What to do when mum might need to go into a home
Discussion
A very good friend of mine has been living with and looking after his mum for the last 15 years or so. To begin with, she was mainly just very emotionally dependant following the death of his dad, one of those ladies who suffered from "nerves" throughout life.
He himself was widowed very young, has a quite serious heart condition and in the last couple of years has had to stop work (self-employment) to look after her as things started to decline physically and mentally. He had already been retired on health grounds in his 40s and is now living on carers allowance and that small pension.
It has now got to the stage where she spends most of her time confused and distressed, is sleeping on a hospital bed in the living room of their terrace house, following a fall resulting in a broken hip (no 2) and knee, and he is really starting to tear his hair out.
She has carers in 4 times a day, but he is looking after her on his own for the rest of the time. And it's physically hard and demanding work. He had been getting respite for a few hours a week, but this was stopped.
He needs to look at moving into sheltered accommodation or her moving into a home. The problem is that he has nowhere to go himself, unless he can move with her or they get to retain the home. They remortgaged to adapt the home a few years ago on one of those "when you die" mortgages, so it's not like there's much money in the home.
He's not in the best frame of mind to work out what to do next, and I have no experience in this to be able to advise directly. However, from working with the elderly, I do know that you generally need to already know what the options are, as adult social services can't and won't advise/assist. I also think that part of his problem is that he doesn't know where to go with this, and this is starting to wear him down - just knowing what he could do would be a weight off.
So I was wondering if anyone could provide their thoughts please. I know I could try chartities such as help the aged, but I'm not able to do this kind of stuff during office hours.
He himself was widowed very young, has a quite serious heart condition and in the last couple of years has had to stop work (self-employment) to look after her as things started to decline physically and mentally. He had already been retired on health grounds in his 40s and is now living on carers allowance and that small pension.
It has now got to the stage where she spends most of her time confused and distressed, is sleeping on a hospital bed in the living room of their terrace house, following a fall resulting in a broken hip (no 2) and knee, and he is really starting to tear his hair out.
She has carers in 4 times a day, but he is looking after her on his own for the rest of the time. And it's physically hard and demanding work. He had been getting respite for a few hours a week, but this was stopped.
He needs to look at moving into sheltered accommodation or her moving into a home. The problem is that he has nowhere to go himself, unless he can move with her or they get to retain the home. They remortgaged to adapt the home a few years ago on one of those "when you die" mortgages, so it's not like there's much money in the home.
He's not in the best frame of mind to work out what to do next, and I have no experience in this to be able to advise directly. However, from working with the elderly, I do know that you generally need to already know what the options are, as adult social services can't and won't advise/assist. I also think that part of his problem is that he doesn't know where to go with this, and this is starting to wear him down - just knowing what he could do would be a weight off.
So I was wondering if anyone could provide their thoughts please. I know I could try chartities such as help the aged, but I'm not able to do this kind of stuff during office hours.
He needs to talk to the council to understand exactly what their arrangements are - some allow the home to be kept until the person in the home passes away so that the carers have somewhere to live. It may be that after the equity release (I assume that's what it was) there isn't enough equity left in the home to go over the limit for care home fees anyway.
13th said:
Tell your friend to contact Social Services; there is a huge amount of help out there. Get him to contact his GP and demand that a District Nurse visits, they will arrange home care. Whilst I dont agree the way things are run it is out there and available.
It sounds like social services etc are involved? (hospital bed & carers visiting)Speak to the adult social services section of your local council. mine here in leeds were lifesavers. I look after a blind partially deaf 99 year old great aunt who steadfastly refuses to go in a home. to be honest she doesn't have much quality of life and cant even leave the house, my mum and dad used to care for her but they retired and moved over 200 miles away, then my mum died suddenly, my ex sister then helped until she decided with her scum husband to burgle my house after i helped them out in a time when they had nowhere to go. came home from work to find my house emptied.... literally nothing but bare walls.... unforgivable, plus she had stolen 8 grand from my aunt. not spoken now in 4 years and cant wait to pee on her grave !! obviously police got involved but that's a different story.
