Pushed past the breaking point?

[MrsGambini]

So in brief I had to leave the home I share with DH because I rely on him for care and he was out of his depth, my Mum used to provide respite care but decided she needed a set period “out”. Zero contact at all.
i get that others have their own needs, but I was made to feel like (told) by her it was my own complex medical needs that she wanted to not deal with any more.
i have to point out that I’ve never asked her for her help, but she took it upon herself ;sometimes pretending to be me on phone and lying to medical professionals, (as she knows all my personal data) and her being in the care sector for .so long, and me often being so unwell I couldn’t fend or articulate for myself (my bad I guess, I’m in early 30s), but when I say care needs; I do mean a lot.
ive spent weeks living with my Dad and stepmother, and particularly with my stepmother, she has shown me kindness and support like I haven’t seen or known in what seems like forever… in many ways it’s been lovely.
the set period of “time out” however ends with my actual mum soon, question is, do I initiate contact even though she knows how unwell I’ve been and hasn’t with me? Do I leave it up to her? She knew during this period I was hospitalised for example and didn’t make an attempt at contact. Don’t know what to do… any advice?

It sounds like it’s time to speak to ss for care assessment as your family can’t or understandably don’t want to be your carers. Once you have appropriate care in place then you can decide what you want to do about your relationship with your Mum.

Thank you for your reply: I have tried Social Services on multiple occasions but I always seem to slip through the net so to speak. If I don’t meet one criteria they won’t help me with another if that makes sense? It feels like a ridiculously baffling set of hoops you have to jump through when you feel at your most weak and vulnerable. So I end up giving up. You’re right though. Maybe I should try again. Thank you again for your advice.

Are there any support groups or a charity related to your illness? They can usually provide advice and practical help about accessing systems and agencies to help get the care you need.
So sorry you're going through this. Good luck.

I think you need to work with your husband, he is your next of kin, can he push social services so you can figure out a way to move back to marital home?

What level of care do you need?
Is it physical tasks such as help with washing, dressing, mobilising due to restricted mobility?
Or is it more emotional support such as helping re low mood/ anxiety, prompting and encouragement.
The emotional and psychological stress in the role of a carer is immense. Does dh work as well?

Op so sorry that you are unwell and have recently been hospitalised.

This is going to sound uncaring, but if your care needs are such that your dh is out of his depth, and your mum needs an indefinite break, I think the emphasis is on you to go to your gp and start the ball rolling again to see what state provision is out there. You need to be very assertive with them though and say that you are unable to care for yourself without help and you need an assessment.

Really, you shouldn’t have been discharged from hospital without sufficient care in place.

I know it’s a nightmare trying to get anything sorted, and they do make you jump through a baffling set of hoops, but could your dh or sm help advocate for you? Or is there a support group or charity specific to your condition which would help you?

I know it’s upsetting about your mum but is she working, going through menopause, have a family home to take care of? Has she becoming very stressed or mentally unwell?

If your condition is such that you will need care permanently throughout your life then that’s a big undertaking. Your mum is allowed to say it’s too much for her if it is. She may be feeling wretched and guilty about this realisation. In some ways though she may be doing you a favour by saying she can’t do it anymore as it will force state services to provide for you.

It must be very hard for you emotionally that your mum didn’t get in touch when you were in hospital but what lead to this situation do you think? Is she physically exhausted? Does she feel that you are not making enough effort on your own behalf and depending too much on others? If she is familiar with the health system, is her opinion on this right?

Obviously you don’t need to answer those questions here and I don’t know what you were hoping to get out of this thread but you and your dh need to try and find some different solutions together. Don’t sit there and do nothing hoping your mum will come back because she may not. She may have stepped away from you physically and emotionally to force you to take action for yourself.

Sorry don’t know how best to reply to individual messages, but I appreciate them all, thank you.
I have tried with Social Services, my GP, and all charities relating to my needs.
I have both physical and mental health problems and having cared for others myself- I know how much pressure this puts on the care giver.
I need assistance rather than actual physical help. For example I can bed bath myself but I need somebody to bring me some warm water. I can change myself but can’t do up bras etc. I can’t lift a kettle though or stand for long enough to make a sandwich. (Yes I have all of the adaptations and equipment that could help).
I fully appreciate how difficult it is to deal with someone who has mental health difficulties. Again I’ve done it myself.
My mother was one of them- I’ve tried so hard to help her (and myself) and I made myself unwell looking after her because I neglected myself so much.
She doesn’t have any other children, isn’t going through the menopause, is retired with a fully paid off house, and I have been (until she cut off contact) the person she rang at whatever time she wanted or needed to offer support. This now feels like I’ve just been abandoned.
Ive told her multiple times I don’t want/need/expect her to be a care giver- all I want is a “normal” mother/daughter relationship…
I don’t think she’s mentally well, neither am I so no judgement here (but I do try and help myself by even paying for counselling that I can’t really afford).
I’m not sure what more I can do? I’ve exhausted every avenue I know of.
I have spent hours on the phone to services, as has hubby, and I’m just at a loss now. Even if all she could offer was a hug I’d be happy.
I’m so sad and feel like a burden on everyone.
I honestly don’t expect anything much.
I spend every night crying until I fall asleep then wake up with panic attacks from nightmares.
My Mum and I were always best friends- maybe that’s part of the problem.
I feel so alone

