Help Please

[MsJinks]

Hi - briefly my mum is bedbound in a hospital bed in my parents’ front room and I moved in to look after her a fortnight ago when my dad went into hospital after a fall due to his dodgy hip, breaking his shoulder. He came home last Tuesday also to a hospital bed in their front room and I was asked by the dr to stay and supervise 24/7 to ensure he didn’t try and get up to see to my mum - I got a baby monitor for this and sleep in their room. He had hallucinations from tramadol 2 nights so I was up a lot with him, and my mum realised she just had to shout and I’ll appear. My mum had 3x a day carers but my dad did everything bar wash/dress her including using this bloody she wee when she needs the loo, although she wears pads, to the point he was getting up 3x a night for this. She didn’t get me up for this until my dad came home but it’s increasing and it was 5x last night. I know I’m not being very empathetic to someone stuck in bed needing the loo - though sometimes she doesn’t or has already gone - but I despise the she wee and the difficulty of using it anyway, but at night I’m getting totally fed up. I think because I am due back at work tomorrow after a fortnight’s emergency and annual leave to help out and am wondering how I can do it - I can’t afford not to work, or even cut hours. The day is pretty full on between 7 am and 10 pm anyway with maybe a clear hour only once but add in the nights and I’m just getting very tired and fed up and worried about the future getting even tired etc and probably very cross.
My dad expected to come home and continue as he was, his whole life is making sure my mum is ok and happy - he physically can’t now, and shouldn’t in future due to fall risk and tiredness but if I left, or just didn’t get up, he would certainly try or be very distressed failing. My dad is 90 but pretty much all there, I think my mum must have some dementia but she is fairly compos mentis a lot of the time so they will certainly know if I’m not on top of this and look happy to help.
There’s a lot going on, but mainly I’d like advice on how to not get resentful getting up in the night - if I could just get some solid sleep and space over night I think I’d find this easier, but that’s not going to happen so anything I can do to chill out over it is needed - this full on care is new to me and I just need advice on getting it right for my parents.
To be clear they wouldn’t have carers in extra as they hate them coming at all and my Dad is so worried on cost, plus he’s unhappy others doing it at all rather than him. Anyway carers don’t and won’t use a she wee as care plan states pads.

These situations get me so angry, firstly its out of order that the doctor expected you to provide 24/7 care to both of your parents - you work and have a life of your own - the doctors know that your dad isnt going to miraculously recover enough to provide care to your mum after 2 weeks. He should have been discharged with his own care package.

Im not sure youll like this but you need to be selfish and say no to your parents, whilst you keep giving they will keep taking and youll get no help from an over stretched under funded system. You will quickly burn out yourself.
Your parents need to accept they need help and its unfair to expect you to do this, you cant. If they cant financially support themselves they will het help.
Please be strong OP, but do not let them walk all over you, you need to strike a healthy balance.

Hi - thank you for the response @Ilikewinter - my mum was told so clearly by recovery team assessor not to wake my dad for help that she managed a night or 2 but then she found I could get up 🤦🏻‍♀️
I can see my boundaries were too lax but I just didn’t think - it was all such a rush as I was called initially to do my mum’s meds, as it’s not on her care plan then remained to look after her. Blatantly clear that if they can bin the issue off then ‘job done’ and it’s scary without care or medical training as I’m scared of damaging skin/bones and did call an ambulance after concerns for my dad with his chest etc though turned out to be a delusion but I didn’t dare risk that. Care calls are like 15 mins and don’t cover meds, food etc as parents have autonomy and refuse higher input and are cross every time people turn up anyway. They pay for care - which massively worries my dad and annoys him and he will only pay for the least possible thinking he can do the rest.
Oh the doc said if my dad behaved then after a week or so just go home and leave them to it - but I think that’s a bit wrong though I know some folk live in beds with just 4x calls a day. Also I know if it were kids I was given randomly to look after there would have been so many checks - no one really bothers as much about the vulnerable adults, elderly or additional needs. Still that’s just part of lack of resource.
I expected to have a bit of a difficult conversation with my dad but he’s still in a lot of pain so I can’t yet. I do know I can’t sustain getting up every night - and I get a bit p**d off already when they then sleep in the day to catch up and I don’t want to feel like that - I thought my empathy would last longer than a fortnight 🤦🏻‍♀️
Thank you again - I have some thinking to do - and probably need to grow a pair!

@Ilikewinter - can’t type 🤦🏻‍♀️

I don't have anything helpful to say but your post has made my blood run cold. On your behalf. Your GP has let all of you down horrendously. No one person can sustain what you're doing.

You need to tell them firmly you cannot be available for ongoing care needs to either parent. What do the carers do for dm? They both noe needs an assessment from care team. Are your dps perhaps telling hcp and ss that you can cope and they don't need it?

Its difficult though because of course you dont want to see your parents struggle. Do you have any other family members that you can talk to..maybe both of you speak to your parents?

