Advice needed - Mum on End of Life Care - a total rollercoaster

Discussion in 'End of life care' started by Confused12, Dec 27, 2016.

  1. Confused12

    Confused12 Registered User

    Aug 9, 2012
    42
    I can only repeat what the doctor said, I guess everyone is different, V
     
  2. Angie1996

    Angie1996 Registered User

    May 15, 2016
    515
    Somerset
    Thanks confused, my dads gone now, passed away yesterday. Please keep posting and I send you big hugs xx tough time x


    Sent from my iPhone using Talking Point
     
  3. Confused12

    Confused12 Registered User

    Aug 9, 2012
    42
    Angie, I posted on your thread about your Dad earlier, I am so sorry for you loss. Sending my love to you xx

    Not a great deal of change here, she's about 6.5 stone now, the mottling in the arms and knees continues. She's had little food and liquid. She's sleeping a lot. I'll keep you posted. Thinking of you at this sad time xx
     
  4. Bingowings80

    Bingowings80 Registered User

    Aug 3, 2016
    6
    Birmingham
    Newbie here! Feeling low

    Hi to everyone here on TP, I have been lurking around, but have decided to be brave and post!

    I've got to say first though how wonderful everyone is on this forum, there are so many kind, caring and knowledgeable people on here, it is great to see/read.
    I am a carer to my dad (75) who has LBD and was diagnosed last year in mid May. Although looking back his symptoms first started at the end of 2010.
    We (my son, OH and myself) had moved out in August 2010, he asked us to move back into his house (my childhood home) in April 2015, we moved back as I knew dad wasn't taking care of himself, this time with two new additions to the family in the form of my daughter and son, who are now 5 & 4 respectively, eldest son is 16.

    I noticed that he was very quiet and you had to initiate communication as he rarely would. Then a few months later came the diagnosis of LBD.
    His symptoms have gotten a lot worse quite quickly and his level of understanding/confusion is up and down like a yo-yo, I had him tested for a UTI just before Christmas, but it was clear. I am dealing with some difficult feelings, my husband and I are so tired as most nights he wandering and coming into our bedroom looking for a way out - he ALWAYS wants to go home! He is confused about where the toilet is, even though we leave the light on, door open and the toilet seat up for ease of use, he urinates on his bedside rug, in his chest of drawers, the bin, in his shoes etc.
    He can rarely get himself dressed anymore, which is in stark contrast to 6 months ago, when he might've needed a little help
    The thing is, and I apologise for the long post, I just want to know if there is anyone out there in a similar situation to me where everybody inc the person you are caring for all live under one roof?

    How do you cope?

    I had a very rough patch before the Christmas holidays and I am finding it increasingly hard to split my time between dad, my kids and doing chores etc, I am a full time carer. Especially with the youngest two, things have become difficult in regards to getting them to school on time and helping them with homework etc as I'm knackered, the head teacher has had to speak to me about their punctuality, I told her why and she referred me to SS, but I haven't heard anything from them as yet.

    My husband works long shifts and I am the only (biological) child for my dad. I have brother, same mum; she passed away almost 15 years ago, but he has cut off all ties with the family and I haven't got a clue where he is. Dad has one brother and he doesn't help at all, despite being asked to and his nieces and nephews live in London
    Most of his "friends" seem to of deserted him and I have lost contact with some people I thought were good friends as I have little time for myself anymore.
    There are so many other things I want to say but I think I'll leave it for now.

    Thank you to anyone who might have some advice for me, although I just wanted to vent as I find no one really understands, except for the lovely ppl here on TP.

    And thank you for reading my novel!!! Too long :)
     
  5. Bingowings80

    Bingowings80 Registered User

    Aug 3, 2016
    6
    Birmingham
    I'm so sorry

    I started, what I thought was a thread, it was a comment - on someone else's thread, and of all things it's to with the loss of their loved ones, my deepest apologies, I was very tired and thought I was starting a new conversation. :(

    My condolences x
     
  6. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    I hope you're doing ok today confused and I'm glad the doctor has signed you off. Hopefully it'll help you get through these no doubt testing weeks ahead that little bit easier.

    Sending lots of love and I'll be thinking of you xx
     
  7. deborahhowarth

    deborahhowarth Registered User

    Jan 2, 2017
    1
    Advice/Experiences please

    Hi All,
    I am new to this forum - I'd love some advice. My mum has altzhiemers and is at the end stages. She is doubly incontinent and now totally immobile- bed ridden. She is hoisted onto a chair but almost immediately asks to go back to bed where she has been for 3 weeks. She is eating and drinking tiny amounts . I wonder whether any of your loved ones have had a really bad cough which results in coughing up a thick but clear mucus? A lot of it. Mum has had it since she has been so immobile. I've been trying to google it and I wonder if it could be the fact that her lungs are not draining? What can I do to help please? Deb xxx
     
