1. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    I believe in treating others as you would like to be treated. I really appreciate your posting- thank you. You have been a support from my first posting. I’m so grateful to my TP family for the time, kind thoughts & comments along with the stern words & amazing advice that now means I am able to be the person my parents need.

    So I am “sallying forth” each day determined to bring “sunshine & comfort”
    So far so good! I’m determined to be the best version I can be of me. It’s not always easy but it brings its own contentment with it, if you get what I mean.

    Love & (((Hugs ))))
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    So CHC Funding......
    What can I say peeps...... that’s printable!!!
    Really it’s about making life as difficult as possible to access care at a time when it’s needed, the convoluted systems seem to keep oodles of managers & assessors in jobs ......
    yet the funds aren’t available to help those that need it!
    What a rubbish system!

    Let’s pick on society’s most vulnerable & degrade them further because they really need that don’t they...... rant over!

    No system is perfect, but this isn’t a generation of snowflakes we are talking about here, this is the generation who lived through the last world war, who experienced extreme deprivation & helped build the nation back up paying their taxes!
    Maybe the rants not over!!

    Arrrghh!
    It’s just so frustrating that I can’t get Dad the extra care he requires, so have to fill in the need myself. Otherwise the home don’t have the staff allocated & Dads got up & sat in the sitting room bent double asleep!!

    I have been to Dads GP practice & requested phonecalls... unbelievably the mobile phone reception is so poor that when the doctor eventually got hold of me the signal dipped out & that was the end of that......!!!!!
    Unfortunate doesn’t do it justice!

    Dad can’t swallow his pills, can’t eat solids, struggles swallowing water, he’s in kidney failure, ice cold all the time & because I can’t get CHC funding activated the care home staff to monitor him have to have him where they can see him! Aaarrrrrghhh!

    This system is so broken it breaks those caring for PWD, my own health is declining & I need to look after myself a little! So the NHS is costing themselves more by not helping out in the beginning.

    Really don’t like the thought of others having to go through this malarkey!

    Still another day ... another opportunity to raise my blood pressure to hospital admission levels yet again!

    Am tempted just to say ok take me into hospital... prescription - oh no tablets required just someone to do their job with compassion & a sense of duty not making sure that the books add up.
    The NHS shouldn’t be run as franchised business! The clue is in the name
    National Health Service

    Ahhhhh..... vent over!
     
  3. TNJJ

    TNJJ Registered User

    May 7, 2019
    601
    Female
    cornwall
    I’m so sorry!
    I have heard it is difficult but that is unbelievable in your case!

    I know ((hugs)) aren’t always wanted but that is all I can offer at this time.Plus my support..
     
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    I know no matter how awful I feel that I need to get on the case for my Dad.; but I’m all out of energy I feel exhausted, I just want to sleep. My M.E is kicking off big time & the DVT is making itself known again!

    Oh blast! ( only thing printable!!!!) what a pickle of a situation!

    It’s ridiculousness is becoming petty!
    Staff needing permission to crush drugs!
    I know not all drugs can be crushed but for the love of humanity someone somewhere use some common sense!

    ive really had enough of this. District nurse needs to asses wether a hospital bed is required in the care home - Dad was in a room with one now he isn’t!!!

    I don’t care he needs it a banana pillow doesn’t help lift him it takes two people now!!
    Holy smoke the blood pressures going to be off the scale at this rate!
     
  5. Starting on a journey

    Starting on a journey Registered User

    Jul 9, 2019
    45
    No point telling you to relax and stay calm is there? It's an everyday fight with an unweidly bloated organisation which seems to have forgotten it's primary function.
    However when you do get a minute take it, look out of a window see the sky, the birds, the trees, breathe and relax. Imagine the world as a palette of colour which you can paint, collage or even patchwork in your mind. Works for me!!
     
  6. Starting on a journey

    Starting on a journey Registered User

    Jul 9, 2019
    45
    No point telling you to relax and stay calm is there? It's an everyday fight with an unweidly bloated organisation which seems to have forgotten it's primary function.
    However when you do get a minute take it, look out of a window see the sky, the birds, the trees, breathe and relax. Imagine the world as a palette of colour which you can paint, collage or even patchwork in your mind. Works for me!!
     
  7. canary

    canary Registered User

    Feb 25, 2014
    10,698
    Female
    South coast
    I really think that you need to talk to the doctor. If mobile reception is poor, then arrange a face to face meeting (I would recommend this anyway) to talk about your dads prognosis and what they are expecting for the future.
    Has anyone talked about palliative care or keeping him "comfortable"?
     
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    Just when you think the situation can’t get anymore ridiculous........ it does!

    So warning - I am going to vent .... but it does end on a somewhat positive note(ish)

    Went to collect Aged Mother from respite home, to visit Dad in his care home. Had told staff & Mother 10am, she’s a late riser if left to her own devices. Mother sat up in bed like the Queen Mum happy as Larry!
    Result!!
    Lovely staff said go have coffee & pastries
    downstairs & we will bring her down to you, showered & smartly dressed & escorted by a charming member of staff!
    All good so far.....