I’m an only adopted child - so were they only children - I have 4 adult children but 3 live 30 miles away in my old town and the one with me has no transport and is on as mildly and whilst she has been super helpful fetching things I initially needed (I came in a rush but never left and am Coeliac so she got me food bless her) she works long shifts and can get upset with events like these - anyway my parents never knew my kids much and will only allow one in the home as she is a carer herself - they’re frightened of covid.
Thank you for all your responses - I feel so bad being fed up after just 2 weeks but you made me feel better about it - a bit. It’s scary being thrown in - I’m worried I’ll break their skin or bones as well as the rest of the concerns.

The carers for my mum wash and dress her in the morning and check her the other 2 times - no meds or food, as my dad insisted he would do that.

Unfortunately the only person who can help you is you
I appreciate it’s not easy but you need to pull away and let your parents get into (mild) crisis before anything will change.
They need proper qualified carers and to accept their current situation but all too often while you are propping things up SS won’t provide them and your parents won’t accept them.
You either need to change things, and saying what they will and won’t allow is unhelpful, they will be more likely to allow things when your mum wets the bed etc. It sounds harsh but in some cases a sharp reality check is needed before things can change
It took my mum spending the night on the bedroom floor with sdad refusing to get up and help because he was tired before my parents accepted the help they really needed.

OP, you need to make an urgent referral to social services. Decide on what is sustainable for you to do long term (and keep your job, health and sanity) and then halve it and state to them what you can do and what you can't. Be firm. They will still offer less so by halving your stated input you have leeway to increase it if needed.

Can your mum use a commode or bedpan? What is this she wee nonsense? GP should check for a UTI if she needs the loo 4 times a night.

My daughter - a carer - today is watching them whilst I do their shopping and she helped me try a bedpan with my mum that recovery team brought yesterday - my mum just said it was too uncomfortable and got distressed - tbh I think she just likes using a she wee for attention from folk 🤦🏻‍♀️ and oddly though she seems partially incontinent, as in doesn’t always realise she has had a number 2, she does sometimes know she needs to go and either way wants to in her head. I do think there is a uti and am waiting for antibiotics from gp to be ready - though today didn’t look as bad as it got last week, she is now convinced she is ill anyway 🤦🏻‍♀️ - I’m fetching cranberry juice and telling her that will sort it, which it might if she just even thinks it - bad me🤫 She’s been getting up 3x a night for months now though apparently - god knows how my dad managed it - he was sleeping on sofa to be with her and look after her - it is all he worries about. If I’m there it’s just not an option to ignore her as they both start shouting and getting distressed about it and I’ve not yet slept through that - I need the monitor on as my dad really isn’t good and may need help.
I think social are doing assessment on my dad this week to pick up from nhs recovery team so I need to be clearer with them than I was with dr at hospital. I’m also supposed to be requesting a new assessment for my mum but they both have autonomy and have got shut of arranged care calls before.
I’m going to tell them I’m working tomorrow and do it from their bedroom - yeah their house is rammed to the rafters and the bed is the only place to work 🤦🏻‍♀️ - see how they go on with that - my dad thinks it’s just a few days and all will be back to as is - so it’s hard to start backing off - if it were a few days I wouldn’t mention anything but they need to be making some changes to their lives sadly.
Thanks all - I really appreciate the supportive messages and advice - plus I’ve just loved driving my mini to the shops with tubes full blast - life seems better already 😀

Think about if they were both in hospital and the hospital said that one nurse had to look after all their needs, day and night, without a break. It would be outrageous and rightly so.
I’m so sorry that the Gp has put you in this situation, but you will have to stand up for yourself and insist that they have proper help.

Hi - thank you again - I should clarify it wasn’t the GP organising this but the hospital dr discharging him ASAP - I was agreeable due to Xmas, my parents wanting to be together, but mainly as I had no bloody concept of the level of care he required. The dr said I just had to watch them for a few days then leave them to it - which I was dubious about but it indicated he wasn’t too bad. His pain still hasn’t stabilised and the first time dealing with someone being delusional was quite awful. He is now sleeping, barely eating and drinking and excessively upset if put in his chair - I know what all this could indicate but no one tells me much or alternatively tells me very different things such as leave him in bed let his pain subside - he has to be up due to his chest - can you walk him to the chair (that’s a no) - don’t try and help him walk it’s too risky 🤦🏻‍♀️ - bit difficult with it being Xmas but will hopefully be able to discuss with social worker /assessor.

wishing you all the coping skills, OP. It sounds like a very difficult situation. Just remember to look after yourself first. You need to access your own oxygen on the plane before you can help anyone else with theirs, right!

The continence issue is a feature of dementia and so is night waking. People lose the ability to tell night from day, and without sleeping medication it is impossible to care for someone in this state, not being able to sleep yourself.

My aunt looked after dgm for 20 years, but her gp said no more as aunt was delirious with lack of sleep, and also could no longer lift dgm. Likewise fil couldn’t cope with mil’s 24-hour sleep (lack of) pattern and the continence problems. He collapsed.

