So is this it...?

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

  1. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Hi folks I have started a new thread as I felt that Dad has reached a turning point, maybe but actually I’m so numb that I’m not sure of anything.

    Dad had paramedics out to the care home on Saturday evening, his TEP form states no intervention at end of life beyond pain relief/ comfort care. So that is now activated so he’s on Butec patches & oromorph now.

    the care home still get him up & yesterday he was sitting in his room asleep slumped forward in his chair with an untouched plate of roast dinner infront of him.
    Apparently he ate cornflakes for breakfast & had had two cups of tea! His fleece was soaking wet - it’s dark navy blue & so only when touched was that obvious.

    I managed to get a couple of tea spoons of ice cream into him , I fed Jim &coaxed him. Then back to bed, minus the wet fleece & shoes.

    This is the same man who paramedics said it wasn’t in his best interests to take into hospital, the same man who said pain relief was in his best interests, the same man who is severely dehydrated.

    my MIL is worried about my own health issues & was cross with me yesterday for going back into the home after yet another late night ( my husband is at a loss how to help anymore)
    Everyone keeps saying to me your Dads in a care home, they know what they are doing...... & yet it seems not.

    paramedics say why are they getting him out of bed, as they access his health records back to 1991?

    so I keep going in to the home & sitting with him, cuddling him, when he cries out in pain I ask for more oromorph as the hospital nurse who dispensed the prescription told us that as & when he needed it for it to be administered. ( doctor on call faxed a prescription to a pharmacy that was closed- no 24 hour pharmacy in this city it seems, but one in the next county over an hours drive away!! So lovely A&E triage nurse got us the prescription sorted as we couldn’t get hold of the 111 doctor on call!! Yep folks you really couldn’t write this !!)

    I’m sat at home this morning, dreading to make the phonecall to the surgery to explain the request by the A& E nurse to follow up the medication; dreading having to sit all day with Dad just to ensure his care & comfort, afraid the staff will think I have no trust in them- I do but they just can’t nurse him like he needs & until things are put into place what can I do......?
  2. canary

    canary Registered User

    Feb 25, 2014
    South coast
    So, they have decided that he is at End of Life now?

    This is such a difficult stage. When people reach end of life due to dementia their body starts closing down slowly and they do not need to eat or drink at all by the end. If your dad has reached this stage then this will explain his lack of appetite. It sounds like the end of life medication has been ordered and is being given. Im afraid that this stage can go on for a while - anything from a few days, to three weeks. And then, sometimes they bounce back, so its all very uncertain.

    Do not worry about being with him. Once it was obvious that mum had only a very short time left I stayed with her night and day, sleeping on the floor of her room for three days. Make sure you say all the important things - I love you, thank you, Im sorry and (if applicable) I forgive you.

  3. Pete1

    Pete1 Registered User

    Jul 16, 2019
    Hi @DesperateofDevon, I'm sorry to hear that you and your family are now going through this. It is incredibly difficult and traumatic to witness. I certainly felt that the care home was a far better place for Mum at that stage - rather than hospital, and they did sound job in administering pain management. We decided that bed was better for Mum at the stage she had moved on to, and it sounds like your poor Dad is there too. The advice by @canary is spot on, spend the time comforting your Dad and talking to him - do what you feel is right for you too. I wish you all the best, take care of yourself too through all of this.
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    So I rang the surgery to ask if more oromorph was on prescription just like the A& E asked me to!
    Imagine my surprise when after explaining everything to a receptionist she said that the Home had requested a doctor to come out to Dad.

    yes the home again didn’t let us know!
    Imagine the shock the home got when I turned up before the Doctor. Lots of scurrying around to let management know I’m on site! Yet the manager walked past me & smiled & said hello , but not a word said about a doctor called out!
    So I played dumb, after all it was the Doctors who told me they had been called. so for two an a half hours I sat with Dad watching him not eat or drink. Various protein shakes, cups of tea were presented & later whisked away. All the time certain members of staff protesting too much that Dad fed himself & had a huge breakfast of cornflakes & toast. Must have been big as Dad didn’t eat or drink anything else while I was there .A large plate of meatballs, mashed potatoes , cauliflower, green beans was put infront of him- he created a beautiful abstract sculpture with it on his plate. I did encourage him to eat a teaspoon full of cauliflower but the staff bleating that he’s a slow eater & usually eats it all must have put him off his food - again!

    The Doctor arrived, & Dads meds were drastically reduced from 11 to 2!
    Due to his inability to swallow medication. pain relief upped in patch form due to the same issues

    So it’s with great surprise that I receive an email from the home to day Dad doesn’t qualify for SALT assessment

    even greater when the same GP who saw him today spoke with us last week & asked for the assessment to be done. The home spoke to the SALT team on the phone & Dad doesn’t qualify apparently....

    It beggars belief....

    On top of that Dad was in pain & the home said he didn’t require his oromorph!!
    Yet the Doctor said today every four hours & more if required- yet I had to ask repeatedly for it to be given to him!

    I’m beside myself - this is unbelievable!

    someone somewhere must be able to do something about this surely. I’m Dads advocate no social worker appointed now,even the paramedics & GP’ s are being ignored .

    ive emailed both county councils the one meant to be investigating & the one paying for his care. Sent a copy of the homes email to me about no swallowing issues to all & to the GP I saw today.
    Surely someone somewhere will do something

    if I treated my dogs like this I’d be up in court for abuse! this isn’t fair or right!
  5. AliceA

    AliceA Registered User

    May 27, 2016
    I am so sorry for you. Love and hugs.
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Thank you, I’m beside myself with worry. I no longer trust those I should with Dads best interests. I cannot believe after all I’ve been through getting Mum & Dad help that I’m in this awful place again.

