How can I insist my OH goes into a CH

[Pots and Pans]

Always amazed at what so many of you cope with but I cannot cope being prime carer any longer for my OH. Day to day I can manage all the personal care, can deal with the incontinence, the loss of mobility (use wheelchair outdoors), the loss of ability to do basic things like use a TV control, answer a phone, make a cup of tea, even put his socks on... . We do still have fun together too. BUT almost every day brings episodes of fierce temper, verbal abuse that is beginning to become physical (slaps,/grabbing,/ fist in face/:threats) too. Mostly out of frustration and ALWAYS after a continence issue. Almost nonstop repetitive questions and delusional about where he lives, who I am, where his long-dead parents are etc etc. Quite frankly I am not up to this, even with a bit of help (I get 8 hours a week just agreed). Have seen from other posts that when you start thinking care homes are only.option, it is probably right time. Consultant did say I should consider last July so have managed a year since then. Have also been round nice local one that looks great. BUT even mention the idea of respite ' holiday' to OH and that is cue for temper tantrum. Most days he tells me he hates me and wants to either kill me,/ punch me or leave ... but delusional about going to 'his house' ( one he grew up in!) Or will stay with one of his many friends or just get a flat himself. All unrealistic. But how can I organise a CH if he won't go there? He would be self- funding ( for a bit anyway!) and although I have both health and financial POA all sorted, how can I exercise this against his will? In between the abuse and questions there is still a man who knows what he wants.. or definitely what he doesn't. So hard anyway to decide this, but even worse if I have to override his wishes... and not even sure how I do so. Btw he has never had a care needs assessment ( as self- funding!) so he has no assigned social worker.
Oh, so very difficult. Sorry for long post but just don't see how I can make any other choice now... but it isn't just my choice, is it? But I also know I can't take being called a bitch/ cow/******/****/madwoman etc most days. This is not my husband any more.

 

[MartinWL]

You cannot put up with this and should not have to. It will make you ill and then who will look out for him? He has to go into the care home. Do ask social services to do an assessment and be firm that you are discontinuing care from a date quite soon. This might be a case in which a denial of libert safeguards order will have to be made by the council. Do also ask family to help if available?

 

[Sarasa]

Hi @Pots and Pans, first of all do make sure you are safe. I'm sure your husband doesn't mean to hurt you, but he could easily do so accidently while lashing out. Keep a charged mobile with you at all time, and have a lockable room you can retreat too. Also don't be afraid to phone 111 or 999 if things get out of hand.
I moved my mother to a care home when she was at a less advanced stage than your husband. Mum was living independently, but was putting herself and others at risk with her erratic behaviour. Mum had decided she wanted to move and her flat was under offer. I told her that some work was being done to the outside of the building (true), and that she was having a break near me while it was done. Mum was extremely upset by the move and kept on trying to leave, so the home applied for a Deprivation of Liberty Safeguarding order. That meant she could be kept there against her will. It sounds horrible, but as the alternative was worse, it was the best thing I could do to keep her safe.
You can ask for a social services assessment, even if you are self-funding, but I know things are really stretched at the moment, so you might not be high on their priority list. I too have no experience of using SS, but I'm sure others who have will be along with ideas as to how to obtain help from them
The best thing seems to be getting a bit of respite, so you can re-group and decide if permanent care is the way to go. In all honesty, it does sound like it's time. I wouldn't mention 'holidays' or any other term that suggests your husband is going somewhere. Just sort out a care home and get him there by any means possible. A good home should be able to cope with your husband not wanting to be there. For instance at mum's place they all took off their badges, opened a bottle of prosecco and acted like she was in a posh hotel. Mum is now very settled there, though it did take time.
Edited to add:
I think contacting the Support line to talk things through would be a good idea. Phone 0333 150 3456 or email dementia.connect@alzheimers.org.uk

 

[Pots and Pans]

Thanks @Sarasa Yes, I am safe enough. In between the episodes there are normalised times ... never shouts when others around for instance so I have started to tape bits. Also called 999 a couple of times last year when we had live-in care and he was out of control ( it was worse last summer before he began meds... that worked well but now seems to be in reverse.,)
Will talk to CH about best way to do it, also I have an Alzheimer's support worker who I am meeting next week so I am sure she will have lots of advice. It's the emotional side that's so hard.
@MartinWL Thanks. Sadly no family to help. OH had one son (, my stepson over 40 years) but he died of cancer 3 years ago - the stress of that ( we were his care and support) is what sparked off the Alzheimer's in the first place. It then.wrnt into overdrive early last year when OH had a fall and a hospital op. Unlike much of what I read here seems to have then progressed very rapidly. Early 2018 OH was jogging, driving etc ....

