Mental capacity assessment
- Thread starter yorkie46
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Didn't manage to post yesterday because I was too tired. I spoke to yet another physio yesterday morning who informed me my husband had been assessed again because he had been very confused yesterday morning. They have now decided he lacks capacity! She said they would be looking for a long term placement because she understood that was my 'preferance'! That word again! I'm sure they use it to try to guilt trip me. I said it's not that it's my preference, it's a question of where he will be safest and receive the care he needs. At the moment he needs 24 hour care and needs 2 people and moving equipment to help him to get out of bed. I can't provide that on my own and carers 4x a day is not sufficient. There would be times between carer visits when he would need help and what would happen at night. She said there would be a multidisciplinary meeting. I told her I was visiting later with my daughter to try to explain these issues to him. When we visited we found he is a soulless room with no windows to the outside, no TV, just blank walls. The magazines I'd sent for him had gone missing in one of his many moves so they had given him a dreadful book to read. He is clearly depressed unsurprisingly and all he can think about is coming home. I managed to speak briefly to a junior doctor who couldn't answer most of my questions and said the consultant would be happy to speak to me but had a meeting at that time. I then spoke with the dementia nurse and a social worker. They said although he lacked capacity that morning he would be assessed again. There were concerns he could have a chest infection so was due to have x-ray and a CT scan of his head had been requested in case he had hit it during one of his falls. We then went in to talk to my husband and daughter. After a short while they left and we talked to him about the best option for when he was ready for discharge. I explained the difficulties with him coming home in terms of his safety and that I wouldn't be able to help him. He doesn't want to go anywhere but home. We started calling it a halfway house so that he could have the help to try to build his strength and help him to walk. He seemed to accept this one minute then go back to wanting to come home. Today I called the ward this morning. The nurse in charge said it is documented that he lacks capacity, they are planning on a move to discharge to assess in a suitable placement and the discharge officer is aware. Again the word preference was used so I had to explain again. She said he doesn't have a chest infection but has not had CT scan done yet. She said I could visit at 4. So I went for my bladder treatment then straight along the corridor to his ward. He was in bed, he looks quite frail. I'd taken another magazine and a book. Dementia nurse joined us and talked about the plan but he's not happy about it. He doesn't want to go in a home just wants to be home with me and most of all his cat! After she had gone I talked to him about it a bit more and used the words halfway house that we'd used yesterday. He's a bit more amenable to that. The dementia nurse will call to see him tomorrow morning and I will go in afternoon again. The dementia nurse is asking his consultant to talk to him about everything and also to phone me. So at last they are seeing some of what I've been dealing with. He's convinced he can stand and walk and will only improve when he's comes home. We'll see what tomorrow brings.
Good luck. I have noticed that professionals seem to love “capacity “ . It seems to override common sense a lot of the time.
@yorkie46 , that seems a step in the right direction, though you thought you were there a week or so ago and things flipped, but I can see you are slowly getting through to them. How they think it is your 'preference' is beyond me. A move somewhere where your husband can be properly assessed is obviously what is needed, not a preference at all.
Take care of yourself in all this as much as you can.
Take care of yourself in all this as much as you can.
Well done, you have made a lot of progress by patient persistence. Keep being very firm. The multi-disciplinery meeting will be to determine his best interests - you should demand to be at that meeting and you should make it 150% clear that he will be in danger at home. He will want to go home. Most of the residents in care homes would prefer to be at home but they would also prefer not to be old, not to be infirm, not to be unwell and those are not realistic preferences. My mother wanted to go home but couldn't get out of her chair on her own and needed two carers to help her use the toilet. You are going to have to go with what he needs not what he wants.
Thank you all. I know I'm still not there yet and anything could change. Yes I know he will always want to come home and I understand that. Who wouldn't prefer to be in their own home. I've tried to explain to him that his own home would be vastly reduced to his bedroom. This would become like an extension of the hospital with the equipment he would need. Yes he would have a window but the position of the bungalow would mean all he would see is the tops of trees and houses. He would live in the one room. If he goes to a care home there is every chance he will be able to be taken to other rooms and be with people he can talk to. Unfortunately he always goes back to only wanting to be cared for by me and whatever happens with his mobility that is never going to be an option again. I know this is going to rumble on for a long time yet. My only hope is a placement is found soon and it's somewhere he likes. I think he would now happily return to the care home he was admitted from but I don't think that is a possibility as I don't think it's suitable any more. Pity because I think he would accept that. As far as preference goes I keep telling them my preference would be that he is fit and well but that is not going to be the case! I'm trying to be realistic!
