1. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    After 5 years of having Mum (now 92, AD plus several other health issues) living with us, getting through several episodes when she seemed to be so weak from UTIs she couldn't possibly recover, but she did (with the magic of antibiotics), now the GP has said this time she won't.
    She has had a cold & cough - no chest infection, says she's not in pain but is refusing to eat & is barely drinking. She's just in sleeping in bed all the time. It was yesterday when the GP came & said palliative care only. No mention of any support or end of life care - no pain, so no need for pain killers, apparently. Call the GP again when she gets worse - but the decline is quite gradual, so when to call them?
    i'm feeling quite resentful - it's not how I imagined it would be. I've got used to feeling that we're largely on our own in this dementia boat as far as the health service is concerned, but I did expect some support at the end (if that's what it is - Mum's powers of recovery have amazed us before, but I think the GP is right to say, not this time). I even had to ask the GP if she'd be calling again.
    I'd like some advice on how long it might take - days, weeks, months? I know everyone is different, though, so it might not be possbile to say.
    Thoughts are whirling round my head, sorry if I'm incoherent.
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    So sorry to hear that you are having to cope with this. You can speak to your local hospice for any advice and if you feel it would be helpful then ask for a referral from your GP to the Hospice at home team who are very supportive (speak to the hospice you may not need GP referral). They work around the clock to give them a ring tomorrow or better still pop in and as to see one of the nurses. Ask what palliative care services are available in the community and how to access them FAST

    Tell your GP that you were expecting more support and that you are very worried and feel very much alone. If the GP said 'palliative care' then ask for a palliative care nurse - no one coming in to support you or mum doesn't count as 'care' palliative or otherwise. I think you are going to have to push this with the surgery.

    I do hope you will get some support xxxxxxxxxxxxxxxxxxx
     
  3. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Thank you, fizzie. I appreciate your speedy reply - TP's are so supportive.
     
  4. velocity

    velocity Registered User

    Feb 18, 2013
    174
    North Notts
    Just to say thinking of you at this difficult time xx
     
  5. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    I hope you have someone with you to see you through this terrible time. Please keep posting as we will all be here for you. Sending you a virtual hug and all the strength I can.
    Love quilty
     
  6. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Thank you xx
     
  7. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Thank you, Quilty. I will keep posting when I can.
    xx
     
  8. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    363
    Although there may be no pain, there may be confusion and terminal restlessness in the last hours- not something anyone can predict - and other symptoms. If your local hospice doesn't provide a proper palliative service for anything other than cancer (ours doesn't), the district nurses may well and I would be asking the GP to arrange for the senior nurse to visit you and talk through what is likely to happen and what they are going to do about it. There are drugs that can be given via injection and I'm not sure that calling an out of hours GP, who is likely to be inexperienced and very tired, is the answer if you need help.

    When my husband was dying at home, the GP came to visit him regularly in his last few weeks so that there didn't have to be an autopsy when he died - nine days rings a bell, but the law or practice may well have changed.

    I'm really sorry to bring this up, but sadly it's not always a matter of watching one's loved one drift gently into the good night. I hope it is for you; I wish you strength through this difficult time.
     
  9. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Going into a hospice hasn't been mentioned - I assume ours is just for cancer patients. A visit (at least one) by a district nurse was what I was hoping for, Beetroot. I don't know how often I should try to get her to drink. I will certainly be ringing the GP again on Monday, to ask for some advice. I agree that, unless it's an emergency situation, there's probably no point calling out the out of hours GP.
    Mum always said she was borderline with all her medical diagnoses throughhout her life - looks like she'll keep that up to the end - not quite bad enough to need a nurse.
     
  10. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    363
    You need a nurse visit now, as well as the GP. The district nurses will give you advice on how to care for Mum during the coming weeks or days. Good luck on Monday.
     
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    A number of hospices provide end of life care for patients other than cancer patients. I would still advise you to talk to them because even if they do not provide care they most certainly will hold the most useful knowledge on local end of life care - and they are incredibly helpful x District Nurses often do not have the best experience on end of life pain relief - the hospice will advice on the best palliative care team to contact regardless of the illness
     
  12. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Mum is much the same today - not eating, drinking small amounts when I offer it, but not aware enough to help herself to a drink. I checked on the local hospice website, they do take aptients with other illnesses apart from cancer, but no mention of dementia. I decided to wait & contact the GP again tomorrow to ask for another visit & some proper advice. Thank goodness for my supportive family - OH is a rock, kids (grown up) rallying round to visit & help out.
    I find myself wondering how things will be in the future, when Mum isn't here any more, then feeling guilty for wishing her away. Oh for a crystal ball.
     
  13. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    Please don't feel guilty. I'm sure many of us have felt the same when a loved one is in a pitiful state, with no quality of life. I know I did, seeing my poor mother in such a state. I know her former self would never have wanted me to feel bad - she would have been the first to wish that the end would not be long.
     
  14. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Well, it's been a strange few days. From daily expecting Mum to be slipping away, she's gradually got a little better and yesterday was able to tolerate a shower, ate a small amount & drank considerably more than she had for days. Then the Gp phoned to say the urine sample showed another UTI, so antibiotics prescribed. I'm now expecting that Mum might even manage to get up soon.
    I'm in a state of confusion - all weekend I had been thinking about her funeral arrangements & how life would be Afterwards - now I don't know what to think.
    Thank you to the TPers who responded to my posts. I'm sure I'll be back again at some point for more support.
     
  15. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    363
    What a roller coaster for you! One's mind does tend to race ahead with the what if's when this sort of thing happens. Good luck.
     
  16. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    latest news

    Sorry for the long silence - lots has happened and it never semed quite the right time to add to the story. Mum continued to refuse to eat & drink very little untill a week ago. In the early hours of last Saturday, she fell twice. I heard her over the monitor. As we couldn't safely lift her (and didn't know what damage she'd done), we called the ambulance. The first time (just after 1.00 am), the crew decided she hadn't broken anything & was safe to leave at home. The second time (just after 6.00 am), she complained of a headache so the crew that time decided she should go to A&E.
    The A&E doctor decided to admit her but it took till 4.00 pm to find her a bed. When they weighed her, she was only 34kg (I reckon she's lost a stone over the 2 weeks).
    Since then, she's had scans which revealed 2 mini strokes (but no knowing when). When I've visited she's been different every day - unresponsive, then delerious (seeing small children & animals & the three wise men on the ceiling), then back to "normal", sleepy and very quiet, asking where she is every few minutes.
    I've gone from expecting her to pass away any day to expecting her to recover to some extent. A complete rollercoaster. I'm now in the role of hospital visitor, with no control over what happens to her, after 5+ years of making all the decisions. It's very exhausting.
    Sorry for the long post, thank you to anyone who reads it. Not really expecting/needing a response, it's just good to reflect & write it down.
     
  17. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    So sorry you are going through all this, both you and your poor mum.
    Thinking of you.x
     
  18. canary

    canary Registered User

    Feb 25, 2014
    9,397
    Female
    South coast
    Im so sorry. Some people have amazing resilience.
    Mum has been in hospital with pneumonia this week and I thought we had reached the end of the road too, but she has bounced back. I dont know how some of them do it.
     
  19. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Thank you, Witzend. I'm now waiting for the pressure to start to bring her home. We won't be able to cope if she has to be watched round the clock to make sure she doesn't fall again.
     
  20. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Sorry to hear about your Mum, canary. Yes, the resilience of these elderly people is amazing. There are several on Mum's ward who seem equally tough.
     

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