So is this it...?

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

  1. LizzieM

    LizzieM Registered User

    May 6, 2019
    36
    You’ve not let your Dad down, far from it. I’m so sorry to read this thread and really empathise with the difficulties sometimes experienced with some health ‘professionals’ however my gut feeling on reading this is that advisedly you’ve got your big girl knickers on (I completely get how knackered and sad and hopeless you feel though but I’m not going to bore you with how) as it is the CH that is letting him down. To be labelled as hysterical and histrionic by the CH is unforgivable - they need to be asking themselves what is fuelling their perception as they are certainly pouring petrol on you the carer’s and daughter’s burning coals of fears for their parent and loved one.
    If you can bear it, you need to make those Bridget’s (Jones knickers) armour-plated as you are clearly rocking their boat and it needs to be rocked - how dare they?!
    Document the lot and share it as much as you can and are willing to.
    There should be a palliative team assigned here as well as the GP and what is happening to all the Oramorph that he’s not getting to control his pain? Not a conspiracy theorist but it really does sound like there’s something else going on here and you and yours are having to run the gamut to get to the bottom of it.
    Wishing you huge strength, do not give up! (((((((( hug)))))))
     
  2. TNJJ

    TNJJ Registered User

    May 7, 2019
    679
    Female
    cornwall
    I’m so sorry that you are going through this..I bet the new GP had plenty to say to them when he got the care plan..
    I’m glad the big guns were contacted..So they should have been!
    (((Hugs)))
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,717
    I look at other residents & see how differently people are treated - I can’t believe how our experience has become the polar opposite.

    hubby is coming home to be there when the social worker interviews us. Daughter is on her way back as well. I am really lucky to have such supportive family, but it doesn’t stop you from feeling isolated at times

    I really don’t know how full time carers cope. They are extraordinary people
     
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,717
    I’m pretty sure that the big guns made all the difference!

    knackered permanently at the moment

    or cream crackered!

    hoping to get some more work done as that’s stressing me out as well!!
     
  5. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    128
    Female
    its good to hear the family is coming and you won't be on your own with it all that's happening.
     
  6. TNJJ

    TNJJ Registered User

    May 7, 2019
    679
    Female
    cornwall
    Oh yes it would have!!
     
  7. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    413
    Female
    Would you (or oh or daughter) be able to take your phone with you to record what is being said? Failing that, ask oh or daughter (or better, someone neutral) to minute the meeting, with who said what, when and then immediately afterwards, formalise the minutes and send a copy to each person who attends.
    Clinical but necessary, at this late stage, every minute counts for your dad's comfort and dignity.

    Go well prepared with your concerns, for example, question your dad's pain relief management, the CH will have to explain the reason they have not followed the GP instructions, before witnesses.
    All the best and keep posting.
    XX
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    917
    Male
    North West
    I am so sorry @DesperateofDevon I have not seen your thread till now thorugh my own pile of stuff to deal with the last few days.

    There are real issues here on pain control and I can't believe what I have just read on your thread, I am quite shocked to be honest.

    I think if pain is now a real issue and the home he is in can't cater for his needs have you asked for hospice respite to get control of his comfort needs and then while he is there find another placement for him? I know its very difficult, but if it came to it I would call an ambulance and get him removed to a place where his pain will be managed and then take this matter up as a serious matter. This may not be a safeguarding issue, but it may be a civil negligence matter,I would take that forward when you speak to the care home
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,717
    so paramedics & DRs did Dads best interests meeting with us; as the situation is now declined further I am going to ask the safeguarding social worker tomorrow about removing him from the home as I feel that his needs aren’t being met. Have Dads old social worker allocated the case as well so hopefully I can get assessments by unbiased professionals to support the GP & paramedics.
     
  10. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    413
    Female
    I'm very sorry to hear that the situation has worsened, you can sense how utterly devastated you feel in your post @DesperateofDevon ;let it roll over you for a while and take your brain out of gear, you may not have won this battle, but you haven't lost the war.
     
  11. Buttercup24

    Buttercup24 Registered User

    Jul 17, 2016
    18
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,717
    I hope today you are not as knackered & sad, & no it wouldn’t bore me. Actually reading the forum & others experiences helps put things in perspective.

    I am always amazed at what so quickly becomes normal in a carers life, how dementia becomes normal & is just almost ignored in some cases ( mine included) until a crisis point is reached. It’s a sad disease & situation to be in & live through & leaves it’s mark on all it touches. The pebble in the pond comes to mind with the ripples being far reaching!

