Care home dilemas

[joco1]

Hi I am writing my first post although I have been "lurking" for some time learning and gaining knowledge of what is in front of me.
My mother aged 87 (today) has vascular dementia. Diagnosed about 6 months ago she has been unable to hide symptoms for about 2 years. In the last year things have taken a decided downturn , along with increased confusion a general quietness , continued desire to go home even when at home she has had a great number of falls. These resulted in 2 brain bleeds, broken wrist broken pelvis broken foot . All separate falls.
In November she fell against my father and this resulted in him being hospitalised for a revision and replacement of his hip replacement. He is now faecally incontinent and wheelchair mobile with the ability to transfer from chair to bed with assistance.
During his hospital stay mum came to stay with me. I was unable to leave her alone in the house, we slept in the same bed as I needed to help her to toilet. She needs personal care and companionship. Dad was hospitalised for over 2 months.
On discharge we realised as a family they could not go back to living independently with my support 2 days a week and carers as they had previously done. I live about 2 hrs drive away.
I looked around at care homes in my location, I hoped that I could have them in safety and care together but close enough for me both to visit and bring them to my home. As I looked at the different homes I became sadder and sadder. Everything was so impersonal small student type single rooms, residents sitting but not watching the tv or interacting. I didn't want this and neither did they. They have not descended to this level yet. Dad is an avid bridge player and mum is till capable of conversation but no longer initiates it.
Finally I found a home that appears so much more than the others. Superficially so better presented with excellent facilities , a spa bath an activities programme etc etc. I grasped this hope. Here I thought maybe I had found it.
Mum and dad have been here for 3 weeks or so. The staff themselves are generally lovely. I know there can never be enough of them but really there aren't. Mum is desperately tired and sleeps most of the afternoon on her bed and wants to go to bed at 6pm. Unfortunately no one is available to do that so on a number of occasions she has been found wandering naked along the corridor because no one has come to her buzzer and she cant find a nightdress. Dad asks to go to bed at about 8 but it has sometimes been approaching midnight before the staff can get round to getting him to bed. because both are in a wheelchair they are taken to the dining room early and leave up to an hour after the meal because they need assistance. The lack of independence and their distress makes me visit daily.
I would love for them to have more care and here is the question I am really wanting to ask. This is a residential home and although they have taken my parents in I feel their needs exceed what they can or do provide. The staff /patient ratio is ok( maybe) if these were independently mobile or non dementia sufferers but the vast majority are and the girls acknowledge they are restricted in how much time they can give to an individual. My parents could afford to pay more but if I arrange to transfer them to a nursing home is this just the same ration of staff just with some of them being qualified nurses.This really is the home with the best local reputation and yet I can see they struggle. My parents do not need qualified staff they need time with an individual. To this end I have been going in from 12 pm till 6 to ensure they can get away from mealtimes without too much of a wait to ensure mum goes to bed and that dad has someone to vent his frustrations. Now the home are quite happy for me to do this, I can also engage a private physio to work with dad for his mobility but how would they react if I asked to employ someone to help with my parents personal care in the mornings and at night when I cant. I am wanting to pay someone to do the job I am doing for them to allow me respite etc. I feel at the moment without my support they would struggle and be even more unhappy. I cant find a better home but the best is not good enough. Has anyone ever tried this. How do you broach it without seeming critical of their care. Where do I go from here. Sorry for the long post. when I read it through I don't think it demonstrates the absolute anguish and sadness I feel. How do I help apart from doing it myself?

 

[marionq]

I dont know anyone who does this but why not? If the person you employ were a daughter or sister then no one would object so the only difference is that money is changing hands. In fact if you talk to the manager she might even be able to recommend someone suitable.

Give it a go. Good luck.

 

[starryuk]

Good morning, joco.
I also wanted some extra attention for my mum in her care home, although more for companionship than anything else. It sounded simple, but the manager started talking about legalities and who would be responsible if there were an accident.
In the end I hired someone quietly and told the care home she was just a friend. But that was only for a couple of hours a week.
You might be able to organise some 1:1 care if the care home employ someone though. Give it a try and let us know. I hope you can work something out for your parents.