    Off we go to Dads care home..... get there to find Dad sat in a lounge with his head bent down towards his knees sleeping in an upright chair. Okay.... wake him up & ask senior staff member if Dad could be helped into his room as Mum & Dad haven’t seen each other since May. ( not my choice Mum to I’ll to travel & has been in hospital!)
    The stale stench in the lounge came with Dad, umm maybe he’s farting? So he gets seated & my Mum wants to sit & cuddle him on the bed.
    Go back get senior staff member can you help Dad onto the bed to sit next to myMum please?
    So she gets a dining chair so mum can sit next to Dad, ok.... I put a thick throw onto it to make it comfortable for Mum.

    The stench grows stronger & we say nothing just open the window further & get the reefs from the diffuser & turn them upside down.
    Dads loo doesn’t flush so maybe that’s it?

    Poor Dad says to me .. I think I need the toilet!! He’s doubly incontinent, I have never seen my Dad naked & he wouldn’t want me to tend to his needs, my Aged mother wouldn’t allow that anyway!

    So off I go & bless same senior member of staff- she must hate the sight of me takes Dad to the non flushing en-suite loo!!

    Obviously it’s a big job ( pardon the pun) almost 20 minutes later Dad & carer emerge!
    With evidence !!! I watch along with everyone else the loo being fiddled with ( no flush !) & thank this member of staff for the assistance.

    So Mum says why hasn’t he shaved & apparently he doesn’t want to is the reply.
    Okay....

    Mum & Dad hold hands & he just sags headfirst in the chair eyes closed. So I adjust a cushion & him to a more comfortable position, the smell is still overwhelming. Window open as wide as possible & the door wedged opened.

    A community nurse walks by & I think ah-ha! I will ask her about the hospital bed as discussed on Monday by the GP. Apparently it’s down to the home matron, not the district nurse as I was told on Wednesday!
    So what about CHC funding, as Dad was assessed on Monday as needing 2 carers to get him in & out of bed etc?
    Again this should be instigated by the home matron!

    So who authorises tablets to be crushed when you can’t swallow properly.?.....
    who puts in the care plan that bed rest required as agreed with GP on Monday as degenerative spine & shoulder issues not helped by falling asleep in chair with head almost touching knees?......

    So let’s go back to Tuesday & I’m unable to get in to see Dad as I spend the day trying to get respite care for Mum- (having been told on Monday with my daughter present that Dads kidneys are failing as shown in the bloods taken on Monday by district nurse & the Dr who came out later because of those results!! ) so I ring the home & speak to the matron asking how Dad is & explaining Monday’s diagnosis & his needs.
    I’m a little confused as matron told me that Dad didn’t need a hospital bed etc & I asked her to read Dads notes.... then I’m told that the room he’s been moved to with the non- flushing toilet isn’t big enough without moving furniture around to have a hospital bed in.
    I ask if they are happy to then provide 2 carers to assist if that’s the case, & wasn’t informed this would be an issue!

    Wednesday Dads in a wheelchair at dining table with full plate of food infront of him. ( he’s been downstairs to have his hair cut & is showered & shaved & smart ( ex fleet air arm so was very precise on dress etc) His hands are in his lap, juice untouched, so I try & get him to eat mashed potatoes- same problem as Sunday Monday etc, difficulty chewing & swallowing reflex very poor. Pudding plate sits infront & a carer encourages him to eat some. I really don’t want to be seen as taking over, after all these are the professionals... but I offer to feed him & that help is accepted
    So yet again it’s feeding him pudding , soft mousse & lots of encouragement to get him to swallow. He can’t work out how to feed himself, yet I’m assured he’s eating well.....
    Then he astounds me by picking up the cup of tea & sipping it.... so obviously this is fluctuating as previously stated by other carers & also witnessed by myself.

    His head goes down onto his chest & I ask him if he would like a sleep- yes
    So off to his room & I try & put him into bed, his cries of pain mean I stop straight away &get help. 2 carers & it’s done quickly transfer from wheelchair to bed.

    So teatime on Wednesday he can’t swallow his tablets again, I ask if they can be crushed, no you need DRs authorisation to do that. Ok I will get that sorted, along with request for District nurse to authorise bed - as staff tell me it’s needed & they are struggling. Also had chat with a lovely senior member of staff who tells me that pain meds in patch forms will be used tonight, & Dad has reached CHC level, & I need to notify the GP. Same member of staff states it’s not in Dads best interests to keep giving him certain meds as his taste buds no longer registers savoury foods & he refused them & he only eats sweet puddings therefore the tablets are pointless.

    I agree with Dads recent diagnosis that if he wants to mainline ice cream & mousse
    that’s fine with me & we go over Dads TEP
    form & his wishes.

    Thursday travel all day to get Aged mother up for respite care, so she can see Dad.

