hello, i didnt even know i was a member her... - Care Community

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hello, i didnt even know i was a member here, such stress


takes over-- basically my sister 72 is caring for a very awkward controlling partner, she is at the end of her tether, but because he has mental capacity or supposed to have, she cannot do anything about it, she is washing soiled bedsheets everyday, cooking brekki lunchand dinner,sorting his hospital transport and shopping, changing beds , seeing to his personal needs, the house he never bothered to repair or update, its a vile timewarp, how she has coped for 26 years in there, i dont know, they moved into his mothers old bungalow 26 yaers ago, andhe has done nothing in there, my lovely sister now looks very old with 3 months of caring for him after he was discharged from hospital unable to do a thing for himself, she is also losing her hair with stress and hard work , he cant hardly walk and cant maintain his weight so she is doing it all, is there nothing that can be done, ie a care home as he is incontinent, aggressively rude and she is run off her feet and i am afraid for her health. thanks

16 Replies

Hello bluepettals2,

May I just refresh my memory by asking if this is the sister with the older husband who broke his hip and wrist a little while ago? If so, I see from reading your previous question that his social worker at the time, insisted he didn't meet the criteria for any help. That's something that was hard to hear then and is even harder now, as it seems that there has been further deterioration and I feel for your sister in trying to care for him.

Leaving aside any ungratefulness on his part, or his carelessness in maintaining his property etc., your sister sounds as if she's run ragged and she certainly needs a fresh head from social services, to reassess their situation as a couple.

I'd suggest she goes to see her own GP and that you ask if she will allow you to go with her. She maybe needs some moral support from someone who can speak up a little louder on her behalf. Of course if her GP isn't her husband's they can't talk about his medical conditions, but she can certainly ask for considerations of her own and request help to alleviate the stress of caring that she's under.

I hope you are able to get the help that both of them clearly seem to need, and do come back and let us know how you get on with it all. It sounds like quite a burden for you both.

wow you have a good memory, i cannot even rememeber posting before and yes you are right, the social worker said he didnt meet the criteria but as i had investigated and got links from others i.e. healthwatch and 'Care-to be different'

anyone can have a CHC health checklist done, the social worker said on the day after Mr grumpy came home from rehab at carehome, that he ,-social worker, would be back in a couple of weeks to do assessment and did they want a finacial assessment--

i said, hang on-- do the contiunuing health check first Then the financial assessment. the info i have all says no money should be talked about until after the continuing healthcheck list is done although it is hard to get funding, however even though he is ungrateful and running my poor sister ragged,

he is a bit incontinent, as he cant hold his wee, he wears night pads and day pads, he cant maintain his own weight to stand or walk far, or wash himself, his legs are swollen, odemea, with water blisters that weep and rashes and scabs as he itches and scratches, causing broken skin and bleeding ,

he has had a biopsy now on blisters but as its so scabby and gross we think it is bullae phemigoid, or similar, that, i think is a health need, the mobility, as he is prone to falls, he also has atrophic pancreas and has to take Creon to absorb nutrition or he loses a lot of weight, but he eats like a horse and scoffs biscuits all day looking well, while 72 year old sister cooks everything from scratch, he doesnt think about the amount of work she is doing daily, while he sits there ordering and snapping at her calling her all the names under the sun, it breaks my heart,---so these 3 things to me are ongoing healthcare needs plus high risk of falls. shame he cant go into a care home. if at a later stage she really gives up can sheget another assessmnet , her doctor didnt want to be bothered to go into the situation when she tried to broach him about her partner.

my daughter told me of an excellent group of fully trained dementia nurses who are countrywide, they give practical advice and sympathetic, sensible support. Google Admiral Nurses, Polly X


Hello bluepettals, you’re sister should certainly be able to get help and quite how she can be left like that is beyond me. As Callendersgal says, the GP needs contacting and things needs to be sorted out urgently.

I truly hope your sister gets all the help she needs and soon. Xxxx

bluepettals2 in reply to sassy59

she asked gp but t he was short with her.


Get in touch with Scoial Services and ask them for an updated assessment of what she needs. She is entitled to this. She should not be coping alone.

bluepettals2 in reply to Hidden

S,S ar e doinghis assessmnet next week

Hi, it is really distressing to read of your sister's plight. She really should not be having to put up with this.

Several things: CHC funding is very hard to get. The person being looked after virtually has to be on their last legs and have multiple health needs. If they have a progressive illness, are doubly incontinent, cannot mobilise independently, cannot perform their own personal care, then they would stand a chance.

However, it sounds like your sisters husband does have needs and your sister is entitled to a dignified life of her own under the human rights act.

