Moving someone out of a care home.

[Porfan]

Hi everybody, this is my first post.
I have looked through this section of the forum for similar stories, and only found one previous, but sadly this has not been updated.

My FIL is currently in a care home. He has Parkinsons and Vascular dementia. He was admitted in approx January of this year. He was admitted from home under pressure from the district nurse. Prior to this he was admitted to hospital. At the time he was on medication and was verbally and physically violent, when provoked. He was assessed for mental capacity during his stay in hospital and was first assessed as competent, and then within an hour ( because of his behavior) assessed as incompetent by the same professional. He was then sent to a special ward at another local hospital to have his medication 'monitored'. He was kept in this ward for approx 6 weeks whilst his medication was altered. During this time he was very highly medicated and could be alternately difficult and drowsy. Eventually we managed to get him released to his home after a care package was agreed. However. he was still very difficult and after about three weeks he got too much for my Wife and MIL to cope with him. I had advised them to start looking for care homes previously, so he was moved there.

He has been at the care home for about 2.5 to 3 months now, and after a meeting with the SW the family requested that the medication he was receiving was reduced to pre hospital levels. One particular drug had got so bad that they were actually medicating him with another drug to counter the effects. Since the meeting and the reduction in the medication, he has been returning to his normal self.

So the question is....my MIL wants to have him home! In my opinion although the POA will be granted in 3 weeks he is competent to make his own decisions, and he wants to return home. Currently he is under DOLS because he does not want to be in the home. Can we get him home?

Also having researched this in the past, CHC have said that they do not fund 24 hour care at home, which he would definitely need if he was to be there. So how does this work with his rights under the Human Rights Act to live where he pleases, his rights for people to work in his best interests, and also the council/CHS obligation to provide the care required to facilitate his rights?

Also, i assume that we would have to get his mental capacity assessed independently, where would we go for that?

Thanking you all in advance!

 

[LYN T]

My advice-think VERY carefully before attempting to have your FIL home. An attempt has previously broken down and it may happen again. My Husband has been awarded CHC and when I asked if he could come home I was told 'no' as he was placed in a CH because he needed 24/7 care-which I couldn't provide. If I remember correctly CHC at home would have only involved 21 hours a week.

When your FIL's capacity was assessed it was by an expert-and whilst I NEVER accept such an opinion without questioning-sometimes we do have to accept. Dementia is a degenerative disease and your FIL will only experience greater needs as time goes on. Will your MIL be able to cope as and when this happens?

Unfortunately, lots of dementia sufferers want to go home-but this doesn't necessarily mean the bricks and mortar home as we would know it; sometimes it could be a place in time from their past.

Are you happy with the care your FIL receives in the CH/NH? If so ask yourself would he receive the same level of care with your MIL?

I'm sorry I have no experience in getting a second opinion for mental capacity-I expect someone will be along soon to help.

Oh! welcome to TP. I hope my opinion has not caused offense.

Take care

Lyn T

 

[FifiMo]

The overriding answer to your question is NO you cannot take him home if there is a Deprivation of Liberty (Safeguarding) order in place. Such an order is put in place by the courts and due to potential challenge on the basis of human rights issues, it is not something the courts agree to easily. There must therefore be evidence to support such an application before it was awarded. DoLs is put in place in the best interests of the individual. If he was at risk to himself and others due to, say, aggression or violence, then safeguarding everyone concerned is the top priority and if this means his 'human rights' have to take a back seat then that is why it takes a court to decide that this is necessary or not.

My question to you about wanting to take him home is 'why?'. Sometimes people look at someone differently because their dementia is being managed by medication and seem to forget that the underlying disease is still there - it will not go away - in fact it will get worse. The reason he is where he is, is due to the illness. He has a primary care need that requires him to be in a place where he has immediate access to nursing care on a 24/7 basis. Please believe me when I tell you that being awarded CHC funding is a rare occurrence these days. The fact he is in receipt of this is of itself indicative of him being a very unwell person.

