Really struggling with visits by care home staff

Discussion in 'End of life care' started by minet48, Aug 21, 2019.

  1. minet48

    minet48 Registered User

    May 23, 2014
    36
    Would be so grateful for any advice please. Our lovely Mum has quite advanced dementia but has awareness a lot of the time. She has just started end of life care in the good care home where she has been for several years. We love her so much and are gutted and struggling ourselves, but understand why she is where she is and that it is for the best. The nursing and care are very good. We're grateful that the staff love her, but she is being visited by a stream of well meaning staff all through the day whenever they come off their shift or have a spare moment - in pairs, on their own, coming back several times in a day, coming in/trying to come in when Mum is getting religious visits or we are trying to calm her waiting for pain relief to set in, or having some precious moments together. Only one or two have the sensitivity to ask first before coming in and starting to hug her/kiss her/one even climbed onto her bed around me to kiss her all over her face while I was trying to talk with her. It's one thing that we don't feel free to have the time we'd like with her, but the worrying thing is that she is being told by some of them "keep fighting - we love you" and Don't give up - we love you" and "we miss you - get well soon" or they get emotional in front of her or tell us/each other how sad they are within earshot of her. The situation feels totally out of control. This evening she got totally exhausted and very restless/agitated after a day of this and several people being in and out of her room for a couple of hours without a break. She had to be given medication for agitation. The trouble is that they nearly all seem to be doing it. We understand that it's a shock for them as well as for us, and we don't want to upset anyone because they do a great job and we know they are attached to her, but we're worried that Mum isn't getting the peace she needs and deserves.
     
  2. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,374
    leicester
    I think you need to talk to the manager of the care home and explain that as a family you need some special time with Mum..
    I expect that they are not thinking about the family’s special time...
    Wishing you strength at this difficult time
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,245
    Female
    South coast
    Im so sorry to hear that you have reached this stage. (((((((((((((((((((hugs)))))))))))))))))))
    My mum passed away in her care home and we too had a little stream of staff coming in at the end of their shift to say goodbye to her, but they were very respectful and not intrusive.

    Yes, have a word with the manager
     
  4. minet48

    minet48 Registered User

    May 23, 2014
    36
    Thank you - I really appreciate your response. It is just so hard and heart breaking anyway. feels ridiculous to say it after ten years of this horrible suffering my poor mum has had, but it felt like the last straw that she couldn't even die in peace. Will definitely speak with manager.
     
  5. minet48

    minet48 Registered User

    May 23, 2014
    36
    THank you Canary. I'm very sorry to hear about your mum. It's really kind of you to reply. Feeling very distraught about it all but I know it's not just us. Two clergy visitors noticed it too. And we are "only" at the beginning of the end - end of life care formally beginning and no oral meds because she can't swallow any more. It's yet another hurdle which we didn't see coming on top of the shock (which it really shouldn't be after weeks of infection and unresponsiveness - and yet it is) of the end beginning. we just want it not to be so hard for mum. I know everyone goes through their own suffering with their loved ones and you will have - so sorry to moan. will speak with the manager. Thanks so much.
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,437
    Female
    Dundee
    I’m so sorry to read that your mum has reached this stage. It must be so distressing for you to have the staff act in this way, no matter how well meaning they are. I hope your talk with the manager goes well. Wishing you strength.
     
  7. AW1938

    AW1938 Registered User

    Feb 11, 2017
    41
    Hi, I am sorry to hear of your suffering. We are also at this stage and have been for nearly 3 weeks, mum on syringe driver and not eaten or drunk during this time. I expected her to last a couple of days but she is still here. The morphine is keeping her pain free and asleep, so we can't even speak to her now. It is so sad tithing we will never hear her voice again. We have the family of a resident visiting mum, its so difficult as they were very kind to her when she was wandering around the home. But I do feel this is now inappropriate. Mum looks so awful and I know she would not want anyone to see her. I also don't want to upset them.
     
  8. minet48

    minet48 Registered User

    May 23, 2014
    36
    Thank you Izzy. So far the visits have lessened and calmed down today so we are keeping an eye and will speak with the manager if things get out of hand again. Perhaps in all fairness they were terribly shocked and upset at Mum's deterioration and we don't want to exclude them - they have been and are caring for her. Care home workers have a tough job and are generally not shown the appreciation most of them deserve, but I do think they should be given adequate training about how to behave towards the residents at the end of their life. The worst thing was their urging Mum to fight and not leave them, even when she had her eyes open and sometimes was responding to them. The sort of thing that would have really worried her before she got ill - she was stickler about doing her duty and not letting the side down.
     
