Common Threads Becoming Painful to Read?

[Bedelia]

Sally, your dad may not be as advanced as the relatives of some of us on here. It is true that it's unhelpful for people to be placed in residential care at too early a stage, particularly when others in their unit are more advanced and unable to interact socially or have distressing behaviours.

However, I very much agree with Delphie about the problems of getting someone to accept support to live independently, when they lack insight about their true capabilities and are consequently at daily risk of harm. Like Delphie, I was in this situation for many years with my mum.

Most people would prefer to stay in their own home, and those without dementia can make an informed choice. Their desire to stay in their own house may be tempered with some pragmatism, and regret at finally having to leave when they can no longer cope is an entirely understandable response.

However, the longing to go "home" in those with dementia is not so straightforward. It may persist (to an obsessive degree) wherever they are - including their own home. This is what tipped the balance for me. My mum had always made me promise not to put her in a home, but she could never have foreseen her own level of need with dementia (her own parents died of acute illness in their early 70s - she is now nearly 87 and has had escalating symptoms of dementia for more than a decade, nearer two, in terms of early symptoms).

After many years of crises living in her own home, she suddenly came to the point of not recognising the house (our family home of nearly 40 years), couldn't tell which was her bedroom, nor remember rooms on the other side of the door - basically, whatever she couldn't see in front of her didn't exist, and everything she could see was unfamiliar. She would be constantly begging to go "home", despite already being there, and accusing me of "dumping" her in "this empty hotel", which was her own house. She was constantly packing bags to "get out of here", even though she had no idea of where she might otherwise go. And it got to the point of being physically dangerous - she would be fleeing at night, leaving the front door wide open, totally oblivious to where she was or any logical purpose.

So, although we can all see that it's quite rational not to want to be in a care home, I'm afraid there is no real solution for the underlying impulse to flee or the desire to go "home", because ultimately that home is not the rational place you might have in mind (the real house that's having to be sold to fund care, in my mum's case), but the notional "home" of the person's happy past - usually childhood or youth. If you were to take them back there, it would still not satisfy, as it wouldn't be the same; what they're really longing for is the life they had then, with the people who took care of them (usually parents).

So please don't assume that care homes are always a bad option - they may well provide the best possible life-preserving care in circumstances that will never be ideal. I know that my mum would probably be dead now, if she were not in care. Physically, she's much better in care; mentally, she is as well as can be expected, given the symptoms of a cruel disease that cannot yet be treated or cured.

Here are a couple of blogposts I wrote on these issues:

http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html

http://dementiajustaintsexy.blogspot.co.uk/2013/03/whose-low-expectations.html

 

[SallyPotter]

Sally, your dad may not be as advanced as the relatives of some of us on here. It is true that it's unhelpful for people to be placed in residential care at too early a stage, particularly when others in their unit are more advanced and unable to interact socially or have distressing behaviours.

Bedilia, at the moment my father is constantly falling, he is pretty unable to talk, he recognises me as he daughter but has to be spoon fed, my mother has recently had her third hip operation, now unable to walk, lives in the past + goes between me being 16 and an infinite age, thinks I'm either at school or have children, neither of which are true. 2 parents with dementia is not an easy ride, I'm not being flippant, if it wasn't for care homes I probably would have already broken into my stash of 'help me' pills, I suppose for me its having to go suddenly from having 'supportive parents' to be cast, very lost and very alone into a wilderness.
My comment to Ed was basically that it is so hard to people who are unaware of the disease to accept what is being told to them, I have a feeling of 'letting down' my parents in not preventing them going. Yes, I wish I could have had the luxury of sitting at their bedsides while (being totally 'compos mentus') they stuffed this mortal coil, this aint going to happen. Its the way that the whole process with Best Interest et all is dropped from a height without any support or advice, its basically 'here you are, deal with it' I'm sure if doctors advise people of terminal illneses they do it with more tact!

