Caring for multiple people, burning out and feeling guilty

[exhaustedandoverit]

NC for this

I'm caring for 2 adults and my 2 young kids and I’m so so tired.

both my mum and my OH have health issues, one physical and one neurological. Mum is immobile and OH spends the majority of his time in the bedroom, unable to spend much if any time helping me. We all live with my mum as she’d have gone to a care home otherwise.

Neither of them can attend an appointment alone so I’ve been using my holiday hours to take them, sometimes full days, which are now running out. I cook for us all and clean the house as neither of the adults can do this. Plus all the usual organisation that a house needs to tick over but I’m doing it so badly and feel like I’m always on the back foot.

I also work and have to do the school pick ups, obviously this time of year is hard with nativities and trips etc so I have to make sure I’m available. I have to drive them to school now we’ve moved. I’m also the sole earner apart from some UC and my mums pension. He's been refused PIP.

I'm feeling really guilty as I’m just done. I dream of a little house with just me and the kids where they get to play without my mums disapproving looks and only having us to worry about. I don’t want any harm to come to OH or mum, I just want to escape this life that I’m not actually living and wave a magic wand to make everyone well again. My kids miss our old house too and I miss spending decent time with them without someone else needing my help which sounds awful I know.

OHs illness has caused me to build up debt that I just can’t shift, I’m now finding out about more debt that he’s caused but can’t remember/thought he’d sorted. I can’t just leave him but he’s making my life so hard. He also has horrible moods which make me not want to be around him.

How does anyone deal with this without building massive resentment or burning out entirely? The kicker that’s knocked me tonight is OH is feeling really ill and wants to go to the hospital but not til tomorrow. Selfishly on my part I have so much to do tomorrow, it’s a big day at work and the kids have stuff on after school that they really need to do. I just want to take him in now so I can prep for tomorrow but he won’t go. I’m scared that I’ll be in trouble at work but he really needs to be seen, I’ve had so many emergency holidays between everyone else’s health issues. I honestly can’t do this anymore, every time I feel at rock bottom it gets worse.

sorry if this is jumbled and overly long. I think I just need to get it out.

God.

Who looks after you? 💐

Nobody really. The GP referred me for tests as I said I thought sometimes I might be having a heart attack, she pointed out that it’s more likely stress but I push it down and pretend it’s all fine. I'm not really sure how not to do that and still keep the peace tbh!
We have ESA at work which is pretty good but I’m never alone! It’s a nightmare trying to have a private conversation without anyone overhearing me.

I didn’t want to read & not comment because I really feel for you. That’s so tough for you.

I wonder if your GP could signpost you to some support for carers in the new year? It sounds so hard for you.

I wonder whether there is a way of getting help to care for your dm?

also you described yourself as selfish and you absolutely are not selfish. This time of year is so tough when DC’s are young - lovely with all the concerts & parties & activities but such a lot to do as a mum.

sending you my best wishes your dc’s are very lucky to have such a lovely mum. I wonder what you might stop doing for the adults longer term to make life easier (possibly even enjoyable?)

not sure how to suggest you deal with OH I’m sure some other wise mumsnetter will have a good idea x

I think your mum needs to go into a care home. You might be able to get some support for your partner.

it’s not selfish, you deserve happiness in life.

Im so sorry you are having to go through this. Its sounds so tough and honestly you sound strong. I dont know how youre managing all of that.

I think firstly, you can't go with your OH tomorrow to the hospital. If he needs seen he will have to.go this evening. I understand that he is ill but that's not fair on you at all, the refusing to go tonight. Could he get in a taxi alone tomorrow or could you ask someone to go with him? I feel like if he wants your help he needs to compromise on this.

I think you should talk to the hospital or your gp about maybe some carers to help and explain to him the situation.

Look and see if your mum would be entitled to claim attendance allowance

Re work and your debt, id try hard not to get in trouble with work. Talk to work first about the situation and then get in touch with all creditors and explain.

Most importantly take care of yourself

What would OH if you said "I won't be around to take you to hospital tomorrow, so if you want me to take you, we need to go tonight, otherwise you'll have to make your own way there."?

I totally understand that that may not be a fair option if it's something he couldn't safely do by himself, but just interested.

Thank you all for being so nice. I think I’m just beating myself up for not being able to be everything to them all so it’s good to know that it’s probably harder work than I think it should be!

I’ve talked to OH, he knows I need to be in the office tomorrow am at least so he will call the GP first thing and take it from there so that’s a relief. Even if I show my face for a couple of hours and have to leave to meet him at a&e it’s better than just calling in. Happily my boss knows what’s going on at home.