Had a phone call from the consultant today. He had been to see my husband who had no recollection of meeting him before even though he had spent time talking to him previously about the situation. He said he also had no recollection of seeing the physios who had been with him earlier this morning. The consultant says my husband lacks capacity. He has no understanding of his current condition or that he needs 24 hour care. He has no understanding of the safety issues or risk of falling and no understanding of how all this impacts me. For these reasons there will now be a beer interests meeting to ensure that the decisions that are made for him are legal. He needs 24 hour supervision which would be impossible for me and if they took me out of the equation he would not be safe at home with a care package. The consultant has referred to social work team to arrange things. I now just have to wait to hear. He also said he has moderate vascular dementia which I assume is in addition to the frontal lobe dementia he was originally diagnosed with. He has some Parkinson's type traits and some evidence of stroke both of which I have long suspected. I asked if, in his opinion, the inability to walk is connected to the dementia, he said yes. I asked if there is any possibility this would improve with physio, he said no. I asked if he has been told this, he said yes but he doesn't accept that he can't walk. He said because he can hold quite a good conversation he can come across as perfectly fine but he isn't. I told him that none of what he was telling me came as any surprise and that I fully agreed with everything. I wanted to say that the only surprise is how long it has taken professionals to realize that what I've been saying for over a year is actually correct! So now I'm just waiting to hear about the meeting and what happens next. I visited my husband this afternoon and he is still talking about coming home. I decided not to get involved in conversations about it. There seems no point now in me keep trying to get him to understand that he won't be coming home. I just told him they won't discharge him until they consider he is well enough otherwise he would just end up going back in. I did mention to the consultant that he's depressed being in that room on his own with no stimulation or distractions. He said he would look at twerking his antidepressant medication. When I visited this afternoon a nurse told me she had got him an ipad and set up a film for him. It certainly seems to have helped. I dread the point when he is told he can't return home but I'll just have to hope he doesn't make it too difficult for me. Thank you all for your support through all this. I know it's not over yet but I feel I'm a huge step further on.
That is so good. I hope you have the consultant’s name so if anyone else starts talking about your husband coming home you can refer them to him.
I think anyone would be depressed in a room on their own with no windows, so I’m glad he has something to occupy himself with.
Once he is settled in a care home l’m sure his mood will improve vastly,
I think anyone would be depressed in a room on their own with no windows, so I’m glad he has something to occupy himself with.
Once he is settled in a care home l’m sure his mood will improve vastly,
Hopefully this story will have a good ending. I think it illustrates how capacity assessment is sometimes not done adequately in hospitals and how professionals who should know better can be less than thorough and can fail to understand the Mental Capacity Act 2005. Anecdotally we have heard that sometimes people are asked who the Prime Minister is, which has no bearing at all on whether they have capacity to make a specific decision such as where to live.
Capacity has to be assessed for each specific decision yet we keep hearing that so-and-so "has capacity" in a general way. To have capacity for a decision a person has to be able to understand information given in relation to the decision. If the decision is about where to live that must include information about his/her condition, prognosis, care needs and the impact of the decision on other people. They can of course ignore the information or choose to deliberately disregard it but they have to understand it first. With dementia we all know that inability to understand that anything is wrong is common and in many cases that is critical information in relation to the decision to be made. Even if a person does understand relevant information he/she must go on to remember it for long enough to evaluate the pros and cons of different options and must be able to do that thinking process. It is actually quite a high bar to cross when a big difficult decision has to be made where lots of things have to be considered.
So when a health professional says that Joe Bloggs has capacity it may be worth asking how that assessment was carried out and what evidence was recorded and challenging the assessment if it was not done properly.