Its now down to me to look after her. its hard its stressful and sometimes i feel its all a bit much , but still ive gotta do what ive gotta do, she looked after me as a kid its now what is needed of me. That said with her failing health , age etc i know this wont go on for much longer (don't want to sound mercenary or cruel, its a simple fact) One thing i do know is she made out a will leaving her lovely house and everything to me. she is aware of the pressure i'm under she 100% appreciates even the little things like last night we had some really good ham and pickle sandwiches left over so it took her some and some other odds and ends. Just the 20 minutes i spent that night and the fact i had thought to take her something nice was so appreciated.
its the tiny things that dont take us able folk 2 minutes that mean the world to the old. main thing is though CONTACT THE SOCIAL SERVICES... they have saved me from cracking up... when i went to greece for a week they arranged a a week in a respite home, it was holiday for me and she was happy too. remember the carer needs a break too. its hard, its soul destroying at times, its stressful but THERE IS HELP OUT THERE
!!!
Its now down to me to look after her. its hard its stressful and sometimes i feel its all a bit much , but still ive gotta do what ive gotta do, she looked after me as a kid its now what is needed of me. That said with her failing health , age etc i know this wont go on for much longer (don't want to sound mercenary or cruel, its a simple fact) One thing i do know is she made out a will leaving her lovely house and everything to me. she is aware of the pressure i'm under she 100% appreciates even the little things like last night we had some really good ham and pickle sandwiches left over so it took her some and some other odds and ends. Just the 20 minutes i spent that night and the fact i had thought to take her something nice was so appreciated.
its the tiny things that dont take us able folk 2 minutes that mean the world to the old. main thing is though CONTACT THE SOCIAL SERVICES... they have saved me from cracking up... when i went to greece for a week they arranged a a week in a respite home, it was holiday for me and she was happy too. remember the carer needs a break too. its hard, its soul destroying at times, its stressful but THERE IS HELP OUT THERE
!!!
He does have carers and district nurse visiting, and social services are involved albeit marginally.
The problem is, because she's not completely on his own, it is only now that she is completely confined to the bed that he's even got any assistance at all. Up till now, she wasn't entitled to anything because he was living in the home, and even then it's considered his responsibility.
Whilst social services are involved, there's no social worker and care has been sorted by the hospital due to her physical incapacities not social services. I take it that this is due to where he lives.
He is completely tied to her - she starts crying/shrieking if he leaves her on her own for more than a few minutes, so even preparing meals and going to the loo are becoming difficult.
The problem is, because she's not completely on his own, it is only now that she is completely confined to the bed that he's even got any assistance at all. Up till now, she wasn't entitled to anything because he was living in the home, and even then it's considered his responsibility.
Whilst social services are involved, there's no social worker and care has been sorted by the hospital due to her physical incapacities not social services. I take it that this is due to where he lives.
He is completely tied to her - she starts crying/shrieking if he leaves her on her own for more than a few minutes, so even preparing meals and going to the loo are becoming difficult.
Thanks for all of the replies and support.
I'll try to contact their local council to ask re carers living in the home and the requirement to sell the home to cover care fees. I know that there's more than £23k in the home, but not by a great deal.
My hope is that there are some free/charity services available somewhere for things like respite. She seems to be able to tolerate nurses/carers coming in when she won't allow any other family members (not that they're overly keen anyway).
I'll try to contact their local council to ask re carers living in the home and the requirement to sell the home to cover care fees. I know that there's more than £23k in the home, but not by a great deal.
My hope is that there are some free/charity services available somewhere for things like respite. She seems to be able to tolerate nurses/carers coming in when she won't allow any other family members (not that they're overly keen anyway).
Wish you all the best in getting the help you really need. the respite care was the trick with me. sometimes you just need a bit of time without the worry etc. today ive been down my aunts 4 times over nothing, it does get draining after a while and today i just about had enough.... i'll be there again this week though . it is hard but you are not on your own . theres plenty of us in this situation.
oldbanger said:
He does have carers and district nurse visiting, and social services are involved albeit marginally.
The problem is, because she's not completely on his own, it is only now that she is completely confined to the bed that he's even got any assistance at all. Up till now, she wasn't entitled to anything because he was living in the home, and even then it's considered his responsibility.
Whilst social services are involved, there's no social worker and care has been sorted by the hospital due to her physical incapacities not social services. I take it that this is due to where he lives.
He is completely tied to her - she starts crying/shrieking if he leaves her on her own for more than a few minutes, so even preparing meals and going to the loo are becoming difficult.