 

[jennifer1967]

im sorry you have had to put up with this @Pots and Pans. my husband has just gone on memantine which has helped his temper although he slips yesterday. make sure the CH can meet his needs as regards the temper, lashing out, etc. ask the SS to do an assessment which will be helpful to the carehome. the alz. person is a great source of knowledge, mine has been such a great support and can refer to SS and agencies that you need.

 

[Alex54]

even with a bit of help (I get 8 hours a week just agreed)

This sounds very a low level of help, we have two carers four times a day (total 8 hours per day). Without that support I definitely could not cope. What does your local Alzheimer's support branch think?

 

[maryjoan]

Always amazed at what so many of you cope with but I cannot cope being prime carer any longer for my OH. Day to day I can manage all the personal care, can deal with the incontinence, the loss of mobility (use wheelchair outdoors), the loss of ability to do basic things like use a TV control, answer a phone, make a cup of tea, even put his socks on... . We do still have fun together too. BUT almost every day brings episodes of fierce temper, verbal abuse that is beginning to become physical (slaps,/grabbing,/ fist in face/:threats) too. Mostly out of frustration and ALWAYS after a continence issue. Almost nonstop repetitive questions and delusional about where he lives, who I am, where his long-dead parents are etc etc. Quite frankly I am not up to this, even with a bit of help (I get 8 hours a week just agreed). Have seen from other posts that when you start thinking care homes are only.option, it is probably right time. Consultant did say I should consider last July so have managed a year since then. Have also been round nice local one that looks great. BUT even mention the idea of respite ' holiday' to OH and that is cue for temper tantrum. Most days he tells me he hates me and wants to either kill me,/ punch me or leave ... but delusional about going to 'his house' ( one he grew up in!) Or will stay with one of his many friends or just get a flat himself. All unrealistic. But how can I organise a CH if he won't go there? He would be self- funding ( for a bit anyway!) and although I have both health and financial POA all sorted, how can I exercise this against his will? In between the abuse and questions there is still a man who knows what he wants.. or definitely what he doesn't. So hard anyway to decide this, but even worse if I have to override his wishes... and not even sure how I do so. Btw he has never had a care needs assessment ( as self- funding!) so he has no assigned social worker.
Oh, so very difficult. Sorry for long post but just don't see how I can make any other choice now... but it isn't just my choice, is it? But I also know I can't take being called a bitch/ cow/******/****/madwoman etc most days. This is not my husband any more.

When I came to the end of the line, I phoned Social Services and told them.

They have a Duty of Care to a vulnerable adult that is nothing to do with who is paying for what. At a meeting I was told that they would formally ask me if I was withdrawing my care- I was in tears, but I said YES.

This was about 2 weeks before the first lockdown which put a halt to plans at that point.

You DO have the right legally to say you are withdrawing your care. A Capacity Assessment can be done, and if your husband is deemed not to have capacity to make an informed decision - his wishes can be over ridden.

A capacity assessment is not a once and for all - they can be done again and again depending on circumstance. My OH is about to have his 5th capacity assessment to decide if he is going into a care home.

 

[northumbrian_k]

It is hard to do this in the situation you describe - given the aggression you are facing, much harder than it was for me - but knowing what I and others have done might help. I used time freed up by once a week outside support to select a care home and make arrangements for an initial trial stay for my wife. I did not tell her or raise it as even the vaguest of suggestions. She had been on some respite stays and, although she had no memory of them, these had gone well.

Subterfuge was the key factor in her move to residential care. Packing her bag in secret and putting this in the car unseen was relatively easy. Getting her into the car and answering questions about where we were going with a grunt or 'we are nearly there' was by then standard for any outing. On arrival at the care home I said that I had some business there and did she want to come in too. Once inside the staff took over, I handed her bag over unseen, and left. By the time I reached home I had realised that this would be a permanent stay. I telephoned for updates but did not visit until the 2nd week, by which time she was starting to get used to the 'hotel' as she described it. That was over 2 years ago and she is now settled and apparently content.