 

[Helly68]

Some homes do accept this. My mother had a series of falls and had these continued, one of the discussed ideas was her having a carer one to one. This would have been extremely expensive as the LA wouldn't pay for something like this.
Eventually it wasn't needed, I would say give things a bit of time for everyone to settle down - it is a big change. If you are thinking of a nursing home, go and ask specifically about staffing numbers. The sad fact is that this kind of care is run as a business, and I would be surprised if you got much higher staffing rations, simply because this is a big cost and the business model for care homes, the margins are very tight. Sounds awful to say this but it is sadly true.

 

[joco1]

Thank you so very much everyone that replied. I feel as if I am on an emotional rollercoaster. I have just taken a very distressed phone call from my father. He and my mother were wheeled into a lounge to hear a musician with half of the other residents. As I have said mum is desperately exhausted and wants to go to bed after the evening meal. Here they were left stranded with musician with no carers to be seen. Mum who isn't supposed to walk got up from her wheelchair after 45 mins and interrupted the musician to beg that he got her help . She needed the bathroom and was exhausted. Unfortunately even though alerted no one came . My father became desperate as she exited the room alone with no stick or walking aid and no carers about. He rang me from his mobile phone agitated and anxious and terrified. I really don't know how I can be confident they are safe . Dad is getting a reputation with the home as someone who shouts because he is so anxious. They have told him to say please and thank you. I don't know what to do for the best. At the end of their lives the care we buy for our parents should be better and I feel negligent in watching it happen but don't know how to correct it save by being there myself. Is the only way to adapt home to employ someone to care on a one to one basis??

 

[Sirena]

I think that actually you *can* find a better care home. Forget about the 'hotel/spa bath' type facilities, that is not what your parents need. They don't need a nursing home either from what you say. They need a care home where the staff can give them the correct help and care.

My mother has been in a dementia care home for a year. It is not swish or top-end expensive, it is a homely, relaxed comfortable place where the carers respect and understand the residents' needs. No one would ever be left for hours on end waiting to go to bed, left feeling anxious or having to 'beg' for help. Wheelchair users or residents who need hoisting are not left waiting. If my mother wants to go to bed at 6, or wander round at 2 a.m., a carer will be there to facilitate that. I never worry that she is unsafe or anxious. Her care home offers double rooms for couples, they are not fancy but they are comfortable.

So there is no reason you should have to employ a dedicated carer, you just need to find a care home which will look after their needs. From what you have said, they are self funding so it should be possible. If you then feel they need additional stimulation, you can supply that more easily than you can supply basic routine personal care. Look at the care which is offered, rather than the swish superficial facilities which are far less important.

 

[joco1]

Thanks Sirena, Now how do I assess this. I went to all the local homes. I didn't just jump blindly. Yes I thought it looked nice, clean and it didn't smell of incontinance and there was a program of activities etc It had hoists and well qualified staff and good cqc reports. It has fabulous online reviews from residents and relatives saying how excellent the care is. As I say individually the staff are lovely but seem overworked without the time. I thought I had looked beyond the furnishings, I saw the reviews, everything looked to me to be good but the reality of life in here is destroying him. His head is down. The stress makes my dad especially grumpy and disenchanted and I think he comes over rude and ungrateful. Yes he is impatient and even perhaps demanding. Wherever he is, it is an adaptation from a previous life when mum was well and to be honest he had a lovely easy life. Is it him unable to cope or the home unable to respond to his needs?

 

[canary]

I think it is the home being unable to respond to his needs @joco1

Im with @Sirena here. My mum was in a care home that was very scruffy (though clean), needed decorating and didnt have spas/cinema/bells and whistles. It is all too easy to look at somewhere and think about whether we would like it, or whether the person with dementia would have liked it in the past, rather than thinking about what they need. Mum didnt need a hotel, she needed people. Ask what the staff to resident ratio is and compare it to the place she is in now. I was told that the places that look so amazing tend to put their money there rather than with the staffing levels and the staff often dont have the training and experience to deal with dementia. When you visit dont get blinded by the facilities (that they probably will never use) - look at the carers and see how they interact with the residents. Are there areas with no staff in sight? How do they cope when someone gets distressed? Are there other residents who need a similar level of care? Are there people who are more advanced than your parents? If the answer to that last question is "no" then it is very likely that once someone reaches a certain level then they are given notice to find somewhere else.

