Goot times, bad times and Social workers

Discussion in 'ARCHIVE FORUM: Support discussions' started by Mameeskye, Jan 7, 2008.

  1. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    #1 Mameeskye, Jan 7, 2008
    Last edited: Jan 7, 2008
    Good times, bad times and Social workers

    Well the last few weeks have been a bit of a roller coaster. My husband, one of my twin sons and I have all had a flu bug..my other son spent his time improving his wii scores and is now a pro at bowling and at 6 beats me at nearly everything!!

    Because of the flu I had to put off visits to Mum for about 9 days so when I finally went last week I was very surprised but delighted when she showed signs of recognising me (eventhough she called me Mum) as for the previous month or so she had a blank face when I went in.

    Yesterday she mentioned my dog's name in a mumble and smiled at me as I went in.

    I really hadn't expected that. It was lovely.

    On the downside in the last fortnight she has become increasingly frail and is spending most days in bed. The staff try to get her up if she is bright enough in the morning but by lunchtime she is having to go back to bed.

    While I sat with her yesterday she was having such mumbled conversation with invisible people. I said to the Home Deputy that if I believed I would almost think that she was having a chat with Angels. She was not really distressed, just chatting with the beings and occasionally pointing them out to me.

    I took the decorations off her little fibre optic tree but left it up as the light is nice for her. Some small stimulation when there is so little left.

    She is failing badly at the moment. She just seems so tired. She has not recovered her mobility, is listing badly when sitting and is occasionally sick. In anyone else the home staff were saying that they would be saying that this was the end coming but because of my Mother's history of near miraculous recoveries they just don't know.

    I think that she is failing this time as she is now saying she is tired. She has lost so much motor and cognitive function in the last few months. No longer are conversations possible, no longer do you often get a direct answer to a yes/no question. But she seems to be in little pain, although strangely she now gets agitated and seems to know something is wrong in the late afternoon (her old sundowning time!)

    I feel that the end is coming and while I love my Mum with all my heart I don't want her to be like this any longer and feel that her time is coming and she is giving in finally to this disease.

    And the oddest point this week was being advised that Social Work are actually coming on Wednesday to carry out a Social Care review for the first time that I am aware of in 3.5 years! The cynical part of me says that they just want to assure themselves that she is not going to strain their budget by lapsing out of self funding before she goes! I have promised not to be sarcastic!

    Don't know why I posted really other than to say this to people who would understand the strain that comes while at this stage, waiting all the time for the telephone to ring yet knowing it could go on for weeks or months even if she plateaus again.
     
  2. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear MameeskyeI understand completely where you are coming from.
    On Friday Peter's Cunsultant wanted me to be there when he visited Peter.
    Consultant asking Peter who is Christine - vacant face, where is Cgristine - still vacant and I was sitting next to him. Then Peter fell asleep. All that they can tell me it must be a daily waiting game. Consultant will come in to see Peter at anytime.
    Social Worker had closed Peter's case when he was admitted to R.M.I Unit.
    Just little bit of recognition would be really lovely and on each visit, that is what I hope I will receive.
    I hate this horrible disease.
    Best wishes. Christine
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Mameeskye, thank you for your post.

    I do know the feelings, though as John's decline was so sudden I have no way of knowing how near the end is. Another infection could bring the end, but if he doesn't get one he can go on for years, he's still vry strong.

    That flash of recognition is so valuable for us, isn't it? My heart leaps when I see it, and if I don't the whole day is miserable.

    I'm sorry you, your husband and your son have been ill, it must have been hard to cope with, particularly with your other six year old full of energy. I'm glad you're back with us, fit and well.

    Love,
     
  4. sheilarees53

    sheilarees53 Registered User

    Apr 11, 2006
    37
    Beckenham Kent
    Dear Mameeskye,

    My heart goes out to you. I am in exactly the same situation. My mum is in the end stages of Lewy Body Dementia and all I am doing is waiting for the phone to ring.

    It breaks my heart to see her the way she is and like you I don't want her to go on any longer in this way.

    My thoughts are with you and your family. Love Sheila
     
  5. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Thank you for the thoughts.

    The meeting today with social work went well. She apologised for the lack of frequency of the review but tells me that they do concentrate their efforts on the vulnerable and those without family. I am so glad. I was horrified to think that if Mum hadn't had my brother and I she would not have had an independent soul looking after her for almost 4 years.

    She is also going to try and find a solution to the nasty fee increases that we have been getting. It was a further £80 per week last year and we are now waiting for notification of the increase after March again. She advises that there is supposed to be a National Care Contract coming into play to try and protect cases like ours where there is self funding and the relatives pay the home their part and SW pay the Nursing Care Allowance. This should prevent both Mum being charged more than the Council is charged for the same care and to have some leverage on fee increases rather than the exploitation that can currently exist. There is no way we would move Mum and we would pay the fees and the home rely upon this but since Dec 2003 Mum's charge has increased by 57%.

    So that part was positive and we hope things may change.

    Unrealistically she suggested us getting a wheelchair for Mum. It takes 6-9 months in our area but the home have some chairs of their own and we really don't think she will be around (or if she is really able to benefit in any substantial way) so I have left it up to the home if they want to complete the paperwork as they have spare chairs that are used for moving Mum at the moment.

    On the plus point although Mum was terribly tired today she ate her lunch well, even if slowly. She was still talking to Angels and as I introduced the SW she gave a big smile grabbed the woman's hand and wouldn't let go..I could see the woman panic! It was quite funny really for someone in her position to not really have a clue what to do and what this stage can be like.

    So all in all a good day.

    Thanks once again

    Mameeskye
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Mameeskye, I'm glad your review was so positive.

    Regarding funding, I have a contract with the LA. They pay the CH their maximum (way below the home's advertised rate for self-funders), and the LA bill me for that amount less the free personal care allowance. Any increase can only be what the LA will pay.

    It sounds as if this is going to be the national norm, and so it should be. There's no reason why self-funders should pay more than the LA. I hope your area puts it into practice soon.

    Isn't it typical that the SW hadn't a clue how to handle your mum!:eek:

    Love,
     
  7. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    HI Hazel

    Thanks.

    I got the impression when we did discuss the fee issue that the SW was amazed at the increase last year. She did agree that something had to be done to protect those like Mum who could easily be exploited in their vulnerable situation.

    Mum is in a good care home and I wouldn't move her over the fee issue but I do feel that it is almost extortion as this must be known to those running the homes.

    Sorry to hear that John is not too well again today.

    Love

    Mameeskye
     
  8. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi Mameeskye

    Oh I wish I had something marveously profound to say to you but...

    It's lovely that your mum did recognise you and that she's calmer. I hope this calm phase can continue for you and for your mum - as you say she's been through so much and she deserves some quiet time talking with her angels.:)

    I love that the SW didn't know how to react when your mum held her hand - I really wonder where these people have trained?? My mum kissed her consultant on a home visit - she just smiled and said thank you how nice. About the only good thing she's managed so far.

    Sorry to hear you and your brood have been ill - although you should expect your sons to beat you on the Wii - it's inevitable!! The circle of life...
     

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