1. Morny

    Morny Registered User

    Oct 11, 2007
    15
    Gloucestershire
    Today I've had a visit from Bob's social worker and CPN. He has been diagnosed for 3 years but in reality I can pinpoint approx 10. I am having 2 weeks holiday at the beginning of Nov, and was hoping he was going to have residential care as he did last year. I am told there is a change to the legilation in the mental health act and he has the decision as to whether he is cared for at home or in a care home. Of course he is not aware of how little he is able to think for himself and naturally does not want to go away. The care package will take the form of several visits a day to check on him. Day time is not too much of a problem and I am able to work full time. His most vulnerable time is after bed time when the darkness seems to highten his confusion. I am quite distraught by this as I thought I could contentedly enjoy my holiday in the knowledge that he was secure and well cared for. I now feel this is being ignore because Bob doesn't want to do it. Has anyone had this situation and did it work out ok
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Morny, I've never heard of that! As far as I'm aware, respite care means residential care. Perhaps this is a local system?

    It doesn't seem very satisfactory for Bob to be left on his own all night. I think in your shoes I'd be prepared to fight that, particularly as you have already had residential respite.

    Perhaps someone else will know more.

    Welcome to TP (again),

    Love,
     
  3. Morny

    Morny Registered User

    Oct 11, 2007
    15
    Gloucestershire
    Skye

    Am going to speak to my carer's support lady next week. SW & CPN were going away to discuss case, so I can only hope they see my point. They said read details on internet so presume it's not local. It's 2 1/2 weks to hol, thought today was just to advise Bob of what's happening, cos I wasn't going to tell him until last minute - last year had big fight to get him there. Of course I realise it's not something he will do willingly. But he doesn't tell them the truth about his activities, maybe he thinks he does the things like get b/fast, he doesn't eat it never has. Socialise he doesn't have any friends, they don't know him and the reasons behind what he says.
    Thanks for your reply
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I do hope they do see your point, Morny. How on earth can you be expected to relax, knowing your husband is left alone at night. It sounds crazy to me.

    Love,
     
  5. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Morny,
    Sorry to read of your situation. I do hope that your able to get residential respite for Bob, at least that way you can enjoy your break away. With all the changes that are been made these days wouldn't it be great, if a little common sense was included. Fingers crossed everything will work out to your likening. Regards Taffy.
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Now wouldn't that be great!!!!!
     
  7. Morny

    Morny Registered User

    Oct 11, 2007
    15
    Gloucestershire
    Thanks for your kind wishes. trawled thru mental health act 2007 - tough going, they mention capacity which cpn did also, and said he didn't pass that test!!
    What is confusing to me couple of months ago previous SW said she had 2 week placement for him beginning of Sept (that was too early for hol). She never mentioned anything about getting Bob's agreement to go. i knew he would say no, who wouldn't. He's been diagnosed with dementia how can they believe he knows best. These are early days for me dealing with SS and until now it all went well. Maybe they will listen and come back with the decision i am hoping for. I'm ready to do battle now.
    What's more they said if I eventually say I've had enough of caring what about f/t residential care, they will again ask him and if a team can care for him at home, and I don't agree or like it I have the option to move out. My chest hasn't stopped fluttering since yesterday with so many emotions stress etc. I'd love to walk away but why should I. I don't have demntia yet!!
    M:confused:
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Morny, just thought of something I should have thought of before.

    Have you had a carer's assessment? If not, get on the phone and demand one pdq. Every carer is entitled to one, but SS somehow 'forget' to tell you that.

    Ask for an urgent assessment, you're on the verge of a breakdown, and you need help immediately. Respite is usually granted because of the carer's needs, but it sounds as if they are only going on Bob's assesment.

    Sorry if you've already done this, ignore me, but if not, go for it, and lay it on thick!
     
  9. Morny

    Morny Registered User

    Oct 11, 2007
    15
    Gloucestershire
    yeah thanks Hazel, I have had 2. the first 1 v naiive so got written off as too capable, found that out at dr's surgery. Called'em back in when Bob was a due a cataract op in June and said I couldn't manage after care with my work shift pattern. At this point just over phone girl didn't seem too aware of my plea, so went to his specialist dr's secetary, they arranged 10 day stay in old folks hospital - great. Then really nice lady called Lucy came out, for both of us. Arranged a treat fo me ie 90ft x2 leylandii hedge cut and clearance. Also started on case for Bob's respite in Nov, that's when she got to 2 wks placement in Sept with no mention of this recent "stuff". Arranged day care (which he escaped from and came home on his own) we were lucky there he didn't get lost. Lucy then went on to another job and we now have Lydia and first visit no mention of his decision in all of this then she came back with Jade cpn, and as they say the rest is hitory - traumatic history at that
    M
     
  10. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    H Morny

    Isnt it such a shame that SS and CPN's spend their valuable time trawling through the internet looking for reasons 'not' to help with care. Makes my blood boil.

