How to handle thiis...?

Discussion in 'ARCHIVE FORUM: Support discussions' started by DaisyG, May 10, 2007.

  1. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    My husband looks like he is going to be on his way home from hospital in a week or so.
    To be honest I didn't think he was going to make it, neither did the doctors by all accounts.

    Still lots to do, and plan.
    Not sure if I will be able to handle him LONG TERM though.
    A lot depends on the violence side of things... and the mobility + +

    I had a lovely long chat with one of the Neurologists today, and I think they are thinking af an alternative diagnosis for VaD.
    My guess is 'mixed' or lewy.

    So,... came home spoke to MIL on phone told her the latest and she was
    SO CROSS with me.:mad:

    "You don't want to be telling the Doctors too much... my girl!!"
    They haven't got the time to listen to you and read your notes....

    I just don't get her or the rest of my in-laws.
    They are so dead against me 'tellling tales' as they put it.

    It's hard enough at having to deal with this myself.

    When he was dying in ICU, they were all so nice to me... and now things are back to normal. No calls... no visits.....

    If I don't ring them, they get angry with me... can't handle that either.

    Thanks for listening,

    Take Care

  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Daisy,

    I don`t know how you`ve tolerated your inlaws for so long. They are so ungrateful and critical, you really deserve better. :mad:

    I could say a lot more, but this is a public Forum so I`d better control myself. :rolleyes:

    I hope things will be Ok for you and the violence doesn`t return :)

    Take care, love xx
  3. connie

    connie Registered User

    Mar 7, 2004
    Daisy, good to hear from you. Please try to ignore your inlaws, save your strength.

    LONG TERM, don't think that way. Remember Norman's maxim "Day by day"
    That way I am sure you will cope for longer.

    Good that they are looking at a different diagnosis, at least it shows they are listening to you and 'looking' at your husband.

    Take care of yourself. Love n'hugs,
  4. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Hi Daisy

    Really good to hear from you. I really dont know how you cope with the outlaws, and have done so for so long. You keep on doing whats right for you, thank goodness the doctor seems to be working along with you. Continue to give them as much information as you can.

    You look after yourself.

  5. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    a STRANGE update.....

    Just had a call from the OT's at the hospital...
    They are having trouble in getting hold of our Social Worker (join the club).
    NOT repyling to calls, messages or e-mails.

    I believe we (my husband) now has NEW SW .
    We need to arrange a new Care Package.
    You would have thought that the old SW would have told me.

    How can this 'person' know what my husbands needs are.. or going to be.
    Things have changed a lot.

    Hospital have said that if the SW delays things, and husband has been classed as
    'fit for discharge', then WE can be charged for the bed at the hospital.

    Has anyone ever had this happen?

    I know we have a week or so at least 'spare' to organise things...
    He can't come home without the Home Visit first to assess our needs.... etc...

    But what if the new SW won't 'sign off' the care package?


  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Daisy, What a predicament.

    I`ve no idea what to suggest, I`m so sorry, and I hope someone soon will be able to help.

    You seem to be being tried and tested from every possible angle.

    I do hope the SW shows his/her face.

    Love xx
  7. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    I suggest you stop worrying about the inlaws and concentrate on yourself and hubby. My thoughts are what about an urgent letter to Social Services (the top bod if possible) suggesting that if delays occur then subsequent charges are their responsibility - which surely they are.

    I think you will know when the time has come for you not to be able to cope at home - as you say much depends on mobility and behaviour (that would be my indicator too).

    Thinking about you. Best wishes Beckyjan
  8. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Daisy,

    I'm afraid I can't answer your questions but I know if I was in your position I would be telephoning Social Services and asking to speak to the new Social Worker assigned to your husband ASAP!

    If calls and messages are not being answered I would ask to speak to the "Duty Social Worker" because if this isn't an urgent problem, then it may very soon become one when no one is helping you to "arrange a new Care Package" etc.