My wife was relatively easy to manage and less aware than what I read in your post. But if you have reached the end of your tether, have Power of Attorney and he has sufficient assets to be self-funding then you ought to be able to go ahead with a respite or trial stay with a view to making this permanent. You don't need to wait for Social Services.

You may need help with the practical aspects, if only to divert attention whilst you put everything in place. A good care home will assist in any way that it can. Once the transfer is made it is likely that the home will ask a Best Interests Assessor to become involved in determining capacity and applying for Deprivation of Liberty authorisation if appropriate.

I wish you luck in taking this very hard but seemingly necessary and inevitable next step.

 

[update2020]

Can you go back to the Consultant who recommended a care home one year ago? I think a number of people like your husband who are showing aggression go to hospital first (sectioned) and then are moved to a care home with SS support. Once someone is sectioned the decision is out of your hands. This is roughly what happened to us and a number of other residents in ‘our’ care home. Another route with the same outcome would be via the police. I found getting respite at that stage was impossible because the issues in settling someone who is delusional or prone to ‘aggression’ are the same since the resident themself cannot tell the difference between respite and permanent.

you may also find a home that would take him and work with you on the transfer. It is truly amazing what a good appropriate care home can do.

so in short I’d try all routes (Consultsnt, care home, SS and if needed the police) but make it very clear that it has to happen.

 

[Pots and Pans]

@maryjoan thanks. What happens at a capacity assessment? Who does it? I have been told that telling SS I won't do it any more doesn't mean they would step in. I would have to have him sectioned... and that would mean a mental assessment unit, not a carefully chosen care home. Can I ask consultant about recommending a capacity assessment so I can ask for one? Di I ask Social Services? It might be helpful to persuade him to accept at least a bit of respite... which might then become longer; Otherwise I have to wait until some sort of crisis leading to hospital and then I can say he can't come home but should go to a care home... Or SS might act if it is a safeguarding issue for me. Sigh. All these options feel like betrayal so I guess I will soldier on until something goes really wrong... And all the time OH can still be really sweet and apologetic. Tonight however he has refused dinner, won't take his evening pills and says he wants to die! He won't remember this tomorrow, but I will...

 

[MartinWL]

Capacity can be assessed by anyone so you can do it. Capacity must be assessed for every decision, it isn't all or nothing. He may have capacity to make a decision about buying shoes, but not about where he should live. You are the person looking after him so I would say you're best placed to decide if he has capacity for a decision as to where he should live. There are 4 things he must be able to do, in order to make the decision himself,:
* Understand information given to him e.g. his diagnosis, risks involved at home. Stress for you
* Remember that information for long enough to make a decision
* Weigh up the pros and cons of his options
* Communicate the decision he makes
He is entitled to make a foolish decision if he can do all of those things. But if he can't do one or more of those things, even with help, then he doesn't have capacity and cannot decide for himself.

There isn't any need for a capacity assessment as if it were a tribunal, and social services don't have to be involved although they might be a help. The practical problem of getting him through the door of a care home is another matter, a very tricky one.

 

[Pots and Pans]

Capacity can be assessed by anyone so you can do it. Capacity must be assessed for every decision, it isn't all or nothing. He may have capacity to make a decision about buying shoes, but not about where he should live. You are the person looking after him so I would say you're best placed to decide if he has capacity for a decision as to where he should live. There are 4 things he must be able to do, in order to make the decision himself,:
* Understand information given to him e.g. his diagnosis, risks involved at home. Stress for you
* Remember that information for long enough to make a decision
* Weigh up the pros and cons of his options
* Communicate the decision he makes
He is entitled to make a foolish decision if he can do all of those things. But if he can't do one or more of those things, even with help, then he doesn't have capacity and cannot decide for himself.

There isn't any need for a capacity assessment as if it were a tribunal, and social services don't have to be involved although they might be a help. The practical problem of getting him through the door of a care home is another matter, a very tricky one.

Very helpful. Thanks. The 4 things depend on the time of day! I suspect he does have capacity. But one thing Alzheimer's seems very much to do is remove empathy... I honestly don't think he has any real idea of the impact on me. And again depending on time of day he would care very much or not at all! But I do know that we are approaching a time when I will have to put his needs ahead of his wishes and be tough.

