Continuing NHS Care assessment & general whinge

Discussion in 'ARCHIVE FORUM: Support discussions' started by janey, Apr 19, 2005.

  1. janey

    janey Registered User

    Jun 29, 2004
    86
    Dear All
    Mum (with vascular dementia) had a bad fall last September, spent 10/52 in hospital, and has been in a nursing home since - Dad is heart-broken and has spent every single day since the fall by her side. Not surprisingly his own health has suffered badly (he's nearly 80). Despite the fact Mum's in a supposedly great home (which costs a fortune), the place is all show and no real caring for the frail residents who can't join in the drinks parties and socials, and who simply need good and compassionate care like Mum. Sorry, note of bitterness creeping in... There are no other homes that could take her within driving distance of Dad's house. I am trying to do 2 things - first, find out if it is possible to get Mum home. The social worker and the hospital said Dad is not up to looking after Mum, which is true if he is on his own, but the sw could not find enough carers to help him either, so Mum ended up in this home. The sw will invoke section ? of the mental health act if he tries to take her home without appropriate care (which would probably need to be 24/7). He will have to pay for private care and have the house adapted to stand any chance of getting her home, so I'm looking into the possibilities. The second thing is that Mum was assessed for NHS Continuing Care and was refused, although she does get the highest level of nursing care allowance (which is a drop in the ocean compared to the nursing home fees). I've downloaded the Alz soc guide to how to challenge this decision, but I'd love to hear from anyone who has already tried to do this, or is in the process.
    Best wishes
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Janey, I haven't actually legally challenged this sort of situation, but I did fight to get my own Mum out of hospital and home for her last few weeks. I was not concerned with the cost, Mum had the money from her flat, it was hers and I was determined she have the benefit of it. Once they saw I was deadly serious, because as they had told us she was terminal, they then gave us full nursing care fees for 6 weeks to be open to continual review. Sadly, Mum passed away before the first review needed to happen. But the reason I wanted to answer was, I don't know whether you are aware or not, but you can apply directly to an agency for help without going through SS if you have the money to pay for it. This means continually, not just for a few weeks. I thought you needed to know this as you say you are paying a fortune out on the home anyway. Speak to at least a couple of agencies if you can for comparison. Get the agency(s) to go and see your Mum, do their own assessment. If they were then willing to back you in providing 24/7 care (and you got all the equipment they requested.) Ask them to tell you in writing the costs involved before even considering it, although as you say the home is already costing a fortune. I assume this is being funded by your family, as if SS are funding it then you wont get much joy I think as they will not provide in home funding that a care/nursing home would provide more cheaply for them. Once you had some concrete figures to go on, you could put the idea to SS/OT/ discharge team and see what they say. If they still disagreed then I don't know what you would do next. If they were determined to prevent it, then I really don't know how you would deal with it. We were lucky, but I don't know if it applies all the time or just because I was so determined my Mum would die at home as she wanted and they knew it would not be for that long. You also need to be aware of the physical and emotional strain this decision, should you go ahead, will put you all under. It is not a decision to be entered into without really understanding what it will entail and how this will affect you all. Don't know if any of this helps, thinking of you, love She. XX
     