    Hang on in there, hopefully, if you can finally get hold of him/her, you may find the new SW is more efficient and helpful than the last.

    Best wishes,
  9. Taffy

    Taffy Registered User

    Apr 15, 2007
    Hi Daisy

    I am sorry that I can't help you with any advice,but I am sorry that you are going through so much grief only if we could pick our relatives as we do our friends:( I do hope that everything works out very soon and in your favour so that you can have time to unwind and prepare for the next part of this journey. Keep Safe Love Taffy:)
  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Daisy, it seems as if you are being hit by one new problem after another. You're in a terrible situation, and surely SS should have been in touch with you to set up the new care plan.

    I do hope you can get things sorted out in time. It is most unfair that you should be charged for the bed, because SS can't organise themselves.

    Good luck,

  11. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    OK to update things.

    Have been able to talk to 'receptionist' at Social Services, and messages HAVE been passed on.. just no-one calling back.

    Calls from the hospital staff have been ignored too, so it's not just 'me'.

    I've got accurate details of dates and times etc when I rang... who I spoke to....
    Paper (in case computer crashes) , CD and e-mail copies of letters.

    When do you think I should bother the On call / Duty Social Worker?
    As it stands it's not 'urgent' just yet.
    Should I be on the door step on Monday morning so they can't avoid me?

    I know that they have a BIG meeting on Wednesday morning, so they can't say they are not in.

    I saw my husband try and walk today, and I think it's fair to say that he is not going to be that mobile.
    I've been told that HE MUST NOT walk at all on his own.
    He believes he can do a lot more of course.:eek:
    He was not aware of how much he was being 'supported' , and how much that he was stumbling.
    He'd struggle on his own, and not be at all safe.

    He's not happy in talking about his incontinence either.
    in the past it has only been a mild concern, but now things are different.

    I need him to agree to see the District Nurses at home, to suppy us with products.
    he is saying that he is OK, when he is not.

    What EXACTLY should the SW be doing for us right now?
    Should they be interested and concerned enough to help us?

    Does the Care Package (slightly subsidised) come out of their own personal SS budgets? which is why they are reluctant to give us any additional care/support.

    Why won't they tell us what OTHER care/support is available?
    When we've asked them in the past "What is available?"..... they have said...
    "Tell us what you want, and we will tell you IF it is available".

    They won't actually 'say' X Y and Z....

    I would go out of my way to please and help people, tell them about what can be done for them...
    It should be part of their job.

    Maybe that's why the other SW left.... too much red-tape.... and PC rubbish to contend with.

    Take Care

  12. daughter

    daughter Registered User

    Mar 16, 2005
    Dear Daisy,

    Sorry if I panicked you, I'm just too impatient sometimes about these things and I agree that if I were the SW I'd like to think I would be on the phone to you as soon as possible, even if was just as a reassurance and to make a future appointment with you.

    Anyway, as you say, you have at least a week before any decisions have to be made, and with luck you will hear from the SW on Monday, (but I know I would be ringing again first thing on Monday morning - that's probably just me again - too impatient for the answers). It's good that you have all your questions written down and ready to ask.

    Let us know how you get on and try not to worry too much over the weekend (easier said than done, I know).

    Love from,
  13. Grommit

    Grommit Registered User

    Apr 26, 2006
    I too am having similar problems but not to your extent Daisy. I phone and leave voicemail messages for Jean's SW and when I eventually contacted him he told me that he had not got a voicemail facility on his phone. Yet it was his voice and his name that was on the message.

    Also they are not telling me what is available, they just keep asking what i want. I keep telling them it's not what i want, it's what Jean wants that concerns me. I'm afraid it's very much like fighting fog in that it appears to give wasy in front of you but closes in at the sides and behind.
  14. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Hi Daisy,

    I think I would be inclined to go way over the top with my 'what I want is', I'm sure they will then tell you quick as a flash what is not available!!

    Good luck, hope you make some progress soon.



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