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Tips for end-of-life care : for your loved one and you.

Discussion in 'End of life care' started by MirandaT, Aug 30, 2015.

  1. MirandaT

    MirandaT Registered User

    Jul 19, 2010
    94
    Spain
    9 months since mum died and my sadness is less intense now tho I still have periods of feelings very upset.
    I've not been back to TP much - it was such a help during mum's illness but I've been trying hard to get on with 'normal life'.
    I've just come across some notes I made just after mum died which I meant to post - better late than never!
    They are all in the context of being with a family member during their last days and weeks in a care home.
    I "moved in" for 10 days - had a mattress on the floor of mum's room and used her shower. The care staff were fine with the arrangement tho I don't think it was a usual one. They washed and changed mum and I did everything else that was needed. I didn't have anywhere else that I needed to be during the time and felt strongly that I should be by her side 24/7.
    My top tips:
    Keep clean water in a bowl and soft wipes to hand for keeping skin clean.
    Check hands and feet - mum had her hands lightly closed in fists and they needed unclenching, washing and drying twice a day or they got smelly.
    After a few days of not eating or drinking, she started coughing up lots of smelly mucus (yuk). I used damp soft wipes to clean her mouth - had to do this every 20 mins or so but it only lasted a couple of days.
    If the room gets stuffy and keeping the window open all the time is too chilly, use an oil burner and essential oil to improve the air.
    Play gentle, relaxing music - bring in a variety of CDs.
    Being in things to pass the time - alternate chatting / singing / reading to your loved one with doing something for you - read a novel, knit, do puzzles. I read lots of mum's favourite poems out loud and sang hymns to her, but read lurid thrillers (to myself) in between!
    Wear comfy clothes and keep a change of clothes to hand.
    Keep a toothbrush etc to freshen up.
    Arrange for family and friends to pop in.
    Take short walks, do stretches etc if you are sitting for long periods.

    I hope the above will be helpful to some TP members, tho I also realise that every situation is different!
    TP was a lifeline to me, especially when I was looking after mum at home - thanks everyone!
     
  2. Aitchbee

    Aitchbee Registered User

    Nov 3, 2013
    87
    Thanks so much for this post Miranda. There seems to be very little information out there about end of life care
     
  3. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    Thanks Miranda lots of practical advice here. I'm going to have to go through this in the next few months which I'm dreading. I hope you are ok. x


    Sent from my iPad using Talking Point
     
  4. MirandaT

    MirandaT Registered User

    Jul 19, 2010
    94
    Spain
    I found the more general info on this link useful too: http://www.hospicenet.org/html/preparing_for.html
    I think I found it elsewhere on the forum.
    It's strange, you'd think as Alzheimer's is such a long drawn-out illness that you'd be prepared for the last stage, maybe even relieved, but for me that wasn't the case and a bit more information to hand would be good! I was lucky in that the care workers were around to advise me - they'd got plenty of experience - but if I had been at home with mum I think it would have been very different...
     
  5. sarahjg

    sarahjg Registered User

    Apr 15, 2015
    17
    Hi Miranda- I've just been looking at the posts on here and want to thank you for yours.. this is probably where I am with dad .. spent the weekend in the hospital with him which was all a bit traumatic ( not sure how that happened as I have discussed his end of life care plan with NH ) but he is back at the NH now and seems a bit brighter- opened his eyes briefly today and almost had a smile. Thank you for taking the time to share this..really appreciate the advice .. xxx
     
  6. MirandaT

    MirandaT Registered User

    Jul 19, 2010
    94
    Spain
    Am thinking of you and your dad and hope you are okay?
     
  7. sarahjg

    sarahjg Registered User

    Apr 15, 2015
    17
    #7 sarahjg, Sep 13, 2015
    Last edited: Sep 13, 2015
    Hi Miranda- haven't been on here for a while .. thanks for your post - I so value this forum to be in touch with people who have been in the same place. Dad still drifting away - he varies a lot from day to day and always surprises me.. nothing this week then just as I was leaving him today had a lovely smile. Have revisited his end of life plan with the NH and am hoping that means he won't end up being back in hospital - just want to look after him now xxx
     

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