If you're having to have a bed bath, are you (and I dislike the word) bed bound?

How is your skin integrity and who's monitoring that? What about continence? How are you managing that? Have you had any input from district nurses?

I’m really sorry that you are twixt and between in terms of care provision. I don’t know how you are supposed to manage though if you don’t have water brought to you to wash or can’t make a sandwich or finish dressing yourself. Needing help with those things would suggest to me that you should qualify for help. I don’t understand how all of this works though and I hope someone will come on to the thread who understands it.

Why can’t your dh make you a sandwich and bring you water and help you finish dressing as part of a normal routine morning and night? OK you need help twice a day but those things don’t sound too onerous and they are the sort of things a father would routinely do for a child for example? Is he totally out of the picture? If he is, have you updated your gp and social services that you are struggling alone?

If you can walk to the bathroom and back, could you perhaps buy a chair for the shower? Sorry; you don’t need to answer intrusive questions here but it’s hard to know how to advise you without knowing what it is you need precisely?

Can you put the money you spend on therapy towards getting some private practical help? Someone who lives nearby? Maybe an energetic retired neighbour who could do with a little more cash who could pop in morning and night? Even if just three days a week it might help a bit? Someone I know pays for someone in their village to cook for them on four nights a week for example,

Does your local church have a programme for visiting people in their parish who need emotional support?

Sorry but your update is a little confusing because it sounds like you were helping your mum? Not the other way around? Also, you mention your care needs and how she has free time but then say you just want to see her as a mum? And that you have told her you are happy to see her without her offering care to you? Is that really true because it sounds like you do have some resentment towards her for not looking after you?

I don’t know what to suggest about your mum’s absence but sometimes if people need time out; it’s best not to chase them in any way and let them have their space.

Re-reading your op again, your mum said that she can’t cope with your complex medical needs any more. And she is allowed to say that I’m afraid. You say that you don’t expect much but it sounds like you do want her to come and provide care twice a day?

You say that you have exhausted all avenues of help but in your first reply you said that maybe you should try seeking help again?

You write well and you are very articulate op. Maybe your mum is waiting for you to demonstrate that you are helping yourself a little more than previously? Maybe she stepped back so your dad and stepmum would step up?

Sorry. None of that is very helpful. What were you hoping to get from this thread op? Did you just need to vent or are you wanting practical suggestions?

Are you going back to your own home once your time with your step mum and dad is over? What are they suggesting that you do? Can you ask them to extend the deadline a little so you can put more help in place? Why is there a deadline in the first place when you can’t cope alone? Presumably you are having conversations about this?

I’m really sorry that you are in this position op as no one likes or chooses to be dependent on others and it’s an extremely difficult position to find yourself in. I hope you are able to keep strong and find a way through all of these difficulties.

An appointment to the gp to help you with night time panic attacks might be a good first move as your poor sleep will be having a very negative impact on your mh.

Are you able to get out of the house at all and enjoy this spring weather and take your mind off things for a while? 💐

Also, sorry for all of the questions, but you will need help with tasks like cleaning and changing bed sheets? Are you sure you have told the gp and social services the whole story op?

Please don’t hold back out of pride. It’s very hard to admit that you need help and much nicer I imagine if family member are willing to provide it, but if all avenues are exhausted on that front, you are going to have to sound the klaxon very loudly, Go to your MP? Post on a local Facebook group? Call 911? Ask your gp to write to social services on your behalf? Please make sure someone hears you.