There is a danger when someone becomes institutionalised and is settled, with the right level of nursing care and medication, that families see this almost as if the person is 'cured'. He is in this state BECAUSE of where he is and the level of care he is receiving, not because anything has changed. With this in mind, what would you as a family intend doing if he returned home? Who would provide his care? How would you access immediate attention if needed? Would you continue religiously to apply his medication? I only ask this because you seem to be of the view already that you would do things differently with regards to medication - are you qualified to make such decisions and what would be the repercussions if he became unstable again?

Do you have the facilities to be able to deliver the care he needs? Is the house suitable for these to be met - things like assisted bathing etc?

What would be the intention in supporting your MIL? Is she fit? Able to cope with the demands of 24/7 care?

My feeling on this is that the only way this gentleman is going to be allowed to return home is if a court can be persuaded that it is in the best interests of his health and his welfare and also in the best interests of the family and the wider community. If he is in receipt of CHC funding then it is for the NHS to determine where his needs are best met as his primary need is of a medical nature. Whilst they might listen to the family about what their wishes might be, they are the ultimate arbiters as to where he should reside etc. This is because they have the duty of care. Even if you were able to move him back home there is a danger that you would do so against the professional opinion of the NHS - might even lose the CHC funding if they consider you are taking over the duty of care obligation (not even sure that you can).

This is not intended to be a negative post. If you can achieve what you want and everyone is happy and it is not detrimental to the gentleman's health then by all means give it a try. I would however go into this with a great deal of trepidation and think things through before making any decisions.

Fiona

 

[Porfan]

My advice-think VERY carefully before attempting to have your FIL home. An attempt has previously broken down and it may happen again. My Husband has been awarded CHC and when I asked if he could come home I was told 'no' as he was placed in a CH because he needed 24/7 care-which I couldn't provide. If I remember correctly CHC at home would have only involved 21 hours a week.

When your FIL's capacity was assessed it was by an expert-and whilst I NEVER accept such an opinion without questioning-sometimes we do have to accept. Dementia is a degenerative disease and your FIL will only experience greater needs as time goes on. Will your MIL be able to cope as and when this happens?

Unfortunately, lots of dementia sufferers want to go home-but this doesn't necessarily mean the bricks and mortar home as we would know it; sometimes it could be a place in time from their past.

Are you happy with the care your FIL receives in the CH/NH? If so ask yourself would he receive the same level of care with your MIL?

I'm sorry I have no experience in getting a second opinion for mental capacity-I expect someone will be along soon to help.

Oh! welcome to TP. I hope my opinion has not caused offense.

Take care

Lyn T

Hi Lyn T;

Thank you for your comment, i was looking for neutral comment, thats why i came on this forum!

The only comment you made that i would take issue with, is the one about him being assessed by an expert. One of them changed his mind 180 degrees inside an hour and none of the people have actually told me that he has, or has not got capacity. It is all time critical, which to me means that he has capacity some/most of the time! Frankly, after the families experience with the hospital saga, i have very little faith in the opinions of any 'experts'.

Regards

 

[PeggySmith]

Hi Porfan, you said: "Eventually we managed to get him released to his home after a care package was agreed. However. he was still very difficult and after about three weeks he got too much for my Wife and MIL to cope with him." What if that happens again? You also said that your MIL wants him home, but is she really saying that she wants her husband back, not the needy person he's become but the one she married and lived with for so many years?

Also having researched this in the past, CHC have said that they do not fund 24 hour care at home, which he would definitely need if he was to be there. So how does this work with his rights under the Human Rights Act to live where he pleases, his rights for people to work in his best interests, and also the council/CHS obligation to provide the care required to facilitate his rights?

Where I live night time care costs between £250 and £700 per night so it's clearly only an option for the super rich and I don't think it's reasonable for us to expect the state to fund at that level which is why care/nursing homes exist.

My final thought is to wonder why he'd need 24 hour care at home? If he really would, then I would be very nervous about moving him. Please don't think I'm being harsh or judging you - the decision about group homes is never easy and brings a level of guilt with it, but it's often the very best option and we really have no choice.

