get a bit of a break. Good luck.
Brain stuff= aneurysm, AVM, radiotherapy and necrosis. She has full faculties in a sense but struggles with memory and speech.
I cannot get carers allowance because I work full time.
I may speak to her GP this week and arrange a dosage system to be set up- at present, I collect all tablets and then I put them in trays for her. I think DH is right, a step back may be called for.
Her sister is a sticky beak- good phrase!!
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