But you’re my carer!

[Dormit]

How do you respond to this? I’m just back off holiday and my mum has asked me to go up (a 30 min walk uphill-I don’t drive) to make her a cup of tea because she’s upset and a bit shakey. When I said no, I got the but you’re my carer retort as though that means drop everything and do what she wants. She’s quite capable of making a cup of tea and food. Hospital has just discharged her and deemed her medically fit and safe and she’s just been on holiday. I’ve explained I’m cooking dinner for my children and can’t get up for a couple of hours. I’ve not had lunch yet today due to being on the phone with her and the hospital and messaging family who have only given me grief. I’ve just come back off a week holiday and feel like I wasn’t supposed to have any time off. Family are saying I shouldn’t take any money for what I do for her (£2 an hour). I’m her official carer and barely get time to eat lunch on days I am there (4-6 days depending) and yet family (who do fuck all) are saying it’s only what any daughter would do. I put in around 40 hours a week and am on call constantly. I do her shopping, gardening, cleaning, cooking, banking and all admin, hospital and GP appointments, transport booking, holiday booking, gift and card buying, DIY, liaising with all professionals and lots and lots of emotional support. I was exhausted and needed that week away and have come back to being told by family that I abandoned her. I organised carers to be there in the days that I wasn’t and she told me she wouldn’t need carers today so I cancelled them. I’m so pissed off.

From what you've posted, you should qualify for PIP (even though you work and care for her) and your adult child may qualify for PIP (though perhaps with drug problems it won't be a good idea) and your DCs if neurodiverse and needing extra care would qualify for DLA.
I think it sounds like your priorities are:

1. Sort out her phone because then you can work independently from her re. blocking etc. I have no idea though how easy it will be to un-link an iPhone from an Apple ID, because I've just got a new iPad and couldn't remember my password but because I had an Apple ID they wouldn't let me just start from scratch. But even if you have to set her up with her own email address that she doesn't ever access.
2. Tell her which days you are available and block her number and those of your siblings on your non-available days. Put a calendar in her house showing days you are on duty and days you are not. Let your siblings know and order food (even if she says she doesn't like it, if she can't get through to you to complain she can eat it, or not).
3. Do your gardening which you like doing on the days you are there anyway (stops her bending your ear about things you don't want to do).
4. If there are any hospital appointments etc. on a sibling day tell them how to arrange hospital transport if they can't take her (scrap that, just tell them Hospital Transport Is Available and if they come over all helpless tell them Google it).

I think the OP is in part time work, but I agree about not claiming her Attendance allowance.
If the siblings want to arrange for paid carers on their days, that can come out of the AA.

I would tell family to back off unless they are prepared to organise a rota schedule of care for her so it is shared across different family membersz then they do not get to dictate or tell you how and when you should be caring for her. Maybe your mum needs a proper carer too as you have children and cant be at her beck and call.

I can’t remember how many hours you said you were doing per week, but if you are only getting £2 per hour, then if you were to even just do those hours in a NMW job, you would be getting an extra £10.21 an hour. So if you are doing 40 hours per week for your mum that is approx £408 per week in additional wages (pre-tax) that you are missing out on. So for a month, that is £1632 (pre-tax) additional wages that you are missing out on. Or look at it another way, that you are ‘giving’ your Mum. Can you afford to ‘give’ (subsidise) your Mum £1632 a month??? If you had that extra £1632 per month, what would you do with it? I imagine a good proportion would be building up savings / pension pot for your future.

Getting a social care assessment may make your mum actually face what things she can actually do herself - as she will have to justify it to an independent person - the assessor. She will never probably admit these things if it is just to you (as she wants to have your attention / help, as she is lonely). They will essentially come up with a recommendation about what care your Mum needs. Maybe it will be a care visit once a day, to provide support with a hot meal at lunch time (and maybe making a sandwich tea that your Mum can have at tea time)? Maybe also making a hot drink in a sipper flask that your Mum can drink throughout the afternoon?

