I have to share this with you all

Discussion in 'End of life care' started by Babymare01, May 15, 2019.

  1. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    84
    Female
    Staffordshire
    Oh my can you believe how similar it’s very spooky , in a way it’s reassuring that I’m not alone . Dare I ask where you are in case we are closer than we know . Keep on the positive road and at least for now take comfort in that they are safe , settled and comfortable xx
     
  2. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,549
    Female
    Auckland...... New Zealand
    @Babymare01
    @Moose1966

    Still at the same stage with my Mum 78yrs, since March, after Dec-Feb and a chest infection thinking this is it! :eek:
    Mum is mostly non verbal. Smiles & laughs, will say a few incoherent words and out of the blue will say something clear as day.
    Walks a few steps only with two people assisting her.
    Pureed & mashed food, Fortasip drinks, or drinks from a sippy cup with assistance.
    They’ve even managed to reduce her Quetiapine from 75mg to 12.5mg a day, with no signs of aggression. All other meds stopped.
    For the first time in 5 mnths, since being moved to Hospital/Nursing level she has gained a little bit of weight, as she now isnt sleeping as much and falling asleep while eating. Sitting in the lounge in a wheeled lazy boy, in between sleeping, quite alert especially when music is on.
    Dr has also had her on a daily low dose anti B to ward off UTI’s, which has been the cause of her sudden decline over the last year.

    Although in end stage Alz, I never thought that Mum losing mobility and ability to speak, would be a better blessing than being in Dementia Care, talking & walking, but constantly agitated, aggressive, mood swings..... hope that doesnt sound harsh :oops:
     
  3. ErnieF

    ErnieF New member

    May 17, 2019
    1
    My mom has been in and out of the NH and hospital on and off since Jan this year.

    Things somewhat stabilized with a PEG inserted and transfer back to the NH for long-term care. I reluctantly signed the DNR and her diagnosis was end-stage dementia.

    She sleeps almost all the time and rarely even tries to say anything but a grunt now and then. When I visit every other day, I try to exercise her arms; hands; and legs. In the past week her hands have been very tightly clenched and when I try to open them, can see it causes her discomfort.

    Yesterday when I visited, the NH has placed a sort of plastic grasp with padding on it to keep her from hurting herself. My question is: does this indicate she is nearing the end with her muscles tightening up and losing tone? I am now afraid to even exercise her so not to hurt her.

    Any thoughts or experience would be appreciated.
     
  4. yak55

    yak55 Registered User

    Jun 15, 2015
    614
    Bless you, thank you for sharing such a wonderful story
     
  5. SKD

    SKD Registered User

    Mum has recently moved to nursing home after 7 weeks in hospital - I was worried she might have become bed bound. I live 220 miles away and visit fortnightly and yesterday was delighted to find her in the lounge, nicely dressed and calm, she can weight bear enough to move from bed to wheelchair to chair with help but without a hoist and mostly fed herself in the dining room. I was so happy. Her cognition is very poor but she can still respond. Her assigned nurse has been so active to move her forward - he hopes we can make more improvements. After the past few months of seeing Mum agitated, unkempt and in bed seems a miracle.
     
  6. Susan11

    Susan11 Registered User

    Nov 18, 2018
    1,440
    Hi Linbrusco
    Not harsh at all. It must be so much better for her sitting with other people and enjoying the music.
    Can you tell me more about the anti B as Mum keeps getting UTI's too?
    Thank you Susan
     
  7. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,549
    Female
    Auckland...... New Zealand
    @Susan11
    Mum has had 5 UTI’s ... basically 3 confirmed and 2 suspected as Nursing Staff couldnt obtain a UTI sample.... all this between March 18 to Oct 18.
    March last year she was so bad, as well as refusing foods, fluid & meds combined with agression & agitation & being physically aggressive that she was admitted to hospital.
    They said they didnt consider a low dose anti B unless more than 3 UTI’s in a year. .
    Mum is on Trimethoprim but Im not sure what dose, plus i’m not from the UK.
     
  8. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    297
    Hello there - Im in West Lancashire UK
     
  9. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    84
    Female
    Staffordshire
    Not to far away Staffordshire North West . New week today let’s see how it is for us let’s hope it’s as positive as last week . Although mums shattered I think the whole mental stimulation has worn her out . But they want to continue getting her into the lounge with other residents if anything just for some quality of time rather than just lying in bed x
     
  10. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    84
    Female
    Staffordshire
    It’s tough at this stage of illness , loved ones are weak , frail etc it seems like every day you are expecting the phone call . To be able to know that they are still able to smile is an amazing feeling one to treasure . Thinking of all on this journey and for all .
     
  11. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    297
    Yes it wears mum out being up but it is the quality of life. Not just laying in bed on her own - always a radio playing. The hustle and bustle of life in the lounge etc.

    I actually sent the manager at the home an e mail thanking all the staff for going that extra mile for mum - getting her up in lounge and outside. She pinned it up on the staff notice board and by all accounts couple of the staff cried because normally its people finding fault and not saying thank you to them. I know I got a hug of one of them bless them :)
     
  12. Jale

    Jale Registered User

    Jul 9, 2018
    224
    Female
    How uplifting for you and also your Mum, it is so nice to hear the good side of care/nursing homes because so often it is only the bad sides that make the news.

    A home, whether it be a care home or nursing home is only as good as it's staff, and from your post I think you have struck gold. I hope that you are able to spend more happy times with your Mum
     
  13. Doggy86*

    Doggy86* Registered User

    Sep 2, 2018
    48
    Islington
    Hi,

    I have not been on here for a while, but just read this post, my Mum went blind in February and since then she has been mainly in bed as we did not know how she would be getting up after going blind. When my mum was in hospital they left her bed Because mum does not like to be touched, and can get aggressive, the 3 weeks in bed made her week. She is now quite frail and we are wondering should we get her up but because she is blind or will it scare her as we have to use the hoist as Mum can’t walk. She has been in bed all this time. We would like to get her up but are scared she is too weak now. It’s really hard to get her to eat as well as she cannot see what she is eating, her co-ordination is not good either.
     
  14. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    84
    Female
    Staffordshire
    How are you doing , we are much the same . Mums up in magic chair but sadly it’s having a negative impact on her skin , very quick to break down so she’s limited to the odd hour up and then bed for a few days , but she’s up occasionally so I’m happy with that .
     
  15. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    297
    Hello there - Im hanging in there has we all do. Mum has very fragile skin so, like your mum, there are days when she stays in bed due to skin tears but, like you, im more than happy in the time she spends up in the lounge :)
     

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