So is this it...?

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

  1. 70smand

    70smand Registered User

    Dec 4, 2011
    265
    Female
    Essex
    Dear @DesperateofDevon ,

    I am so sad to read your updates. It is shocking that you are having to fight for the care your beloved Dad deserves.
    Is it possible that a palliative care team could come in to reinforce the care your dad needs? Is there a local hospice you can contact? I only say this as a palliative care nurse in a hospice myself, and I know our community team visit care homes to support and advise them, and have even transferred residents from care homes that have safeguarding issues and are unable to care for a person on end of life.
    You are doing an amazing job, and I’m so glad you have a supportive family.
    Sending you a massive hug xxx
     
  2. daveyshadow

    daveyshadow Registered User

    Jan 14, 2015
    38
    @DesperateofDevon I have just read through this thread and really I am just horrified at the treatment you are all receiving, not just your dad but your whole family trying so hard to do your best for him.
    Don't stop doing your best for him, even if that is staying away for a few days. And I am pleased to hear that the inquiry will go on whatever happens. We can't allow treatment like this to continue.
    Please take all the strength you can from your family and the support here on TP x
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,472
    You are not a coward, just exhausted by knocking you head on what seems a brick wall. You are super human to have done so much. Love and a big hug, xxx
     
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,709
    I am having to allow the process to unfold as Dad is funded by the another county council & we can’t do anything about getting him moved we have been told by safeguarding until next week after the safeguarding team meet with the Dr we have changed to.

    I hadn’t wanted to move Dad as that would be distressing for him but yesterday have asked safeguarding & the funding council to consider this in Dads best interests - as it is obvious that the care home are unwilling to provide the care Dad so desperately needs.

    At least other agencies are now experiencing what we are experiencing - so progress should be made soon in making him more comfortable.

    Thank you for posting - your words bring me comfort & hope that soon there will be a resolution. I am so appreciative of that.
    X
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,709
    I can’t tell you how much the support helps in facing each days challenges - today I’m off on a 6hour round trip - 250 miles plus on my own in the work van to visit Mum & the handover from one team to another.
    It’s been a fight to get the appropriate help for Mum, but a wonderful CMHT & community nursing team along with A SW have meant care is in place, pain management is in place &Mums future care plan is ready & actionable.

    so I know how it should & can be done; which makes it sadder that the care home Dads in have backed themselves into a corner like this. No one is perfect , no home is perfect but to not be able to say ok we made mistakes how can we address these issues just beggars belief!


    Being able to vent on TP means I can focus myself & not feel as if I’m drowning while doggy paddling to keep my head above this all. Thank you for your replies & support - it means so much
    X
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,709
    Thank you @AliceA I do regret not being able to look after Dad in my home or his own; but circumstances & experiences of respite care looking after him meant I now realise that Dad reached the point of needing 24 hour care & I did the right thing for his care needs at that moment in time given the circumstances.
    I’m trying to be kinder to myself, I’m flawed & by admitting to those flaws & how they affect me I am hoping that my honesty will help me move through this awful experience without blaming myself all the time for situations out & beyond my control.
    One thing that my personal experience of dementia has taught me is that there is no rationality to this disease; & at times there is no rationality to your response to this disease
    so I’m trying to be kinder to myself & come to terms with I can’t make everything alright, I can only do my best & sadly sometimes your best just isn’t good enough - not because you have failed but because the system is flawed.

    at least I know I have tried every avenue & at that moment in time done my best

    Thank you for your lovely reply , it means so much to have the support from everyone in TP.
    it also reassured me that I am not going mad & that the lack of care Dads receiving isn’t normal or acceptable - after a while you do begin to doubt yourself ..........
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,472
    You have hit the nail on the head, like trying to fill a pillowcase full of holes with feathers. We have such a difficult job. You are making a tremendous effort, xxx
     
  8. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    412
    Female
    Doing your best is always good enough @DesperateofDevon.
    Can see you have been part of the dementia wide awake club, do you remember when you last had a good night's sleep?
    Twas in the olden days for me, before mum moved in with us
    Have a safe journey and lovely day with your mum. Having one PWD is hard, you are coping with two PWD, no wonder you are exhausted - thinking of you.
    XX
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,709
    the dementia wide awake club - that made me smile...... how apt & fitting.

    I keep saying I am full of admiration of those who live & care full time for their PWD, we keep trying our best ....
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,709
    Ok ... I’m awake ..... but don't want to get up!
    I’ve been on TP - a delaying tactic if I’m honest as I know that I’m going to go into the care home & Dad is going to be slumped in a chair or at a table with a plate of untouched food infront of him. The staff are in two obvious camps - management & non management & im struggling not to explode with frustration at the whole ridiculousness of this situation!

    I’m the one going to be in danger of bedsores soon! My bed has become my go to retreat when it all gets too much!!

    I am exhausted & in pain after yesterday’s marathon trek to Mums- care package handed over to CMHT & the dawning realisation that the palliative care part is back to mums GP to organise!! OMG!!! Really .... REALLY!!
    Fortunately the lovely community nurse says I can contact her for advice.... ( she waded in last timeline my own fairy godmother in navy blue!) so I’m back to emailing & liasing for Mum again !!