Good luck 🌷🌷🌷

Sorry if I wasn’t clear but yes my hubby will help with water for bed bathing, make food etc. but our home isn’t very suitable practically (in that we don’t have a downstairs bathroom, just a toilet- so I can sit on the toilet and fill the sink and clean myself, but hubby will help with feet and other areas I can’t reach, he’s very willing but to be honest the whole process is exhausting for us both).
I’m very aware of maintaining skin integrity but became a little obsessive about it when I first became unwell, and was advised from both a physical and mental health point of view I was over doing it and over thinking it. I guess I found it difficult going from hospital/care settings where they virtually enforce a daily top to toe scrub down/ bedding change etc. (I understand why this is necessary obviously), to then a home environment and expecting hubby and I to do the same.
I by no means expect my Mum to care for me even once daily, or weekly - just me going to hers for a meal or chat to give my hubby some breathing space would be nice. It’d be nicer still if it was done just so I could see other people/ surroundings/ get to spend time with her. I don’t need/want/expect some sort of pseudo-medical environment- sharing a tin of soup for example but getting to talk even about love island or something while hubby showers etc. (some kind of self care for him) is all I’ve said would help.
Social Services seem to be a get what your given fiasco… I understand they’re understaffed- but sometimes it’s made to feel like you’re the burden. Services I have been offered are not suitable- I know I sound completely ungrateful here and believe me I am not- but somebody coming to my home at 9am to make me breakfast/ a sandwich is just a waste of everyone’s time- sometimes I’ve had no sleep, sometimes an hour o so- sometimes I’ve been awake all night feeling hungry but know hubby is exhausted and don’t want to wake him.
Yes pride, and fear- comes in to play. I thought I’d be able to hire somebody local to help with day to day (I know a lot of the staff in hospitals do this).
I advertised on social media and again (my bad) I didn’t realise how many unscrupulous people there are out there. I had two males (separately) show up who had both stated they were female. One was obviously looking around for valuables and asking odd questions- one took a look at hubby and left on the spot. It made me feel more vulnerable when I already did. It put me off and again, that’s my failing.
My Dad and Stepmother both are away at times for work- so they have now exhausted all their options of rescheduling/pushing things back.
Yes I fully and freely admit to a misguided sense of pride not letting services “in” (I mean metaphorically) - I know hubby is embarrassed as he feels like he’s failing me- and I worry about his mental well being so you are correct in your judgement that I haven’t been always entirely honest and open with how much we struggle- again that’s my fault.
I have researched and interacted with every charitable organisation I can think of (or been told about)- but then it ends and I’m left feeling “what now/next”.
I just want to vent I guess or maybe some new ideas.
I’m not afraid of helping myself in whichever way I can- but I guess you could say I’m housebound so all I can do is get on the phone and plead my case.
I worry so much about how my illnesses affect my loved ones- I just feel like such a burden that I wonder the point of me being around them (not in an end of life way- more would it be better if I just leave and leave them to their lives- throw myself at the mercy of services alone).
Maybe that would make them better off? I don’t know.
I just want and need support. I’m sorry if this sounds self serving- I just can’t live like this any more. Thank you for all your replies and I hope I’ve cleared a few things up.

Hi op; I have just read this update.

You don’t sound self-serving; you sound like someone who is stuck in a really difficult situation!

It does sound very hard indeed. Your bathroom arrangement at home sounds difficult and I understand how vulnerable you would feel when potentially unscrupulous people visit.

It’s clear from reading this that your dh doesn’t see you as a burden so please try not to think of yourself that way. You write very well and have good insights in to your situation. You are obviously intelligent and you have innate worth in yourself, totally separate to whatever you can or cannot do.

I don’t have any further insights about your mum except to say that she may be struggling herself with something and doesn’t want to burden you with it, as you have enough problems to deal with. Honestly, in your shoes, I would let it drop for the moment and give her space,

As for practical matters,do you need trained carers for lifting etc or could you try advertising locally for a cleaner or home help or “energetic grandmother” type, rather than a carer? You can explain at the interview that some care tasks are involved such as bringing you water for washing etc? Scammers might be put off if they think a lot of cleaning is involved?

A local physically energetic recent retiree who lives down the road would be perfect if she was willing to pop in and out at fairly short notice for a regular fee?

Finally, my only other suggestion is researching on local sm (judiciously) if anyone is in the same situation as you? In other words, I don’t think you can be the only person who could do with some care but finds state provision problematic? Or they fall between two stools and don’t qualify for it? You could then perhaps exchange experiences and potential solutions and a problem shared might boost your spirits a little.