    I cannot tell you how much I appreciate all the lovely & it is lovely to have it - support, words of wisdom & sharing of experiences

    I know that to those who have no experience of dementia it is an alien world we inhabit! It consumes not just the PWD but demands so much from their loved ones.

    Hats off to those who are caring at home with PWD- your superhuman resilience & stamina astounds me on a daily basis. I don’t judge anyone’s choices in how they care for their PWD- we all try to do the best we can given the circumstances we are in.

    As carers we are our harshest critics, & the careless words of others can deeply wound when at our most vulnerable. All we can do at any given moment of time is our best. If I feel that I am lacking in ability to provide my best it’s usually because the system of support for those with dementia is flawed & complex.

    When loved ones are at their most vulnerable it’s easier to blame yourself for not being able to resolve the situation than blame the bureaucracy ,overstretched & underfunded system that fails to provide care & support when so desperately needed.

    So folks - post away .... I for one am listening ( while wading through along with you all!)
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,717
    @Dimpsy i have realised that there won’t be a quick resolution to Dads situation, I spoke today with safeguarding & asked if this inquiry would continue if Dad passed away. There is some comfort in knowing it will, I’d hate anyone else to go through this.

    for such a thoughtful, gentle man who quietly went about life with a dry sense of humour a strong work & moral ethic I will not let this sad experience become the norm for others to experience.

    I want to ensure those who are conscientiously working at the home are not going leave like so many have done recently, no one should be afraid to voice concerns about care .... how dare those in management & senior positions compromise not only the care of the vulnerable but their work colleagues.

    so I hope that by keeping pushing forward through this situation someone somewhere will benefit from our sad experiences.

    meanwhile my family today were there for me - raising concerns of their own. Vocalising & expressing eloquently the issues we have historically & currently experienced. Today I didn’t feel alone in all of this, just able to be my Dads daughter who wants her Dad to not be in pain or distress & cared for appropriately.

    So folks don’t give in or feel that no matter what nothing changes, together we can all make a little difference to someone somewhere at sometime.............no matter what!
     
  14. Pete1

    Pete1 Registered User

    Jul 16, 2019
    201
    Male
    Afternoon @DesperateofDevon, well done for having the strength to see the safeguarding through at such an emotionally draining time. I think what has happened to your poor Dad, and as a consequence you and your family, is absolutely disgusting and shameful. You should not have been subjected to this, thankfully the GP will be able to provide evidence to support the safeguarding, which will hopefully lead to action being taken against the home by CQC and hopefully the local authority (if they make placements there) to prevent further recurrence of this dreadful situation. I just can't understand it, and the stress it must be causing you too. I hope your Dad is more comfortable now. So pleased that you have your family round you too. Take care.
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,717
    thank you, I have sadly accepted that Dad isn’t going to have all the changes put in place that he requires, but I’m not going to let another person go through this- I’m determined that accountability for the decisions made are traced & hope that the system will adapt to ensure this sad experience is not repeated in this care home. I can’t change the whole system but I can bring to attention how care can fail those who need it most in this home.

    life’s not always black & white, I know nothing’s perfect but the situation Dads in is so wrong & we are so powerless to remove him from it that I can’t not try get the flaws acknowledged & hopefully sorted out!

    wish me luck folks, I’m going to need it !
     
  16. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    413
    Female
    Luck to you; peace to your dad.
    XX
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,717
    I’m a coward, no really I’m a coward ... I am afraid to go into the home & that I will find Dad slumped in a chair in a longe in pain like the social worker did yesterday who is assessing the safeguarding issues.
    We met with this S/W today in our home .

    I think the S/W was receptive to our concerns, I felt the issues we raised were well discussed.

    so I’m not going in to see Dad for a few days, I can’t not get upset on his behalf & I don’t trust myself to keep a civil tongue in my head anymore. How selfish is that? What a coward I am .. but my hearts breaking & the tears keep falling. I don’t want to distress my Dad with my obvious emotions.

    so I’m taking the easy route & going to allow myself today to grieve for the loving father who no longer recognises me & is trapped in this horrid situation.
    Tomorrow I drive for 6 plus hours to get the handover of care package sorted & meet the new team for Mums end of life care.

    I am a coward but aware that I am only human & can only do so much, & I am learning to accept that.
     
  18. TNJJ

    TNJJ Registered User

    May 7, 2019
    679
    Female
    cornwall
    My thoughts are with you on this journey.Sending ((hugs)))
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,717
    I hope that soon he will
    X
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,717
    I am so grateful that I found TP - it’s made me realise how many of us have similar experiences & that really helps.
    X
     

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