So is this it...?

Discussion in 'End of life care' started by DesperateofDevon, Oct 14, 2019.

  1. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,212
    Ooo! Bagsy you on my team for trivial pursuit!! x
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,212
    Just opened up emails... Dad now requires cot sides to stop him from falling out of bed
    CHC assessment
    does that mean he has fallen ?
    Or is at risk of?

    actually as he’s off his legs mostly I’m not surprised, just saddened that we have had to fight to get him the care he needs!

    Hope SS find him nursing home soon. Expect it will be in his county of origin/ funding authority

    am not going to chase SS or anyone about Dads case- I’m afraid they will have to sort it all out.
     
  3. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    134
    Oh dear DofD how could we be shocked at you, that had me in tears, you are a good person
    Your one of the best! Sending you lots of ((((((((((((((hugs))))))))))))))))
    And strength to keep going!xxx
     
  4. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    2,191
    Female
    East Midlands
    Honestly @DesperateofDevon i know that feeling well!
    Some aspects of my mum’s dementia were horrendous especially when she was still living at home despite having carers. I remember her neighbour ringing me up & saying she needed help while I was actually moving house ( I moved 6 times in 7 years) & I honestly thought I was going to have a mental breakdown there & then! I was crying on the phone saying I’m sorry but I’m actually moving house here, I was stressed to the eyeballs, my useless ex was not a lot of use & it was all too much.
    Self care is important & I haven’t looked after myself much this year & that has to change. I feel battered & all this battling with the executor has not been good for me either & explains why I just cannot shift this lurgy that I have had since October!
    I just want to get my life back too & honestly I’m going to get there & so will you! Xx
     
  5. TNJJ

    TNJJ Registered User

    May 7, 2019
    970
    Female
    cornwall
    Did he not have bed rails on his nursing bed?? Or does he not have one?
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,212
    Yes he does .... just had his Gp ring me. as his care home don’t communicate still the GP was very concerned that I was unaware of new issues & the deterioration. The GP said also said that the home are leavin Dad in bed a lot despite him having his state of art wheelchair. I cried when he said
    Your Dads looking very sad.
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,212
    Had lots of tears today!
    came home last night after a late night market to find the house decorated for the festive season!
    Lovely daughter mode back after having a blip moment! xx
     
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,212
    How when safeguarding is under investigation can the care home still not inform us of Dads bedsores, issues, etc?

    either arrogance - ignorance - stupidity or just total incompetence!

    I’m letting the authorities sort this all out ; they need to do their jobs .

    think there might be a few more tears today!
    I’m in danger of becoming dehydrated at this rate!
     
  9. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    2,191
    Female
    East Midlands
    The care home honestly sound absolutely **** & ill prepared dealing with your Dad. I hope a new & much more able care home is found soon. I would be phoning up social services all the time! Well done to your daughter putting up the decs though xx
     
  10. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    641
    Bedford
    My heart goes out to you. It just seems when you have been kicked someone kicks you down again. How terrible (understatement) that your Dad got the chair he so badly needed and now it is not been used for him. I know you said you would not be able to visit so often if he goes back to the funding area but it just seems the quicker he is out of the current CH the better.
    On the good side I am pleased that your daughter has hopefully now covered up your naked, minimalist tree
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,212
    290FC747-8A47-472D-A32C-BE5A52BC1F5B.jpeg Thought we could do with a smile!
    one of the visitors to my stall last night
    Apparently she hates the outfit but hates being cold more! The face said it all!!!!
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,212
    Oh is off tomorrow & I am releasing him onto the home!
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,212
    OH is off tomorrow & he’s now on the case as the CH & SW don’t communicate with me or include me in any meetings etc! at least the GP has a conscience!
     