 

[Witzend]

Hi, thank you for that - we're limited to which CH's we can get help with funding - though as I pointed out to Soc Ser - it would cost far less to have a fulltime carer for mum at home...oh, you probably know the rest. It's grim - mum keeps saying 'I have no future now' and 'Nothing good will happen to me now' - and she's right of course. It might be a bloke thing, but I'd rather be free and a nuisance TBH.

Are you sure about that? Twice we looked into full-time home care (day and night) for relatives - occasions were a few years apart - and each time it worked out at least as expensive as a reasonable care home, if not quite bit more. Of course it depends what stage someone is at, whether they're wandering at night, etc., but if someone needs 24/7 care that will often mean more than one carer on shifts, since nobody can reasonably be expected to cope single-handed for long periods without proper breaks and uninterrupted sleep (though I know all too well that masses of family carers do this, sometimes for years on end. )

 

[piedwarbler]

I have never seen anyone on this forum have a full time care package at home - it sounds like the perfect solution to all of us, I am sure, but in practice you would need overlapping shifts of 8 hours, so that is 3 carers to be emplyed full time, plus on costs, plus holiday cover - plus they need breaks so you would actually need 2 carers per shift! - it just isn't practicable unless you happen to have HRH in front of your name! Or are a guest at the Ritz!

 

[Witzend]

I have never seen anyone on this forum have a full time care package at home - it sounds like the perfect solution to all of us, I am sure, but in practice you would need overlapping shifts of 8 hours, so that is 3 carers to be emplyed full time, plus on costs, plus holiday cover - plus they need breaks so you would actually need 2 carers per shift! - it just isn't practicable unless you happen to have HRH in front of your name! Or are a guest at the Ritz!

Yes, you would need extremely deep pockets. I have just worked out that even if you could get someone for £7 an hour (highly unlikely) 24/7 care would work out at £61,320 a year. And that's without any NI, holiday pay or anything else.
Plus of course you have all the costs of running a home, food etc. on top.

 

[Lowlander]

Encourage the nursing home to change. Point out to management that the veterans of the wars are fewer now and some of the entertainement, music played etc needs to be updated from the 30's and 40's to the 50's and 60's now to keep current residents happy.

Find some voluntary entertainers yourself who do not know "White Cliffs of Dover" but can play Cliff Richard's greatest hits or Beatles songs and ask them to go to Mum's nursing home. Buy her the right equipment to play her favourite CD's and videos or DVDs, whichever she is familiar with.

There is no substitute for "home", no wonder we all want to go back there. But it is not the old reality they are thinking of it is some idealised situation they think they are remembering. But when that is not an option the good nursing home situation is one where all are there to keep the residents happy, whatever that takes to do. The more pro-active you are, the more you participate with some enthusiasm the more the "care home" will become simply "home". Or that is what I found anyway.

My husband is 70 years old and in a CH these last few months.
He is a few years older than me.
Yes the CH does play pop music, all day long from what I can gather. Modern stuff like Cliff Richard.(!)

My husband played Bach on his keyboard only a matter of months ago. He used to listen to Handel oratorio only a few days before entering the place, choosing and putting on his own CDs.
Then he entered the CH. He was locked out of his room all day, as are all the residents.
He soon lost the ability to use his stereo equipment. He lost all interest in the music he loved all his life.
Make no mistake about it, for many people, life in a CH must be the nearest thing to hell on earth.

 

[Helen33]

I got a full time care package for Alan to be cared for in our home whilst I had 2 nights of respite. I was awarded this 4 times per year because of the cost. I had to make up a good enough case as to why it was in his best interest to be in his own home and I was able to present my own case. I was told it would not get past panel but it did because the SW Manager agreed to present the case I had written up and not do her standard thing.

Unfortunately I only got one of these respites because Alan deteriorated badly all of a sudden through another illness. When he was dying I was given nearly round the clock care at home through the Hospice from Home nurses but Alan was awarded Continuing Health Care at that point.