It may work out cheaper for your Mum to then also have a cleaner (they can come once or twice a week, whatever your Mum prefers), and a gardener, rather than relying on carers to do household tasks (if she would rather have the carers focus on meals for her).

There are also charities that can allot a certain number of hours for a person needing care, and someone can come over for a couple of hours to keep them company, or take them out.

It will actually be better for her as well, in the long run, to outsource the ‘daily grind’ parts of her care to a paid carer / agency, whether that is paid for or subsidised by the council, or she pays for it herself. Ultimately, it will avoid family members (especially you) having ‘care fatigue’ and withdrawing from her substantially / or having a poor relationship with her, and it would mean that instead of using your precious hours to do the housework / gardening / cooking etc then you could devote the 4 hours that you would have spend on the garden actually taking her out to a garden centre for lunch, of to the local stately home / gardens, or taking her to a local social group / drop-in sessions, or even just sitting with her chatting and having a cup of tea / doing a jigsaw or whatever.

If she can face up to keeping whatever independence she can get - and doing / planning things strategically to get more efficient at managing daily life, then her relationships with family will improve and she will be less lonely.

And your situation will massively improve. You need to consider what time you are willing to commit to her on a weekly or monthly basis as a daughter (not a carer), whether it is more regular ‘popping round’ for an hour to visit on a few days a week, or whether you have a particular afternoon that you go over, and plan to do something nice with her. As she has mobility issues (with a walking frame), it may mean that she needs to get a folding wheelchair for trips out with you. But there are plenty of taxis available that can accommodate a folding wheelchair in the boot.

Sorry for such a long post - but changing things now (and being firm that you are no longer able to subsidise her care costs by £1600 per month), will have a massive improvement on both of your lives. She might say that she is not willing or able to pay for a high level of care - but she is essentially expecting you to pay for it (in the opportunity cost of you having to work for £2 an hour, rather than £12.21 an hour).

My parent has 2 carers, 4 times a day, and the total cost of this is around £2400 a month, but she only pays a proportion of that (as it has all been arranged via the adult social care team). It was a big transition for my mum (and one that she was very unwilling to have, at the start), but in some ways she absolutely loves it now, as she has started to see the carers as friends, and she really gets on well with them, and she really enjoys the social aspect of it.

Also - Wiltshire Farm foods, they have various meals like roast dinners that come with veg (in the different compartments in the ready meal container), and they are great. They also have things that are more like standard ready meals (like pasta, eg macaroni cheese) - and it may be cheaper to get the standard ready meal type meal from somewhere else (eg Iceland), and just use Wiltshire Farm foods for the more complicated meals (that come with veg etc). My mum has them - you can order them over the phone, and the person that delivers them can put them straight in the freezer for you.

I haven't read through the responses, sorry but I may duplicate what someone else has said but..... I am really sorry you are having this burden put onto you. I work in Social Care and see this happening every day.

All I can suggest is that you arrange for a Social Care assessment to be done, you can request this online usually. Your mum could be entitled to a care package at home (hopefully AM, lunch and PM at least) which would give you some respite. She may only need to contribute a little to this if she is under threshold too. Unsure what this is in your area.

Your mum is able to do some things for herself still and should be encouraged to do so, it will ensure she stays independent for longer. You dropping everything and running will only decrease her ability to care for herself, so you will be doing her a favour in the long run. She is asking you to do it as you are the easiest to manipulate, so you can only change the way in which you react - you cannot change her or your family members unfortunately.

Start to say No, firmly and calmly. The more you do it, the more easy it becomes. Try it when you are at home on your own, practice it through the day, tell people in your home that you are practicing and let them join in and support you! Honestly, you will be at high risk of carer breakdown/burnout if you don't, and then who will step up to help your mum?

Take care, sending a virtual hug. Its OK to say no, especially if there is an arrangement with an agency for three visits a day set up which will need to still be paid for if she turns them away.

