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Mental capacity and care choices - battle with social worker!

Discussion in 'I care for a person with dementia' started by Champers, Jun 21, 2019.

  1. Champers

    Champers Registered User

    Jan 3, 2019
    188
    #1 Champers, Jun 21, 2019
    Last edited: Jun 21, 2019
    I’ve posted at depth on the care home vs home thread, but today we were summoned to a meeting at the hospital regarding MILs imminent discharge.

    In a nutshell, she has had 24/7 home care, for the last month, that has been a catalogue of issues with health problems, her unreasonable demands etc etc so we arranged for a two week trial period in a care home - which she agreed with.

    The hospital social worker called us yesterday and said he had talked to her and she said she didn’t want to go into care, she wanted to go home. He believes she has full capacity (after a 5 minute discussion) and that her ‘wants’ override everything. Despite the fact that we were getting calls all the time from her carer, the care agency said they had no issues with the in house care and were happy to continue (they would say that as they have a financial interest) She has no quality of life at home, it’s bed to chair in the morning, chair to bed at night. She just sits there talking about dying. We strongly felt that a care home would offer her more stimulation, better facilities and more appropriate company. Her memory is appalling, she cannot recall faces or conversations and will change her opinion depending on whom she is talking to.

    The meeting ended up as quite fiery. For a start, we were led to believe it was an informal chat but there were 2 managers from her original care agency, the OT, the ward sister, the physio and a member of the discharge team., which we weren’t prepared for. The SW told us that someone had reported us for putting her under pressure to go into the home - but won’t tell us why because of ‘Data protection’ He was asking MIL very leading questions about wanting to go back home - of course she’ll say she would! - but interestingly enough she said, “I’ve NEVER have any carers to look after me, I had a friend who used to come in.” So she’s clearly not remembering the arrangements before her hospital admission. We pointed out that if, as they are implying, that she is very suggestible, his line of questioning was also very leading.

    The SW intimated that, if necessary, the authorities would go to court over this. I’m absolutely destroyed. All we want is to do the best for MIL. We tried home care and were fully supportive of it to start with, it didn’t work. Her mental well being is suffering and we have no agenda other than to make her last few years more bearable.

    As we don’t have POA, my husband has said that we may well have to say that if the state insist on stepping in - it’s over to them. We will have no part or help in anything they want organise and we will not take any calls regarding issues. We will visit MIL as guests and as we had an informal arrangement to pay her bills, including her care ones, we will step back and leave that to the authorities. She has not been able or willing to manage her finances for years and doesn’t have a clue actually of the size of her imvestments and where they are.

    I’m ashamed to admit I just burst into tears during the meeting. I have issues with my own mother who is going fast down the dementia route and wearing me out, then to get a SW who has ade me feel an absolute crud, must when we thought we had MIL settled.
     
  2. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    611
    Oh @Champers, I'm so sorry to hear this. Nothing practical to add as I haven't been in this position (yet), but I'm sure someone who has experience will come along with some advice shortly. Taking a step back may be the best thing to do in the short term.
     
  3. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,870
    Female
    I think I would do the same in your position - refuse to participate in the arrangements as you believe them to be the wrong thing for her. I believe another member did something similar this year when a SW wanted to move her loved one out of a CH. Hopefully she will be reading this and reply.

    My mother is in a care home and she has absolutely no grip on reality, her speech is very muddled and she just tells people what she thinks they want to hear. You'd get a different answer depending on how and when you asked the question, because she wouldn't know what you were asking. I don't know why SWs and other professionals don't comprehend this.
     
  4. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    I do feel for you. It is desperately frustrating when they take this adversarial stance.

    You know you are right so stick to your guns. I think you are doing exactly the right thing by stepping back and taking the attitude of 'your decision, you take the consequences.'