    I just want him to be pain free!
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I can’t believe the care home can ignore the Doctor or paramedics like they are...
    I wish I could bring him home to me to look after but I physically can’t do it. I cannot stop crying tonight - how can a Care home do this .....?
    Why when you are under safeguarding would you even consider this behaviour appropriate?
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    when I can get the care home to administer oromorph & put him in bed he’s much more comfortable. The home are aware that he has osteoporosis & other issues but insist sitting him in an upright chair so I find him bent over double in pain. Yet no matter how many times I tell them they won’t ensure his comfort. It’s got now that he’s in so much pain that he can’t raise his food or drink up to his mouth & swallowing Is a huge issue but the home day there isn’t one.

    doctor says there is!
    Paramedics say there is!
    We say there is !

    I’m slowly losing my sanity here !
  9. AliceA

    AliceA Registered User

    May 27, 2016
    Xxx keep holding on.
  10. TNJJ

    TNJJ Registered User

    May 7, 2019
    So sorry to hear this!Yes there should be someone accountable .
    If he is uncomfortable in a chair and is on “End of Life” he should be in a hospital bed with regular repositioning not being in a chair.
    Sending ((hugs)).Wish I could help more.
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I have raised more safeguarding issues & all done via email - paper trail!

    thanks all for just being there - in the ether- it helps knowing that I’m not going mad & this isn’t acceptable care.

    no where is perfect but this is now beyond ridiculous!!
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I am trying to keep my sanity, long walk required tomorrow & some work needed to be done as I will have nothing to sell at the Christmas events I’ve booked
    But I feel guilty about that , I need to earn some money as I’ve put everything on hold to help Mum & Dad.
    Another dilemma!!
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    This is the criteria for all of us once there is no hope of anything better. Pain free and comfortable is all we can ask for and whoever is responsible for pain relief for your dad is letting him down.

    Is he considered to be on palliative care @DesperateofDevon
  14. Starbright

    Starbright Registered User

    Apr 8, 2018
    What a dreadful situation @DesperateofDevon you find yourself in....having just read your thread I’m really upset for you’s beyond comprehension that they can ignore the recommendation of the medics.
    I hope you get some rest tonight ...wishing you strength .
    (((Hugs))) A x
  15. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    Others have trod this path before and are able to pass on what they have learnt.
    What I would like to say is that these are the last actions you can ever take for your dad, and you are doing him proud; have no regretsfor standing up to authority for the care your dad needs at this stage of his life. No parent could ask for more.
  16. Lirene

    Lirene Registered User

    Sep 15, 2019
    Honestly my heart bleeds for you with all this distress. Even in the darkest hour we are not alone. I am praying for you, your dad and family. Love and hugs xx
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Thank you @Lirene @Dimpsy & @Starbright your lovely words brought tears this morning & have given me the push to keep fighting for Dads care plan to be followed. It’s horrid but it must be so horrible for Dad - he’s living through this daily..... that’s what’s killing me - what he must be going through ! No wonder when I go in he clutched hold of my hand & won’t let go for anyone, until I have got him comfortable back in his room. It’s Groundhog Day every day! I’m so sad for him...
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    Paramedics day so as does the doctor who visited the home. Yet the home keep acting as if he’s fine..... it just doesn’t make sense. Dads TEP form has kicked in, he’s renal reading aren’t good, he’s been removed from all medication bar two so from 11 tablets to 2 & the pain patches have been increased & oromorph as required.... but the home seem incapable of being aware of when he is in pain.

    No matter how many times the home are asked by medics to take notice of our observations the home just won’t do it! I was with Dad for hours yesterday & the day before & kept asking for his oromorph to be given but the home wouldn’t follow the every 4 hours & as required given with the prescription.

    How can this be allowed they keep saying it isn’t required but Dad slumped forward his head on his knees almost because of his pain is unbearable to see. The ignorance & arrogance of certain staff members makes it impossible for others to do their jobs properly.

    no wonder families give up it would’ve easier to just walk away & ignore it all - have a life myself & go on holiday like normal people do.......but instead I am daily battling to try & get the home to understand the health issues Dads had for decades & get the support & care he now requires.

    I have been surprised at some end of life care situations I’ve seen at the home, the more challenging ones - but who am I to judge a snapshot of time. Yet others who are at end of life care & are immobile & vegatative are obviously easier to deal with & need less nursing.

    The home told me on Sunday that CHC funding had been applied for, yet a SALT assessment criteria the home said wasn’t met. If you can’t swallow your food properly & cant express yourself what else can the criteria be.
    Dads lost so much weight he is skeletal, when we are present he has issues & cant feed himself- it’s beyond just extra encouragement that the home say he requires & Protein shakes!
    Even the Doctor said yesterday if he wants ice cream for every meal give him ice cream maybe try some jelly with it.

    so the nightmare continues each day & it doesn’t seem to get easier. The unfairness & indignity of Dads situation is breaking my heart. It’s a very lonely path being an only child & not having the support from immediate family that you require that are all absent at this moment in time, busy with their own lives.

    I am slightly jealous that they can walk away from this horrid situation, switch off from it.

    I go back into the home each day & see Dad doubled over in pain & my heart brakes all over again. Why can the management overrule those who genuinely care & want to do a good job. The resident should always be the priority
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    East of England
    Such suffering is beyond endurance both your father’s and yours @DesperateofDevon and it’s just horrible. Whatever today brings we are thinking of you trying so hard against what seems like inexplicable obstruction. I hope you can keep him comfortable and know you couldn’t just leave him to the care home staff with their attitude. Wishing you strength today x
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    thank you sending big (((((((hugs ))))))) back
    Onwards & upwards we go
    Take care lovely

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