Love
ps. I wouldn't fancy my chances now that all the services are being cut back. The services were never adequate in the first place and needed much more investment and funding but instead they cut back eeeeek.

 

[Lowlander]

The forum is starting to concern me.

I am wondering, with so many carers feeling so terrible, if there isn’t something fundamentally wrong with the care system? Not just for the sufferer, but for us all. There needs to be some sort of half measure between being cared for by loved ones or family members and being put away for your own good. Because it isn’t.[/QUOTE

I agree with everything you wrote.
Placing someone with severe dementia amongst other people with even more severe dementia is never going to help that person.
Given enough resources, MH could have stayed at home. But it's cheaper to put people away.
Problems start with for instance, showering. The CH rooms don't even have private shower facilities. There is one shower for the whole CH!
What person, in their right mind, even, would NOT object to being stripped by strangers?
I find the whole way of treating AD sufferers in a CH just incomprehensible.
I think My husband does too in his clearer moments. Basically, I hope he doesn't live much longer. (I certainly wouldn't want to if it were me being incarcerated in that way.)

 

[mowood]

My mum had care assistants at home 24/7. Whilst in hospital she was assessed as being eligible for CHC funding and was discharged to a 'nursing' home with one-to-one care provided by an agency employed by the home. The home only agreed to take my mum if the PCT funded the one-to-one care. I believe that the cost of the package was in the region of £3000 per week. After several weeks of observing the 'nursing' and 'care' being given to my mother, I decided that I could do better myself. Prior to her hospital admission mum had lived with me for some 13 years and the stress of watching her being neglected was worse than trying to cope myself. The support I received initially was zero but then as I realised I couldn't possibly manage to be up all day and all night, I asked the PCT for help. This came in the form of care assistants from an agency and was for a couple of nights only. As mum's condition became worse, I needed more help and eventually we had care assistants 24/7. This was all funded by CHC. Don't think for one minute that it fell into our lap - it didn't. Everything had to be fought for and fought hard for. It was exhausting looking after mum but more exhausting was dealing with all the garbage that came from the PCT Commissioners and Social Services. My mum died at home two years ago and in the weeks before her death, the PCT tried to remove the CHC funding saying that mum no longer qualified. I'm glad I managed to keep mum at home despite the toll it took on my own health and relationships. I have no doubt at all that it was the best place for her.

 

[Ed1964]

Yes, you would need extremely deep pockets. I have just worked out that even if you could get someone for £7 an hour (highly unlikely) 24/7 care would work out at £61,320 a year. And that's without any NI, holiday pay or anything else.
Plus of course you have all the costs of running a home, food etc. on top.

yes, of course, it depends on how you work it out. Frankly, none of the care workers that visted mum were 'qualified' in any way - salaried which is all that i would need would be 12.k p.a. for the 40hrs p.w. that i needed - think you wouldn't get anyone to do it? That depends on where you live I guess. I spoke to mums carers often about about money - they were always moaning about it, of course - just over min. wage, rarely a full week on rota, spilt shifts, no pay for travelling time etc.
Out here in the sticks, a full time regular job - or even a live in would be a popular one. And for 25k with free lodging, people would be queing up. Let's face it, most of the time, mum sits in a chair watching TV - or is asleep.
My original point to Soc Serv's was that I would do it myself for half of what the CH costs.
Mum was already paying for food/bills etc. so doesn't really matter for this equation.

Ed

 

[Ed1964]

There was a happy moment over the weekend. Mum persuaded one of the night staff to put Glastonbury on the TV and leave her to watch it. I did enjoy the comments 'Jagger is looking his age' - and 'Keith looks worse than I do...' She did follow by telling me to join a rock n roll band because 'no-one cares what they do, they don't get put away for being a bit weird....' so up and down.

