Eating...not eating...drinking..not drinking

Discussion in 'End of life care' started by Splashing About, Oct 26, 2019.

  1. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,839
    Yes but we often forget to be kind to ourselves, & forget we aren’t superhuman. The toll dementia takes on those caring is a sad reality of the system. Your experiences resonate with me as my maternal grandfather had to be regularly sedated & couldn’t eventually be cared for at home.

    The distress & agitation escalated & my Grandad was inconsolable. I had two small toddlers at the time & wasn’t able to support my Mum in his care in later years as I did with my Granny. I used to spend a week every month at Mum & Dads so I could do their household chores & look after my Dad who was still working at this point. My husband needed the car for work so it was either him usually dropping us off a 5-6 hour round trip or the train!

    The exhaustion & sadness of my Mum & Dad in their loving care of keeping my Grandad in his own home I will never forget. To be a witness to family caring for a PWD wasn’t a positive experience for either myself or my children; but the enduring love, care & commitment was .

    Please be kind to yourself, you are doing everything you can but as always Dementia will take its toll.
     
  2. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    180
    @DesperateofDevon that also resonates as I watched my mum care for her mum in our house and it was a difficult experience. It makes me reflect on her life. She was exhausted and consequently harsh on everyone around her. I spend a lot of time worrying it might do the same to me and was really hurt by a comment my sister said on this issue (from the comfort of her lounge, miles away, untouched by the practicalities of bottom wiping etc, probably congratulating herself on not being ‘like mum’ whilst casting judgement)

    We just do the best we can but yes remembering we are not superhuman and looking after ourselves is important. I wish invisible relatives and the social care services supported that!
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,839
    At a meeting recently I pointed out that unless you have personal experience of dementia of a loved one, it was impossible to understand the emotional & physical toll it took on loved ones. You can empathise but only that experience of daily bereavement dementia brings with its continuing consumption of a loved one can actually bring home the issues of caring for a PWD.

    Otherwise you are removed emotionally & just dealing with physical needs & not the emotional distress felt by all with the consequences of dementia.
     
  4. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    180
    My lovely brother pointed out that I was doing so much that even if another member of the family didn’t agree with it they should avoid any criticism. I’m probably oversensitive to criticism now but it’s because
    • I’m exhausted
    • Everyone offers advice which I’ve already tried and explaining endlessly....yes I tried that...makes me feel negative
    • Usually the helpful advice is from people who don’t actually understand the situation
    • Often their advice stems from a position of wanting to pretend it’s fixable and therefore they don’t have any need to get involved any further...
    People naturally want to fix the situation and advice is great but sometimes you have to accept poo happen and inco pads leak... it is not the fault or incompetence of the carer

    Mum’s eating today and drinking. Bed wetting is evidence of this. She’s been prescribed Haliperidol. I hope this helps the mood and behaviour because she’s really agitated and cross with life. She has a fully funded place in a nice NH starting next week. I can’t believe the rollercoaster this year has been
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,839
    Bless you, look after yourself . As soon as I get stuff sorted I normally come down with something horrid. Actually getting used to having repeat attacks of shingles!
     
  6. Onlydaughter1

    Onlydaughter1 New member

    Jul 2, 2019
    2
    Thanks for posting about this. Just read your thread and the replies. Its only my second time on this forum, but we're going through a similar thing with my dad who is in hospital right now, having refused to drink, and is rapidly losing weight he didn't have to lose through eating hardly anything. He's been aggressive and hostile, and refusing various care interventions, and constantly (I'm not exaggerating) is talking nonsense.
    Sounds like things have been really tough for you and your family. Take care
     
  7. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    180
    Hi ((((((@Onlydaughter1))))) Sorry to hear you’re having the same experience. I hadn’t realised quite how common this was.

    We are now day two without any food and 4-5 weeks since any normal eating. She is however drinking lots and tbh looks as fit as a fiddle and very strong. I can’t reconcile the two.

