carers are withdrawing after 10 days! please help

[babypie]

Hi All

I am not a new member but had great help three years ago when my poor mom had dementia (now passed) that I thought I could ask for help again. Have forgotten original log in so I am an "old newbie"

My Dad 86 was just diagnosed with A.D, and, like many people on here I knew he had it, mainly from very severe sun downing, but on many visits to GP I was met with a smile and an assurance he did not have Dementia as he asked him two memory questions and Dad got them right!

Anyway things had also gone horribly wrong in the 6 months leading up to the diagnosis, mainly from the way Dad has been living.I would be here all day if I went into it all but house is terribly filthy, covered in excrement, maggots in fridge,carpets filthy with all manner of things and personal hygiene terrible and on-off double incontinence. Has a "friend" to clean one hour a week who is not the best to say the least!

I am unofficial carer and up till 6 months ago was keeping on top of a lot of it but I have a disability on my back and I had to have an operation so have had to withdrawn somewhat. Still do all docs, hospital appointments, shopping and washing and ironing.

Anyway I tried my best to get Dad carers in and eventually the Social services came round and offered a care package. He listened to it all then said " no way, goodbye" Things were then taken out of my hands and Dad admitted to hospital after fall, kept in 6 weeks, mobility bad, the on off incontinence, much confusion and wandering that I asked for full MMSE. They did better than that, did a brain scan and identified Alzhimers changes on old Infract (whatever that means) So, a care package was arranged for dads discharge, 6 weeks social services enablement package. I was so,so,impressed as to what they were going to do-all cooking, tidying up, mopping, shower him, all medications taken care of,I felt so much stress was going off my head and Dad was going to be clean, fed, house tidy etc.

So, Here we are 10 days in and whats happened? from hour one he has refused their help, wont let them dress him, he does not shower,puts filthy smelling of urine clothes on. He will let them make him food and tidy up, like they are some maid service. They changed to a man( in case of embarrassment issues) but still the same. He also now keeps leaving the gas on with frying pans on it and they have called two emergency meetings to talk to him and explain he has to accept help and they cant be there just to do domestic duties and do him a bacon sandwich. He is being most, most rude and nasty and has basically told them to get stuffed. Friday 23rd march was last meeting with boss of carers and two high ranking social workers telling him he has to comply or they are withdrawing. He does understand and told them to get lost too! he wont wear his incontinent pads and they are going in having to deal with all that mess. I took him shopping last week, was filthy and smelt of urine, we never row,I am very soft and unassertive (a doormat maybe?) but I had to tell him I wont take him out like that again, he said mind your own business and added he didn't give a monkeys about how he looked.

I have edited my post, forgot to add has already spent 12 hours overnight on floor,since been discharged following fall, paramedics called in morning but deemed OK I keep trying to tell anyone that will listen this will end in disaster, a fall downstairs or set place on fire-all I keep hearing is "capacity,capacity,capacity "and he is allowed to make "unwise decisions"

Up to date, the carers boss and the social worker have rang today and said they are making plans to withdraw, saying he has much capacity and they cant force him. I am so upset and angry at dad, he says they cant force him to have a wash! Its all going to fall back into my lap,the way he lives and the mess in indescribable and all credit to them for doing above and beyond the last 10 days to keep it nice. Today the "help the aged" did a deep clean and even he said the machines are finding it hard to cope with all dried in pooh and rubbish on floor. It will be back to square one in a couple of days!

What can I do? I feel I have to withdraw myself now, still see Dad and still do what I do now but not go in the house when the carers are out of the picture( how can I let him wallow in pooh and live like it though?), my health (including mental health) is suffering, as is my relationship with my fiance and my children. I feel I eat, live and breathe Dad and I am at wits end now. He always said he wont pay any of his attendance allowance after the 6 weeks to private carers as "why should he" So I suppose this was all going to end then anyway to be honest.Also he is not a poor struggling pensioner, has 20k in bank.

Sorry if I have gone on, just feel I worked SO hard to get dads standard of living good and its all going belly up! By the way he scored 22/30 on test so does have very decent capacity.

Thanks for any help/advice in advance

[BeckyJan]

Hello Babypie and welcome back to Talking Point.

I am so sorry to hear all this and believe you have coped magnificently so far. Sadly if your Dad does not want help it cannot be forced on him. Well not until he becomes a danger to himself or others and then a Sectioning process should take place.

If he is leaving things on the gas fire or leaving it on in a dangerous way, I think you should write with a list of such things to the Head of Social Services with copies to Mental Health Consultant and GP. Say you believe your Dad is at risk if left alone (even though you understand the carers' points of view).