 

[Lisa74]

I think that the way that things work is wrong. Care homes should be wonderful places, that emphasize keeping people healthy and active as long as possible, stimulate sufferer's intellect and highlight their abilities. People with dementia should (while still able) be able to talk to non-sufferers to sort of scaffold them at their present level for as long as possible.
However most people that work in care homes are young and poorly paid, the government is not interested in investing adequately in homes and unfortunately there are such huge numbers of elderly people these days that it is difficult to manage the situation.

My Granny lives with our family. For the family this situation is worse than if Granny was in a care home but for Granny it is better. It seems very difficult to find a situation in which everyone is happy and able to live full lives. At the moment we are definitely not living life to the full and I sometimes envy the life my Granny had at my age.

 

[Witzend]

yes, of course, it depends on how you work it out. Frankly, none of the care workers that visted mum were 'qualified' in any way - salaried which is all that i would need would be 12.k p.a. for the 40hrs p.w. that i needed - think you wouldn't get anyone to do it? That depends on where you live I guess. I spoke to mums carers often about about money - they were always moaning about it, of course - just over min. wage, rarely a full week on rota, spilt shifts, no pay for travelling time etc.
Out here in the sticks, a full time regular job - or even a live in would be a popular one. And for 25k with free lodging, people would be queing up. Let's face it, most of the time, mum sits in a chair watching TV - or is asleep.
My original point to Soc Serv's was that I would do it myself for half of what the CH costs.
Mum was already paying for food/bills etc. so doesn't really matter for this equation.

Ed

Yes, if your mother is relatively 'easy', I can see how that could work - if you could arrange and pay for it privately. But no doubt SS have far too many boxes to tick for this to come under their 'approved' heading.

It could never have worked for our relatives, since aspects of their illness (noisily up and down half the night just for starters) would have made it far too exhausting and stressful for just one person to cope with full-time.

 

[JMU]

I wish I felt able to put my dad into a care home. Not for selfish reasons ( but hey, I'm 31, a life of my own would be lovely), but because I know dad would be happier in a home, amongst regular companions and with constant care than he is currently.
I can't be here all the time- I work. Dad loves it when I am at home, even though he has no idea who I am, but half an hour after I am out of the door he has forgotten all about me and the anxiety of being alone kicks in. I know he spends hours each day wandering the streets looking for people to 'help' him, and there is nothing I can do.
A few months ago he spent a week at a lovely care home for respite. The building was beautiful, the gardens well cared for (unlike our own, which is unsafe for dad to wander in), the carers were kind and understanding. I wouldn't have minded staying there myself, and indeed, when I went back after a week, Dad didn't want to leave. He told me he lived there now! It took some effort to get him going again.
Of course after a few hours back home he had forgotten all about it.
When my dad talks about home he is not talking about here, this house, where he has lived for twenty years. I suspect he doesn't know what he thinks is home now. He has become convinced in the last week that his mum recently threw him out!
He never would have wanted this life for us. In fact he said so when he was still well. That all went out the minute he began to show signs of AD. And now I'm in the situation where I don't really have any control over what happens. He doesn't have the money to go into full time care, but has too much to get much help from social services. So we wait, and hope there's no disasters.

 

[Saffie]

Dad didn't want to leave. He told me he lived there now! It took some effort to get him going again.

How sad that your father didn't want to leave. Especially when so many of our loved ones who are in a home of some sort, are desperate to do just that.

He doesn't have the money to go into full time care, but has too much to get much help from social services.

I don't understand that - as once your father has spent what money, over £23,250 he has on Care home fees, the SS will come on board and help with the payments.

 

[Witzend]

I think that the way that things work is wrong. Care homes should be wonderful places, that emphasize keeping people healthy and active as long as possible, stimulate sufferer's intellect and highlight their abilities. People with dementia should (while still able) be able to talk to non-sufferers to sort of scaffold them at their present level for as long as possible.
However most people that work in care homes are young and poorly paid, the government is not interested in investing adequately in homes and unfortunately there are such huge numbers of elderly people these days that it is difficult to manage the situation.