This is a very good idea.

SS are going to call her today. I’ve told them she’s become increasingly needy and that it’s killing me. I’m her PA, nurse, carer, confidante, friend, cleaner, gardener, cook, shopper, general dogsbody and I can’t do it at this level. She wants someone to make her breakfast but she’s quite capable of doing that. She’s managed this morning so can do it. She’s made a hot drink and got dressed so I don’t think she will qualify for ss input in terms of a carer.

How familiar! The siblings will come up with all sorts of worthy reasons why they cannot do! Been there and got the t-shirt!

My sister has told mum in no uncertain terms they she can’t go anything to help. She’s lucky to get a weekly visit. Sometimes it’s 3 weekly or once a fortnight or whenever she can fit her in. My brothers live too far away to be of much practical use and visit once a year but phone weekly in the case of the younger one, and every other day in the case of the older one. My sister used to clean and help her MIL and she was her priority until she died. The MIL had 3 DILs and sons so why my sister did it I’ve no idea.
DD gets her GCSE results this week and that’s my priority for Thursday.

This is one of the few situations where I'd have no guilt at all telling a white lie. I'd say that you have a medical issue that is getting worse and due to this you have to step down as her carer.

The medical issue is your stress/anxiety/potential depression if you continue to be treated like the family's own Cinderella.

You do not have to explain it to anyone or justify the decision. But you do need to make the decision to stop and not then go back on it. Say you will visit once a week as a daughter but can't promise more than that, and that practical and strenuous regular care needs to be shared among other family members from now on or sourced from outside the family.

Your problem is you've chosen to make it your 'job' by accepting money for it. Only you can decide if it's worth it. Accepting money has made it very easy for your siblings to absolve themselves of any responsibility.

It's not right, obviously, but nothing will change if you don't change things.

I'd stop doing any of it if I were you. Tell your mum to advertise the post.

Except that it is illegal to employ anyone at less than NMW which is £12.21h. So OP should be getting £488.40pw from family for her work, not £80. And she should have 5 weeks holiday a year. Paid.

Im not really employed by her, she just gives me some of her AA because my brother told her it wasn’t fair to not pay me. She was only giving me £50 a week but when she realised how much the carers cost then it increased especially as I was doing so much in the garden.
I get her shopping delivered mainly but all items that she needs from the local shops I just pick up. Prescriptions are a nightmare because she doesn’t tell me she’s running out until she’s got 3 left of something and I don’t always remember to check her cupboard. Really it’s something that she should be doing herself, I shouldn’t have to be checking. We have tried prescription delivery but it’s not always worked out. I’m going to look into alternatives. A dosette box might be a good idea.
She’s had a few gardeners and not been happy with them because they don’t get as much done as me. I happily do a border until it’s perfect which is thanks to being ND with the hyper focus perfectionist traits. It’s taken months to get the garden to a really nice space for her. Gardeners are around £25 an hour and get so little done. Not tried a cleaner.

Things need to change and I’m doing what I can to make those changes to improve things for her as well as me.
Maybe someone going in to do her breakfast might allow more independence later in the day. My Dd is doing her a sandwich for later and is there now spilling the tea over a cup of tea and a cinnamon swirl that I took up.
I’ve explained that she needs to do more otherwise she’ll get more dependent and less able to do things for herself. She understands but it’s hard for her to implement it.

I only call it my job because my teenagers and their abusive dad plus those like my sister and auntie don’t think I do any work. Everything I do for my mum doesn’t count as work because it’s not a proper job. They think I should get a proper job and help my mum. I think I’m supposed to do that instead of sleep at night or when I’m
not physically with my mum or doing things for her. So between the hours of midnight to 6am plus about 1 full day a week. There’s not one day where I’m not doing something for my mum, even if it’s just an email or phone call or picking up something from the shops.