Then it will be horrible for you and your Dad as he will be taken to a Mental Health Assessment Unit totally against his will. BUT this has happened to others and has worked out for the best as it is the lead into correct care and attention.

My sincere apologies if this sounds harsh - it is intended to show you there will be a way although not pleasant at first.

I am so sorry - wish I could think of something easier for you.
Best wishes

[littlegem]

Hello babypie,

So sorry you are having trouble with SS.
I'm afraid this seems to be the norm now.
I was on 2 crutches, non weight bearing after a hip revision and SS left us to cope alone. The care workers 'lied' about how much hubby can do just to tick the boxes and leave.
I would suggest getting in touch with your local MP BEFORE the carers leave, it might prevent them abandoning you and your Dad.
Personally I do not know how the SS can sleep at night.
Good luck and keep up the pressure on people.

[sussexsue]

Hi Babypie

I have no real advice, as fortunately we have never had these sort of problems, but my heart goes out to you.

How was he in hospital? Did he accept support there ?

Would just add that 22/30 is not that great a score. Even at a score of 27 my mum was unable to look after herself, and even now in a Care Home, requiring significant assistance she is scoring 16. By the sounds of it your dad has major issues, especially if he is semi-incontinent.

Sue xx

[Nebiroth]

I'm trying to square the social worker's argument that your dad "has capacity" and yet does things that put his, and other's, lives in danger.

Unfortunately some people who do have capacity manage to live in the most squalid of conditions, for various reasons. But your dad is quite obviously endangering his own life with the way he is living (in that there's a serious risk of disease) and dangerous behaviors (like leaving the gas on under pans).

Unfortunately, things have now reached the stage where your dad can't make rational choices for himself so they will have to be taken for him, probably against his wishes.

I'd contact your dad's Gp and social worker and point out all the things you have and say how worried you are that he is a "vulnerable person" and "at risk".

Do remember that his doctor and social services have a legal duty of care which means they MUST act, in law you are not responsible for your dad's safety and welfare, they are.

Even if that weren't the case you are clearly not in the position to do it all because of your own difficulties.

At the end of the day I'm sorry to say that it will most likely come down to your dad being forced to accept the help he needs regardless of his wishes.

I suspect that ultimately it would involve either a section under the mental health act or later on a deprivation of liberty.

Under a section order your dad would have no choice but to comply and can be physically compelled (but only by the police or restrained by hospital staff)

It's always sad when this happens but it is relatively common, not least because in many people with dementia the disease takes away the capacity they need to recognise their own lack of capacity (if this makes sense). It is certainly extremely common for someone with dementia to think that they are living perfectly normally and that there is nothing wrong with them.

Unfortunately your dad's agression is likely a personality change triggered by the disease, or possibly just a reaction to people telling him things he doesn't believe or want to hear. Sadly a complete disregard to personal hygiene is common, too.

He might also have paranoid beliefs or fixations about his money, or sees no reason to spend it when "there is nothing wrong".

This false belief/denial is often what makes caring for the demented ten times harder than it might be!

An infarct, by the way, refers to a lesion in an area of the body, in essence a scar of dead tissue that is the result of loss of blood supply to it. This means that the area is deprived of oxygen and it therefore dies. If the brain is involved this is called a cerebral infarction and it can be caused by a blood vessel either being blocked or bursting and leaking. It may be commonly referred to as a stroke, although there are other forms of strokes. The scan may also have detected the phsycial changes in the brain associeted with Alzheimer's

Lastly, the MMSE and the resulting score are not definitive proof of anything - they are really just a sometimes useful tool, often more for detecting progressive changes over time. Certainly, an MMSE would never be anything more than supportive evidence as to whether someone had 'mental capacity' since it mainly tests things like cognitive function and memory. Someone could score highly on an MMSE yet lack the capacity to make rational decisions (for example, they might perform well but have paranoid delusions).

[ITBookworm]

Hi Babypie,

I am so sad to hear about the problems with your dad. I hope that you manage to work out some way of forcing your him to accept help

I don't know if it helps but the MMSE is not the best way to asses someone's ability to look after themselves. It can give some idea of their understanding but is too variable to be entirely accurate for anything else.

Your dad has a score of 22/30 but clearly has massive problems. My FIL got a score of 4/30 only 10 days ago but is still pretty safe to leave looking after himself. He has some of the same problems as your dad in that we are reasonably sure he isn't washing, can't prepare anything hot much beyond tea, toast or something that he can cook in the grill and has the time sense of a flea but thankfully is not incontinent, is still reasonably tidy round the house and can safely go shopping alone (we won't go into what he actually buys... ).