Capacity has to be assessed for each specific decision yet we keep hearing that so-and-so "has capacity" in a general way. To have capacity for a decision a person has to be able to understand information given in relation to the decision. If the decision is about where to live that must include information about his/her condition, prognosis, care needs and the impact of the decision on other people. They can of course ignore the information or choose to deliberately disregard it but they have to understand it first. With dementia we all know that inability to understand that anything is wrong is common and in many cases that is critical information in relation to the decision to be made. Even if a person does understand relevant information he/she must go on to remember it for long enough to evaluate the pros and cons of different options and must be able to do that thinking process. It is actually quite a high bar to cross when a big difficult decision has to be made where lots of things have to be considered.
So when a health professional says that Joe Bloggs has capacity it may be worth asking how that assessment was carried out and what evidence was recorded and challenging the assessment if it was not done properly.
Haven't posted for a while as not a lot significant has happened. Now looks possible best interests meeting will happen tomorrow afternoon. Nurse told me he is 'medically optimised', ridiculous jargon! I now hope they can find a suitable placement quickly because he needs to be out of there for his mental and physical wellbeing. On Saturday I discovered because I get information on some of his medical record via my email that he had lost 4 kg in a week. When I spoke to the ward sister about it she clearly wasn't aware until she looked at his notes. It's possible this is due to lack of appetite but more likely because he was choosing things from the menu that he didn't like because he didn't understand what he was ordering. Didn't realize he could have sandwiches for one meal. I was given a menu and piece of paper to write down what he would eat. I also pointed out that he needs extra help to choose. Unfortunately because he is verbally quite able it belies the fact he doesn't understand. Despite my best efforts he still seems to be getting stuff he can't eat! He needs to be somewhere he will be monitored properly.
Thanks for the update.
I do hope the Best Interest goes ahead tomorrow, with a good outcome, so that he can be transferred to a suitable care home.
xx
I do hope the Best Interest goes ahead tomorrow, with a good outcome, so that he can be transferred to a suitable care home.
xx
There were 12 patients in my husbands dementia ward (no idea why they call them service users) and the staff tried their best, but it was like puppies in a box. Because he stayed in his room, they loved him. He had an en-suite room, but he didn’t know which door was which. The loo paper holder was a metre away from the loo, and the sinks were the touch sensitive ones that he didn’t know how they worked. Nothing was set up for a dementia person. At the end of the 3 months he was wheeled out, because there was no one who was looking after his physical self. Short staffed, and the actual system is flawed.
Well the best interests meeting went ahead on Wednesday afternoon. The consultant was very clear about my husbands current condition and that he does not have mental capacity to make the decision about where he is discharged to. He said that because he has good communication skills he comes across as OK but dig below the surface and he doesn't understand that he can't walk. He believes that if he goes home everything will be fine and he will get better. He has no ability to retain the information given to him or to weigh up the consequences of coming home or the impact on me. He was quite clear that he requires 24 hour supervision and care. He forgets he can't walk and will try to and will fall wherever he is living but this would be better dealt with in a nursing home setting. The nursing staff and therapists were also in agreement that he needs 2 people plus a Sarastedy to move him safely from bed to chair. He doesn't believe he can't walk and tells everyone he has got out of bed on his own when they weren't looking and walked to a chair. As I have POA I then had to make the decision that the best place to meet his needs and for him to be safe is a nursing home. He will be discharged initially on the discharge yo assess pathway but this is expected to be come long term. The worst part was that I then had to explain this to my husband. Luckily the dementia nurse agreed to come with me to do this. His reaction was as I expected. He became very upset and angry and all that anger was turned on me. He told me I don't care about him and that if things were the other way round he would move heaven and earth to keep me at home. This was all too much for me and I had to leave the room because he wouldn't listen to anything I was saying. The dementia nurse stayed and talked to him and by the time I returned he was calmer. We tried to steer the conversation away from the subject and on to happier things. The dementia nurse left us and I stayed for a short time. By the time I left he was saying he would only stay in the home for 4 weeks. I was OK that evening but exhausted. Next morning reality hit me and I woke up crying and questioning my decision. The guilt is going to take time to get through. Does it ever leave you? I've messaged the admiral nurse to arrange a visit. I think the worst thing is I know I'm going to go through all this again when his assessment period ends and he has to be told he won't be coming home. Yesterday I went to see him and it was as though that conversation had never happened. He didn't mention it but continued to talk about coming home. I didn't get into too much discussion about it, he had some awareness that he might have to go somewhere else first. He remembered the consultant seeing him last week and 'laying down the law' as he put it. He said he had told him he just wants to go home but then said he couldn't remember what the consultant said and didn't want to remember. I decided it was best not to cause further upset by going over it all again but I just said we'll have to see what they say. I won't be visiting today but the dementia nurse said she will go to see him. I now have to wait for them to find a suitable place for him and just hope he will accept it without causing more upset and will settle in quickly. He is in bed the majority of the time in hospital and there's no way I could cope with that st home. I know it's the best decision but it doesn't make the guilt any easier to live with.
