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A life in the day of.........................

Discussion in 'I have a partner with dementia' started by Grannie G, Jun 4, 2007.

  1. cris

    cris Registered User

    Aug 23, 2006
    If respite help came, could they not sit and chat to you ? Dhiren can go and garden if he wants. I find a sensible conversation is good sometimes, (sometimes - what am I saying, all the time would be good). With you and your friend having tea / coffee and chat Dhiren may join in and not see it for what it is. I guess it would have to be a lady friend or it will be seen as a threat.
    Keep talking to respite help they are trained and should be able to offer a solution.
    thinking of you
  2. blue sea

    blue sea Registered User

    Aug 24, 2005
    So sorry, Sylvia, that the visit didn't go as you had hoped. You have needs as a carer too and have a right to have those assessed by SS. Has this been done? Would that be a way forward? If you could be referred to a CPN, on the basis of your needs as a carer for someone with AZ, perhaps he could work with you over a period of time to get to know your husband? CPNs usually have a huge area of expetise in working with families affected by dementia and may be able to suggest strategies that will help you. Sorry if this is a useless suggestion! It must be really hard for you at the moment.
    Thinking of you,
    Blue sea
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    cris and blue sea, Thank you both for two very good suggestions.

    For the moment, I don`t think I could face further conflict, but these are areas
    worth investigating.

    Why didn`t the SW make those suggestions? Why did they have to come from fellow carers?
  4. Lucille

    Lucille Registered User

    Sep 10, 2005
    Dear Sylvia

    So sorry today didn't go well. You, of all people, deserve a break.

    I know that at the moment that last thing you feel like doing is pursuing anything else, but stick with it.

    I've just had a call from mum's OT. She met with mum and a support worker and it went very well. Tomorrow (fingers crossed) the support worker will take mum out for an hour or so for a 'coffee' (aka Day Care).

    This small triumph has taken about 18 months. From mum absolutely refusing anyone into the house to give her tablets (never mind the fact she was overdosing) to today's 'development'. Meantime, I and others have had to watch her being sucked into the vortex.

    It's a long hard road, Sylvia. Keep your chin up, we're thinking about you. (Sorry to hijack the thread slightly, but I did think mine/mum's case was relevant to yours).

  5. Westie

    Westie Registered User


    So sorry to hear your meeting didn't go well.

    I think Cris has a very good point about someone coming in to sit and chat to you. It's amazing how therapeutic a 'proper' conversation is.

    By the way, our CPN has told me on many occasions that she is there to support me just as much as Peter. I think it would be very helpful for you to have one on your side.

    I don't rate our SW at all and have only actually seen her once but the CPN is brilliant - a godsend. If you could also have a really helpful CPN you probably wouldn't need to deal with the SW again.

    I hope the day improves for you and you have a chance to think about the way forward.

  6. Tina

    Tina Registered User

    May 19, 2006

    I don't have any experience of your situation or dealing with SW's or CPN's. Just wanted to say hope you can find some support for yourself somewhere as well as for Dhiren when you need it most.

    Thinking of you.

  7. Carolann

    Carolann Registered User

    Apr 19, 2006
    Hi Sylvia,
    My Mum died last October after being diagnosed with AZ for 3 years - a relatively short time compared with many other people on this site - she starved herself to death really.

    You are a wonderful carer and give so much sensible advice to other carers on this site, even though you sometimes are going through the most difficult of times.

    To be quite honest I could not wait to log on today to see how you got on with the SW and I am dissappointed for you that nothing really constructive came out of the meeting - but I am not really surprised after the dealings I had with SS.

    Thinking of you and Dhiren.
    Take Care,
  8. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Sylvia - I am so sorry the SW did not prove too helpful (why am I not surprised at that?!). However I would seriously take up the offer of male CPN - for your sake. We have one who has taken us a little under his wing and David does respond well to him. It could be that eventually Dhiren would see the guy as a 'friend' and might then ultimately agree to day centre for a trial (I am sure a good CPN would work along with you on that one).

    Can you start with a telephone chat with the CPN and he would probably note all the facts as you see them (some copies of some of your posts might help him).

    Take care - thinking about you (as I am not watching THE programme this evening - how can I when D is sitting with me. However the children are each recording it as none of us want to face it now).