  14. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    641
    Bedford
    That certainly did bring a smile
     
  15. canary

    canary Registered User

    Feb 25, 2014
    11,099
    Female
    South coast
    Oh D of D, what I time you are having!
    ((((((((((((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))
    I hope your dad gets moved soon and is better cared for.
    How lovely to have your daughter do that - the tree looks lovely
    xx
     
  16. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    2,191
    Female
    East Midlands
    Omg if the care home, social services had not communicated with me about my mum’s care then there would have been hell to pay! If fact I had to complain to PALS when she was in hospital as could not find anyone to talk to about how she was for ages - and the nurses could only tell you so much. My mum’s social worker didn’t fight for her at the CHC assessment meeting too but the CHC assessor was an awful person, hell bent on not getting my mum fully funded care. I did start to fight that but the NHS were really funny about access to medical records & wanted to see my mum’s will & that I was the main beneficiary plus her daughter.

    Dealing with officialdom stinks! I can see why you don’t want to deal with them at all. Hope your event went well the other night. I had a great event on Saturday but sadly someone appears to have shared their germs with me as well seeing as I now have the lurgy! Xx
     
  17. theunknown

    theunknown Registered User

    Apr 17, 2015
    384
    I can understand the thing about access to medical records - medical records are confidential between patient and doctor. A few years ago I had to wait in a tiny waiting room for a cancer scan in the department that was used for pregnancy scans. The only other two people in the room were two very young girls, one of whom was pregnant, taking selfies right in front of a sign that said no photographs or filming due to patient confidentiality. If only the person behind the desk had reinforced that, or even mentioned it to them.

    In my mum's case I opted for palliative care and nothing invasive a couple of years ago, and I'm glad last month she was able to die in her bed in the care home she'd been in for five years. As for a will - I don't see how anybody in the NHS could possibly demand to have sight of it. It's completely wrong for them to say they need to see it. I'm the executor for my mum and I know the only people who have any right to see the will are the person who made it and the executor (and obviously a solicitor if used). They may allow sight of it to others, but otherwise a will only becomes public once probate has gone through and the will has been lodged with the central registary office. Then anyone can apply, but will need to pay for a copy.
     
  18. theunknown

    theunknown Registered User

    Apr 17, 2015
    384
    Also, to those who feel guilty about wanting all this to end: I think for most of us it's about wanting the sufferer's pain/non-life to end. Like a previous poster on here, it got to the stage where I was waiting (and to some extent willing) the care home to ring and say 'this is finally it'. I don't think anybody would be posting on here if they weren't putting the person with dementia/Alzheimers feelings before their own, so there is absolutely nothing to feel guilty about. For the first time in five years I'm celebrating Christmas again. Albeit just me and my husband going to our local for Christmas dinner, but I haven't been able to enjoy Christmas because we always had my mum to stay and she was sectioned out of the blue (for me) in February. I'm really looking forward to socialising again finally on Christmas Day and shifting to (yet another) new normal.
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,212
    So this is it?..... Dads sodium levels are off the chart
    His Dr called yesterday afternoon & late last night the out of hours Dr called.
    comfort care not hospital admission
    Dad is so frail & in so much pain, not taking fluids & the GP said just water now no food.
    I didn’t have the heart to set up his Christmas tree. So will do that today. I bought a fake one with lights on!

    Today the home called - I slept in for the second time in a row. Typical!i have said as discussed with GP &out of hours Doctor as his sodium levels are off the scale & allmeds bar Butec patch & oromorph are off the table that as agreed with medical professionals it’s comfort care now!
    He has a chest infection
    No antibiotics
    No hospital admission

    The comfort pack is now in place. Finally my darling Dad will be pain free!

    I didn’t think I had tears left.... so dehydration is a real risk at this rate.

    I want this to be pain free for Dad & don’t want him to suffer anymore. So folks I don’t know what’s what but I do know that without the lovely support from you all I wouldn’t be this strong but slightly soggy person waiting for Dad to grow his wings.

    my love & respect to you all
    Claire
    Xxxxxxxxxxx
     

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