  3. janey

    janey Registered User

    Jun 29, 2004
    86
    Thanks for this She - and yes, it does help a lot. I think you're right in saying that private agencies are the only way forward, since Dad is paying the NH fees himself. I've agonised about what it would mean to bring Mum home - at the moment (until mid-September) I'm doing a course for which I got funding, which would have to be paid back if I didn't finish (which I can't afford to do). I feel torn into bits between Mum & Dad, my husband and home, and the course. I'm trying to give them all the time and emotional energy they need, but there isn't enough to go round. To be honest about it, I feel extremely guilty that I'm not looking after Mum myself (as I know Dad would have liked) even though I know everything else in my life would go to pot if I did try to do that. And with the best will in the world I can't be there 24/7 anyway. I am also worried that Dad doesn't see the full implications of bringing Mum back home. I'm not sure he'd feel able to trust the carers at home any more than the ones in the nursing home. His heart is ruling his head these days (very strange to see, as he used to be the most logical man in the world!). I just want the last few months/years (?) to be as happy for them both as they can be, but really I don't think he'll ever come to terms with what's happened to Mum whatever we do now, and wherever they both live. Meanwhile he's not eating properly and is getting more and more exhausted. I can see he won't give himself a break until something awful happens to force him to (or worse). I seem to be the only person in the world who he'd trust to look after them, but it would put my own future and marriage at risk, something he just doesn't understand (maybe because he remembers how his sister looked after their parents years ago).
    This has moved a long way away from the tsubject of Continuing Care and it sounds very mixed up - which is exactly how I feel. I'm supposed to be writing an assignment just now (the deadline is looming) but I can't do it because my head is full of all this in the hope of finding an answer. I suppose there probably isn't one, but I just needed to get all this out so thanks for reading it - as you all know, there's no point in talking to friends who haven't 'been there' themselves - their eyes just glaze over and they stop phoning you because you've turned into a boring old **** who drones on about the same old thing. Well what *do* you say when they ask how you are??
     
  4. Leah

    Leah Registered User

    Oct 22, 2004
    31
    Northumberland
    Dear Jane
    So sorry to read how you are being torn in so many directions just now. It is never easy but you and your Dad are in a very difficult no win situation at the moment. You must try to make sure Dad has everything in place before he even tries to bring your Mum home. If he needs equipment etc. it can take ages.
    Thinking about you.
    Try to take care of yourself.
     
  5. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    333
    Hi Jane,
    I can't offer any advice about your Mum ..... but have you tried contacting your tutor to ask for an extension on your course assignment? It would take the pressure off you a bit?
    I obviously don't know who you're studying with, so perhaps they dont allow this?
    I'm studying with the Open University and in all the time I've studied with them, all the tutors have been very helpful and have allowed extra time if problems have come up.
    Take care,
    Elaine
     
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Janey, yes I understand what you say about wondering if your Dad would feel he could trust these home carers any more than he could the ones at the home now. Well, all I can tell you about is my own experience obviously. We had a few "duff" ones, but the majority were lovely girls who worked with us as a family to make Mum as comfortable as possible. There was only one that I actually refused to have again. Also, if you are willing to be "hands on" with them and work as a team, this seems to have a knock on effect on getting things done your way. Having said that, as you say, you are part way through a course which you may not be able to extend. There are so many ifs, ands, & buts in a situation such as this. Your husband needs to be given the chance to tell you how he feels too. I know you are driven by love for your parents, but you must also remember that they would not want you to sacrifice your own life for theirs. I can't tell you what to do, I can only try to get you to look at the whole situation and do what you feel is right for you and your family. What ever you decide Janey, TP is always here for you, to let off steam, to laugh, cry or just have a good old moan, I know I have!! Keep posting, love She. XX
     
  7. janey

    janey Registered User

    Jun 29, 2004
    86
    Dear Leah, Elaine, She
    Thanks for the good advice - you've given me food for thought. I can't extend the course although I might be able to move essay deadlines, but I'm trying to look at it the opposite way and get it finished as fast as possible so I can then give the time to Mum & Dad. This may be stupid and is probably adding to the stress, but I thought the faster I finish it, the sooner I can help them. My husband thinks its a non-starter to bring Mum home at this stage, and like me he's worried that Dad isn't able to see past his longing to have her home to what it would actually mean in practice. Before Mum fell my husband and me were trying to get him to have help at home, but he insisted that he couldn't have strangers in his house. But now he says that he'd do whatever it takes to bring her home. He also believes he could do a lot more of the care than he really could - he's forgotten how exhausted, stressed and depressed he got before Mum had her fall. He's got a bad hip (he backed out of a hip-replacement operation 2 years ago at the last minute, because he didn't want to leave Mum) and can barely stand himself some days, never mind help Mum. In a way I'm more worried about him than about Mum now. I don't know what I will do, but it has really helped being able to say it all here and have feedback from you all.
     

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