Feeling in catch 22.

Discussion in 'I have a partner with dementia' started by Roseleigh, Dec 5, 2019.

  1. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    291
    My other half has become increasingly difficult over the last six months, bad sleeping volatile moods and aggression at times. I want to put him in a care home but because of his recent unpredictable volatility, care homes are rejecting him on assessment. I am increasingly stressed and worn out, and concerned for the draining impact on my own health. :( It doesnt help that I also supportt my v. aged frail but independent mother. We'd be self funding iniitially.

    The dementia nurses have referred him to the mental health team because I had to remove him from a CH when he grabbed another patient and wouldnt let go, He is on Rispiredone now but hasnt been completely settled, though improved The social worker has applied for NHS CC funding, but of course he may not get it. The mental health nurse is coming tomorrow, but what can I do if no CH will take him? It seems so unfair.
    The GP has told me I wont be able to keep him at home much longer and two home care managers said they dont know how I managed this long.

    I would like them to take him to the respite wards in the mental health hub, assess his meds and behaviour and maybe help me find a home by confirming he's stabilised.
    Anyone else had similar experiience? Its so bad that a sole carer has to manage someone care homes wont take!
     
  2. Kennyboy

    Kennyboy Registered User

    Oct 31, 2019
    50
    Hi what a terrible situation you are in, I understand to some extent what you are going through, my husband and myself have been caring for my sons Nan, ( his biological fathers mother) we didn’t marry but had a son together and then went our separate ways, my son had contact with his dad who died 4 years ago and his grandparents, my sons grandfather died suddenly at the end of August and his Nan was diagnosed 6 months ago with Alzheimer’s she has had this condition for years but the grandfather only sought help 6 months ago. His Nan has always been a volatile aggressive woman, which now is even worse, she is so nasty, been waking us up at 3 in the morning and if we don’t get up she would go nuts shouting and screaming at us. She was physically aggressive to her husband and she is quite a big woman, we have come home today as I can no longer care for her, we had a delivery earlier today and whist the men were taking bulky furniture upstairs she was trying to get up there, I told her to wait until they had finished, she went mad screaming in my face with her hand up I really thought she was going to hit me, she told me to p—-s off and get out of her house, so we did. She is going to have a private care firm 24/7 as companions as physically she is capable. Her behaviour is what concerns me, I worry that if she is physically abusive to the carers the firm could pull out and would a care home take her? What are you supposed to do you can not carry on like this, the system lets families down that are caring for relatives with dementia there has to be somewhere he can go as you say to be assessed and to get medication to sort out his aggression. Can he be section? I think you should enlist the support of your GP for your sake, I know my health has suffered and I have not been doing it for long, the system is all wrong and basically if there is a family member caring for a PWD the authorities back off, please please look after yourself you are going to have to be selfish and put yourself first. I had to do it today and I did feel bad but on the other hand I knew I could not gone on I have serious health issues myself. Let us know how things go I will be thinking of you x
     
  3. kindred

    kindred Registered User

    Apr 8, 2018
    2,332
    Yes, this is awful. all my sympathy. I wonder if contacting an independent social worker would help? They are not that expensive and we hear good things on this forum. Google independent social workers for your area. warmest, Kindred.
     
  4. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    291
    Well thanks for your supportive words kenny and kindred. The mental health nurse came today and was very sympathetic but not loads they can do. I said I'd like him taken in for assessment and to stabilize his meds but she said there are no free beds and they dont normally take in dementia ppl, only those with mental illnesses (and I suppose suicidal and so on). She has arranged for the psychiatrist to visit urgently to discuss his meds. It is a terrible situation that there are no respite places where even hard to handle dementia patients can be taken temporarily to give carers a break and a chance to sort out care. Its not as though aggression is rare as you too have experienced Kennyboy.

    Anyway, I have become a little more hopeful today. He has had another good day , three in a row, unheard of for months, and the care home that rejected him have said that if the psychiatrist thinks he's stable on the meds, they may let him come for a day visit to see how it goes. Fingers crossed for the weekend, and that the psychatrist will say something to back me. I really like this CH and dont want to have my options limited to just a few who might take him but that I dont feel entirely happy with.
     