 

[Sirena]

Is it him unable to cope or the home unable to respond to his needs?

If you read back your previous posts, you have answered your own question. No-one answers the buzzer. Noone is available to take your mother to bed. A 45 minute wait and still no carer arrives. If your father has accurately reported these things, that is not a case of someone being overly demanding. I am shocked that residents are ever left in a room with no carers. There are always four carers coming and going in my mother's CH lounge, taking residents to the loo, helping them mobilise, chatting to residents and checking if anyone needs anything.

@canary has given great advice on how to assess if a CH can meet your parents' needs. Observe how the staff react to the residents, ask the staff-resident ratio, see if the residents seem contented - is anyone struggling without help? Ask the manager how they would deal with any issues you are worried about. A 'studenty' bedroom isn't a problem, and it will look entirely different when all your parents things are in there. The only deal breaker for me was a smell of wee - that would be an immediate no.

There is a CH nearby which is all bells and whistles - cinema, beauty salon, bar and bistro. It is the relatives who choose the placement and leave the reviews - so the CH gets great reviews. But the residents barely use these facilities. My friend's mother was at a 'hotel' type CH, and my friend said she wished it was a bit less swish and a bit more caring. In the end, they put her mother on notice to leave because she was too 'difficult'. Great facilities, poor standard of care.

 

[ANITRAM]

As Sirena says I think you have already answered your own question about whether this is a “good” care home . However , I would like to defend the 5 star hotel type home . My MIL is currently in this type of home ( not our first choice but was the only CH that responded as an emergency at Christmas time ) as I feel that although some of the residents may not appreciate the “bells and whistles “ the visitors / relatives certainly seem to feel a little more comfortable attending the home . I visited 8+ homes ranging from purpose built hospital style to a mix up of large formerly private houses with various extensions to the “hotel” style . The most important requirement as far as I can see is the standard of care - this is what you must sort . I am lucky in that although my MIL is not settled I cannot question the care she is getting . Speak to the CH manager and get this sorted or give notice to move your parents . Hope things improve for you soon x

 

[Sirena]

As Sirena says I think you have already answered your own question about whether this is a “good” care home . However , I would like to defend the 5 star hotel type home . My MIL is currently in this type of home ( not our first choice but was the only CH that responded as an emergency at Christmas time ) as I feel that although some of the residents may not appreciate the “bells and whistles “ the visitors / relatives certainly seem to feel a little more comfortable attending the home . I visited 8+ homes ranging from purpose built hospital style to a mix up of large formerly private houses with various extensions to the “hotel” style . The most important requirement as far as I can see is the standard of care - this is what you must sort . I am lucky in that although my MIL is not settled I cannot question the care she is getting . Speak to the CH manager and get this sorted or give notice to move your parents . Hope things improve for you soon x

I agree the first step is to speak to the manager, although if the father's reports are accurate they have a lot of ground to make up.

You are right that visitors may be happier visiting a 5 star hotel-type CH - IMO that really is what it's about, making the relatives feel better about it. But the priority is the residents' experience. If the 5 star can provide excellent care as well that's great but it will probably be considerably more expensive. The posh one nearby is about £300 a week more than my mother's - that's £15k a year. When I chose my mother's care home I put myself in her shoes (as much as that is possible!) and thought "If I absolutely had to live here myself, would that be okay?" And it would. It has a lovely atmosphere, fantastic staff, and the most important thing is that it genuinely feels like 'home'. (And no smell of wee!)