Just read your reply to LynT and I can certainly identify with that feeling!

 

[Porfan]

The overriding answer to your question is NO you cannot take him home if there is a Deprivation of Liberty (Safeguarding) order in place. Such an order is put in place by the courts and due to potential challenge on the basis of human rights issues, it is not something the courts agree to easily. There must therefore be evidence to support such an application before it was awarded. DoLs is put in place in the best interests of the individual. If he was at risk to himself and others due to, say, aggression or violence, then safeguarding everyone concerned is the top priority and if this means his 'human rights' have to take a back seat then that is why it takes a court to decide that this is necessary or not.

My question to you about wanting to take him home is 'why?'. Sometimes people look at someone differently because their dementia is being managed by medication and seem to forget that the underlying disease is still there - it will not go away - in fact it will get worse. The reason he is where he is, is due to the illness. He has a primary care need that requires him to be in a place where he has immediate access to nursing care on a 24/7 basis. Please believe me when I tell you that being awarded CHC funding is a rare occurrence these days. The fact he is in receipt of this is of itself indicative of him being a very unwell person.

There is a danger when someone becomes institutionalised and is settled, with the right level of nursing care and medication, that families see this almost as if the person is 'cured'. He is in this state BECAUSE of where he is and the level of care he is receiving, not because anything has changed. With this in mind, what would you as a family intend doing if he returned home? Who would provide his care? How would you access immediate attention if needed? Would you continue religiously to apply his medication? I only ask this because you seem to be of the view already that you would do things differently with regards to medication - are you qualified to make such decisions and what would be the repercussions if he became unstable again?

Do you have the facilities to be able to deliver the care he needs? Is the house suitable for these to be met - things like assisted bathing etc?

What would be the intention in supporting your MIL? Is she fit? Able to cope with the demands of 24/7 care?

My feeling on this is that the only way this gentleman is going to be allowed to return home is if a court can be persuaded that it is in the best interests of his health and his welfare and also in the best interests of the family and the wider community. If he is in receipt of CHC funding then it is for the NHS to determine where his needs are best met as his primary need is of a medical nature. Whilst they might listen to the family about what their wishes might be, they are the ultimate arbiters as to where he should reside etc. This is because they have the duty of care. Even if you were able to move him back home there is a danger that you would do so against the professional opinion of the NHS - might even lose the CHC funding if they consider you are taking over the duty of care obligation (not even sure that you can).

This is not intended to be a negative post. If you can achieve what you want and everyone is happy and it is not detrimental to the gentleman's health then by all means give it a try. I would however go into this with a great deal of trepidation and think things through before making any decisions.

Fiona

Hi Fiona;

Thank you VERY much for your post.
A couple of comments i will make to clarify some points, and some more questions?
He is under a DOLS that is limited to 85 days with approx 60 remaining before he has to be re-assesed. The reason he is under the DOLS is because he tried to refuse to return to the home when out with my wife on a trip to the local nursary. With some persuasion he eventually returned. The home then started the DOLS procedure to 'protect them selves'.

Virtually every day he is asking to return home and to be honest, this is making him very frustrated.

As far as the medication question is concerned, i have no formal training or knowledge of medicine prescribing, but, it was obvious at the time, and has been subsequently proved that now he has had his medication reduced he is both more alert and less agressive. At one point the trained nurses at the home were very concerned about his medicated state, and this resulted in a call to the prescriber and the subsequent reduction. Common sense tells me that when someone is being medicated to reduce the side effects of another prescribed medication, then something needs looking at. That and the fact that he was discharged from the hospital with one dosage of the medication on the release notes and another on the medication itself, and it took 4 weeks for anyone to decide which one was correct!

To date he is under an 'intrim funding agreement' (CHC) and has to date not been formally assesed.

Regards

 

[LYN T]

Hi Lyn T;

Thank you for your comment, i was looking for neutral comment, thats why i came on this forum!