Your sister is entitled to a carers assessment through social services which will entitle her to respite for example, which would give her a complete break away from.her husband.

He would be entitled to a care needs assessment which might qualify him for some assistance with personal care for example. This is means tested so to qualify for help the SS will do a financial assessment.

I need to stress that because the Social Services are stretched to breaking point in some areas there might be a long wait to get the assessments, but it is crucial she gets help otherwise she will be ill. You can self refer through phoning the adult help desk of most councils or any other health professional can refer.

As most people are too embarrassed/ ashamed to be honest about their difficulties, it would be a good idea to have a trusted friend/family member to support throughout the assessment. Also, it sounds as if she will not be able to be honest in front of her husband so she can ask to speak privately to the assessor. It is crucial she does not put a brave face on as she will end up with zero help. She has to tell it from the point of view of her worst day.

Just one more thing, does your brother in law have mental health issues/dementia? If this is a change in his personality, it is usually a sign that the brain has been effected. He could have a memory assessment and the mental health professionals will very quickly pick up that all is not well and they can support more help going into the home.

It's great that she has a sister like you to fight her corner. She is probably depressed and so worn down by the while thing. Good luck. Please let us know how it goes.

hellebelle thank you for that reply- first off although he has some memory issues his brain is bascially ok for 89.. he has worn her down over the years and finds it hard to speak up, she masks things, we end up arguing because i think she is such a soft touch. he is short tempered with her and she does

everything he is bloody lucky. he is overthe amount for assessment so its not worth him having a financial assessment, if he did qualify once the health check is done that sgood but as you say its hard to get, so he will just have to pay without them delving into his privacy. he has what we think is bullae

phemigoid, he as a perpetual itch and scratches til his legs bleed, his legs ar e hefty and swollen with fluid very puffy feet, water blisters thet weep and burst sometimes bloody, and scabs where the broken skin has healed over, th erash is like lyme disease or ringworm but it is nether. the nearest to his legs are BULLAE PHEMIGOID.he has the rash the itch, the scabs the blisters etc.

he has an Atrophic pacreas with 'chronic pancreatic in sufficency' relies on Creon tablets to absorb nutrition or he loses signifcant weightloss, has severe vit d3 and b12 dificency, ckd stage 3 ( but my sister is stage 4! ckd)

he shuffles a few steps and has had 9 falls since dec 2018. so i wondered with all these , would he meet the funding criteria, he has had a biopsy and on going dermo' appoinmnets and if it is bullae phemigoid it can be fatal.

Sounds like it would be the best thing if he could get CHC funding. Fingers crossed for your poor sister.

Oh my word, how some of us end up in this situation as carers is awful. She is so deep in it that she won't see the wood for the trees. It's horrible. I feel for her all the way and hope that there is some light at the end of the tunnel in some shape or form. This is exactly what I go on about when it comes to carers. The government get paid, have set hours, go home at the end of the day so can switch off and - most importantly - GET ANNUAL LEAVE AND AN HR DEPARTMENT WHEN THEY ARE STRESSED OUT! What do we get?

bluepettals2 - you want to support your sister and that is understandable. However, she alone has to make the decision about continuing to care for him. It sounds as if she is downtrodden but she needs to know that she doesn’t have to do this. Would she listen if you explained this? She is quite within her rights to telephone, or write to social services to inform them that she is unwell and will be withdrawing care. If she is agreeable to this, could you take her on holiday or have her stay with you in order to recuperate?

If she wasn’t there social services would have to provide home care for him. By the sound of it he would need the maximum hours allowed so a residential home would probably be suggested.

If she is not agreeable to this then as has been suggested, ask for an urgent carers assessment. Regarding his skin problem, contact the surgery and request a district nurse to visit ASAP.

so complicated, we have been told his legs is not enough for CHC, social worker doing that checklist thursday and assessment to see how he is progressing on the ' up to 6 weeks freecare' which they dont really want to give'- he will have to pay as he has over the limit in savings anyway. he has only had free care ( re enablemnet for 2 weeks and 5 days, what do they expect after 5 weeks immobilised in hospital without any physio, with swollen puffy legs and feet, then 4 weeks in rehab carehome for 'intense workouts' which he never had. he can now with difficulty take himself to the toilet, but stillhas a longway to go, the ' re enablement free care agency' phsyio is pleased with his improvement so that will be recorded with social worker tomoro.

the care agency ( social care) tells me that he wil probably have to pay if he needs ongoing care because he 'doesnt need' healthcare as he hasnt got enough health needs to score 2 A's or 5 b's... he is at dermatology for the legs today so we will see what they say after his biospy on the blisters.