 

[Staypositive]

Hi I am writing my first post although I have been "lurking" for some time learning and gaining knowledge of what is in front of me.
My mother aged 87 (today) has vascular dementia. Diagnosed about 6 months ago she has been unable to hide symptoms for about 2 years. In the last year things have taken a decided downturn , along with increased confusion a general quietness , continued desire to go home even when at home she has had a great number of falls. These resulted in 2 brain bleeds, broken wrist broken pelvis broken foot . All separate falls.
In November she fell against my father and this resulted in him being hospitalised for a revision and replacement of his hip replacement. He is now faecally incontinent and wheelchair mobile with the ability to transfer from chair to bed with assistance.
During his hospital stay mum came to stay with me. I was unable to leave her alone in the house, we slept in the same bed as I needed to help her to toilet. She needs personal care and companionship. Dad was hospitalised for over 2 months.
On discharge we realised as a family they could not go back to living independently with my support 2 days a week and carers as they had previously done. I live about 2 hrs drive away.
I looked around at care homes in my location, I hoped that I could have them in safety and care together but close enough for me both to visit and bring them to my home. As I looked at the different homes I became sadder and sadder. Everything was so impersonal small student type single rooms, residents sitting but not watching the tv or interacting. I didn't want this and neither did they. They have not descended to this level yet. Dad is an avid bridge player and mum is till capable of conversation but no longer initiates it.
Finally I found a home that appears so much more than the others. Superficially so better presented with excellent facilities , a spa bath an activities programme etc etc. I grasped this hope. Here I thought maybe I had found it.
Mum and dad have been here for 3 weeks or so. The staff themselves are generally lovely. I know there can never be enough of them but really there aren't. Mum is desperately tired and sleeps most of the afternoon on her bed and wants to go to bed at 6pm. Unfortunately no one is available to do that so on a number of occasions she has been found wandering naked along the corridor because no one has come to her buzzer and she cant find a nightdress. Dad asks to go to bed at about 8 but it has sometimes been approaching midnight before the staff can get round to getting him to bed. because both are in a wheelchair they are taken to the dining room early and leave up to an hour after the meal because they need assistance. The lack of independence and their distress makes me visit daily.
I would love for them to have more care and here is the question I am really wanting to ask. This is a residential home and although they have taken my parents in I feel their needs exceed what they can or do provide. The staff /patient ratio is ok( maybe) if these were independently mobile or non dementia sufferers but the vast majority are and the girls acknowledge they are restricted in how much time they can give to an individual. My parents could afford to pay more but if I arrange to transfer them to a nursing home is this just the same ration of staff just with some of them being qualified nurses.This really is the home with the best local reputation and yet I can see they struggle. My parents do not need qualified staff they need time with an individual. To this end I have been going in from 12 pm till 6 to ensure they can get away from mealtimes without too much of a wait to ensure mum goes to bed and that dad has someone to vent his frustrations. Now the home are quite happy for me to do this, I can also engage a private physio to work with dad for his mobility but how would they react if I asked to employ someone to help with my parents personal care in the mornings and at night when I cant. I am wanting to pay someone to do the job I am doing for them to allow me respite etc. I feel at the moment without my support they would struggle and be even more unhappy. I cant find a better home but the best is not good enough. Has anyone ever tried this. How do you broach it without seeming critical of their care. Where do I go from here. Sorry for the long post. when I read it through I don't think it demonstrates the absolute anguish and sadness I feel. How do I help apart from doing it myself?

 

[Staypositive]

Hi member, I know exactly how you feel . As a daughter you feel so frustrated as all you want is the best for parents . I have young children and feel so upset that I can’t look after my Dad full time .
My Dad has had Alzheimer’s for 7 years and all of a sudden he seems to have deteriorated forgetting how to swallow at times , use the toilet , with a glazed look in his eyes on and off .
In both care homes Dad has been in we have hired a private carer for 4 years working 10-5 pm with flexibility for other hours . This gives me peace of mind as I panic everyday how he is . The Care home agreed as it helps them . The next Care home we introduced them , by that time they were Dads friends now as private company.
You need to do this for them and yourself . You can’t change Care homes and staff mentality unless you move your parents to flat with full time carers xx

 

[ANITRAM]

Finding full time care at home is difficult ( we tried it ) and I’m not sure paying the CH fees AND the cost of a private carer is within the reach financially for many people . I don’t think that anyone should have to consider this option and my advice stil remains to speak to the CH manager and try and resolve .

 

[Staypositive]

Finding full time care at home is difficult ( we tried it ) and I’m not sure paying the CH fees AND the cost of a private carer is within the reach financially for many people . I don’t think that anyone should have to consider this option and my advice stil remains to speak to the CH manager and try and resolve .