  5. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    291
    Kennyboy, given the experience I have had I would suggest that you see your PWDs GP to discuss her medication as quickly as possible. They will not prescribe powerful drugs to ease aggressive behaviour routinely because there are some health risks, but your PWD is certainly going to be a rsk to herself and her carers , who will pull out if she poses a threat, and her aggression is likely to get worse, as it did with my OH. Dont wait untl theres a crisis.

    I would also suggest that a CH is a safer place for a challenging PWD than being alone with a sole stranger carer who's tolerance is not fortified by either love or duty or both. Suppose she hits the carer and the carer were to retaliate? But the most likely risk is the carer simply walks out without notice.
    If her behaviour can be stabilised first of course it may work out thoug personally dont think live in carers are at all a safe option for cognitively impaired people who are so very vulnerable to physical emotional or financial abuse. Many of the ppl who do this grim job are recent migrants (who need somewhere to live) and their CRB checks only cover their time in the UK , not back in their home countries.
     
  6. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    166
    Female
    my PwD had aggressive outburst of steaming rage, so bad i had to lock him out of the house. He was prescribed Sertraline. its for depression/anxiety but also a calming influence on aggression and rage. it has worked for past 3 year. He is now on the highest dose he can have. i guess different doctors/consultant have different ideas. it works for him
     
  7. Brendan2000

    Brendan2000 New member

    Sep 22, 2019
    9
    My experience is that you have to be forceful with the authorities. They are under resourced and are usually box ticking. If they can tick a box and get you off their list they will. Human nature be a problem for them and they are more likely to do what they can. I can't believe a CH would reject someone on the terms of them being aggressive. If anything that should be a reason to take someone in. Supposing its a CH that specializes in dementia?You can play that card too. Tell the authorities that you can no longer look after your loved one because you have come to the end are about to breakdown and she is a danger to herself. My mother got sectioned last week because my sister called them told them to take her away she couldn't cope. Now she is getting a psychiatric assessment over 2 weeks in a community hospital and has had three offers of CHs. This was after months of being pushed around. The council even tried to say my mother was homeless as she moved into my sisters in the summer. They gave her 8 points needed 300 to be considered for a home when she was at advanced stages of dementia. The social workers loved this. They said they were not going to be involved until she found a new home. Knowing it would never happen and that my mum wasn't capable. Box ticked! You need to stand up to the authorities. Good luck. Don't be soft don't expect the authorities to treat you as a person more like a box to tick.
     
  8. Kennyboy

    Kennyboy Registered User

    Oct 31, 2019
    50
    9
     
  9. Kennyboy

    Kennyboy Registered User

    Oct 31, 2019
    50
    Thank you for your replies, as I said I’m at home now and the carers have started, there is no way I could have continued looking after her after her aggression towards me, it was not the first time but it was by far the worst. The care firm have an exemplary record and are highly recommended by the dementia nurses, the staff are all qualified in dementia care, and the ones I have met are lovely. There are cctv cameras in the house in all the main rooms so we do have that safety net. As I mentioned I have serious health issues, severe Rheumatoid Arthritis, Asthma and damaged lungs, fibromyalgia and high blood pressure. We only did it for 3 months and it has definitely taken a toll on myself and my husband. As I said our PWD was aggressive and volatile all her life and also physically aggressive to her husband, so I should imagine the dementia will make it worse. We have just got off her consultant tablets to help her sleep as she was waking us up at 3am wanting breakfast. Her aggression will have to be monitored I expect she will be on her best behaviour until the novelty wears off, Best wishes to you all x
     
  10. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    291
    OMG this is just what I've had with my husband, only sleeping about 5 hrs in total, waking several times a night and having no idea of time frequently wanting to go down for breakfast and furious with me if I said he couldnt because it was the middle of the night. I generally took the view if it was gone six he could have it and he'd often doze off in front of TV after. However with the new drug, his sleeping seems to be improving and the aggression becoming rarer and losing energy.

    Glad to hear things seem to be improving for you too kennyboy!
     

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