Wishing you the best of luck. I know that you are going through a very low moment but sometimes that can be the catalyst to encourage us to swallow our pride, gain more acceptance, seek out different solutions, ask for help, and go the extra mile to change our intolerable circumstances. That’s the theory anyway! I am certain it is all very overwhelming in reality. 💐

Thank you for your reply.
When I advertised/put out for help on social media I was expecting somebody who might want a little extra spending money to help hubby with laundry etc. but then like I say on 2 different visits people who had said they were female turned out to be male.
I have had some wonderful treatment from male medical staff- I don’t have an adversition to male care/medical/help.
I do however find the deliberate misrepresentation unsettling.
Like I say I am vulnerable and feel vulnerable- so if somebody leaves promptly after they’ve seen my hubby (no matter gender) I’m a bit more on edge and it takes a while for my confidence to build up.
So that means not finding the nice person nearby but through an agency recommended by Social Services packs I have acquired - all of which seem to want me to sign contracts and honestly I don’t have that money up front.
I just need a bit more support for hubby and me. I’m down but not out and will try to keep on fighting.
Yesterday was particularly bad in that I was on the phone about four hours in total with various services and I had a total meltdown emotionally.
Then hubby mops the tears while I’m trying to get myself washed and he’s helping- because my medical conditions have caused me (in this case) to vomit on myself- and then I feel bad I’m not the version of myself he married (physically).
I don’t do my hair or make up or clothes or nails like I did. I got some bad news and ended up needing to be changed again. I just felt like a failure as a wife.
He always assures me I’m not but I can’t help feeling less than adequate and that I’m putting more stress on him.
“Friends” seem to drift off when you can’t go for martini hour- so it is just me and him really.
I encourage him to go out alone to see his friends but (understandably on his part I guess) doesn’t want to leave me alone in case I need assistance urgently (like yesterday).
But in a way it makes me feel like more of a burden.
I just know we need extra support as a couple because deep down I know he loves me- and I adore him.
The trouble is getting that support seems (and is) a mountain to climb- and some (most) days I just feel like I’m not worth the effort and I give up on myself.
The thing that spurs me on is making life easier and nicer for hubby. I guess I need to concentrate on that in my most dark moments.
I just am so lonely, scared, scarred mentally, I want to help myself so much but then like I say yesterday’s multiple phone calls stressed me so much I ended up back on the downstairs toilet- needing assistance to get re-washed and changed, and feeling like a complete failure.
I spent the rest of the day trying to hide my sobs from hubby by pretending to be asleep.
I thank you all for your kindness and support- I truly am grateful 💜

I’m so sorry, I don’t know what to suggest but I can very much sympathise with the frustrating phone calls. I remember that experience when trying to get some care for my elderly parent. Suffice to say, we had to kiss a lot of frogs but did find someone eventually, after a lot of trial and error. Your dh sounds very supportive. Don’t give up. You both deserve some good support. 💐

Thank you for your kindness and understanding.
i fall between the gaps both in terms of need (as you say hubby is very supportive, but sometimes this works against us almost)? I don’t understand why you have to get to breaking point to qualify for help?
Surely time/ money/ energy would be better spent mending a dress with a couple of stitches than waiting for the whole thing to fall to threads and starting anew?
Pardon the rubbish metaphor but I’m sure you get where I’m coming from.
I also fall through gaps (as does hubby) as we aren’t young enough to be in one bracket of help but not old enough to be in another… it’s wearisome to say the least.
I’m so very sorry you had to experience similar stress with your parent- I genuinely know how it feels- and it’s both maddening and saddening.
I thank you again for your (and all) the support- and wish you all the best.
Sometimes a listening ear is just the tonic you need!
Take care 🌺💐💜

You too! 🌷🌷🌷

I just wish I had more, and better, suggestions at my finger tips MrsGambini

Last ponderings….

Have you tried your local parish churches,
C of E, RC, your local Mosque?

I have absolutely no idea what any of them might be able to offer you, but one of them might prove to be a helpful point of contact?

Have you thought of posting again on Mumsnet under a different name and asking on the special needs board about where to seek help if you fall between two stools?

I don’t understand why you have to get to breaking point to qualify for help?

This is a very good question and I am certain that you are not the only one asking it,

Watching coverage of the local elections yesterday and today, I can only think that, with a few notable exceptions, we have been very let down by our politicians who seem to have forgotten that their job is to represent ordinary people.

Somehow everything that makes life civilised and decent has been eroded: decent health and social care, including maternity services and services for the elderly, decent housing, safe and efficient public transport, well maintained public parks and libraries. Don’t get me started on free, high quality education for all. Other EU countries manage to have a good stab at most of these things although COL prices are rising everywhere.

What has happened in the UK?
It’s as if everything decent has been sold off behind our backs for profit.

Apologies for getting political when you are suffering at the sharp end. Take care and sending strength. 💙💜💚

No need for apologies- I completely get where you are coming from!
Love and gratitude always 💜