all they seeem to want to do is take financial assessments BEFORE chc done but that is wrong. i bought a book from Care to be different,-- and talk about the crafty ways of getting round to making people pay! if she refused care, i dont know how she would stand when or of he passed , where would she live? or how much they would take from his bank, and she isnt married to him, so would need a home when he passes, he is 89 that is if she doesnt go first!, i am not being merciless but she has to also think of her future at 72.- if she has still got one! if she walked out he could tear up his will and she would be left without a home, she deserves more than this. he also doesnt realise or want to even know that being a carer is stressful- he just exppects her to be at his beck n call all day, if she tries to tell him something,he rolls his eyes and snaps at her, she and me were talking about the stress because he wants me there tomoro with S.worker, i said if he keeps snapping i wont! she said she wieghs 9 and half stone now thru stress, she was 11 stone, she has not been 9 and half since she was a teenager, he snapped back at both of us-- this is about ME !!!!!!!- yes dont we know it!


Bella395 is completely right. Your sister needs to withdraw her care - what happens if she has a breakdown, someone will have to care for him then. It is better that she does it now and then ss will see just how difficult her life is and will hopefully give her more help. It is so important that she has a break! You have to impress on her that her needs are as important as his (in fact more as neither of them would survive if she cracked up). She needs to contact ss and tell them that she is going to be away for two weeks on such and such a date and ask them to arrange for his care whilst she is gone. This is vital for her wellbeing, it shouldn't all be about HIM and it doesn't sound as though he deserves so much from her anyway. Marriage is a two way street, it isn't a servant and master thing. If she goes away, he may appreciate how much he misses her. If he has some dementia or memory lapses, it may be that he won't understand this message in which case she can feel completely content to let others look after him if he doesn't appreciate what she does. Maybe the time has come for a nursing home for him.

Things could be made easier for her though - take her shopping and buy loads of ready meals or arrange for one of the 'meals on wheels' firms to deliver a week's supply of food. There is no reason why she needs to cook everything from scratch in her circumstances. It won't do them any harm to have ready made food and will take a lot of strain off her. She also needs to ask for someone to come to sit with him regularly - she will probably have to pay for this - to give her time to go out on her own (not time to be used shopping for him but time to meet a friend for coffee or meet up with you and go to the cinema or similar). I

If someone has been used to being used as a doormat, it is very hard to get the energy to change things but you can help her to be strong. Running herself into an early grave helps no-one, especially him.

Good luck, I hope she will listen to you.

As she is over 60 and has lived with this man for a long time I am wondering if mandatory disregard of the property comes into it. If it does, they cannot take the value of the house into account because it is your sister’s home. You could ask AgeUK about this.

From what you say, this has gone far enough and emergency respite care is needed. He probably won’t agree to it but if your sister withdraws care he will have no choice. Drastic measures but by the sound of things, very much needed.

She doesn’t need to walk out of the house - she could just go away on holiday or simply withdraw care. If he threatens to disinherit her she should seek legal advice because she may well have claim to the estate by virtue of the years they have spent together and the care she has given. The other thing that is worth thinking about is enquiring about council or housing association accommodation.

yes such a mess he put her on the deeds 2017 if they had been married it would be a lot easier, social worker been, he doesnt qualify for funded it is very very hard to get, i will have to monitor the situation , the physio is quite happy with his progress but its slow, it wouldnt be so bad if he didnt keep

demanding- get me get me get me, i said to him you can practise walking to the kitchen its a few steps and the physio said he can do this, but he gets bloody lazy, and rude, i am grumpy sitting wednesday and told her to go out for the day.. she wouldnt get council housing because she is on the deeds, albeit only since 2017 but there is such a shortage of social housing--

i watched george clark monday eve - he is on a mission for councils to build a certain amount of social housing each year, he said thereis no reason why the councils cant do this and that the thatcher gov should neverhave sold them off, themoney was not spent on replacing the council houses,

george has petitions everywhere, and now he has been given a plot in manchester and is building his own councilhousing- not sure how that will work maybe sell them to the council i cant remember but he is back on monday eve channel 4.

he is correct becuase the councills just say we are building affordable houses but george said AFFORDABLE IS not affordable for a lot of people..

Mrs thatcher did a real bad thing selling them off. that is what has caused the housing crisis and if george clark sees it why cant government. AND hugh fearnely whittaker has declared war on food waste, he was on tv, a couple of days ago and he is back next week, the supermarkets bin so much perfectly good food

at the end of the day, binraiders live off sneaking there at night, past 12midnight into the bins, the waste of good packaged food is obscene, with people starving, my sons friend couldnt stand it so gave the unsold meat away to pensioners so he got the sack from tesco. anyway back to care... and grumpy partners, i willhave to watch my sister and the partner...

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