I need to rant

Discussion in 'End of life care' started by clareglen, Apr 16, 2015.

  1. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    Mum in hospital on end of life care. Palliative Care phoned me today to see where I wanted her to be. I said doc told me on Fri it would be the hospital or hospice. She said they need the beds in the hospital & although it's not my problem could I see if her Care Home would take her back. I said I didn't think she'd survive the journey. I rang care home they said they couldn't take her as they had another person on end of life care & it would be too much for them (lovely small care home). They will pack her belongings & stop charging me. Fair enough. Palliative Care phoned me back, our hospice (charity, only 12 beds) have a long list of referrals & they look through them early morning every day but normally only take people where pain management is difficult & if mum is stable & lasts longer than 2 weeks the hospice will likely want her moved back out again. Not a good option then. When I was at hospital earlier first a nurse, then ward manager, then junior doctor came to tell me she couldn't stay in the hospital as they are acute beds. The woman is dying how acute do you have to be! They said they were looking for a nursing home place for her. I said no-one had told me that & it would have to be NHS Continuing Healthcare Funded (so that'll take them a while to sort although Palliative Care said they'd fast track it) & there are not many nursing homes here & some have bad reputation/failed CQC checks so there are a few I won't let her go to. Since when did dying people not be allowed to stay in hospital?! The thing is mum looked better today. Had her eyes open & was communicating by blinking & squeezing my hand. I think it's the final rally. I hope so just so she can be out of her misery. It's added stress all this carry on.
     
  2. Going to the hospice would buy you a little time and the staff may be more supportive and flexible than the hospital in supporting you to find a further placement for her if she remains stable. Also, her own care home may be in a position to take her again.

    As there will be CHC funding this _may_ include literally 24 hour round the clock 1:1 care at home if you might consider having her in a hospital bed in your home for the short term. It can be a great option if you have good local services...hospital is no place for end of life care.

    Hang in there. :)

    With warmest wishes,

    Daze
     
  3. mackie

    mackie Registered User

    Feb 9, 2015
    29
    What an upsetting time for you. I was in the same situation with Mum last week as the hospital wanted the bed. They told me she had 8 weeks max and that it would be better to move her to a nursing home. We moved her on the Thursday and she died on the Friday. I have been constantly wondering whether the move was too much even though I did not want her to stay in hospital as it was getting depressing after 9 weeks. I don't know what to advise but if you believe that she is too weak to be moved then stand your ground. I'm sure whatever you decide to do you will have your mum's best interests at heart. Good luck and thinking of you.
     
  4. Roses40

    Roses40 Registered User

    Jan 25, 2015
    473
    manchester
    Clareglen, I couldn't pass by your rant. I wish there was something we could do to stop this madness. My thoughts are with you, love Rose x
     
  5. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    As the daughter of a dying patient, I think you're being treated abominably.

    I can understand why it's this way. The hospital staff are under acute pressure and must be deeply upset by having to turn away patients because they have no vacant beds to offer them. However, neither you nor your Mum caused the underlying problem (you're not in charge of the NHS). You shouldn't be penalised for politicians' and hospital managers' decisions.

    I'd suggest you tell the hospital in writing you want an advocacy service for yourself and your Mum as you don't want to waste any of the precious time you have with your dying Mum. Suggest the hospital approach the PALS team to take on this role; and /or the hospital make contact with one of the community mental health services advocates. Also cc your MP on the matter. It'll take the hospital time to sort this all out (enough time to make the request irrelevant perhaps) and the threat of the MP's involvement (and perhaps the local press's) may make them back off...

    I get the impression your Mum's consultant hasn't given any informed estimate of how long she's likely to live (sorry to be so brutal)? It's not reasonable to move your Mum unless this issue has been considered and discussed with you. Another topic for the advocate to deal with ....

    You feel your Mum's wellbeing would be significantly affected if she was moved (anywhere). Your advocate should insist on a medical appraisal of how being moved would be likely to affect your mother's immediate wellbeing (the appraisal to be carried out by an appropriately qualified medic independent of the hospital). Again, organising the appraisal will take time. The advocate should investigate the quality of the transfer service - locally there've been horror stories of vulnerable patients being left hanging round for hours waiting for their ambulance.

    If your Mum is safe to be moved, it's the hospital's responsibility (not yours) to find her somewhere to which she can be safely discharged - ie somewhere with adequate nursing care and specialised equipment for a dying patient with dementia, within a distance close enough to the hospital to avoid your Mum being tired by the journey and close enough to key family and friends for them to support her in the days or weeks to come.

    I'd like to express my heartfelt sympathy for the plight you and your Mum are in.
     
  6. Jessbow

    Jessbow Registered User

    My mum was in a similar position this time last year.

    I looked and looked and knew time was of the essence. in the end, she was placed- not in a place that I would have chosen but....she was just too far from me.

    The journey was tedius, and I did it daily

    looking back, i'd do it all again, for her to die in the comfort that she did, with carers that really cared about us and her.

    we could have been in the corner of aa six bedded bay in the local hospital, as it was she was in a beautifully decorated room, clean and fresh, with the sunshine and breeze coming in from the garden, as I held her hand in those last hours I could smell the roses.