The only comment you made that i would take issue with, is the one about him being assessed by an expert. One of them changed his mind 180 degrees inside an hour and none of the people have actually told me that he has, or has not got capacity. It is all time critical, which to me means that he has capacity some/most of the time! Frankly, after the families experience with the hospital saga, i have very little faith in the opinions of any 'experts'.

Regards

That's why I question all the time. The expert in your FIL's case changed his mind because he was witness to further displays of behaviour which changed his mind.Better that way than stick with a decision just because it's already been made. It is up to you if you wish to challenge this opinion. Over the years I have developed a very good relationship with Pete's hospital consultant (he has been sectioned 5 times) and I have grown to trust her. I find it better for both Pete and myself to channel my energies into getting as much information as possible from her. I am sent information sheets regarding medication which I follow up with a phone call. Decisions are then made-but ultimately I rely on the consultant's opinion.

Nothing will ever change the fact that Pete is better looked after where he is rather than at home. It pains me to admit that but the expertise in the CH is so much greater than mine.

Take care

Lyn T

 

[Porfan]

That's why I question all the time. The expert in your FIL's case changed his mind because he was witness to further displays of behaviour which changed his mind.Better that way than stick with a decision just because it's already been made. It is up to you if you wish to challenge this opinion. Over the years I have developed a very good relationship with Pete's hospital consultant (he has been sectioned 5 times) and I have grown to trust her. I find it better for both Pete and myself to channel my energies into getting as much information as possible from her. I am sent information sheets regarding medication which I follow up with a phone call. Decisions are then made-but ultimately I rely on the consultant's opinion.

Nothing will ever change the fact that Pete is better looked after where he is rather than at home. It pains me to admit that but the expertise in the CH is so much greater than mine.

Take care

Lyn T

Hi Lyn T

Just came off the phone from the DOLS assessor, who rang me to say that the reassesment was due in 4 weeks. In the conversation he has stated that when he was assessed previously it was a borderline decision, and we know from comments last week from his CPN that he had improved alot since!

Regards

 

[Moonflower]

I think you may have to be very careful here - if he is deemed to have capacity, he can choose to go home. But I don't think you'll get 24 hour care at home, or anything like 24 hour care. So you can end up with him back at home but without sufficient support for your MiL to cope.

 

[optocarol]

Just a thought - does he know where home is? Have you asked him?

 

[Tensing]

Coping with Carers

I have come to the conclusion that you have to be fit and well to cope with carers. I am caring for my husband with Alzheimer's and recently had live-in care whilst I had a hip replacement; then 2 daily care visits as I recovered. The quality of care was variable, depending on the carer. I was glad when I was able to dispense with the carers because I was having to fit our lives around them. I am witnessing a friend having 3 daily visits at the moment and she is stressed out.

 

[Raggedrobin]

I think you have to take the long view. He is going to get worse, not better, sadly and that means if he goes home he will at a later point probably end up being readmitted to a care home, or sent to a new one, during a care crisis at home. Its all very well talking about human rights but cost IS a factor in care decisions and 24 hour care is hugely expensive, plus someone has to manage the carers all day every day and this can all be very very wearing.
It may well be that you haven't seen him in a real state. My mother can be sweetness and light but her care notes (do read his) are full of violent outbursts which I have only occasionally witnessed. She tries to sort of hold it together when I am there.
I think getting medication right is hugely important and you can always get a second opinion from a psychiatrist if you are not happy with his current prescriber. However it is not easy to get medication right, everyone responds differently and it is not a sign of failure if he has to have one drug to counter another, some drugs can be very effective but do produce side effects that require remedies. But remember many drugs don't remain effective forever.
Also bear in mind that people talk about 'home' and it can be a place of security in their head they long for, not an actual home. I would explore whether home really does mean that to him, it is a kind of misuse of language.

 

[src123]

Hi everybody, this is my first post.
I have looked through this section of the forum for similar stories, and only found one previous, but sadly this has not been updated.