Finding full time care at home is difficult ( we tried it ) and I’m not sure paying the CH fees AND the cost of a private carer is within the reach financially for many people . I don’t think that anyone should have to consider this option and my advice stil remains to speak to the CH manager and try and resolve .

Finding full time care at home is difficult ( we tried it ) and I’m not sure paying the CH fees AND the cost of a private carer is within the reach financially for many people . I don’t think that anyone should have to consider this option and my advice stil remains to speak to the CH manager and try and resolve .

 

[Staypositive]

Dear member, I am a nurse frustrated with the care system there are a few homes that will change following discussions . Although I agree this is needed and care plans change in accordance to this would be great . However , as family we cannot rely Just on care homes to provide excellent care our relatives deserve .
People should make their concerns felt to managers and the managers should listen . The reality is unless the home is exceptional if the staff have not done what is expected then how can we change that from a meeting .
I have had so much experience in nursing 19 years and having my Dad in care home , which for all of us is not how I wanted but I visit all the time and work .

I agree not all can afford this , but this lady was asking advice on if this was possible . The answer I gave shows it is , most people are unaware if homes accept this that this can be done . It’s beneficial to the resident and the care home .

The care manager needs to explain her staff ratio to residents. If not responsive to taking action , the manager , then anonymous you can call CQC to report concern if unsafe .

If home is not accepting could even say it is a visitor . Care costs £9/hr even a few hours a day is beneficial . Also if someone is aggressive the care home can apply for funding for extra help .

What you have to be careful is if they are not going to change and things get impossible the home can serve notice . It happened to us as we kept having meetings about issues , they saw it that the care home was not meeting Dad’s means , gave short notice .

 

[Kipster]

I never thought I would feel so dreadful about placing my Mum in a care home. She has been living quite well in her own home with a good care package and lots of support from me. In the last 6 months her night time behaviour has become more and more erratic and after a few falls, increasing confusion and incontinence issues I have reached the conclusion with Mum’s social worker that 24/7 care is the only solution. We can not afford to pay for 24/7 care at home so a care home is the only option unless I move in with Mum or bring her to live with me. I know that I won’t cope well with being 24/7 carer and feel very guilty about ruling this out. As an only child the responsibility is all mine and it feels very lonely to be making decisions on behalf of someone without their consent.

Mum is currently in respite care near her home and after visiting a dozen care homes I think I may have found a good one, for a more permanent move, but understand that the proof of the pudding will be in the eating. The care home is close to my house and will enable me to visit often and take my Mum out but far from her home and community, which I regret. The hardest part is the sense of abandoning Mum to the care of others in an unfamiliar environment. It just feels so wrong and I am hoping that eventually something that seems so alien will become the new normal.

 

[canary]

Hi @Kipster Im glad you have found a care home which seems good. I think it is more important for your mum that she is nearer you - community will not visit and will abandon her, but you will not (whatever the guilt monster whispers in your ear)
It does seem alien to start with, but you will both adjust - it will not stay unfamiliar and the staff and residents will become friends, not strangers.

 

[Sirena]

Canary is absolutely right, it is important your mum is near you so that you can visit. I too am an only child and had to make all the decisions, a year ago I moved my mother to a care home near me, a long distance from where she lived. Within two months it had become her new home, she loved it and she never mentions her old life. At the moment the whole concept of a care home is alien to you, and that takes getting used to. I used to have to steel myself for every visit in the first few months, but now it is as you say, the new normal. You're doing the right thing.

As for her friends, only one of them kept in touch. The others lost interest as soon as she left her flat, it was as if she no longer existed.

 

[Kipster]

Hi @Kipster Im glad you have found a care home which seems good. I think it is more important for your mum that she is nearer you - community will not visit and will abandon her, but you will not (whatever the guilt monster whispers in your ear)
It does seem alien to start with, but you will both adjust - it will not stay unfamiliar and the staff and residents will become friends, not strangers.

Hi Canary many thanks for the reply and reassurance. My head says it’s the right decision but it’s hard to be rational in these situations. Best regards.