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So is this it...?

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

  1. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    597
    Female
    I'm wearing bronze earrings for your tummy mummy @DesperateofDevon , never heard that phrase but it's firmly in my memory bank, utterly charming and you are twice as lucky to have two wonderful mums.
    xx
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    Thank you
    Your post brought tears & smiles today, I am so touched by the kindness.
    Feeling loved.
    my Mum was called Patricia- Florence & the machine have a poignant song Patricia which sums up my tummy mummy.

    xx
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    Arrrghhh!!!! apologies ..... Vent alert!!!

    so Dads social worker has cancelled his care placement assessment tomorrow as she has the opportunity to go on a last minute course !!!!!!

    I get an email!!

    REALLY!!!

    Meanwhile ..... no tilting chair in the home! Or replies to my emails !! So much for safeguarding!!! This system is a joke, the only people being safeguarded are the so called professionals!!!


    We have waited over two weeks for this assessment- normally done within 48 hours apparently if safeguarding issues are raised!!

    meanwhile Dad is given all food & drink in his profiling bed. So bless him if he wants company he is bent over double staring at his knees as the home do not have any provision for any seating needs! Despite the OT contacting the safeguarding team to raise this issue!

    Documentation that the home should provide it has been sent to the care home!
    Nothing!

    Now poor Dad is bumped down the list again by the social worker ! So it will be a month since the safeguarding meeting before Dads care needs are assessed!

    surely this isn’t acceptable!
    Duty of care

    This whole system is a joke!
     
  4. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    156
    Female
    oh my days i can hear your frustrations and dismay in your words!
    It is so unfair ...the whole system is wrong.......do they really think just doing the paperwork and lip service is acceptable!
    So sorry for your poor Dad ..and you and your family having to go through this.
    This 'care' home are paid to look after his best interest and make sure he is cared for!
    what a joke......not funny!
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    To be honest I just don’t have the fight left in me anymore! I can’t bear to seeDad being dismissed by SW etc & postponements continually happening.

    I am documenting & emailing all issues so have a paper trail!

    The old saying goes if you give them enough rope they will hang themselves!

    Can’t believe that the so called professionals think this is acceptable!

    This whole safeguarding issue is a joke! Tick boxes & lip service.
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    If we took out a loan & bought Dad this chair it would solve the issues. £2500 ! I just don’t have the money!

    If I use Dads money he goes below the lowest threshold, & as he is council funded that makes its own problems.

    if I use Mums money she drops below the threshold & Mum has said she won’t buy Dad the chair as it should be provided.

    She’s right it should!

    But meanwhile Das isolated in his room for meal times & refreshments. Or gazing at his knees bent double in the sitting room!


    Hopefully I will have good sales for the test of the month & will be able to buy a second hand chair .

    Can’t believe that the home don’t have any alternative seating arrangements - they are palliative care , end of life, dementia gold standard accredited Care Home with a CQC rating of outstanding!

    I’d laugh if it wasn’t just so sad!
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    I have choices to make & im feeling selfish that I am putting myself first. I have the dreaded sore croaky throat, heavy chest that heralds my M.E kicking in & my immune system crashing!

    So I’m wrapping up & knuckling down to getting as much work done as possible. I have little energy & am really struggling - anymore emotional distress & stress will just tip me over the edge & end up with me being in bed 24/7!!
    I usually crash & burn as OH puts it after Christmas but this year I’m firing on burnt out reserves!


    I need to put my own health first now! That means not being there for My parents as much. I feel I do so little as it is.
    Guilt is a difficult issue;because whatever you do it isn’t ever going to be enough.

    so I’m going to be selfish & put me first!
     
  8. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    156
    Female
    its not selfish....its self-preservation we all have to do it to survive. Its a rough road we are traveling.
    slow down not melt down is better for everyone. otherwise looking after you is added to the mix too
    take care
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    You to my lovely xxxxx
     
  10. ladysuisei

    ladysuisei Registered User

    Nov 13, 2019
    18
     
  11. ladysuisei

    ladysuisei Registered User

    Nov 13, 2019
    18
    Hi there my lovely. My mother is at the same stage as your poor father. My situation is rather different, as mum is at home ( care packages etc ok) my father is her carer. Me and my sister support too. My problem is that my father is in denial as to how serious this is. He is not being particularly rational and it’s had a serious knock on affect to my own frail mental health ( I’ve got BPD at al ) I have a crisis appointment with my own cpn this afternoon, I just wanted to contibute to your heartbreaking post. I send you ❤️❤️ as I understand. This vile Alzheimer’s has destroyed our family and now my dad is pressurising me and my sister to agree to move into the house should something happen to him. This is an unbearable level of pressure- like you I am at breaking point. I am 55 and my mother was diagnosed 13 years ago. Both my sister and I have just lost the last 13 years, as we have been supporting my father from day 1 . We were never asked if we are ok despite the knowledge that neither me or sis are coping with the stress. My father has closed his mind to the fact that we are near the end. I am at breaking point and after I have been over with mum this morning, I intend speaking with my mental health support about a crisis plan for me. I feel like I need to escape and it’s horrible.
     
  12. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,466
    leicester
    Hello @ladysuisei and welcome to DTP
    I’m sorry to read that caring for your Mum and supporting your Father has caused you such difficulties I hope your appointment with your CPN helps.
    Now you have found the forum I hope you will continue to post for support it is a friendly forum
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    I am so sorry that you are in this situation. I am lucky in having Dad in CH & mum a distance away with carers - & I really appreciate that when I read other carers posts.

    it gets to a point where you don’t have a life - I can see that.
    Please take care of you first & foremost.

    My Mum said on Sunday “ you don’t really have a life do you?”

    that insight made me think about what is it that makes us do what we do as carers.

    I don’t have any answers but know now that self preservation has got to be a major part in my life now. I feel so unwell all the time & people keep telling me I look ill!!

    I hope you find resolution-soon.

    Take care & hijack away, it’s nice to have social interaction!
    x
     
  14. TNJJ

    TNJJ Registered User

    May 7, 2019
    787
    Female
    cornwall
    We all have to have self preservation or we go under.I think as an only child that is that seems to be at the four front!
    @DesperateofDevon
    Take some time out!
    None of us can do this without recharging..
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    I’m like a flat battery at the moment - but hoping to get my act together a bit more this weekend!
    Work on Friday & Saturday! Eeeek ! Better pull finger out if I want stock to sell! xx
     
  16. TNJJ

    TNJJ Registered User

    May 7, 2019
    787
    Female
    cornwall
    I know you are a crafter .
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,900
    D883BCC6-F6C1-42B9-8DEE-45C325FFF740.jpeg Vintage finds, upcycled items & local finds( including skip diving ) turned art & items for the home! Basically what other people throw away!!! Including rusty nails
     

    Attached Files:

  18. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    471
    Bedford
    I know you said you were like a flat battery but hopefully the crafting is enjoyable and will help reenergise you. I certainly like your creation above so all the best with the selling weekend
     
  19. TNJJ

    TNJJ Registered User

    May 7, 2019
    787
    Female
    cornwall
    Love that:)
     
  20. TNJJ

    TNJJ Registered User

    May 7, 2019
    787
    Female
    cornwall
    That is gorgeous! You are very clever.
     

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