Crisis Point after 9 days in a care home

Discussion in 'I care for a person with dementia' started by Elle3, Apr 23, 2018.

  1. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    Elle,

    Reading all these now after you sent me your message.

    Hoping to see something positive on here soon for you and your dad.

    Thinking of you in the meantime.

    Jo x
     
  2. Elle3

    Elle3 Registered User

    Jun 30, 2016
    603
    Hi everyone, just a little update. I'm still not well and I haven't left the house since last Wednesday, so I am no further forward finding a suitable CH for dad which is very frustrating and I definitely feel like I'm letting my dad down now.

    I sent a message to the SW this morning, telling her this and I have had to ask for her help, if this means she chooses a temporary placement for dad, I'm just going to have to accept this, considering we only were given a one week extension by the current CH, which runs out this Friday I think.

    She also said last week, that she was going to send me a CH directory, she hasn't so I asked her again for the list, which she has now sent, which is literally just a list of names and a telephone number. So I have spent much of today searching for each of them online to find out their location and to identify the EMI ones (which was actually quite difficult) and to be honest, there isn't that many within a distance I'm willing to travel to and I don't even know if these have vacancies yet. There is a care home very close to me, which seems to be part of a chain that I want to view, there seems to be about 4/5 care homes in our area all part of this same group, so I'm really hoping I like it and it's suitable and they are willing to accept dad, because if not, it potentially rules out the others too and then I've no idea how far out I'm going to have to go.

    I also haven't seen or spoken to my dad since last Tuesday, I tried to speak to him on the telephone yesterday. The carer said he was stood near her when I rang so she tried to get dad on the phone, but all I could hear was him sounding very confused and gabbling about you can't have my money and he wouldn't take the phone from her. He is sounding much worse than normal, they also told me, he's still trying to escape, even with a 121 carer in place.

    Whilst I've been ill, I have started to read the book I was recommended by one of the members on the forum (I can't remember who now, sorry) 'And still the music plays' by Graham Stokes. I've only read about five of the stories so far, but already it's given me a better understanding of Dementia and what the care system should be doing to support these poor individuals. I am certainly going to be asking far more questions about individual care needs and I will be trying to give the care home more insight into my dads personality, previous to him getting Dementia, as this can be quite significant when it comes to how they can care and help him.

    That's it for now, I'm hoping a good nights sleep and tomorrow I might be on the road to recovery. I have my fingers crossed anyway.

    Thank you all for your support, advice and encouragement, you don't know how much it means to me.

    Elle x
     
  3. 70smand

    70smand Registered User

    Dec 4, 2011
    257
    Female
    Essex
    Wish you better Elle, and hope you are soon on the mend x
     
  4. Lucielu

    Lucielu New member

    Apr 30, 2018
    4
    Bless you Elle! My mum too is obsessing about the bank and I’ve arranged to take her back there tomorrow. She’s had her card cancelled for the umpteenth time this month. Declining me having POA too. Joys!
    If your father’s care needs cannot be met by a specialist dementia residential home then I would suggest his SW would seek the NHS to review medication urgently before looking at alternative care provision. Of course, one to one care at home is an option if residential care is not appropriate to your dads needs.
    I really feel for you.
     
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Elle, I hope you feel better soon. You can only do as much as one (unwell) person can manage. Nobody here doubts your obvious and deep care and concern for your dad.
     
  6. Jafm

    Jafm Registered User

    Jul 14, 2017
    1
    Do try memantine and / or risperidone. My partner aggressive but is now far calmer and NOT doped to the eyeballs. He is in a second home which is lovely but first we tried one who said they specialised in Alzheimer’s patients, but who refused even to take him when we arrived as he was loud in reception saying he wouldn’t stay! And they had been to assess him too....
     
  7. Nessie21

    Nessie21 Registered User

    Sep 23, 2010
    10
    SUFFOLK
    Dear Elle
    Had a very similar experience to you a few years ago. Put my mum in what i thought was the nicest care home near to us. She in total lasted 3 weeks in that care home. In those long 3 weeks she escaped three times walking out through the main door! walking out through a gate left open by a gardener and finally escaping over a 6ft fence by stacking chairs and tables next to the fence to be found 3 miles away in her pyjamas and slippers! She broke windows threw furniture, hit residents and was the most unruly person during that time because she was so confused and unsettled. After 3 days they were trying to get us to take her out of there. We obviously fought that and tried to get them to keep her. They worked closely with the mental health crisis team and kept changing her drugs all the time. What we found when we visited was the only way they could deal with her was to drug her a lot so she was then wandering round dazed and confused and walked into a wall and cut her head open! She also fell twice during those 3 weeks. Eventually against our wishes she was sectioned (they told us afterwards so that we couldn't object!) and they moved her to a secure hospital unit. As much as i wanted to keep her there in hindsight it wasn't the right place for her and if there only way of dealing with her was to over medicate you don't want that either. After 2 months in a secure unit they levelled out her medication and she was allowed back to a care home but i was told it had to be an EMI care home. She ended up in a small unit with 4-1 care which suited her fine it cost a lot more but it kept her safe and she was much happier.
     