    But at least the CMHT have a clear handover plan & Mums wish to stay at home is well documented & will be supported by them!

    As well as the clarity that the GP is about as much use as a chocolate teapot!

    why is life so complicated ....

    So it’s back to Mums GP & the S/W as it’s felt that Mum qualifies for CHC or FNC funding..... oh well might as well I am trying to get that for Dad so why not do both at once!!!!!!!!!!!!!!!!

    really have a bad case of tourrettes in my head ( I’m sure the moderators will be thrilled it’s not made it to the forum post!)

    just as I feel snowed under yet more stuff to deal with

    social care-
    Mental health care -
    Medical care -

    Dementia ticks all these boxes - why oh why isn’t this dealt with by just one team? One co- ordinator? It’s a terminal illness.... if you have cancer & a terminal diagnosis you don’t have to go through this experience it’s a smoother transition throughout your care.

    why oh WHY is this so complicated & fails those who need the help?

    Anyone.....?
     
  11. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,441
    East of England
    Just a word of comfort, probably as much use as a hole in the head, but heartfelt nevertheless. Your experience illustrates perfectly the horrors which can occur around caring for our loved ones either in or out of care.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,716
    Female
    South coast
    Im so sorry to read the latest (non) developments @DesperateofDevon
    I do hope something can be sorted out quickly
    xxx
     
  13. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    407
    Bedford
    So sorry to hear what you are having to go through to have your Dad looked after properly. To have to fight like this is terrible to hear. Thoughts with you
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,709
    So my lovelies it’s another day - I’m going to make my husband happy today & go out on the bikes for a ride! I haven’t ridden a bike for over 10 years plus ......

    ....... my daughter & I used to go out on the bikes with the small ( not so ) fat dog That day she decided that the return journey didn’t involve exercise & ended up in my back pack enjoying the scenery with the wind in her ears. I’ve not ridden a bike since - for a small dog her bones are the equivalent of lead!!!! The thought of a bike saddle brings tears to my eyes!!

    so my lovely TP’ers wish me luck - it’s going to be a much shorter ride than hubby hopes for but it will make him happier
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,441
    East of England
    Definitely good luck! Keeping reasonably fit is not easy. Today I got up earlier and have walked about 5 kms and feel very good. My legs have finally adapted to the new lifts I had fitted on my respite break and I am walking so much easier. He is still in bed and likely to be for a while yet. I am thinking of you pedalling away, the wind in your hair and the sun (I hope) on your face.
     
  16. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    412
    Female
    All the best for your bike ride, I hadn't ridden my bike for years in, dug it out of the shed last summer and forgot to take into account how rubbish my balance is these days, fell off, and that put paid to my cycling career (unless I can find stabilisers!) - actually the bike went to the tip so biking really is over for me.

    Like @Grahamstown, OH and I get our exercise these days before mum wakes, so we are generally in our local pool by 6.30, home by 7.30 ready for breakfast - mind you, we all go to bed early.

    @DesperateofDevon don't forget the 'ointment' for those sore places (that shall remain unnamed) and a cushion with a hole in may be of comfort!
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,709
    Sunday the bike ride didn’t happen- but the dog got walked! visited Dad & once he had bed rest after lunch a glimmer of humour; lovely.

    Got him to eat ice cream & clotted cream, he wouldn’t touch his roast dinner apparently. As he has problems chewing I’m not surprised.

    The slightly swollen lower lip again?
    Is that dehydration??

    worked Monday & feel exhausted by everything again- total weariness to the bone!

    Tuesday - today started work earlier, part of my cunning plan. Care home rang - DR called out as Dads hand is swollen again.

    so off I go ( good job I started work early!) to find Dad slumped with his head almost touching his knees sat in the lounge area & a biscuit on the floor by him & the other one in two halves infront of him with a protein drink hardly touched in a easy cup ( two handles& sloping)

    can’t get him to lift his head up, but he says something I can’t understand as his mouth is down on his chest & he’s bent double.

    so food is served & Dads not raising his head , it means lunch comes & goes & no food passes his lips! But apparently he’s eating well & is gaining weight? so that’s 4 kg in 3 days!! Really!! I think not.


    so a meeting is being held next week & I am getting the impression that the ranks are closing.
     
  18. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    412
    Female
    So sorry the bike ride was cancelled, it would have been a real tonic for your spirits.
    The way that your dad is being looked after for seems almost inhumane, you must be in despair.
     
  19. TNJJ

    TNJJ Registered User

    May 7, 2019
    675
    Female
    cornwall
     
  20. TNJJ

    TNJJ Registered User

    May 7, 2019
    675
    Female
    cornwall
    I hope they are not!
    If he has a swollen hand it is most likely due to being in that position for a long time.

    I’m surprised that your dad is still in a chair .He would be so much more comfortable in a hospital bed or a recliner.

    I hope this meeting brings a lot more results especially as Safeguarding are involved.
    Seems the home is run by Numptys(polite version)!!!
    ((Hugs )))
     

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