1. lindaw

    lindaw Registered User

    Sep 20, 2007
    Hi, I am new here:)
    Mum has had Lewy Body Dementia for almost 5 years, and is now in care.
    My StepDad was her carer, but he died a week after she entered the nursing Home.
    He could no longer care for her at home, as she had lost the ability to move herself, could not walk, stand, and could only just sit in a chair.
    Since moving to the Nursing home, she has gradually declined, which seems a natural progression.
    The Nursing Home and staff are fantastic, and really caring.
    3 weeks ago, Mum was no longer able to pass urine, and a catheter was inserted. She got an infection, and was put on antibiotics.
    She had lost interest in food, but was drinking quite well.
    This was the second lost of antibiotics, and she is bedridden.
    She seems to recognise me, but doesnt realy talk, perhaps the odd word here and there, mostly she just stares at me.
    I have asked for palliative care only, as she was taken to hospital after her legs started swelling, and it was not a good experience for her. Medically, the Docs said there was nothing more they could do.
    My dilemma was that I was not sure what type of intervention I should allow. She is not eating at all now, and hardly able to take fluid, maybe a tiny spoonful, dribbled into her mouth.
    She has passed motions several times in a day, which the staff inform me is not 'nice', and really, as she is not eating, obviously she is passing body fluids. Her Catheter is colelcting fluid that looks not normal, and I believe that Mum is coming to her last few days
    The Hospital told me that Mum was dying, that was 6 weeks ago, and poor Mum has been in this bad way for all of that time.
    I feel I am making decisions that Mum would want, but its such a hard thing to say 'no intervention'
    Yesterday when I visited, she was semi comatose most of the time, but when I leant over her, her eyes partially opened, and she 'kissed' me, then just kept staring before closing her eyes again.
    As I say, I feel she is 'at the end', but would like to hear from any of you that have experiences of this time.
    I am finding it so difficult and cry most of the time I visit. I feel guilty because I want the end to come swiftly for her now
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Linda,

    I haven`t experienced this. When my mother died it came relatively quickly, she slipped into a semi-conscious state and then passed away.

    It sounds so painful for you to watch your mother`s suffering and I`m sure your tears are for her, more than yourself.

    The palliative care is to keep her mouth moist, so the tiny spoonsful of liquid will do that, and give some physical comfort by holding or stroking, to let her know you are there.

    I`m sure she knows you are there. Please don`t feel guilty, she probably would like the end to come swiftly too.

    Take care

    Love xx
  3. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Hello Linda:

    I am so sorry to hear about your Mum. In the same situation I am sure I would feel the same - but you are doing your utmost and just being there is all you can do. Your words 'she kissed me' touched me - but maybe it was her way of saying goodbye.

    It is so sad to have to go through this, but thankfully you can 'let go' your feelings on TP - people here are always ready to listen.

    My thoughts are with you Jan
  4. lindaw

    lindaw Registered User

    Sep 20, 2007
    Thank you Grannie and Jan.
    It is such a relief to be able to talk about this to people who understand.

    Mum is the last of my immediate family, having lost my natural Dad and brother, both when they were 48 :(

    It has been hard,as you all know, but I don't want Mum to live for my sake, I want her to pass away for her sake.

  5. Amy

    Amy Registered User

    Jan 4, 2006
    Dear Linda,
    I was in your position 9 weeks ago.
    If mum is not eating and taking little fluid, she is nearing the end. Try and keep her mouth moist - we were given lemon swabs to use. Make sure that her lips stay moist or they will start to crack.
    I think hearing is the last sense to go, so maybe play soothing music - things that your mum likes. Hold her, touch her, stroke her - let her feel your warmth and love.
    Say those things that you need to. Reassure mum that you will be ok. Dont be afraid of the tears - a person you love dearly is leaving you - your mum would want to be able to comfort you.
    When the end was close, we noticed that mum started to become cold - began with her feet, and she gradually turned blue. There was a change in her breathing.
    It was not frightening, she slipped away.
    Do not be afraid Linda - you will be OK.
    Thinkng of you.
    Love Helen
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Linda, I feel for you so much. It's heart-rending watching someone you love suffering in this way.

    I went through it with my mum, who took seven weeks to die following a stroke. I did the same as you, and asked for no intervention. It's a hard decision to make, but when all quality of life has gone, I see no purpose in artificially prolonging it. Your mum is very ill, and even if she were to recover from this infection, would still be very weak and susceptible to other infections.

    Please don't feel guilty, it's natural to want the end to come quickly, no-one would want to prolong such suffering.

    Just spend as much time with your mum as you can, talk to her gently, tell her you love her, tell her it's all right to let go, that you'll be all right.

    And don't be afraid to cry. That's completely natural too.

    My thoughts and prayers are with you and your mum.

    Love and hugs,
  7. lindaw

    lindaw Registered User

    Sep 20, 2007
    Thank you Helen :)

    I feel like I am going round the twist sometimes.
    I just phoned the Nursing Home to see how Mum is, as I cannot go in today (Hospital for myself).
    they tell me they really 'forced' the fluids last night, and that she has taken a little fluid and some clear food supplement this morning.