    Think for how long yu might have to make perhaps a longer/more difficult journey.
    consider the people who are actually 'on the job' and if they seem kind I'd be inclined to go for a place wherever it is, out of hospital.

    I never ever wanted mum to go into care, but her passing was so well handled both for her nd for us, as I said, given the choice i'd do it again.
     
  7. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    I would be happy for the hospice to have her, but a bit unsure if they have to move her again. Residential home won't have her back even with Palliative Care putting extra services in probably because they know they'll be landed with it without real help. I thought about at home but I'd have to move a sofa out to get a proper bed in & I'd have to sleep on the other one to watch over her & my husband said no because of the strain involved & me having cancer last year. She has been in hospital over 5 weeks has not eaten in that time nor can swallow nor speak & slept the whole time except for the odd moment with her eyes open. Today was remarkable, hence why I think it was the final rally. Our Palliative services in own home are not good. My friend works for out of hours doctor service & has been distressed at people not having enough meds & pain killers to last them out of hours, not getting the care, hospice at home which is a charity not having enough staff to make visits, pads & turning not being done & her having to see to all these things & having to walk out & put door key in box knowing that the person is being left alone for 8 hours unable to move or get a drink if they want one. So although I know I wouldn't leave mum I wouldn't want to take the chance of not having pain relief for her whereas in hospital they give her a shot of morphine if she needs it or suck out the phlegm from her throat when she needs it.
     
  8. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    Wow thank you all for your kind comments.

    AlsoConfused;1087891 wow some good things here. I've emailed the social worker I had before she went into a home 6 months ago to see if he can support me again. The MP thing is out as there is no parliament and no MPs at the moment. But I will look into the PALS thing. Many thanks. Palliative Care asked me if I was a professional when I mentioned NHS Continuing Healthcare Funding. I said no, just an informed amateur with everything I've had to do. They should come on here. There's an army of us :D
     
  9. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    Technically you're probably right BUT the MP in post surely can act for you informally AND you'd be emailing the main challenger with the same info! I think the key point is to put the frighteners on.

    It strikes me that the hospital people you've mentioned are relatively junior staff (doing their best for all patients but ...). They may not be aware of the safe discharge rules - which are likely to prevent some of the things they want to have happen. What has your Mum's consultant said? He / she could be an ally.
     
  10. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    Only occasionally see him floating around on a Monday. The speed they work at can't see her being discharged soon & they can find a place/bed for her. I'm not chasing round anymore. The Palliative Care woman said reading mum's notes she probably wouldn't survive longer that 2 weeks (re the hospice), but you never know.
     
  11. starryuk

    starryuk Registered User

    Nov 8, 2012
    1,299
    Clareglen, I am shocked/ stunned and so sorry they are treating you and your mum like this. My mum was on end of life care in hospital this time last year.

    Her doctor was against mum being moved at that stage.
    a) he didn't want any patient of his dying in an ambulance
    b) he wasn't going to let her go anyway without a thorough assessment that the staff at the CH knew how to care properly for mum.
    c) He was not convinced that the district nurse could always be there as soon as mum needed pain relief.
    d) he pointed out that the pain relief meds were ready and waiting in the ward for mum.
    e) finally he said, 'contrary to what you might read, we don't throw people out here. They stay for as long as they need to.'

    I hope you find that your mum's consultant has some professional integrity too, and will do whatever is best for her. I think PALS would speak to him/her for you.

    Go straight to the PALS office and throw a major wobbler. At least, that's what I would do.
     
  12. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    Gonna do it now, thank you.
     
  13. Perdita

    Perdita Registered User

    Jun 22, 2009
    219
    Suffolk, Uk
    Good luck to you Clareglen, I can't believe you're having to go through all this :(
     
  14. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    Hospice have agreed to take her on Monday, if she's still with us. I'm sure it will be better there than hospital. However, I have been told if she is stable after 2 wks there they will want her moved elsewhere. Moved from pillar to post when you're dying is not good.
     
  15. Sorry it's obviously been an awful day having to get this organised when what's most important is that you spend as much quiet, calm time with your Mum as you'd like to.

    Good to hear that something has been arranged for her now though. The hospice will only talk about moving her on if she is clearly very stable and they won't be pressuring you in the way that you felt today. They really wouldn't have agreed to take her at all unless they thought that she really is close to the end of life; certainly no one should be suggesting moving on if there is a real risk that she wouldn't survive the journey.

    The hospice staff will be able to give your Mum and you all much more time and support than any other inpatient setting. I'm sure you'll be glad to be there.

    With warmest wishes,

    Daze
     
  16. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    Mum settled into hospice today. It is lovely. Lovely big en suite room overlooking a new garden with patio doors & sofa bed & lazy boy chair, TV & lovely staff with proper stripey uniforms/dresses with belts with ornate metal buckles & badges on their collars like from years ago. Totally different from hospital. I hope she doesn't have to move out. Average length of stay is 12 days though.
     
  17. starryuk

    starryuk Registered User

    Nov 8, 2012
    1,299
    Clareglen,

    I am so pleased to read your news. The room sounds just lovely for your mum.
    What a relief to have things sorted for her.

    Now you can spend as much time as you want with your mum, in some kind of peace.
     
  18. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    Sending you hugs.
     

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