@IrmaFayLear - 20 years 😳 a I’m struggling with little sleep after 2 weeks - bless her. I’m supposed to be working today - keep telling them and they’re like ‘oh yes, you said’ but just got called from kitchen, where I was taking a call, 10 Minton to working - with my mum thinking I’d just gone and she needed me 🤦🏻‍♀️ - it’s nearly 90 mins later after toiletting, feeding, providing drinks, changing tv channels, meds - I need to get quicker at this!
It’s difficult not being stabilised enough for them to make plans - but hoping to get it discussed soon with the social - snow stopped play obviously though so may be delayed.

Have you got an urgent assessment of their needs? You need to make it very clear to social services that you cannot do this. They need full time care

Call adult services emergency number tell them you’re leaving at a certain time and they need to do a care assessment
You don’t have to be a 24/7 carer
Alternatively If your parents can afford it use some of their money for carers

I think you will need to be very tough with social services and simply state that you are going back to work on x date and they will be unsupported from then onwards unless something is put in place.

You have my sympathy. I've been helping care for my dad since April and am now having to take a sabbatical as he is considered end of life and we are getting virtually no support.

I really would advise you to put your foot down now, and hard with the powers that be.

@MsJinks please. Look at NHS Continuing Care. This is a facility to support patients in the community who have medical issues and require personal care. My mother had severe issues relating to dementia and despite my brother and I both looking after her 24/7 the physical and mental demands on us were too much. Our first application was rejected and after we appealed it was successful. My mother was given an overnight career for 8 hours every night who sat with her so we could get sleep.
Your circumstances are different and you may be able to get a package of care for one or both your parents tailored to their needs. The application form is quite daunting but it is worth going through it to apply.

Continuing Care has a very high threshold and there's no guarantee you'd get it. You have to put in a huge effort getting all the evidence together. At this moment you're in crisis, and best to spend your energies in getting that Social Services assessment.

I could weep for you MsJinks. I’d be weeping for myself too. And all the others with lives on hold, jobs impacted, families pulling in the opposite direction. My situation is only a fraction as difficult as yours. It’s not reasonable to expect you to pick this up. What if you had emigrated to Oz? Lived 400 miles away? Had young children or a baby to look after? I’m so sorry I have no advice only
my sympathy. I hope your situation improves soon.

Someone asked upthread whether your parents have money. If they do, now is the time to use it.

I know only too well that many parents would literally rather die than admit a stranger into their home for personal care, and I have heard the “my daughter will be doing everything, thank you” phrase .

I would contact a private care company asap and arrange a meeting. Then present it as a done deal to your parents. It’s the only way.

Continuing healthcare (ie free care) is for those with less than £23,000 - including their house or for those who meet incredibly strict (and difficult to interpret) criteria. Even dying does not qualify in many cases.

Your dd should, however, be entitled to a few weeks of care following his hospital discharge.

In any case, I would still ring a private care company to get the ball rolling.

Thank you all for the messages - really appreciated make me feel less solo on it and some good advice. They pay for care - my mum started paying 9 November but they hate paying, hate carers in anyway, and cut the calls - they never let them do more than essential care anyway - my dad insisted on doing food, meds, toilet etc but allowed the wash and change as useful finally in October. They binned 2 out of 4 calls this time and binned altogether last March when my mum left rehab care home - my mum’s issues have been ongoing since a bad fall September 2019 and deteriorate further every incident - but in view of their actions so far I know they would just try and manage. My dad is on the 6 week thing at mo but imagine he won’t be interested in having follow on care he pays for - they’re not facing reality. My mum said earlier it’s best I’m here to help even if it’s disrupting my life a bit 🤦🏻‍♀️ - they’re focussed on survival though and both specifically focussed on my mum’s wellbeing as has always been their way of life, so it is up to me to set my agenda I know - hope to manage it without hurt or problems which is a bit delusional I know! I’m trying to work this week and be firm with boundaries but I’d have been better saying I had to go out to work as they both think an odd 30 mins without wanting anything is enough - and working from home is a bit of a jolly. It’s ok this week but work can’t be super flexible for long so that’s a worry. I’m hoping that after physio tomorrow and recovery team review Friday I may have some clue of what recovery will be made by my dad, and how their future looks - never seen a social assessor yet though was expecting one this week as NHS is handing over to the council ASAP.

As an adult care social worker I agree that your parents need an urgent assessment. You need to be clear to the social worker/ assessor AND your parents that this isn't sustainable for you. Lots of times the adult child has wanted me to tell their parents they can't carry on, I can suggest it but the son/daughter has to back this up. It's common for people to not want carers but I end up saying they can't stay at home without them. Re not wanting to pay...they need a financial assessment. How much they pay towards care is decided via a means test...so more care hours doesn't always cost more, it depends on their maximum contribution. It's so hard I know.