    I would certainly ask THEM to produce a copy of this section of the Act, so that you can 'seek advice'. Get in touch with your local AD branch, Age Concern and Mind, I would also let them know you are ready to do battle.

    It makes me sooooo cross, they dont get it do they, whilst people like us struggle on to care for our loved ones, we are saving them thousands. And dont they realise that by helping you have some respite, you will no doubt battle on as a carer longer. Grrrrrrr

    Sorry to rant, but I do feel for you, you need and deserve a break.

    Keep in touch

    Love
    Cate xxxx
     
  11. Morny

    Morny Registered User

    Oct 11, 2007
    15
    Gloucestershire
    Hi Cate
    It's comforting to know my not so nice feelings right now are understood. The ironical part of all this is in March this year I wanted a weekend away and felt 3 nights too many to leave Bob unattended. I asked for in the home supervision to just to keep an eye on him and was told they wanted to put him in a home for that period. I declined because the disorientation after would have outweighed the advantage. They were not happy that I said no. Now they are doing it again but to me in reverse. I must be dense - surely can't understand their rules. Guess it's down to personal interpretation and operation
    M x
     
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    my first reaction when I saw that was great , I want to know where it says that to show my social worker as mum would love to stay home , rather then go into a care home for respite .

    My social worker come up with the excuse of respite is meant to be for all the family, meaning if mum stayed at home my daughter's would not get a rest from her , but mum no bother to them as long as someone sitting with her .

    but look at your case your living alone with your husband I presume and they not letting you do it .

    it all down to funding the night night care , would cost to much seeing that it cost around 500 or so pounds in care home a week for SS to pay if your not self funded , could they not give us that money and we find someone to live in for the week for that money .

    My mother ask me to ask my friend to say the week and she pay her say 100 pounds , but its a big commitment and my friend said she let me know , I know she going to say No , mum book in anyway for care home respite , but it would be nice if they could have that choice to stay at home .

    I have read of TP that Norman our moderator on TP organized it for his wife , that peg his wife stayed at home while he went on respite , maybe he pop on let you know how he done it or you could PM him
     
  13. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    For the three times that my husband went away for respite his permission was never sought i just took him in and everything was fine. that was last summer.

    Cynthia x x
     
  14. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Hi Morny.
    It seems you have come up against the new mental capacity act that came into being on the first of October....as usual when these new acts are implemented no one is exactly sure how to interpret the act!! as I see it in purely laymans terms if a person has capacity they have the right to make their own choices about care
    The problem with dementia patients is that they will need to have capacity assessed before decisions can be taken on their behalf and we all know how well they present themselves whenever these assessments are done!!
    The act was not designed to stop people going into respite but thats what will happen . I would enlist the help of The Alzheimer's association and see if they can clarify your situation. If at all possible try to get your Husband to agree to the respite in the Nursing Home. I am sorry you are having these problems ..it will no doubt be happening to a lot more carers in the same situation.

    judith
     
  15. Morny

    Morny Registered User

    Oct 11, 2007
    15
    Gloucestershire
    Last Nov no problem
    It isn't done and dusted yet, they MAY decide he can go in somewhere.
    At home there will be no night supervision, which is, for me, the potential problem. That's when he gets into the wrong bed forgets where his room is. We have a 3 bed semi, so not far between rooms!! He urinates on the bedroom floor, albeit not every night.

    Day time he is used to being alone and prefers it. I work full time.

    My other concern is he can read but the text doesn't go past the eyes so really he has no idea what he's read. So if I were to leave him a note saying when I would return, it's ever likely he would throw it away, but would not take in what it said. So if I never come home in the 2 week span, would he notice, and would this make him go out and look for me. Hypothetical I know but possible.

    I said to cpn I don't care do what you like but if it goes badly wrong be it on your head, she said we don't take responsibility.

    The next few days and weeks sure are going to be busy to get something satisfactory sorted
    Mx
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #16 Margarita, Oct 13, 2007
    Last edited: Oct 13, 2007
    My social worker always telling me its up to mum , her decision if she wants to go to respite or not I have to tell her she has a right . so its left to me to convince mum to go for my sake , other wise mum not going . now she realizing that she can not stay at home without someone staying to look after her full time at home . she ask all my daughter if they can stay looking after her , then get angry when they say they can't . she tell them in Spanish thank- god because they don't understand to get out of her house if they don't want to look after her , while looking at me and saying she only joking . she go in the end .


    if you don't mind me say , he would notice he would go out looking for you , I know you won't really do that . your only saying it , but don't go down that road in thinking that he won't
     

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