  9. minet48

    minet48 Registered User

    May 23, 2014
    36
    My sympathies - that sounds so very hard. Yes, with this disease sometimes it feels like that there's no end to the stages of loss. I don't know enough, but have heard that hearing is the last thing to go. I hope it is some small comfort that you can talk to your mum and she will hear you while you bear the sadness of not hearing her reply. We have also had a similar situation to you regarding a resident and their family. I understand it's really difficult because they are fond of your mum and will be grieving too and probably think they are helping. We've had crying in front of her and wondering whether she will still be here next time they see her - so unhelpful. I guess you must be led by what you feel is right for your mum and try to tactfully put in place some boundaries. There's me saying that, when we're struggling with the same sort of thing!1 Easier said than done. I really wish you well in this painful place. It sounds that you are doing everything you can to support your mum. We are starting to realise that having been told possibly weeks, then days, this may go on. Our mum is very strong and having been quite peaceful and accepting, she is now fighting like mad and we wonder how much that is due to those ill judged comments.
     
  10. AW1938

    AW1938 Registered User

    Feb 11, 2017
    41
    It is indeed so very hard. Its a strange thing to wish your mum gone but this is only to ease her suffering and ours selfishly.
     
  11. minet48

    minet48 Registered User

    May 23, 2014
    36
    I expect a lot of people have those thoughts about their loved ones who are suffering. Understandable response to what feels unbearable when you yourself have had to walk that journey with them and feel at the end of your strength. I just want it to be the right time for my Mum - that means Mum's natural time to leave which is neither speeded up nor dragged out. I just want it to be peaceful for her, not fraught with struggle and pain.
     
  12. Palerider

    Palerider Registered User

    Aug 9, 2015
    536
    Male
    North West
    Yes your right no one at the end of their life should hear things that they then may feel compelled to follow but they can't. Hearing is one of the last things to fail. I can't think of anything worse than someone inappropriately telling my dad (as an example) to keep fighting when he was done and near death.

    I appreciate people do make connections with those they care for either professionally or not, but there is a time and a place for proactiveness, and the end of their lives is not the right time.
     
  13. TNJJ

    TNJJ Registered User

    May 7, 2019
    341
    Hi.Just ask the manager for some private time with your loved one.I have been a carer and whilst it is always sad to see someone pass on ,it is the family’s private time.
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,352
    Kent
    Hello @minet48

    Is it possible the care staff who seem over familiar and intrusive to you are trying to impress you by demonstrating the wonderful relationship they have with your mum and how much they care for her.

    If I am right, it is still unacceptable. When your mother has visitors there are boundaries which the staff are crossing.
    The care staff do everything for your mum when she has no visitors and perhaps they become a little territorial with her when she has visitors.

    I would have a word with the manager.
     
  15. minet48

    minet48 Registered User

    May 23, 2014
    36
    Thanks TNJJ. Reassuring to get a carer's perspective. Thank goodness it has calmed down a lot. Will monitor it and speak with the manager if we need to when he gets back after the Bank Holiday.
     
  16. minet48

    minet48 Registered User

    May 23, 2014
    36
     
  17. minet48

    minet48 Registered User

    May 23, 2014
    36
    Thanks Grannie G for those thoughts. Yes, now that I think about it, it does seem like some of them are proving something. (Why?) And some of them are being territorial. It has calmed down a lot but yesterday one did come in (who doesn't even care for my mum as far as I know but obviously knows her) who kept kissing mum and bellowing in her ear "I love you". Mum could only make a sort of grunting noise to acknowledge it and the carer was really disappointed and told me, "Last time I said that to her she told me 'I love you too'." It can feel like some weird unhealthy competition which I don't want to enter. I know she loves us. Yesterday she was saying thank you to me but sadly I couldn't understand what she kept trying to tell me. Such a precious moment but oh dear so hard. Really had to get a grip not to just cry and cry but had to stay calm for her sake. I'm glad if they loved my mum. I'm not criticising them. It would have showed in their care for her and I'm grateful for them caring for her when I couldn't do it any more. Generally it has calmed down but will speak with the manager after the Bank Holiday when the manager (and other staff) come back to work. And if Mum is still with us. Poor Mum. It is heart breaking.
     
  18. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,437
    Female
    Dundee
    Oh dear, heartbreaking indeed. I would have been furious at that Carer who had 'I love you' exchange. I think you need to be very firm with the manager. You deserve to have this emotional and very important time with your mum without their interventions.

    Wishing you strength and wishing your mum peace.
     
  19. minet48

    minet48 Registered User

    May 23, 2014
    36
    Thank you. The support on the Forum is a massive help and has made such a difference.
     
  20. canary

    canary Registered User

    Feb 25, 2014
    10,245
    Female
    South coast
    Tell your mum that she doesnt have to fight - that you know that she ready and it is perfectly OK for her to go.
    She may be waiting for your permission.
     

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