To be fair, I do think many care homes do their very best, but no matter how lovely the home, how kind and well-trained the staff, sadly some residents will never be happy. They will always be restlessly or fretfully hankering after something or somewhere nobody can give them or take them to any more.


Equally, many will get to the stage where they are no longer capable, or no longer want to, take part in activities. I think it can be difficult for non-sufferers - especially the sort of people who are constantly busy - to accept that people do just want to sit, or to wander about, and are simply not interested any more in being 'busy'. My mother's CH has had trouble with wretched CQC inspectors insisting that residents should not be 'just sitting' - even when those residents are no longer capable of enjoying activities, and in fact really, absolutely, don't want to be bothered. They have apparently taken very little notice of the stages people are at, or even differences of personality - they seem to assume that they should all be happily and busily joining in.

Also, as many here will know, quite a few sufferers get to the stage where they're not happy anywhere, and are restless and fretful and hankering for 'elsewhere' even in the home where they've lived for decades.

 

[JMU]

Yes I could put him in a home now, but he would fall below the threshold probably within a few months. That doesn't bother me. I don't care if all his money goes on care, but what happens if SS says that he shouldn't be in a home at that point? They have been happy enough to leave me with all the caring so far. In fact his social worker left last month and didn't bother to find us a replacement.
Yes I have had a bad experience with them, the SW we did have was about as communicative as a brick- as was confirmed with dad's care manager just this morning. We met for the first time today. She is so disgusted about the fact that I have been left to cope completely on my own that she has said she will look into options for us. I have little hope of it coming to anything.
He also owns our home. Because I am his daughter, and I am not at an age, or with a disability that would give me automatic right to this house, it is possible the LA would only take on payments with the proviso that they are paid back by the sale of it. I have been told this may not be the case, but legally I suspect I have little say in it. And this is my home. I have nothing else.

 

[Saffie]

Because I am his daughter, and I am not at an age, or with a disability that would give me automatic right to this house, it is possible the LA would only take on payments with the proviso that they are paid back by the sale of it. I have been told this may not be the case, but legally I suspect I have little say in it. And this is my home. I have nothing else.

O dear, yes, that does make a difference. I think it might help that you are his carer though.

 

[JonathanG]

He also owns our home. Because I am his daughter, and I am not at an age, or with a disability that would give me automatic right to this house, it is possible the LA would only take on payments with the proviso that they are paid back by the sale of it. I have been told this may not be the case, but legally I suspect I have little say in it. And this is my home. I have nothing else.

I found myself in a similar situation recently as we prepared my grandmother for permanent residential care.
As her grandson I gave up full time work to become her carer. With no savings her home became my home and I worried that I might face losing the roof over my head when she finally made the move.
However, the SW has been extremely helpful in presenting a case to the panel and I have been allowed to remain here until a reasonable period of time for me to find full time work, build up savings again, and get a place of my own. These are discretionary powers but you should definitely push for them.
Now I just have to wait on a decision for CHC, otherwise we are looking at deferred payments until I move out.

 

[Ed1964]

Yes, if your mother is relatively 'easy', I can see how that could work - if you could arrange and pay for it privately. But no doubt SS have far too many boxes to tick for this to come under their 'approved' heading.

It could never have worked for our relatives, since aspects of their illness (noisily up and down half the night just for starters) would have made it far too exhausting and stressful for just one person to cope with full-time.

Yes, you're absolutely spot on there - ticking the boxes. I have sympathy for SW's, in view of how high profile things become when they get it wrong (nobody's perfect), or miss something with tragic consequences. This may be why we appear to have abcd you're out - or in. Also appreciate how complex the legislation, advice etc., are, but mum's SW has a caseload of 40 clients - not massive - and the system perhaps should be open to suggestions of alternatives....