I sounds like the Best Interest meeting went as well as it could and Im glad that the psychiatrist agreed that he has lost capacity and that he should be in a nursing home. Its just a shame that the responsibility to tell him fell to you. I agree with @Sarasa - tell him its doctors orders and it is just for a few weeks and keep telling him this even when it is made permanent.
Guilt is a constant companion (even though it is groundless) and I think a big part of that is doing things against their wishes. Even though you know that they cannot understand, you want them to agree that it is for the best and it is hard to make that decision in the teeth of their denial and anger. Remind yourself it isnt just you that thinks it is for the best - that is what the BI meeting was for.
(((((((((((((((((((((((((((hugs))))))))))))))))))))))) it will take time for your heart to catch up with your head
Guilt is a constant companion (even though it is groundless) and I think a big part of that is doing things against their wishes. Even though you know that they cannot understand, you want them to agree that it is for the best and it is hard to make that decision in the teeth of their denial and anger. Remind yourself it isnt just you that thinks it is for the best - that is what the BI meeting was for.
(((((((((((((((((((((((((((hugs))))))))))))))))))))))) it will take time for your heart to catch up with your head
This is not your fault. It is dementia’s fault. Be kind to yourself, you are grieving.
Although you are POA and “made the decision”, it has been clear from your posts that the home was the only solution.
I think Sarasa is quite right, if your husband gets cross, tell him it’s the doctor, tell him it’s the social services, agree with him how terrible it is and how you are going “ to get it sorted”, and then, if he settles, talk about something else.
Although you are POA and “made the decision”, it has been clear from your posts that the home was the only solution.
I think Sarasa is quite right, if your husband gets cross, tell him it’s the doctor, tell him it’s the social services, agree with him how terrible it is and how you are going “ to get it sorted”, and then, if he settles, talk about something else.
I wouldn't worry about the end of the four weeks. It is likely that he will not know the date and will perhaps have forgotten everything that has been discussed. Sadly he will probably want to go home from day one to the end of life but you will develop distraction strategies to deal with that I am sure. You have done all the right things @yorkie46 and achieved the best outcome.
Thank you all. I'm still trying to come to terms with this decision. I know it's the right thing and I really don't think I could manage with him at home but in the early hours of the morning the worries start to creep in. Everyone tells me he will probably settle in to the nursing home better than I think but I still have my doubts. Does he have to be told if this becomes a permanent arrangement? Yes I think he does. I think he will realise that he's been there for the period of assessment and will want answers as to why he's still there. I know I can't face telling him again. Then assuming he does stay in the nursing home I have the worry of the cost. Most are very expensive and I know he will have another financial assessment but I can't afford to pay top up fees. I've looked at continuing healthcare funding but it sounds like that is very difficult to get and the odds are stacked against that. If it turns out funding isn't available for him other than his assessed contribution I'm going to be forced into having him home. Even if he does stay in the nursing home I will still have a home to run without his income which is going to be difficult. His income paid for the fuel bills, council tax and water charge plus the running costs for the car. I will now have to take over all of these from my income. I'm quite certain that in time I will have to move to somewhere less costly to run but if I sell our home and have profit from the sale half of that will be his and presumably taken into account for care costs. So many things are buzzing round my head.
