What's the next step?

Discussion in 'ARCHIVE FORUM: Support discussions' started by widget, Jan 3, 2006.

  1. widget

    widget Registered User

    Jul 18, 2005
    44
    Lincs
    Hi again everyone, Happy New Year.

    My Aunt and Uncle came to spend Christmas with us and the week started really well. My Aunt seemed to understand most that was going on around her although she didn't realise it was Christmas! Well she got steadily worse as the week went on, eventually asking 'Where's J gone?' every 30 seconds when he went out to the shop. I even wrote it on a piece of paper for her, but she forgot to look at the paper...

    They went back home on the 30th and since then i've had numerous tearful phone calls from my uncle saying she 's packed her bags and wants to come back to our house and she's constantly asking him when she can come back. She even rings me when he's in his greenhouse asking when they can come...

    We live 100 miles away and we're worried that she's going to start walking...

    Well my uncle rang this morning in a state and asked if i could try and get the consultant out to see her as he breaks down every time he picks the phone up. I rang him and his secretary said he 'might' be able to visit, but to also ring the Community Psychiatric Nurses. I rang them and the lovely lady said she will visit them in the next couple of days.

    I'm so relieved that the ball now seems to be rolling, but on the other hand am very worried about her. Even as i was talking to my uncle she'd locked herself in the toilet and couldn't get out.

    Can any of you give me some idea of what happens next or what we should be doing? I've never had contact with CPNs before.
     
  2. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    CPNs

    I don't know if this happens everywhere, but in our part of the world the CPN is the person who is the first port of call, and seems to have overall management of the case. My husband is visited by the CPN regularly, and when we see the consultant she often says that we should speak to the CPN about various things like Carer's Allowances, home care when I am away, and so on.
     
  3. widget

    widget Registered User

    Jul 18, 2005
    44
    Lincs
    Today's the big day

    Hi everyone
    Thanks to Nada and Rosalind for the replies. My Aunt and Uncle are being visited by a CPN this morning so i'm waiting by the phone to find out what was said. I'm quite concerned for my Uncle as the carer he seems to be crying a lot and sometimes my aunt has the clarity to struggle to phone me and say that she thinks there's something wrong with him!

    We're still getting phone calls from her asking if she can come back to our house. I've been surprised by this as i thought with AD the sufferers craved the familiarity of their own home. I did notice while she was staying with us that wherever we went , i.e. to the shops and to a party that as soon as she arrived she wanted to leave. I know now that'll it'll be easier from now on not to drag her to such places, i just thought she might enjoy a change of scenery and she used to enjoy going shopping with me. Ho hum it looks like that's the last time we'll be at the shops together ....
     
  4. widget

    widget Registered User

    Jul 18, 2005
    44
    Lincs
    A little ray of sunshine

    HI everyone

    Two CPNs visited my Aunt and Uncle on Friday. My Aunt couldn't answer any of the questions asked of her, constantly trying to use my Uncle as her brain. The one CPN took her outside so she could 'see the garden' while the other chatted to my Uncle who broke down completely to her.

    Well, the little ray of sunshine is that they have arranged for her to go for a scan on the 19th so I am SO RELIEVED that the ball is finally rolling.

    Unfortunately she is now stating that she is NOT going to the hosapital, NO WAY. So, my Uncle has told her that he is going for the same test, just to get her there. My Brother and Sister in Law will be taking them and being on hand for moral support but i can't help feeling guilty that i won't be there for her. I have a 6 and a 4 year old, run my own business and i live 100 miles away so it isn't easy.

    I think i feel so guilty because I used to be so close to her. I lived with her from age 8 to 23, and stayed with them for weekends when i was even younger! As a child i used to tell her that if she ever died I wanted to die too!

    When i phone her it's like i'm talking to a completely different person. Everything i ask her gets relayed to my Uncle who gets ratty that she should be talking to me, not him. I have accepted that it's the illness and its not her fault and i'm also really worried about my Uncle. He's a very fit and active man (at 69 he goes out mountain biking with my hubby!) who can never sit still and still works, albeit part time. He now has to contend with the housework and meals and my Aunt following him around and using him as her brain. He seems very depressed at the moment and i only ever hear of them eating cheese on toast, or a sandwich and my aunt i think survives mainly on a couple of biscuits and cakes and cornettos. Neither of them have been big eaters but i wonder if my aunt's diet could be making her condition worse. While they were here over Christmas i made a cooked dinner every single day to try and get them adequately nourished before going home again and they practically licked the plates!

    One thing i started noticing about 2 years ago is that most of the food in their cupboards was out of date. When i visited i would point out to my uncle that some of it was weeks, months and even years out of date. He would get a bit shirty about it (now i know he was covering up for my Aunt) and every time i visited he would point out that everything was 'in date'. I now worry that between my visits they could be prone to eating food well past its sell by date. I remember once going to make a sandwich, took the ham out of the fridge to find it had grown fur!! yuck!

    Am i being too anxious about these things? Do a lot of people of that generation not bother so much about how olf their food is? I know my uncle has harped on about 'when rationing was around you couldn't be choosy' in the past. Sorry if i offend anyone with that statement, i don't mean to. I am just going round and round in circles worrying about the pair of them and losing a lot of sleep over it.

    Sorry for rambling on so much, this forum is wonderful for getting things of your chest isn't it?!
     

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