I’ve said that for the rest of the holidays I’ll do 3 days a week. That was I’ve still got time to rest and spend time with my children.

I’ve had a carers assessment and do claim the carers element of UC. We were told the AA is to pay for any care needs she has. It would pay for 13 hours a month of care.

Nothing is going to change for you until you step back and admit to yourself that it is impossible to be everything to everyone. Your boundaries are so low that even as people on this thread are making suggestions you are batting them away without thought. It's unlikely your mother needs the level of care she is demanding at the moment as she seems to have managed just fine without you for the week. Why is that?

Who cares what other people think or don't think you should be doing. The whole crew are taking you for a mug at this stage. Your other siblings are right to step back, you should follow their lead or this will kill you. Some Older folks (some!) get more selfish as they age, your mother doesn't see anything wrong with making you walk for 30 minutes to make tea because her wants trump everything else. Do they? Did your mother slave away for an elderly relative in her day so is this where the expectation comes from? Stop trying to answer all the what ifs and let some of them happen.

I don’t know the answer Dormit. It seems every family is the same with one or two doing the heavy lifting, and many more visiting occasionally and criticising. You’ve had many good suggestions, many on a theme, but I know how hard (impossible) it feels to just stop. Try to look after yourself. Your DC are priority #1, you are actually priority #2, everything else in the world is priority #3.

Dormit
It sounds like you are resenting being asked to do things. Feeling overwhelmed and unappreciated is the worst. I understand x

Where I live SS refuse to assess if elderly person is deemed capable after leaving hospital. You can try and find private carers and pay. They are not interested if there’s a relative and older person can get meals. If the relative stops caring, then they might assess but here it’s down to individuals to arrange and pay for their care.

Have I batted away suggestions without thought? I’ve considered each one and weighed it against what has been tried already or suggested to my mum. I have taken a step back today. Could have gone back up this afternoon/this evening but haven’t. I could have gone last night to do dinner but didn’t. I’ve contacted social services and they have spoken to mum and are going to do an assessment. She’s got a private appointment with her consultant this week to discuss options and pain relief. I’m reducing my days and have told her she’s got to start thinking for herself. Tomorrow I will go and clean, change the bed, laundry, water the garden and do whatever else needs doing but limit it to a few hours. She is quite capable of getting the telephone number for the carers and arranging care if she wants more than I willing to give. 35 hours a week is 5 hours a day.

I’ve told SS it’s killing me and I can’t keep going at this pace so I’m hoping they might at least suggest something.
With mum’s condition there’s a fine line between helping her and helping her too much so that she loses the ability to be independent. It’s a case of making things easier for her to do for herself.
I am resentful at the moment. I had a lovely week away and was thrown into a mess when I got back. Mum has said she will have to deal with the consequences of her own poor decisions this last week and I’ve agreed that yes, she will, whether she likes it or not. This mess is of her own making and it’s not my responsibility to fix it.

Sad truth is SS will do nothing while you’re hovering. We’ve had a nightmare getting carers because we’re next door, and in SS eyes that means we’re available 24/7. You need to let them all down and turn your phone off, better still block them all for a while (forever). The system is not in our favour. I don’t know whose favour it is in, but it’s not ours.

I think you should get a job outside the home - do it for you. I think it will give you a good sense of fulfilment - I bet you don’t get any of that from your mum (who is probably massively taking you for granted). Then no-one can expect you to do everything for your mum. Then you can return to a role of daughter, who visits and does the odd errand, but mainly just spends time visiting as a guest (rather than a carer). Sometimes you have to be really firm. If she does not qualify for subsidised care visits, the adult social care team can still help arrange care visits, that the person pays for in its entirety. Even if she has just one care visit a day, that would help, and would get things established for when care needs (and care visits) increase. Or would she consider going in to supported accommodation / care home? If no-one else will step up, and she will not take responsibility for increasing her independence then she will have to consider moving… she may respond to that sort of either/or discussion…