  8. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    Thinking of you Elle...get better soon
     
  9. Sharonk43

    Sharonk43 Registered User

    May 24, 2015
    29
    There is no point contradicting or questioning your dads view on things as this will just cause more confusion and upset for him. I hope a better and more secure CH can be found and as many have said they can not just turf him out. If he is self funding then you would be better sourcing a new place yourself, it sounds like your dad needs to be on some sort of medication, something to just relax him a little but not turn him into a zombie. Just din’t Put him in the first place you find just because you are desperate for somewhere, if you can spend time with other residents and there appearance and how they come across will give you an idea of how good the care is.
     
  10. Elle3

    Elle3 Registered User

    Jun 30, 2016
    603
    Thank you Lucielu. This money obsession seems to be quite common and after reading the book I mentioned above I've been thinking a bit more about why my dad is obsessed with it, why he was storing/saving it, why he was hiding it and why he started wanted to carry it around. I've tried to think about his personal situation/background and kind of where his mind is at the moment, probably aged about 25 and I think I've begun to understand his deep rooted needs, which now make a lot of sense. What to do about it though is a different matter.

    Luckily my dad never had a bank card, so I never had to deal with the forgotten pin numbers, I feel for you there.

    It's difficult knowing what kind of care is best. But now I'm a bit wiser I'm starting to look from a different viewpoint and ask different questions. I also think the SW is supporting me a bit more this time as I don't think she wants to go through this again and especially she seems to have genuine concerns for dads welfare, which is nice.

    Good luck with your mum, try to think back why she might be obsessing about the bank, it could be some deep rooted need and might help you break it.

    Take care.
    Elle x
     
  11. Elle3

    Elle3 Registered User

    Jun 30, 2016
    603
    Thanks Jafm, I've spoken to the SW this afternoon and she said she went to see dad and he seemed to be fine, he looked clean and healthy and was showing interest in what was happening. She couldn't get any sense out of him though, but she said at least he wasn't asleep. She said she is very disappointed in the home, apparently she's been asking for his care records and the hourly log which we are paying for with the 121 carer, but it seems as though it's not being done. So she's told me not to even think about paying for it yet

    I'm not sure drugs are always the answer on treating Dementia, they should be looking at the reason for the behavioural change and try and deal with that first and use only drugs as a last resort. Dad didn't need drugs before going into the home, there should have been no reason after just one week to start giving them to him. But it's happened although I'm hoping in a different more understanding environment he may settle and not need them.

    Glad to hear your partner is now settled.

    Take care.
    Elle x
     
  12. Elle3

    Elle3 Registered User

    Jun 30, 2016
    603
    WOW a fellow escapologist, three times that is very impressive.

    It is sad that medicating seems to always be the answer, when maybe if they looked at the reasons and causes for someone trying to escape and getting agitated and aggressive then maybe they could find an alternative solution. But it seems unfortunately many care homes just don't have the time or staff to do that.

    I'm glad that you finally found somewhere suitable for your mum. It's looking like my dads care costs might be escalating too, I finally managed to view a local home to me today, which was on the SW's recommended list for EMI Dementia care. It was lovely, brand new and just like a hotel and they only have 5 residents at present and they are only introducing new people very gradually so each one can settle in and they can get to know their individual needs. Sounds perfect doesn't it, but unfortunately this does come at a cost, more than double what we are paying now. I've asked for them to do an assessment anyway and I've spoken to the SW about the home and the financial cost and she is going to go away and see if the LA would be prepared to take over the costs once dads funds run out. Another alternative recommended to me was to get a NHS continuing care assessment done and see if we could get funded that way. But I am aware that isn't easy to get.
     
  13. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,319
    Just caught up with your posts. Good luck with everything.
     
  14. Beate

    Beate Registered User

    May 21, 2014
    11,622
    Female
    London
    That was me. :) It's really very good, isn't it?

    I'm so sorry to read you're still having to deal with so much stress. I hope you'll soon be out of the woods. I know you probably don't think so but you're doing tremendously well being so proactive and not afraid to ask for help. Your Dad would be proud of you.

    All the best.
     