  8. Confused12

    Confused12 Registered User

    Aug 9, 2012
    42
    #28 Confused12, Jan 2, 2017
    Last edited: Jan 2, 2017
    Hiya Deb, haven't heard my mum cough. She is on a pressure mattress and they also move her and prop her with pillows in different positions, the bed moves aswell, so they try and move her for pressure sores etc. My mum has been in bed five weeks now. Only main physical changes are great Weight loss due to barely eating, mottled skin around wrists, knees, rest of skin very pale apart from her face that flushes a lot. She normally cold to the touch on her hands arms, V x
     
  9. Aitchbee

    Aitchbee Registered User

    Nov 3, 2013
    87
    Hello Deb. My Mum is at the end stages of Lewy Body Dementia. She coughs a lot, has difficulty swallowing and had a lot of clear mucus/saliva. I think it is a feature of end stage dementia. She has been prescribed hyoscine patches to help dry up the mucus and it has helped although there are side effects but I think she is better off with the patches. Have a word with your Mum"s GP or district nurse. I hope this helps. Helen x
     
  10. Angie1996

    Angie1996 Registered User

    May 15, 2016
    515
    Somerset
    Hi Confused, how is your mum?
     
  11. Confused12

    Confused12 Registered User

    Aug 9, 2012
    42
    Hi Angie, how have you being doing? You've been in my thoughts x

    My mum remains in bed, mainly sleeping - but she's been eating quite a lot, which has totally confused me! She's gone for weeks barely eating to now eating mashed up food and yogurts. I was told last week that they literally didn't know how she was surviving. It majorly messes with you head because you prepare yourself mentally for one thing then you see another. I am considering reduced hours for the time being because I just don't know what is going on at present x
     
  12. Angie1996

    Angie1996 Registered User

    May 15, 2016
    515
    Somerset
    Wow what a change in her!! My dad started eating more, however stopped again, I even thought he was going to pull through, just enjoy this time now as it may change again xx


    Sent from my iPhone using Talking Point
     
  13. Angie1996

    Angie1996 Registered User

    May 15, 2016
    515
    Somerset
    And yes it messes with your head loads, you prepare yourself and then It changes again!! This is very hard.....


    Sent from my iPhone using Talking Point
     
  14. Confused12

    Confused12 Registered User

    Aug 9, 2012
    42
    Still Here

    Dear all, my mum has been surviving on teaspoons of food and small amounts of fluid. She is now on Day 5 of she has not taking in Food or Liquid, just mouth-care. Ive been with Her each day that she hasn't had anything. She constantly sleeps, still passes urine, her breathing hasn't faultered. I am amazed at her defiance of the disease but I so want her to be at peace. I am so exhausted and when I try and sleep I am on edge worried that she might pass. Anyone had similar experiences? V x
     
  15. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,478
    Ireland
    Oh, Confused, I'm so sorry you are going through this. It's so very hard, watching and waiting. In all reality, no matter how watchful you are though, there is no guarantee that your mum won't slip away while you are gone to the loo, or while you've fallen asleep for a moment. She may be reluctant to leave you, and not want to go while you are there; it happens. And sometimes, it's as if they can't let go until we tell them it's ok for them to, and that we will be fine. All you can do is to reassure her that you love her, but that you know how very tired she is, and that you know how much she has suffered and that it's ok for her to go now. That you will miss her, but you will be fine.
     
  16. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    With such a small amount of fluids, and this is meant with the best of intentions, it hopefully won't be more than a few weeks. You can't live 'on the edge' for that length of time. As has already been said you can 'hover' for days and then you 'pop out quickly' and then 'miss it'.

    Say anything you feel you need to, so there's nothing left unsaid to recriminate yourself for.

    Thank her for all she's been to you and the family.
    Tell her you love her.
    Ask for and give forgiveness.
    Reassure her it's OK to let go and that you will be sad but fine in the future. Then stagger your visits at times when you reckon she'll be at her most responsive- perhaps certain times of day are better than others. Then carry on with your own life.
     
  17. Daughter33

    Daughter33 New member

    Mar 19, 2019
    2
    Hi confused12
    My dad has been on end of life care for 12 months now. To say it's been hard is an understatement. I work full time and have had to downgrade my role twice to continue with dad's care throughout his dementia. He keeps pulling through urinary sepsis and chest infections even with copd. I had a DST meeting 2 weeks ago and they took him off end of life to which dad responded with a massive drop in blood pressure, pulse, lethargy etc I got a call at work so I left to be with him. He's now back on end of life and recovering again. I have been signed off work with stress. I would say to you talk to your employer and doctor, let them know how you are feeling, hopefully they will understand and support you through this awful time.
     
  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    hello @Daughter33
    a warm welcome to TP
    you and your dad have certainly been through the mill this past year, so I'm glad you have found TP for support and to share your experiences

    this is a thread from 2017 and the particular member hasn't returned to TP so may not see your thoughtful reply

    maybe start a thread of your own, possibly simply copy and paste your post here, put a title that hints at what your posts is about, and members will pop in with responses
    you might choose one of these forums
    https://forum.alzheimers.org.uk/forums/welcome-and-how-to-use-talking-point.32/
    https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
    https://forum.alzheimers.org.uk/forums/end-of-life-care.73/

    best wishes
     

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