Mum won’t go into a home, she’s getting on in age but is there mentally although her world is quite small now since she can’t be independent any more. Luckily her house is big enough for us all, just quite cluttered with 2 houses blended. I wouldn’t pass referencing checks for a private let at the moment so it wouldn’t benefit any of us for her to have to sell up as we’d have nowhere to go. Prices have shot up since we left our old house which was just about affordable with only me working.

I’ll get back in with the GP once the scans etc are done to see if there’s any support out there. She suggested a 15 minute walk alone every day but this weather hasn’t made that easy. What I’d love is to be able to go to the gym alone a couple of times a week, maybe I’ll try and find some spare £ for that in the new year and let them cope at home for a couple of hours. I’m peri and I think probably ADHD which isn’t helping my mental state too much! I’ve been fighting the GP suggestion of the Mirena for a while but maybe I need to give in on that and see if my brain would benefit. I have adeno also which gives me hell so admittedly I could use the pain relief if it worked.

There are various charities ( often local ones) who provide support for carers, maybe by looking after the person needing care so that the carer can get out.
I'd look to see if you have a local carers group as they will be able to advise about what is available.

Also talk to Citizens advice for information about attendance allowance. If she can't look after herself your mum should be eligible for the lower rate at least. If she needs someone with her overnight she might be able to get higher rate.

You can try appealing your OH PIP and work with a local charity of his Neurological disorder to try and fill the forms out best to ensure he gets it. There'd definitely an art to it but if he can't work then I do believe you could get something. Could he not be in charge of ordering groceries to be click and collected by you?

Your mum could get attendance allowance
Perhaps you could see about carer visits into your mum twice a day? Take a bit of burden off you. Perhaps she could be assessed for funded nursing care if needs be.

Go to CAB. Ask for help with the PIP process. Attendance allowance for your mum if she is over 65. Care needs assessment for your mum and OH. Carers assessment for you. You can’t do it all alone. Find out what help there is and out source what you can. For the set up to be successful others needs to help you care for the house hold. Debt advice from CAP or step change. One thing at a time.

Well to be blunt op, if you cant take care of yourself, what happens when you crash and burn, or indeed have a heart attack or a stroke through stress.

What is DHs neurological condition, other posters may have some advice/signposts for you.

I echo others saying get assessed for carers. My boss had them come in for an hour a day to wash/shower her, apply lotions etc. Ensuring she was taking the right meds on right day (some were spaced). 9/10 they spent most of the time having tea and chatting with her tbh. But needs must, to lift the load. Does DH help with her during the day?

I'm in a similar position OP and have been at it for years. It is hard but you have to come to terms with the idea that there's only one of you and however many of them. You can't do it all. One of the first rules of caring is not to do for others what they can do for themselves. You can still approach that in a balanced way, but don't take responsibility for what you don't have to. What do you have to do and what is optional? How can you lighten the load? I've just paid someone to tidy my front garden for me. I could have done it but I decided to take it off my plate.

Remember that your needs are just as important as theirs. I schedule in something each day that I enjoy or that meets a personal goal. I say no to what I don't want to do. Sometimes that can seem heartless but it's essential. If you burn yourself out or get sick, you can't be any use to them either. Then what? As they say on planes, put on your own oxygen mask first. This can be really hard when you've always been taught to put others needs first (like I was), but it can be learned (like I did, though it's still often not easy and I don't think I've mastered it yet).

When I say it can look heartless, I mean that my elderly aunt asked me to serve as her power of attorney if she needed it in future. I said no. She has no children, just one sibling she doesn't trust enough to ask. There is only me. I looked at my full plate and I said no. I explained, and she understood, but it does leave her in the lurch. I just know that I can't take on a single other care responsibility. She will have to ask her sibling, even if it's not her preferred person.

I would contact a carer organisation and ask for help to work out the juggle. There are some good services available.

Can you look at carers/attendance allowance? You need some help and maybe even a cleaner could lighten the load a bit.
contact the CAB?

Read the care act.
Both oh and dm need to be assessed for their own individual care needs. They may both be entitled to carers.
Or day centres services
Speak to your local carers organization for advice go to carers uk website

As someone with adhd & probably the same ish age, looking after multiple people but on a much less often basis but struggling nevertheless...solidarity.

I have a mirena, suits me, have more mental clarity when it's newer.

Get a carer's assessment. Get needs assessments for the others. Social Services would rather you avoid carer's burnout.

And use patient transport services
Get both adults assessed by ss for their needs
And long term maybe a care home is needed, but get in home help first if you prefer

Why didn't your OH get PIP ? Some get it just for feeling anxious while others who really deserve it don't get it. He ought to qualify if he is in no state to do anything. Please contact a social worker who can help you fill in the forms correctly. This is no way to live. Does your OH or you have any family that can help out? It must be so hard being alone caring for everyone.🩷

I agree with getting help to try again for PIP. Long ago we had a Mind worker help us with Dh’s application in the early days. He’d got no points at all originally. He was distraught and much worse afterwards (pretty bad before). Awarded in full as soon as the appeal paperwork went in.