  15. Nessie21

    Nessie21 Registered User

    Sep 23, 2010
    10
    SUFFOLK
    Hi Ellie, In the end i think it is peace of mind over them being safe and cared for and for them being as content as they can be and the cost of achieving that is sadly ridiculously expensive. We spent over £135000 in care home fees in 3 yrs! No we couldn't afford it and we borrowed money off relatives and blagged our way through the CH paying what we could when we could until we ended up selling my mum's flat. If your Dad is in an EMI home SS won't allow him to be removed if it is right for him so even if you run out of funds they will help you sort. Ask for a CC assessment now it takes ages and they will probably try and turn you down but you have to be prepared to fight we got a lot of it back in the end and backdated but only after using a good solicitor and 3 yrs after she died! My Aunt has the same type of dementia as my mum had and so we have now gone through the same horrible experience twice but experience and knowledge is a wonderful thing and the whole process was so much easier second time round, we knew what to say, when to fight and hold our ground and also put her in the right type of CH from the start. Amazingly she was in a different NHS HA and they granted her CC at the first attempt but be warned she is fully funded so they pay a maximum of £640ish a week and my Aunts CH an EMI home 4-1 care in Suffolk now costs nearly £6000 a month so we are still short and having to fund nearly £3000 a month!
     
  16. Elle3

    Elle3 Registered User

    Jun 30, 2016
    603
    #96 Elle3, May 2, 2018
    Last edited: May 2, 2018
    Thank you Beate, the book is excellent and helping me a great deal, I've already recommended it to the Social Worker and the current Care Home Manager. If only everyone took the time to look at every individual as a whole person, not just how they are behaving at the time.

    Things may be moving in a positive direction. I have another Care Home doing an assessment today to see if they will take him and it might be quite promising. The down side is the cost, which will be more than double. The home have suggested applying for the NHS CC as all their other residents in the unit have it. I've had a long chat with the SW and the current CH Manager and both think that dad may be eligible, so definitely worth trying as they both said they've seen people with less issues than my dad get it. So if we could get that it would be a great weight off my mind.
     
  17. Elle3

    Elle3 Registered User

    Jun 30, 2016
    603
    Yes you are right Nessie21, money doesn't really matter, as long as they get the care they need and I'm sorry to say experience really does help, although how sad for you that you've had to deal with it twice.

    I have been advised to apply for the NHS CC and I've discussed it with the SW and dad's current CH Manager and both think he might be eligible. The SW said dad needs to be settled in a new home first though before applying. We will be looking at around £6k per month too due to the nature of care required, which is almost double what we thought we would be paying, so dad's money will be running out rather quickly, so the SW has said she will have to confirm if the LA could fund him there once they run out.

    Nothing is easy.

    Thanks for the advice and take care.
    Elle x
     
  18. Elle3

    Elle3 Registered User

    Jun 30, 2016
    603
    I have good news to report, I found a Dementia + care home close to my home and they did their assessment today and they have agreed to take dad and I will be moving him there next Wednesday 9th May.

    I've also had a ‘best interests’ meeting with the Social worker going through all the possible care options for dad, looking at the pro's and con's of each of them. She explained it mainly as a form filling/reporting exercise just to show that we have considered all the options and dads best option is to move to this new care home.

    She also went through all the Financial implications with me too (I think I'm almost becoming an expert, she even asked me if I fancied re-training as a Social worker, lol). This new care home is almost double the cost of his current care home, due to it being Dementia + and the ratio of staff is 2 to 1. There are currently just five residents in this unit, all receiving CHC funding, so the staff were quite surprised when I told them dad would be self funding. As it is a new unit they also didn't know how much private funding would be, but I have to yet again praise our SW, she has got them to agree to only charge my dad the LA funded rate. However, both the SW and this new care home are talking about getting dad the CHC funding. I've been told they will get dad assessed in 4 weeks and they are going to send me the criteria for the funding and I should start writing notes now as they would like my input for the assessment. I'm not holding my breath that he will get it, judging by comments I read on here, but both seem quite positive that he should be eligible, I've also got an NHS CHC 'insider' friend offering her assistance. I do wonder if different areas of the country have different views regarding awarding this. I suppose I will find out in a few weeks time.

    I also visited dad today, the first time in over a week, due to me not feeling well. It was actually quite an awkward visit.

    He looked really pleased when he saw me, however, once we found somewhere to sit, he started to tell me he loved me over and over again and kept asking that I didn’t leave him. He then kept calling me his wife and telling me how gorgeous I was and he told me he wanted to love me, he wanted to take me to bed and jump all over me. Yep very awkward!

    After about half a hour of this and trying to tell him I loved him too but I was his daughter. I told him I needed to go to the toilet, I really needed a break. It was also quite hard not to laugh about it too as I’ve never seen my dad quite like that before. The carers I told did say this can be quite common.

    When I returned the loop didn’t stop and he continued to tell me he loved me and he continued to proposition me, he even told me he wanted to take me to bed, but he didn’t want a baby. Is this an insight on his relationship with my mum in the early days?

    I stayed for a hour and I told him I had to leave to do some shopping and I would come back later. I told the carers to keep an eye on him, just in case he got upset after I had left.
     
  19. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    Good news, hopefully all will change for the better now.
     
  20. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,319
    Good news on the home front. Let’s hope your next visit is a bit more comfortable.
     

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