    I managed to whisk my mother straight to a care home (from hospital) because that was what she needed. No one really questioned this - I got the feeling the Discharge Team just wanted the bed freed up ASAP. But once in the CH I came up against the DoLS Team who started making silly suggestions about mum moving to a flat with carers coming in. They also appointed an advocate for her, because I wanted her to stay at the CH and mum - apparently - wanted to 'go home'. We did reach agreement in the end but not without a lot of unnecessary arguments. I was also shocked by the leading questions they asked mum: 'You do want to go home, don't you?' etc. She would have agreed to anything they suggested at the time, particularly as she thought she was on a cruise and had been flown there by helicopter after helping rescue children from the plane crash.... o_O

    Good luck. The whole question of mental capacity is crucial at this point. Mum did a very good 'hostess mode' back then and easily convinced a consultant at the hospital (a neurosurgeon, for heaven's sake!) there was nothing wrong with her. :rolleyes: He was really shocked to hear (from me) than none of the elaborate family history she'd told him was true :D
     
  5. Moggymad

    Moggymad Registered User

    May 12, 2017
    407
    Female
    I really feel for you @Champers. This question of capacity really irks me as do these social workers that reign superior over families who know their own relative better than anyone.
    My mum recently had a review of her care in the care home where she's been for 2 yrs. She is LA funded & since being in there has only had one follow up review after 6 weeks. In the intervening time mum has lost all mobility, virtually all memory, has to be fed & watered purée food, is doubly incontinent & can only speak about 2 words before forgetting what she wants to say. The SS asked her who I was, she couldn't recall my name, but knew me. Asked if she knew where she was, was she happy etc etc. At that question I was nodding to mum to say yes, thinking what would happen if she said no, which she may well have done 5 mins later when they needed to hoist her. She is in later stages of Alzheimers yet they persist in asking these stupid questions testing her capacity, for which she already has a DOLS in place.
    The fact that your husband (her son) has suggested stepping back then perhaps that's what you have to do now. So sorry as it will be hard to do when you are only trying to do your best.
     
  6. Imstressedout

    Imstressedout Registered User

    Jun 6, 2019
    30
    Definately step back. Any calls from the agency, refuse to become involved with and tell them to contact the social worker. It feels tough but they should realize quite soon that you are right. It’s the best way in the long run. Good luck
     
  7. Baker17

    Baker17 Registered User

    Mar 9, 2016
    302
    Please don’t be ashamed that you burst into tears I did exactly the same, in fact I was hysterical. It was the same type of leading questions that my husband was asked and the same thing happened he wanted to go home. I also know that a relative of my husband’s had made accusations about me, but, the same as you I could never find out what they were. I am disgusted with the whole process actually because for the previous ten years when I was looking after my husband at home without any help I was just left to get on with it, but when decisions on care need to made THEY suddenly know best. I asked if THEY had spoken to our memory matters team, it turned out they hadn’t thought it necessary and even when the team gave the history of my husband’s illness THEY deemed the team not to be experts. You really couldn’t make it up and I wouldn’t have believed the attitude if I hadn’t experienced it for myself.
    I couldn’t step back and let them take over and I’m still in conflict with them after two years, maybe I should have stepped back but all I want for my husband is to have a peaceful and to be as happy as possible during his final years.
    Good luck with whatever decision you make and look after yourselves as well xx
     
  8. Timebar

    Timebar Registered User

    Jun 13, 2019
    17
    Hi Champers

    I'm not quite sure I understand what has gone on here. What on earth has it got to do with the previous care agency? Why were they there? I could understand it if the current agency were present.....

    I assume your MIL is self funding? Ask to see the social worker's mental capacity assessment which shows she has capacity. To do a proper MC assessment takes way more than a 5 minutes chat with the patient and involves a lot of form filling. They should also be speaking with you as the relatives before coming to any conclusion! They're just trying to strong arm you!

    Do you have records of when the agency were calling you and what about? It may help if you have something to show that it wasn't going that well.

    You could always (dirty trick I know) take her house keys off her. It can't be helped if she loses things can it? They can't discharge her back home if they can't get in.