I think the easiest way to tackle this might be the risk or health side of things - that allows SS to overrule your dad's wishes whether he has capacity or not. Gas rings or heaters left on unattended, as someone else mentioned is a risk. If he sets the house on fire it would affect the neighbours as well as himself! If the place is as dirty as you say does that extend to areas that would affect the neighbours? Does he do things that annoy/upset neighbours. In those cases you can ask the neighbours to complain to social services as well. It all adds up to things that can force SS action.

Good luck!

[bunnies]

I too find it extraordinary that social services, through their carers, can say someone with dementia is too difficult to help. I felt, too, that my aunt's filthy house and hygiene was perceived as an obstacle to them giving help, when it seemed to me it proved she needed help. I agree that no-one can be forced to have help, but it seems to me they are going from one extreme to another - a full package, if he is fully compliant, or nothing if he is not. I think this is typical though, and I suspect that SS do not expect the situation to continue for very long without their intervention. They are withdrawing, it seems to me, knowing full well that (if you do not intervene) that very soon your father will be deemed to be in crisis, and then will have to be sectioned and forced into care.

You are left with the terrible choice of struggling to help him yourself, or leaving him so that the crisis occurs sooner rather than later. It is a very harsh choice but it seems to me the latter is the only reasonable option. You could perhaps limit your help to visiting him to see how bad things have got, and then informing social services of this so they know he is 'at risk'.

[Butter]

I'm afraid I would do what everyone is suggesting - withdraw to let the crisis emerge. If you look after yourself a little by doing that you will be better able to help at the time of crisis. And in the aftermath.
Otherwise the crisis will arrive when you have even less control and you will not be able to help at all.
This is so sad and difficult and hard for you. It is amazing the way you have managed for so long.

[SWMBO1950]

Babypie

So sorry to hear of the problems you are experiencing.

SS have a duty of care towards your father whether this involves something neither you nor he like. They cannot just walk away having put carers in place and I would be on the phone first thing in the morning to remind them

Best Wishes

Hi All

I am not a new member but had great help three years ago when my poor mom had dementia (now passed) that I thought I could ask for help again. Have forgotten original log in so I am an "old newbie"

My Dad 86 was just diagnosed with A.D, and, like many people on here I knew he had it, mainly from very severe sun downing, but on many visits to GP I was met with a smile and an assurance he did not have Dementia as he asked him two memory questions and Dad got them right!

Anyway things had also gone horribly wrong in the 6 months leading up to the diagnosis, mainly from the way Dad has been living.I would be here all day if I went into it all but house is terribly filthy, covered in excrement, maggots in fridge,carpets filthy with all manner of things and personal hygiene terrible and on-off double incontinence. Has a "friend" to clean one hour a week who is not the best to say the least!

I am unofficial carer and up till 6 months ago was keeping on top of a lot of it but I have a disability on my back and I had to have an operation so have had to withdrawn somewhat. Still do all docs, hospital appointments, shopping and washing and ironing.

Anyway I tried my best to get Dad carers in and eventually the Social services came round and offered a care package. He listened to it all then said " no way, goodbye" Things were then taken out of my hands and Dad admitted to hospital after fall, kept in 6 weeks, mobility bad, the on off incontinence, much confusion and wandering that I asked for full MMSE. They did better than that, did a brain scan and identified Alzhimers changes on old Infract (whatever that means) So, a care package was arranged for dads discharge, 6 weeks social services enablement package. I was so,so,impressed as to what they were going to do-all cooking, tidying up, mopping, shower him, all medications taken care of,I felt so much stress was going off my head and Dad was going to be clean, fed, house tidy etc.

So, Here we are 10 days in and whats happened? from hour one he has refused their help, wont let them dress him, he does not shower,puts filthy smelling of urine clothes on. He will let them make him food and tidy up, like they are some maid service. They changed to a man( in case of embarrassment issues) but still the same. He also now keeps leaving the gas on with frying pans on it and they have called two emergency meetings to talk to him and explain he has to accept help and they cant be there just to do domestic duties and do him a bacon sandwich. He is being most, most rude and nasty and has basically told them to get stuffed. Friday 23rd march was last meeting with boss of carers and two high ranking social workers telling him he has to comply or they are withdrawing. He does understand and told them to get lost too! he wont wear his incontinent pads and they are going in having to deal with all that mess. I took him shopping last week, was filthy and smelt of urine, we never row,I am very soft and unassertive (a doormat maybe?) but I had to tell him I wont take him out like that again, he said mind your own business and added he didn't give a monkeys about how he looked.

