1. dianemb

    dianemb Registered User

    Aug 17, 2006
    20
    #1 dianemb, Aug 17, 2006
    Last edited: Aug 17, 2006
    Hi there, i am new here and very desperate. mum has been in a nursing home for 3 years after being diagnosed with Lewy Body dementia. She was admitted into hospital 3 weeks ago with dehydration and a urine infection. She has now lost abilty to swallow fluids although she can still take thickened fluids so we add a nutrition powder to all fluids to make it thick. She also can eat mousse and yogurt type foods. She is hardly eating or taking anything now. The doctors withdrew all medication last friday and her drip and told us she is in the ffinal stages and it would be kinder to let her go. She sleeps all the time and occasionally throughout the day becomes very aggitated, screaming and is given a drug to calm her down which just sends her off to sleep. her urine is very dark orange and she is looking very grey today. Yesterday she only took a thickened cup of cranberry juice and two spoonfuls of yogurt. Is it fair just to watch her fade away or is there anything else my dad or I can do. thanks for listening and any help would be appreciated. she is only 71 years young and i want her to stay- Diane
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Diane,
    So sorry about your mum. If medication has been withdrawn, it sounds as though the doctors feel that mum is ready to die. How was mum before this UTI?
    What I would need to do now, is make the dying as good as possible. Surround your mum with your love; have sounds and smells around her that she likes. Tell her that you love her; that she is safe; that you are there for her and with her on this part of her journey.
    My mum has advanced dementia; is beginning to have trouble swallowing certain foods. My dad and I have already discussed what we will do when her situation deteriorates - and it is basically what I have said above. I so know what you mean about not wanting to let her go - just a smile, a touch feels better than nothing. But life has a beginning and an end, and we have to go with its ebb and flow. It will be so very painful for you and your dad, but hold on to each other, you wil get through it, and the pain will lessen.
    Thinking of you. Post here. People will help you through this.
    Love Helen
     
  3. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hello Diane,

    I am so very sorry to hear of the torment you are all going through, it's awful.
    The only faintly positive thing is that your Mum has no comprehension of what is going on and is probably suffering less, emotionally, than you and Dad. The downside of that is that in her more wakeful moments she is confused & frightened - hence the screaming. It is therefore thought kinder to keep her sedated.
    Well no, of course it's not 'fair' on anyone concerned, but thus far medical science can't rebuild the connections in the brain which break down, causing dementia. I don't know much about Lewy Body dementia, but I think all the various types of dementia end up in the same place, which is where you are now. Short of divine intervention, there isn't anything else that you, Dad or anyone else can do except control her distress and keep her as physically comfortable - and comforted - as possible.

    Sit with her, hold her hand, rub her back, tell her you love her, talk to her (even if you don't think she's listening to you, hearing is the last sense to go, and she may well know you are with her), talk of old times and good times. I know this will require great strength of character from you both, but it's all you can do.
    After she's gone, you will know that you gave her every ounce of love & affection she needed, and you will know she's at peace from the confusion, fear & agitation this horrible disease causes. And then you can hold onto each other, share your sorrow, but also start recapturing and sharing your memories of the real Mum, before she became ill.
     
  4. Áine

    Áine Registered User

    hi diane

    it sounds like your mum is just where my dad was 3 weeks ago, except it was chest rather than urine infection that he had.

    i think i can understand your question about "is it fair to just watch her fade away?" It feels like there should be something you're doing or should be able to do. I guess that's true because up to this point, however inadequate it's felt at times, there WILL have been something you can do and have done for her. The way I looked at it, anything that we did ....... more aggressive anti-biotics, drips, tests etc if any such is available ..... would only get dad back to where he was before he got the infection ..... it wouldn't take away the LBD. Something may have worked, and he might have continued a little longer, whilst continuing to get worse with dementia, and eventually getting another infection etc.

    I'm afraid it sounds like this is the end. Try and make it as good as possible - like Helen says. Dad was quite agitated when he was dying and that was a shock to me and I was quite frightened ....... I've since realised that that is far more "normal" than I thought. Spend time with mum, play her music, use nice relaxing aromas (try lavender, frankincense, camomile if available ....... I had advantage of close friend who is aromatherapist). Hold her, talk to her. Dad couldn't swallow much but had mouth swabs to keep his mouth comfortable, and we occasionally gave him some juice on one. Mum may understand far more than you think. I reckon dad was more with it as he was dying than he had been for ages. Suggest you also get yourself the odd break. I found sitting watching dad very very emotionally draining. Just have a walk up the corridor for a couple of minutes at least.

    Above all ..... take care of yourself ....... this is a difficult time.
     
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Diane

    I agree with the other replies, it is a terrible time watching helplessly while your parent dies, I lost my Dad almost 2 years ago, we could only sit with him, and hold him, stroke his face and talk to him.

    He had a massive stroke and could only move his eyes, but I am sure he knew we were there and that comforted him.

    Telling him it was alright to let go and that we would always make sure Mum was safe and looked after was the hardest thing we have ever done, but we did it and got through it and you will too.

    Thinking of you

    Kathleen
     

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