    If she does end up going home and you remain involved, take copies of the daily records from the carers to see what they are doing to support and encourage her through the day. If someone has 24/7 care and they are just transferred between rooms it's disgraceful. They should be taking her out and providing all sorts of mental stimulation. It really is poor care at home otherwise.

    Theoretically 24/7 care at home would be seen to be the ideal by social services and I suspect the social worker has this "ideal" in their mind, particularly if they aren't paying the bill! But if it's poor care, then it isn't ideal is it?

    It seems to me that you have a few options. One as you describe, let them get on with it. Trouble is they will have to go to the Court of Protection for a deputyship to manage her finances and welfare. Then you would ultimately have no control for the forseeable. Then could then stop you moving her at a later date.

    If she is fit for discharge, as long as she is agreeable when you speak with her (tape record it on phone) then you could take her to the home for respite anyway. The d/c co will want your mother out of the bed, social services will have to move mountains very quickly to go to court.

    Or you could have her go back home gather evidence re the poor care of the agency and then have her assessed and moved. You are then out of the clutches of social services.

    My Dad who was self funding was in residential care when he was admitted to hospital. His needs had increased and the hospital wanted to discharge him back to the home. I said no as I wanted him to go to a nursing home, rather than residential. I had to collude with the residential home manager and got her to say she wouldn't accept him back as his needs were too high, which was true. So the hospital had to wait whilst I found a nursing home I was happy with. Sometimes, you have to play these "professionals" :(

    Best of luck!
     
  9. Champers

    Champers Registered User

    Jan 3, 2019
    188
    #9 Champers, Jun 21, 2019
    Last edited: Jun 21, 2019
    Thank you all so much. You have given us so much strength with your replies.

    Stepping back is clearly the way to go. We have done so much and put so much in place, ironically for both our mothers, that I think we’ve actually created a bit of a false illusion. It seems to appear to outsiders that everything is ticking along nicely but if we withdraw our support, the authorities will suddenly see - I hope - just how little MIL can actually do without our constant prompting and arranging. She has delegated all her decision making for years to us - totally support dependent. Whenever we’ve offered her choices, she’s always replied, “I’m in your hands.” Or “I leave that to you. “

    When we popped in this afternoon to check her property, there was an envelope on the mat from the home care company that was probably the latest bill. Normally, we would sort it out and pay it immediately by bank transfer. As the SW clearly thinks MIL is completely capable, we are leaving it there for MIL to sort out herself. It will be interesting to see how they get their payment as she hasn’t a clue about what and where her investments are or even how she can get access to her account to pay it.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,777
    Female
    South coast
    I would actually step back.
    If it goes to the Court of Protection, not only is it expensive, but you would probably lose. Then after she goes back home and everyone realises that it was a wrong decision, they cant just move her into a care home, because she is at home due to a court ruling. So the case would have to go back to the court for the decision to reversed - and that takes time.

    Much better for them to discover without a court ruling that she cant stay there
     
  11. Champers

    Champers Registered User

    Jan 3, 2019
    188
    Hi there Timebar - yes, MIL is self funding.

    The hilarious thing is, this care agency were sourced and recommended by the NHS after MIL’s previous discharge in May. The manager of the agency agreed with me that it wasn’t working at the time and residential care might be the option (I actually made a note of her comments at the time) and yet this same woman sat in the meeting today and said as far as they were concerned, everything was fine! I have logged everything, and I raised dates and times of incidents but that was glossed over as merely settling-in issues, despite the fact that they were still ongoing until her hospital admission last Saturday.

    The SW is doing a mental capacity test this weekend and is reporting back to us on Monday. Again, this was discussed with MIL sitting there! My husband asked if it was really appropriate talking about it with her present but that was skimmed over and his reservations ignored.

    You have raised a very, very valid point about the lack of stimulation. She’s currently paying £1500 a week to have a meal cooked, helped to wash, taken to the toilet and put to bed, you’re right - it IS disgraceful. Hardly best use of her own money. Surely there is a duty of care to ensure that she is getting best value. I wish I had made that very point in the meeting. I will email the SW and make that very point.