    Best wishes Jan:) :)
  9. Whiskas

    Whiskas Registered User

    Oct 17, 2006
    So sorry things didn't go well Sylvia but don't give up. The advice about contacting CPN seems a good start.
    Our local branch of AS have been a lifeline for me, giving me support so I can carry on caring for Mum. My Carer Support worker will come and see me if I'm down or even just a chat on the phone can make a difference. Mum wouldn't accept any help at first but she does now. I know that doesn't help you at this moment but there must be a way round this difficult situation that you are in.
    I hope you can get some help soon.
  10. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Dear Sylvia, How are you today? Love Deborah xx
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I`m fine thank you Deborah.

    All the disruption of yesterday has been forgotten, and I`m going to bide my time until it`s really necessary to get someone in. It`s just not worth the upset.

    Today we are having a new `old fashioned` gas fire fitted, so there will be no more throwing bits of paper and stuff on the living flame gas fire, confusing it with a real coal fire.

    Tomorrow is another day.................?

    Love xx
  12. jude1950

    jude1950 Registered User

    Mar 23, 2006
    Hi Sylvia.
    Sorry the visit from social services did not go so well. I had a couple of similar visits in the past with James he was just the same as Dirhan really annoyed that someone had called to see him or me and discuss his private business!.
    I was a little surprised that the social worker didn't offer you any help at all . Although Jim was adamant that he didn't want anyone interfering the case was still opened and at that time we were offered two days respite care and we had to turn it down as Jim wasn't having any of it, but the offer remained in place until some such time we needed it and it has been set up straight away without any further assessment visit or report from Social Services as we were already in the System, the knowledge that we were already on file so to speak was reassuring.
    I am pleased things are more settled today.


  13. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    A Ray of hope

    If it helps, here's something to consider: When I went to get Jean up for a wash before tea, she was already awake and upset, which in turn left me feeling guilty.
    As though talking to a child: "You want a cuddle, don't you?" As I slid my arm around her can you imagine how I felt when I heard? "Yea..." her first word in almost two years! I could fly! What a wonderful gift. Who says they're just a shell?

    Sylvia, hang in there you'll find light in the tunnel just as I have.
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Judith,

    Your post illustrates how area and LAs differ. It`s reassuring to hear Dhiren is not the only one fighting for survival. Thank you for posting.

    Dear Padraig,

    You might have had to wait two years, but it was worth waiting for. Thank you for your support.

    Love xx
  15. cris

    cris Registered User

    Aug 23, 2006
    Sylvia, I'm pleased that you seem to be a little better today. :)

    Padraig, You made me smile, I can imagine how you feel. :)

    take care
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    I am wondering did social worker say that Dhiren had to agree , for the CPN .

    meaning is CPN for Dhiren not for you .

    I Only say this because my SW said that if I Needed a CPN I would have to get one for myself . My mother would have to agree to have one for herself .

    well back then, they was no way my mother would of spoken to a CPN , So we never got one .

    I Only talk to a CPN now because my brother has one , his great.
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Margarita,

    The SW didn`t really specify who the CPN was for, although she did suggest a male CPN for Dhiren.

    I feel I`ve had enough for the while. I don`t feel the need is urgent.

    I`ve just received an invitation from the Carer`s Group, to have lunch out. I don`t want to seem ungrateful, but if I were to go out for lunch, I would prefer to go with Dhiren, while we can still go together. There will be plenty of time to have lunch with others when his condition deteriorates.

    Changing the subject....................

    Yesterday our new gas fire was fitted. Guess what? I find it impossible to use the automatic ignition. I can`t hear the `clicks`. To light the pilot light manually, we need either tapers or extra long matches.

    Dhiren went for the papers and was longer than usual. No need to worry. He came home with a box of extra long matches. Problem solved, pilot light lit. :)

    How did he remember???:confused:
  18. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland

    That's brilliant, Sylvia. He's still thinking of you (sometimes:eek: ). Another memory to hold on to.

  19. Cliff

    Cliff Registered User

    Jun 29, 2007
    North Wales
    Dear Sylvia,

    Have been reading this thread and I am full of admiration for you and the many other contributors.

    The loving care you all show and the little touches of humour are overwhelming.

    And you make such worthwhile contributions and give advice for other people's problems.

    Wish I could reach out and hug you all.

    Love - Cliff
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Cliff,

    It takes one to know one. :)

    Love xx
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