He has the right for his needs to be assessed (as the caregiver), not just hers. It's not just a question of her getting what she needs but how it impacts on his wellbeing (emotional and physical), too. Contacting social services and asking for a carers assessment is the starting point for this. If they're struggling then they absolutely should be on the books of a social worker, anyway. They generally are only meant to close a case if the person's needs are thought to be basically sorted, one way or another, and expected to need no further input from social services. This obviously isn't the case for these guys.The problem is, because she's not completely on his own, it is only now that she is completely confined to the bed that he's even got any assistance at all. Up till now, she wasn't entitled to anything because he was living in the home, and even then it's considered his responsibility.
Whilst social services are involved, there's no social worker and care has been sorted by the hospital due to her physical incapacities not social services. I take it that this is due to where he lives.
He is completely tied to her - she starts crying/shrieking if he leaves her on her own for more than a few minutes, so even preparing meals and going to the loo are becoming difficult.
It sounds like it would be a lot more suitable to have a support person there with her all day, or for a big portion of her waking day at least, so that she's not left on her own and has someone who is able to just concentrate on her for that time. There are various ways of acheiving this. If she's more-or-less bedbound now, and her care needs are significantly complicated by her cognitive/mental health issues, then it's very likely that she will now qualify for Continuing Healthcare (CHC) funding. This is an NHS funding stream for providing support for people with high-level needs - the criteria for getting it are very strict but once someone's on it it can potentially provide round-the-clock care at home if that's what's best for her (and it nearly always is).
Generally, district nurses are the people who can get CHC applications going (although any 'caring professional' can refer if it's thought appropriate). Information is then gathered from everyone that supports her and/or is involved in her care, medical and social, and they get together and work out if her needs are high enough to qualify for the funding.
If your friend and his mum actively don't want to go over to full-time at home support, then it might be that Respite At Home (as opposed to going off and staying somewhere else) is an option - this is where you get allocated chunks of time, might be one or two days a week (varies hugely) where someone comes in to take over the caregiving, with the specific goal of giving the regular caregiver a bit of a break.
While his life might be improved by her being moved into residential care, I guarantee that hers won't - she'll just be left to cry and shriek in a room at the end of a corridor somewhere with the door shut, instead. This might, possibly, for some families be the best of a set of terrible options, but anyone that tries to make out that it's in the mum's best interests is, at the very least, sorely mistaken. (I lived in one for 9 months. One of the crying-and-shrieking-when-left ladies had a room round the corner from mine.
)13th said:
Tell your friend to contact Social Services; there is a huge amount of help out there. Get him to contact his GP and demand that a District Nurse visits, they will arrange home care. Whilst I dont agree the way things are run it is out there and available.
Many social services departments are hugely rationing provision now - there's not nearly as much help out there as there should be and it's likely that the OP's mate and his ma are getting all that the local authority can/will provide - but the NHS may be able to help more as they have a few pots of ringfenced money for people whose care needs are so complex and high-level that they'd otherwise end up in an institution. BlackVanDyke said:
13th said:
Tell your friend to contact Social Services; there is a huge amount of help out there. Get him to contact his GP and demand that a District Nurse visits, they will arrange home care. Whilst I dont agree the way things are run it is out there and available.
Many social services departments are hugely rationing provision now - there's not nearly as much help out there as there should be and it's likely that the OP's mate and his ma are getting all that the local authority can/will provide - but the NHS may be able to help more as they have a few pots of ringfenced money for people whose care needs are so complex and high-level that they'd otherwise end up in an institution. 
Thanks for all of your earlier words of support and advice.
Just a quick update
He has got the 2 hours a week respite assistance reinstated. Not sure whether writing to the MP helped or whether he managed to get it escalated within SS himself.
What has helped (unfortunately) is that his own health is going downhill. He's due to go into hospital in a week for heart surgery - doctors are pushing it through as an urgent. So she is going to go into respite care for a week. I'm hoping if this is managed well, that this will help them both. It's certainly got things moving if nothing else.
Just a quick update
He has got the 2 hours a week respite assistance reinstated. Not sure whether writing to the MP helped or whether he managed to get it escalated within SS himself.
What has helped (unfortunately) is that his own health is going downhill. He's due to go into hospital in a week for heart surgery - doctors are pushing it through as an urgent. So she is going to go into respite care for a week. I'm hoping if this is managed well, that this will help them both. It's certainly got things moving if nothing else.
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