    I spoke to the residential home manager to explain the current position and she said, there’s nothing to stop us agreeing that WE would take MIL home and that we would look after her, then 24 hours later, taking her ourselves to the care home. However, as we are now on record as ‘risky’ relatives, I guess that sort of thing will be watched for?

    I’m still stunned that a couple of law abiding respectful citizens who’ve always tried to do the right thing are now being almost accused by the authorities of abuse of an elder.
     
  12. Champers

    Champers Registered User

    Jan 3, 2019
    188
    As a cathartic exercise, I composed a real stinger of an email. I keep going back to it and tweaking it and will keep it in my arsenal until needed. I’ve highlighted the fact that by the SW stepping in and interfering has already caused a loss of trust within our family.

    The ironic thing was MIL rang from the hospital this morning asking us to bring some clean clothes in for her and to check that her money was safe. I mentioned the meeting that she was part of yesterday and she said, “What meeting? Where? I’ve not been to a meeting!” She had no recollection at all of it - despite the length of it, how fiery it was and me having to leave the room because I was distraught.

    And yet, the social worker still believes that she has full mental capacity.
     
  13. Timebar

    Timebar Registered User

    Jun 13, 2019
    17
    It'll be interesting to see the outcome of the mc assessment. Given the situation perhaps a finding that she has capacity would be beneficial. Then home she goes and you can carry on with the agency for as long as you wish or do what the care home manager suggests.

    However, if she is found to have no capacity then it seems that social services will make a finding of bests interests that she is to go home. I suspect that they'd be able to enforce this if they had to. Then it may get more tricky going forwards.

    I don't know where you are but £1500 p/w seems pretty steep. Most care homes/nursing homes may not be charging anywhere near this. Have you checked the cost of 24 hour at home care with other agencies?

    Unfortunately some social workers are idealistic rather than pragmatic. See how it goes, but don;t rue out making a complaint.

    Homecare can be really great and it works for many, particularly those who have many interests and visitors. But some people with dementia need the stimulation of lots of different people and things going on, if only to watch. Not plonked in front of the telly while their 24/7 carer is on facebook!

    My MIL who has Alzheimers is stuck at home with FIL. They are refusing any care. But her world is narrowing to the sofa and her bedroom. It's awful. She'd be better off in a decent care home.
     
  14. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,870
    Female
    I don't follow the logic. If she has capacity then she can make the decision herself and SS and the relatives must abide by it. But if she is found to have no capacity, her wishes do not have to be followed if she is thought not to be choosing in her own best interests.
     
  15. Timebar

    Timebar Registered User

    Jun 13, 2019
    17
    If SS say she has no capacity to make the decision (about where to live) herself, then a decision is obliged to be made (with input from others and her "known" views) in her "best interest". From what Champers has said from the meeting she attended this is likely to be that she should go home. SS could, if they wished, look to enforce this as a legal process has made this determination.

    If SS says she has capacity, then she would need to come home. But it sounds as if her capacity fluctuates and she could easily make a different decision on a different occasion. Therein, she could still go into residential care without SS involvement as she is self-funding. So, I was suggesting that it may be beneficial if she was found to have mental capacity.

    It is tricky! :)
     
  16. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    611
    @Champers I hope the meeting today went well and that you and your husband are st peace with whatever is decided, even if it means you have to take a step back for a while.
     