I have edited my post, forgot to add has already spent 12 hours overnight on floor, following fall, paramedics called in morning but deemed Ok I keep trying to tell anyone that will listen this will end in disaster, a fall downstairs or set place on fire-all I keep hearing is capacity,capacity,capacity and is allowed to make "unwise decisions"

Up to date, the carers boss and the social worker have rang today and said they are making plans to withdraw, saying he has much capacity and they cant force him. I am so upset and angry at dad, he says they cant force him to have a wash! Its all going to fall back into my lap,the way he lives and the mess in indescribable and all credit to them for doing above and beyond the last 10 days to keep it nice. Today the "help the aged" did a deep clean and even he said the machines are finding it hard to cope with all dried in pooh and rubbish on floor. It will be back to square one in a couple of days!

What can I do? I feel I have to withdraw myself now, still see Dad and still do what I do now but not go in the house when the carers are out of the picture( how can I let him wallow in pooh and live like it though?), my health (including mental health) is suffering, as is my relationship with my fiance and my children. I feel I eat, live and breathe Dad and I am at wits end now. He always said he wont pay any of his attendance allowance after the 6 weeks to private carers as "why should he" So I suppose this was all going to end then anyway to be honest.Also he is not a poor struggling pensioner, has 20k in bank.

Sorry if I have gone on, just feel I worked SO hard to get dads standard of living good and its all going belly up! By the way he scored 22/30 on test so does have very decent capacity.

Thanks for any help/advice in advance

[SWMBO1950]

Hi ITBookworm

I totally agree about the MMSE. My FIL scored 9 before he was taken into care 10 years ago and he was a real handful

My mother however scored 11 a few weeks ago and there is absolutly no comparison between the two and I would say in real terms my mother is far better than my FIL ever was towards him going into care.

The MMSE is only a guide amd like everything else connected with 'science' it should not be taken as concrete.

Hi Babypie,

I am so sad to hear about the problems with your dad. I hope that you manage to work out some way of forcing your him to accept help

I don't know if it helps but the MMSE is not the best way to asses someone's ability to look after themselves. It can give some idea of their understanding but is too variable to be entirely accurate for anything else.

Your dad has a score of 22/30 but clearly has massive problems. My FIL got a score of 4/30 only 10 days ago but is still pretty safe to leave looking after himself. He has some of the same problems as your dad in that we are reasonably sure he isn't washing, can't prepare anything hot much beyond tea, toast or something that he can cook in the grill and has the time sense of a flea but thankfully is not incontinent, is still reasonably tidy round the house and can safely go shopping alone (we won't go into what he actually buys... ).

I think the easiest way to tackle this might be the risk or health side of things - that allows SS to overrule your dad's wishes whether he has capacity or not. Gas rings or heaters left on unattended, as someone else mentioned is a risk. If he sets the house on fire it would affect the neighbours as well as himself! If the place is as dirty as you say does that extend to areas that would affect the neighbours? Does he do things that annoy/upset neighbours. In those cases you can ask the neighbours to complain to social services as well. It all adds up to things that can force SS action.

Good luck!

[hollycat]

So sorry to read your post and to be really honest, am sick of reading similar posts; it upsets me for both the carer and the "patient".

Sick because it is bleeding obvious there is a big problem, but the good old mental health act (ha ha ha) says dad has capacity.

I HOPE in your circumstances I can find the strength to phone SS, advise them I am withdrawing all MY help so now its over to you !

i am afraid that creating a CRISIS seems to be the only thing that seems to work.

Sorry for my rant and I wish you strength in the difficult, dark days ahead.

[babypie]

I'm trying to square the social worker's argument that your dad "has capacity" and yet does things that put his, and other's, lives in danger.

Unfortunately some people who do have capacity manage to live in the most squalid of conditions, for various reasons. But your dad is quite obviously endangering his own life with the way he is living (in that there's a serious risk of disease) and dangerous behaviors (like leaving the gas on under pans).

Unfortunately, things have now reached the stage where your dad can't make rational choices for himself so they will have to be taken for him, probably against his wishes.

I'd contact your dad's Gp and social worker and point out all the things you have and say how worried you are that he is a "vulnerable person" and "at risk".

Do remember that his doctor and social services have a legal duty of care which means they MUST act, in law you are not responsible for your dad's safety and welfare, they are.

Even if that weren't the case you are clearly not in the position to do it all because of your own difficulties.

At the end of the day I'm sorry to say that it will most likely come down to your dad being forced to accept the help he needs regardless of his wishes.

I suspect that ultimately it would involve either a section under the mental health act or later on a deprivation of liberty.