 

[TNJJ]

Very helpful. Thanks. The 4 things depend on the time of day! I suspect he does have capacity. But one thing Alzheimer's seems very much to do is remove empathy... I honestly don't think he has any real idea of the impact on me. And again depending on time of day he would care very much or not at all! But I do know that we are approaching a time when I will have to put his needs ahead of his wishes and be tough.

Hi.I have something similar going on with dad.I can not get him in to a home either but I have withdrawn my care.He has carers x4 a day. I turn it the other way .If dad choses to not to shave , take his meds or move who am I to argue.He has " fluctuating capacity ".I suspect he does not always understand as he appears to but he has been deemed to have capacity by the doctor.So therefore if he wants to make an unwise decision so be it. I have learnt that I cannot change it so on his own head be it.Dad cannot walk so he wouldn't be able to do anything dangerous( that I wouldn't accept).

 

[Pots and Pans]

Hi.I have something similar going on with dad.I can not get him in to a home either but I have withdrawn my care.He has carers x4 a day. I turn it the other way .If dad choses to not to shave , take his meds or move who am I to argue.He has " fluctuating capacity ".I suspect he does not always understand as he appears to but he has been deemed to have capacity by the doctor.So therefore if he wants to make an unwise decision so be it. I have learnt that I cannot change it so on his own head be it.Dad cannot walk so he wouldn't be able to do anything dangerous( that I wouldn't accept).

'fluctuating capacity' is exactly it! Combine with a bit of host mode and it's a lost cause.... Is usually on best behaviour too with carers ( one day a week just set up). But then he's tired when they leave and the evenings are bad. I cope better though after my me time. Yes, let him make foolish choices (like not bothering to eat a meal) does work quite well too! Easier in me though I then feel guilty. Can't win with this disease.

 

[TNJJ]

'fluctuating capacity' is exactly it! Combine with a bit of host mode and it's a lost cause.... Is usually on best behaviour too with carers ( one day a week just set up). But then he's tired when they leave and the evenings are bad. I cope better though after my me time. Yes, let him make foolish choices (like not bothering to eat a meal) does work quite well too! Easier in me though I then feel guilty. Can't win with this disease.

No you can’t. I feel guilty a lot of the time and it will eat you up if you let it..

 

[MartinWL]

Fluctuation capacity makes things more difficult of course. I think you have to give him the benefit of the doubt and ask him to make the decision when he does have capacity. It would be prudent to have witnesses or an audio or video recording of the conversation. Also of course make a written record. If he decides not to move into a care home you're going to have to decide whether or not you can care for him - you're not obliged to. If you soldier on and his condition deteriorates, as it most probably will, you can of course assess capacity again.

Social services might help but it seems that they tend to want family carers to keep working, social workers don't have much incentive to help take the burden off the shoulders of the carer.

 

[Pots and Pans]

Fluctuation capacity makes things more difficult of course. I think you have to give him the benefit of the doubt and ask him to make the decision when he does have capacity. It would be prudent to have witnesses or an audio or video recording of the conversation. Also of course make a written record. If he decides not to move into a care home you're going to have to decide whether or not you can care for him - you're not obliged to. If you soldier on and his condition deteriorates, as it most probably will, you can of course assess capacity again.

Social services might help but it seems that they tend to want family carers to keep working, social workers don't have much incentive to help take the burden off the shoulders of the carer.

Soldiering on it is for now then.... SS have no interest as would be self-funding. May give myself respite with a weeks live-in care if I can't get ok from OH for a trial week at care home but worry about spending money he has that he will need for a care home in the future. Most near near me want to know we have funds for at least a year. OHs savings will only go so far... Ah well. This is life. Just not the one we wanted!

 

[Banjomansmate]

What is the point of saving his money for care in the future when the care is needed now? If you crumble under the pressure now permanent care could well be needed sooner, so arrange whatever care package that means you get the much needed break for your health and sanity.

 

[update2020]

I reached a point (my husband was self funding) when even the huge cost of care didn’t deter me. I just couldn’t go on. I found an excellent care home. …………. we self funded for a few months before another funding solution was found. At that stage SS were very much involved - they had to be. There is no point in saving money for the sake of it. He’s not going to spend it on anything else.

 

[Rosettastone57]

I'm with others on this. Use the money now for a care home . What else is it earmarked for?