  17. Henny

    Henny New member

    Jun 24, 2019
    3
    I'm in a predicament . My mum is now in late stages of dementia. She was assessed 2 weeks ago. I feel now after taking care of her at her home, for 2 and a half years that she she has become unsafe and I feel , she needs to have 24 hour supervision. S s however feel she will not settle in a home and would have to go back home. She's microwaving cat food. She's burning toast in the toaster, fire brigade been called twice. She still smokes, she sleeps most of the day , but is alert at night . She sleeps on the settee (she has for years fully clothed) , with the side gate open and back door unlocked or open. Every light is on in her house. In the last 3 months she has become incontinet , having accidents and hiding dirty incontinence pants in cupboards in the kitchen. She forgets when she s fed the cat and we have to leave out 6 pouches of cat food per day . Spread out through the day . Carers are in 4 times a day so they leave 2 at a time. She microwaves her micro dinners for him too ( up to 3 at a time) . Door sensors and plug sensors are to be fitted now to check her movement at night and stop her using microwave and toaster. Planned to be fitted today but SS didn't complete paperwork. Only a flood monitor fitted in the bathroom as she s flooded it down to the living room, she won't wear her lifeline or falls monitor. She cannot use the phone any longer. After 5 minutes she doesn't remember who was just there. .
     
  18. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,870
    Female
    Do you mean you think she wouldn't settle in a care home and would have to return home? I think that is fairly unusual, and anyway what have you got to lose by trying? Some people settle quickly, others take longer, but most do settle.

    Have SS agreed that she should go to a care home - I really hope so given the description you give. There is no dignity for her living the way she is, and she's unsafe too.
     
  19. Champers

    Champers Registered User

    Jan 3, 2019
    188
    #19 Champers, Jun 24, 2019
    Last edited: Jun 24, 2019
    You’re right Timebar - her capacity does fluctuate.

    As luck would have it, the social worker (sorry, enabler, as they like to be referred to today) was on the ward when we visited MIL at lunchtime. My husband is still very fired up so the SW refused to talk to him initially.

    We decided between us that we would do good cop, bad cop and I would be the voice of reason and moderation and talk privately to the SW as my husband and I have pretty well ironed out all weekend what we wanted to say..

    I pointed out to the SW that he clearly had a perception of us being the unscrupulous relatives circling her hospital bed trying to persuade MIL to take the cheapest option. I explained that we wanted the best but financial cost was a consideration in as much as she is paying £6500 PM to be taken from her bed to her chair and back again, only to stare at 4 walls, albeit in her own home. For £3500 PM in residential care, she would have mental stimulation, activities, changes of faces etc. He asked me how much MIL had in savings but I refused to answer that question because it should have no bearing on the authorities ultimate decision. I reminded him that he had a duty of care to give her all the facts and figures if he believed she was capable of making a free choice.

    He said that MIL had again today expressed a wish to go home, but I suggested that a lot of elderly people often talk about “wanting to go home” meaning they want to return to a place and a time before they had illness and disability and it wasn’t always a literal meaning of the phrase. To be honest, MIL’s home is now so full of gadgets and aids it’s not a home at all - it’s like an institution - plus she has strangers staying in her house all the time so it will never again be home like it was in her memory. Most of her furniture has been removed to allow the facilities to be in place so the whole house has lost its soul.

    My husband and his mother have had a relationship for years ( even before her confusion set in) whereby she wanted him to make all her choices and decisions. She delegated all financial responsibility and always asked him before she committed to anything. Now, when she needs that more than ever, the State have stepped in and taken over completely.

    Unfortunately, he seems like he is going to stick to his guns and take the politically correct stance rather than the practical, common sense one. He kept referring to “the law” and “clients rights” I did request that if our wishes were to be overridden, at the very least, the care agency needs to be changed to one that puts more effort into MIL’s mental well-being rather than a 20 something carer who sits looking at Facebook all day.

    My husband and I have made up our minds that if MIL is returned home we will take a complete step back and have absolutely no part in any of the care package support. MIL lives in an isolated village with no public transport and the carers supplied had no way of weekly shopping, collecting prescriptions or taking MIL to appointments without our help. We will no longer be involved any further as I think we were making it too convenient for them.
     
  20. golfer38

    golfer38 Registered User

    Aug 7, 2016
    12
    Hi
    I don't often post on here but when my husband was asked where he wanted to stay he always replied "I want to go home" but when asked his address he always said his address was a childhood address. Perhaps they should ask your MIL the address where she wants to stay.
     
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