Please ask again about care assessment too. You shouldn’t have to, but keeping you in work is one of the reasons for it.

I’m so sorry @exhaustedandoverit
I am looking after 2 parents with dementia and it is killing me, alongside looking after kids and full time work. I know how you feel. 🌺

My view, from this dark place -

1. Get AA sorted for your mum and use it to fund some care, however minimal to take some small burden away
2. get POA sorted
3. Get carers assessment done for you. You mentioned wanting to go to the gym; you may be eligible for free passes as a result of being a carer.
4. ESA - try and use this to support you.

it is bloody hard, please try to prioritise yourself xx

Can you call social care and see if they can support . Those you care for may be entitled to help . Do you get attendance allowance ? That may help you reduce your hours

Only people over 65 can get attendance allowance eg the op s mother . Oo can help her apply

You really should appeal the PIP application, they turn down most first tries. CAB will help you to complete the form in the best way to make them understand OH's needs or as above a charity which understands the condition will be able to help.

I wrote a reply then lost it 🤦‍♀️. Thank you to all for the advice and lots of solidarity to those in the same position.

We’ve appealed the PIP decision, the original application and the one after that were almost funny, they missed so many points and contradicted themselves repeatedly. We have some help from the GP who are taking it to tribunal with us and are hopeful he’ll win this time. There’s so much evidence from consultants, GP and the MH team. OH thinks all the problems will be solved if he gets it but TBH I’d rather have him well and able to function again.

mum hasn’t applied for AA, she says she will but then just doesn’t which is frustrating. I’ll need to take some time out to sit and do it with her. UC suggested it also when they did my review as I might be eligible for carers allowance although I think I work too many hours to be eligible and I’m really reluctant to reduce them. Work is my happy place as sad as it is to say. I love being able to have conversations with my colleagues and it gets me out of the house. Ideally I’d up my hours and get some more responsibility, but right now I’m not in the right place at all. I’m working towards it but it’ll be years rather than months. Luckily my manager has been really supportive and knows the issues but I don’t want to be taking the piss.

I’ll ask the GP about the gym passes, I feel that exercise would help me massively. I’ve tried outdoor running but it’s definitely not for me, I think it’s the environment I like, headphones on and lifting weights used to clear my mind.

the trouble with the food shop is that I can’t rely on OH for anything at all. Any plans fail, he says he’ll do something but doesn’t, says he has done something but hasn’t - which is what leads to massively important things not being picked up, like CT not being paid and a speeding fine not dealt with, I can’t trust him. Plus having an hour to wander around Aldi is like a night out for me nowadays 😂.

Knowing that he’s likely to be admitted to hospital tomorrow is just sending me into a spiral. It’ll be a few days of me picking the kids up after work, feeding those at home before going to visit where he’ll be in a bad mood then getting home late to put the kids to bed. It’s happened so many times before. He’s terrible at being ill, it really feels like every conversation is about his health which I know sounds awful for me to say but sometimes I’d just sometimes like to start with him asking me how I am or how was my day. I tried to talk to him about how low I felt a few weeks ago and he said how did I think he felt. When I got diagnosed with adenomyosis earlier in the year he literally put his hands over his ears when I told him. I mean FFS. I know it’s not a huge deal and loads of people have it but there are times it hurts to walk and it’d be nice to have a bit of sympathy or at least understanding. It’s at the point where I don’t really tell him stuff any more.

It’s weird to feel totally done but not being able to be done if that makes sense. It’s a real sense of disconnect, almost numbness, my brain sends me off in an imaginary life where I’d be happier. I don’t want it to affect the kids but it is and I hate that they’re growing up in a house that they don’t want to live in with a dad who can’t properly parent them and a mum who is permanently stressed. They aren’t near their friends any more, moving to a closer school would be an option and would be easier but the plan was always to move back and I feel id be giving up if I made that change now. They’re still so little and have had so much change already.

ugh I’m rambling.

Sorry - just for clarification- how’s he getting speeding fines if he needs you to wait on him hand and foot? I’m not sure if I’ve missed this - but what is your partners diagnosis?
I cannot understand your colleagues and employers being happy with the continued disruption it sounds like you are dealing with.

Same as the PP, whos getting the speeding tickets? And what is DHs medical condition. From what you say hes "compus mentus" and able to hold conversations so why cant he do simple life admin like deal with speeding fine or pay council tax.