    This is such a horrible disease for everyone involved
     
  8. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    180
    Today it’s struck me that she will never walk again. I mean she might...but I suspect she won’t.

    She last walked with me a fortnight ago following a week in bed with infection ...before that fully mobile. She has now lost huge amounts of muscle from her legs. They have halved in size (fluid as well as muscle I’m sure) and lack of mobility combined with the eating and deteriorating cognition makes me feel it’s impossible.

    I visited the NH tonight and she was rambling, totally flat in bed which had cot sides and looked strange because it was like a white box. I still think she’s really strong and not going to die. I feel fairly confident of that
     
  9. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    532
    Scotland
    Thinking of you and wishing you strength.
     
  10. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    180
    I’ve lost count but I think we are 5-6 weeks into this. Only 100ml fluids today, no urine output and very sleepy but still quite strong when fighting over the bedding. I like to kiss her when I leave and she let me but then loudly said GET OUT, JUST GET OUT

    I’m not sensitive about this now. Fortunately
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,839
    Lovely daughter went to visit her Grandad today - I’m full of this wretched cold & feel rotten! He’s very sleepy & not interested in food.
     
  12. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    180
    It’s so hard isn’t it. I feel in suspended bereavement but also can’t believe she may pass away.
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,839
    Every time the phone rings I freeze! Is this the call ? It’s a horrid situation & it could go on for weeks!
     
  14. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    180
    Sounds like the pair of us are at similar stages. Last night I realised that not being able to communicate with her meaningfully (at all) is what I find most distressing. I have no idea what she needs, feels, wants or how to comfort.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,777
    Female
    South coast
    When mum was at this stage I used to read to her from the books that she loved as a child - Wind in the Willows, Winnie the Pooh and Alice in Wonderland, also Poems from a Treasury of Poems that she had and sometimes she would recite them along with me. I also used to play her favourite music.
    She seemed to enjoy hearing familiar words/sounds
     
  16. Pete1

    Pete1 Registered User

    Jul 16, 2019
    231
    Male
    Morning @Splashing About, I used to have soothing classical music playing in Mum's room, and used to hold her tiny hand and sit and reminisce (took photo albums in and described them to her). Although she could not longer communicate the GP advised that she would still be able to hear, so I just used to sit and talk. It is such a terribly painful time for all the family.
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,839
    classic fm, plants, & I read from magazines

    I’m full of cold at the moment & Daren go in to see Dad!
    Added guilt! x
     
  18. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    180
    Classic FM is a regular. I like the idea of reading to her.
    300 mls today. Nurse says no urine all day but doesn’t know about nighttime. She still looks quite well tbh.
     
  19. DoingthebestIcan

    DoingthebestIcan New member

    Nov 13, 2019
    9
    Hi sorry extremely difficult situation. We use various things including ice lollies, sorbet, have 2 different drinks in different styles of mug/glass/ feeder beaker available, soups, stews, extra gravy , making hot drinks about 1/2 - 3/4 hour before serving so no fuss about ‘too hot ‘ and then immediately permanent refusal. We have visual fluid chart with clips on and tick them when finished so can see what has had and looks see what reaction anyone has..awareness we would like for him to drink and so will have degrees awareness about any reaction. Sometimes use straws, sometimes use cartons, sometimes flavoured water or plain, every possible type juice available, warm drinks such as milk, hot chocolate, Horlicks etc etc all possible. Hard work but today by 3pm had had 1400mls in. - that’s fantastic and not one word of encouragement needed just drinks X2 always available. We’ve given up saying something and that seems for now best option. Just ideas . No one size fits all answers unfortunately. Wish there were ! Some days its a nightmare and hardly anything is consumed. Take care
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,839
    Daughter went in to see her Grandad - & the home we’re going to feed him in the lounge sitting upright in a chair. Immediately food appears he promptly fell asleep doubled over!

    amazingly for someone who has little food or drink his skin colour is good!
     

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