My FIL is currently in a care home. He has Parkinsons and Vascular dementia. He was admitted in approx January of this year. He was admitted from home under pressure from the district nurse. Prior to this he was admitted to hospital. At the time he was on medication and was verbally and physically violent, when provoked. He was assessed for mental capacity during his stay in hospital and was first assessed as competent, and then within an hour ( because of his behavior) assessed as incompetent by the same professional. He was then sent to a special ward at another local hospital to have his medication 'monitored'. He was kept in this ward for approx 6 weeks whilst his medication was altered. During this time he was very highly medicated and could be alternately difficult and drowsy. Eventually we managed to get him released to his home after a care package was agreed. However. he was still very difficult and after about three weeks he got too much for my Wife and MIL to cope with him. I had advised them to start looking for care homes previously, so he was moved there.

He has been at the care home for about 2.5 to 3 months now, and after a meeting with the SW the family requested that the medication he was receiving was reduced to pre hospital levels. One particular drug had got so bad that they were actually medicating him with another drug to counter the effects. Since the meeting and the reduction in the medication, he has been returning to his normal self.

So the question is....my MIL wants to have him home! In my opinion although the POA will be granted in 3 weeks he is competent to make his own decisions, and he wants to return home. Currently he is under DOLS because he does not want to be in the home. Can we get him home?

Also having researched this in the past, CHC have said that they do not fund 24 hour care at home, which he would definitely need if he was to be there. So how does this work with his rights under the Human Rights Act to live where he pleases, his rights for people to work in his best interests, and also the council/CHS obligation to provide the care required to facilitate his rights?

Also, i assume that we would have to get his mental capacity assessed independently, where would we go for that?

Thanking you all in advance!

My answer to you is YES you can take him home if the POA allows his attorneys to decide where he lives. But talk to a lawyer to make sure about the DOL.

Frankly if the care home has not looked after him then he is not getting the care he needs in any case. You can get take him home for an initial visit after putting care in place. Then talk to the SW to see if the care package can be extended.

 

[LYN T]

My answer to you is YES you can take him home if the POA allows his attorneys to decide where he lives. But talk to a lawyer to make sure about the DOL.

Frankly if the care home has not looked after him then he is not getting the care he needs in any case. You can get take him home for an initial visit after putting care in place. Then talk to the SW to see if the care package can be extended.

I'm not sure this is correct. My Husband has been DOL'd on several occasions and I'm sure the DOL had to be rescinded before he was allowed home.

I'm not sure the poster was complaining about the care FIL was receiving in the CH/NH

 

[FifiMo]

Hiya and thanks for the additional information.

I would suggest, given that his DoLs has to be reviewed in 4 weeks time anyway, that you ask the care home to set up a best interests meeting with all Parties involved in his care. I would then go into this meeting with the mindset that you want to establish what everyone's views are and whether, based on the discussion, the option for him to return home is feasible. Please ask everyone to speak frankly as this is not something you as a family should be taking lightly. If you find that it might be possible to care for him at home , I would then insist that everything is put in place PRIOR to him leaving the care home. Medication sorted, care plan agreed and carers sorted, written agreement as to any funding arrangements, assessment by an OT done at home and any additional equipment/adaptations carried out before he goes home. If there is any one party that does not think that this will work then please take onboard what they are saying - in my experience if someone doesn't agree then they walk away and use their lack of agreement to justify lack of support!

As has already been mentioned, I would ask him about 'home' that he refers to. Very often the 'home' that people crave is not the home they came from but a childhood home. This is because, as the recent memory fades, they have to go further and further back in time in order to establish a 'reality' that they recognise. It is also thought that the 'home' which they are seeking is not a physical place but it is a plea to return to those days when he felt safe and secure - hence the reason that pleas to go home after often accompanied by references to their parents and siblings and old neighbours too. Just be prepared, if he does go home, for him not to recognise the place. In addition you may well find that once he is there he is still not content and will continue to seek this 'home' or security or comfort. This is one of the hardest things to cope with because of all the tangible things we can provide, this is the one thing that we can't ever recreate for them.

I wish you well whatever you decide to do. Decisions based on someone's best interests are the best that we are able to achieve with this horrible disease.