Under a section order your dad would have no choice but to comply and can be physically compelled (but only by the police or restrained by hospital staff)

It's always sad when this happens but it is relatively common, not least because in many people with dementia the disease takes away the capacity they need to recognise their own lack of capacity (if this makes sense). It is certainly extremely common for someone with dementia to think that they are living perfectly normally and that there is nothing wrong with them.

Unfortunately your dad's agression is likely a personality change triggered by the disease, or possibly just a reaction to people telling him things he doesn't believe or want to hear. Sadly a complete disregard to personal hygiene is common, too.

He might also have paranoid beliefs or fixations about his money, or sees no reason to spend it when "there is nothing wrong".

This false belief/denial is often what makes caring for the demented ten times harder than it might be!

An infarct, by the way, refers to a lesion in an area of the body, in essence a scar of dead tissue that is the result of loss of blood supply to it. This means that the area is deprived of oxygen and it therefore dies. If the brain is involved this is called a cerebral infarction and it can be caused by a blood vessel either being blocked or bursting and leaking. It may be commonly referred to as a stroke, although there are other forms of strokes. The scan may also have detected the phsycial changes in the brain associeted with Alzheimer's

Lastly, the MMSE and the resulting score are not definitive proof of anything - they are really just a sometimes useful tool, often more for detecting progressive changes over time. Certainly, an MMSE would never be anything more than supportive evidence as to whether someone had 'mental capacity' since it mainly tests things like cognitive function and memory. Someone could score highly on an MMSE yet lack the capacity to make rational decisions (for example, they might perform well but have paranoid delusions).

So sorry to read your post and to be really honest, am sick of reading similar posts; it upsets me for both the carer and the "patient".

Sick because it is bleeding obvious there is a big problem, but the good old mental health act (ha ha ha) says dad has capacity.

I HOPE in your circumstances I can find the strength to phone SS, advise them I am withdrawing all MY help so now its over to you !

i am afraid that creating a CRISIS seems to be the only thing that seems to work.

Sorry for my rant and I wish you strength in the difficult, dark days ahead.

Thank you all for taking the time to read and reply. I have read and re-read all the replies and again, like 3 yrs ago I feel that people who understand are listening. Im fed up of talking to friends and family so my god they must be sick of hearing it. Interesting replies and I think I have come to the conclusion as many said I have to step back a bit and let a crisis happen. It seems cruel and terrible but what else can be done. I have two brothers in all this, one see's him once a fortnight for 10 mins (really)and the other an hour every 3rd sunday. Their input is nil but when Dad was in hospital and a care home was suggested I had some real hope, problem is he owns his home and Dad does not want to pay for care and the lads don't want him to either and lose their inheritance. I say inheritance is when someone is dead and if its needed to make someone safe, clean,fed and cared for then so be it. I will be losing mine too but would rather Dad be OK and my sanity intact. Think its the same old story on these boards, those who are not involved in any of the care seem to make their voices heard when it comes to the crunch-cash! anyway I digress. Thank you all again, and my love to all others affected by this horrible illness

[bethan]

babypie
so sorry to hear what you are dealing with, you are obviously at your wits end.
However, as others have said, if your dad is deemed to have capacity and understands what he is doing, then the Mental Capacity Act means that legally he has to be allowed to make his own decisions no matter how unwise. The social workers have obviously done everything they legally can to try and persuade him otherwise. I dont think it is fair to blame them - after all as his daughter even you cant persuade him to go on having carers in.
Wishing you all the best with everything
Beth

[nmintueo]

Sadly if your Dad does not want help it cannot be forced on him. Well not until he becomes a danger to himself or others and then a Sectioning process should take place.

I would have thought that by living under extremely squalid and unhygienic conditions, he has become a danger to himself already.

In any case, if he has a history of falling and being unable to get up, it is demonstrably not safe for him to be left unattended for long periods.

Mental Capacity Act 2005 - Code of Practice
http://www.direct.gov.uk/prod_consum.../dg_186484.pdf

Assessing ability to make a decision

• Does the person have a general understanding of what decision they need to make and why they need to make it?
• Does the person have a general understanding of the likely consequences of making, or not making, this decision?
• Is the person able to understand, retain, use and weigh up the information relevant to this decision?
• Can the person communicate their decision?

Assessing capacity to make more complex or serious decisions

• Is there a need for a more thorough assessment (perhaps by involving a doctor or other professional expert)?

He scores 'Yes' on his ability to communicate his decisions. Whether he scores 'Yes' on those other considerations seems doubtful.

As others have suggested here, press for a more thorough assessment, and make sure you have some input - do what you can to document the state of affairs.