    So Friday not the best visit to Dad, but the community nurse says the district nurse is in the building & would I explain to her our conversation.
    So I do ... oh we will do our paperwork & pop up to speak to you before we go!
    Okay...
    upshot mother decides at 12:10 she wants to leave... so pop down & tell district nurse & community nurse that I will catch up with them again- oh no they say we will come up!
    So into Dads still unpleasantly fragrant room is Mum, Dad, community nurse, district nurse, senior member of staff, me & my support worker ( I can’t manage mother on my own with my own disabilities!)

    This senior member of staff told the district nurses I’m a liar, my Dad can walk, feed himself alone, doesn’t have swallowing issues, can use the toilet ( um the smell states otherwise! )& I don’t know what I’m talking about.

    I politely say I’m sorry & list the above issues, so thinking we could discuss care etc. No I’m a liar!

    She believably rattles off what my Dad does & did on Wednesday & says I don’t know what I’m talking about - she will get a plate of food & Dad will eat it!
    Good idea I say...
    so district nurses thank the senior member of staff - after asking to see non existent SALT report or O/T report.

    I excuse myself - in tears & find a quiet corner to sob in. Thankfully an experienced senior miner of staff saw me & told me to get back in their & fight for what your Dad needs!

    I went back in & said I’m not lying & please could they speak to this member of staff.
    So folks this lovely person has spoken out & stated that Dads unable to walk, feed himself, needs the hospital bed he previously had in his old room & requires a soft diet & should have been on one when he went into the care home! Also needs extra care & not be left in a chair !!
    This same person has been assaulted by Dad & spoke to me about it & told me of other instances!

    Not the best of days!!

    So sad for Mum & Dad to witness this.
    I now feel like I am unwelcome in the care home - because I tried to be supportive of staff & asked what I can do to help?

    Thank goodness my support worker was with me on Wednesday & today as she was able to tell the district nurses that I was telling the truth- when I left the room in tears!

    district nurse will investigate & get back to me next week!

    Life isn’t meant to be like this...... & sadly just a few individuals can make it totally unpleasant
    I now know why my Dad had previously taken against this senior member of staff but had dismissed it as dementia talking; but the recent departure of good staff since this seniors appointment have me wondering!

    I’m not a happy bunny!
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    Ah Dads GP on holiday!!!! But things are progressing- in a round about way!
     
  10. TNJJ

    TNJJ Registered User

    May 7, 2019
    601
    Female
    cornwall
    I'm not surprised you are not happy! Neither would I be!
    If he already had a Nursing bed he will never go back to an ordinary bed.For heaven's sake !
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,698
    Female
    South coast
    Im sorry you had such a bad day. I dont suppose the fact that you are not feeling well helps either
    Just wanted to give you a heads up about CHC - firstly, things like needing 2 people to lift, problems with swallowing etc are considered social needs, rather than medical needs and wont count.
    Secondly, CHC (and Funded Nursing Care - a sort of part CHC payment) are not paid to someone in a care home. Im assuming that your dad is in a care home rather than a nursing home because of the way you mention community nurses and DNs. If you get CHC or FNC then your dad will have to move to a Nursing Home.
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    Even if that would cause extra distress & confusion; he’s been there almost 12 months
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    This is all to convoluted, it’s a dementia specialist unit that’s meant to be able to cope until the end!
    Brochure website etc....
    why would staff ask me to seek CHC funding if they can’t help him?
    Too cruel...
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,698
    Female
    South coast
    Is this a question? ie Even if this would cause him extra distress? Im afraid the answer is yes. CHC is intended to pay for nursing care 24/7, so if there isnt a nurse on site available 24/7, then the powers that be consider that they are paying for care that isnt happening. NB - things that carers can do, like lifting, hoisting, feeding, personal care etc, do not count towards CHC.
    My mum lived in a care home - a dedicated dementia unit - which did indeed look after her right up to the end. She died from Alzheimers in that care home and never became eligible for CHC.
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    Thank you,I have been fed misinformation & really appreciate this.
    So who funds the extra care required to lift Dad etc.
    Ps
    Nursing staff on site 24/7
     
  16. TNJJ

    TNJJ Registered User

    May 7, 2019
    601
    Female
    cornwall
    It is usually the carers .Nursing staff rarely do any lifting etc.

    You might have to apply for FNC .
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,698
    Female
    South coast
    Ah, I didnt realise that. In that case he shouldnt need moving if he gets CHC or FNC. I would give it a try and see what happens.

    TBH I was concerned that someone was trying to move you on somewhere else, but it seems that is not the case.
     
  18. witts1973

    witts1973 Registered User

    Jun 20, 2018
    715
    Male
    Leamington Spa
    #38 witts1973, Sep 27, 2019
    Last edited: Sep 27, 2019
    That was the Farm,I loved that tune,I left school in 89,I had a great time in the 90's,the parts that I can remember anyway
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    Yay thank you!
    I was usually the nominated driver so have vivid recollections of the era & shudder at the fashions! Let alone the hairstyles!!!!
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,578
    Thank you @canary & @TNJJ
    Oops premature posting!
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.