Fiona

 

[Porfan]

Hi All

Wow!! thanks for all the replies..... i will read them all more fully over the weekend!

Thank you all

 

[Jessbow]

In the space of 5 months he's been at home, in hospital, in an assessment unit and now in a residential home......and you want to move him again?

What could be done differently this time to last time when 'home' lasted 3 weeks?

I'd really be trying to persued my M-in-L that its a bad choice.

 

[jaymor]

I have to agree with Jessbow, the moving about is detrimental. For the last two years my husband was at home, according to him the house he had lived in for nearly 50 years was not his home and I was not his wife. I was asked daily by him to take him home to his wife. So where was this home that he wanted to go to. He was 62 when diagnosed and 67 when he no longer recognised the home he lived in. I have no idea what he was looking for, I can only guess that maybe it was the home he lived in when he was young.

My husband has been in his nursing home now for nearly two years. He went into an assessment unit and I thought that once he was observed and his medication was tweaked he would return home. After three weeks there we were told that his care was beyond home care even with the most robust care package in place. Our children realised this but I to some extent was in denial.

After long discussions with our children I agreed to him going into a nursing home. He went in having 1:1 care for 12 hours a day and that has now been increased to 24 hours a day. He was awarded CHC because of his complex needs. I thank The Lord each day that I went with the professionals.

I believe too that my husband did at the time have capacity one minute and no capacity the next. He definitely could not have made an informed decision about his care and if I had brought him home, he would not have accepted it as home.

There is never an easy decision to make when dealing with dementia, we can only do what is best for the sufferer, not the relatives, the sufferer.

I had cared for my husband at home for 7 years and it was only when he went into his nursing home I realised how difficult, waring and health wise impossible it really was. I had done him a great disservice by thinking I could give the level of care he needed when in the nursing home he got the care he deserved. I still carry on caring, I visit every other day and we have stressless time together.

Jay

 

[Porfan]

In the space of 5 months he's been at home, in hospital, in an assessment unit and now in a residential home......and you want to move him again?

What could be done differently this time to last time when 'home' lasted 3 weeks?

I'd really be trying to persued my M-in-L that its a bad choice.

Hi to everyone, sorry its been so long, here is an update!

You are correct about the chain of events, although the issue is that he was forced by the authorities to follow this course. He did not want to be at any of these places. He was only admitted to hospital for a cut arm, after a fall. After that he was 'assessed' at the hospital and he then had no choice but to do as they said.

So the situation is at the moment, that he was re assessed for DOLS, and was found to have capacity, so the DOLS was lifted. He made a request to the DOLS assessor's to be allowed to return to his home. We facilitated his request to move last Wednesday. CHC are going to be funding 24 hour live in care to allow this to happen whilst they decide whether they or SS will fund this in the future.

How this will turn out, we will see. The crucial point to make is that because he has capacity nobody can dictate his residence or care, we have to follow his wishes.

 

[VickyG]

Good luck

Hi to everyone, sorry its been so long, here is an update!

You are correct about the chain of events, although the issue is that he was forced by the authorities to follow this course. He did not want to be at any of these places. He was only admitted to hospital for a cut arm, after a fall. After that he was 'assessed' at the hospital and he then had no choice but to do as they said.

So the situation is at the moment, that he was re assessed for DOLS, and was found to have capacity, so the DOLS was lifted. He made a request to the DOLS assessor's to be allowed to return to his home. We facilitated his request to move last Wednesday. CHC are going to be funding 24 hour live in care to allow this to happen whilst they decide whether they or SS will fund this in the future.

How this will turn out, we will see. The crucial point to make is that because he has capacity nobody can dictate his residence or care, we have to follow his wishes.

And see how it goes.
I took my mum out of her CH in January of this year. Different situation to yours as my mum hasn't had capacity for a few years now.
All I'll say is, being deemed to have capacity is a tricky field. Someone can be borderline but when asked a question, if the 'correct' answer is given, in the eyes of all the 'experts', they have to follow protocol.
Good luck and keep us posted.