    I am not sure what they mean by 'forced the fluids', but they said that sometimes 'they just need a little prompting'.
    I will talk with them a little, but yesterday Mum was crying if they tried to get her to take fluids, same if I tried, so I am not sure what is going on:(

    I hope they are not forcing the fluid onto her if she is not willing

  8. lindaw

    lindaw Registered User

    Sep 20, 2007
    Thank you so much Skye.
    Its really good to get the support I am getting from this forum.
    I just wish I had found it weeks ago.

  9. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya again Linda,
    If mum is not swallowing, and they are forcing fluids, it is more likely that it will go onto her lungs and trigger a chest infection. If mum appears to be gagging and distressed by the fluids I would suggest to the staff that she is not forced - just that her mouth is swabbed.
    I know with mum they tried to use a syringe, but it still made her cough, and we asked them not to.
    Take care.
    Love Helen
  10. angie b

    angie b Registered User

    Sep 16, 2007
    East Yorkshire
    Hi Linda

    I'm a newbie here too and like you i wish i'd found this site sooner.

    Really feeling for you as i'm in the same position as you with my mum.

    She was sent home from hospital last friday as they felt there was nothing really they could do for her any more.My mum won't eat or drink which led to her stay in hospital.
    We had to think about what she would want and i know for certain she would hate to see herself like this.Its really hard to come to terms with even though you have probably gone through this many times in your own mind.When the time comes its still horendous.

    We have decided no intervention and the guilt is over whelming.The only way I can get round it in my head is by thinking if its her time to go then she will slip away from us,if it isn't to be just yet then i still have the time with her.My mum looks like she really has had enough and if she needs to rest then i won't stand in her way.

    Angie x
  11. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Hi Linda and Angie

    I had this decision to make a year ago for my Mum with a severe UTI. My choice to start off with was hopsital or nursing home with palliative care. I decided for the latter for her. I then got in the car and drove the 225 miles to be with her. When I arrived that evening I whispered to her "Do you want to get well?" SHe actually opened her eyes and looked at me and said "yes!" with an indignant tone as if it was the most stupid question I could ask.

    At this point I started to syringe fluid into her as she was too weak to do it for herself, although if she had not answered my question I would have made the decision not to try. She was able to swallow and it was no effort to get her to drink the water. That evening in the space of an hour I was able to get her to drink about a pint. When i left to get a rest in the early hours of the morning I asked the night staff to keep giving her the water by syringe. I know with Mental Health Act that a patient cannot be forced and for this very reason staff do not like to syringe feed. However I will say in my experience I could tell that my Mum wanted to drink...but not eat!

    You will most certainly know your parent best and you will be able to tell whether they want to drink. My Mum did and is still here now. That was her choice at the time. If it is your mum's choice not to drink that is what to follow. Stay with her and keep her comfortable and relaxed. Let the tears come and tell her you love her and that all will be well.


    It is difficult.

  12. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Angie, just love and prayers for you and your mum.

    I hope her end is peaceful, if it's her time, and if not I pray for comfort for you both in the days ahead.

  13. Tina

    Tina Registered User

    May 19, 2006
    Dear Linda, and Angie

    the others have said it all and more eloquently than I can. I've been there too.

    Sit with mum, hold her hands, stroke her face, tell her you love her, keep her comfortable. Tell her anything you want to - about the weather outside, about what you've been doing. She'll know you're there, I'm sure.

    Thinking of you and sending caring thoughts and wishes.

    Tina x
  14. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Dear Lindaw,all i can say is that my thoughts are with you.Nobody wants to go through this.Take comfort from the wondeful posts from genuine people with genuine concern.Love and best wishes elaine and family.x
  15. Taffy

    Taffy Registered User

    Apr 15, 2007
    Hi Linda, difficult times and I went through this with my MIL we also said; no intervention she slipped in and out of consciousness for two days it was almost like you could see she had reached the end of her road and was waiting for us to bid her farewell. We told her it was OK with us for her to go if that's what she wanted and we would all catch again someday in the hereafter, she smiled and closed her eyes. She never regained consciousness and the next day we were with her when she peacefully took her last breath. I understand your grief. Caring Thoughts. Taffy.
  16. Kate P

    Kate P Registered User

    Jul 6, 2007
    Hello Linda,

    Your posts are so heartrending and I feel for you so much.

    I have been in a slightly similar position when my fiance died. The doctors had told me it was the end and asked did I want to let him go peacefully or have them attempt to resusitate him.

    I put my decision now down to the fact that I was only 19 and scared as hell but I said for them to resusitate him even though deep down I knew I should let him go. He suffered for longer and died anyway and I feel a lot of guilt about that - even though it was ten years ago.

    You've said you think you're making the decision your mum would want and that's important. As others have said hearing is said to be one of the last senses to be lost. It's hard keeping up conversation with someone in your mum's condition but you can play music to her - I used to read his favourite books to my fiance before he died.

    Both you and your mum are in my prayers.
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    #17 Margarita, Sep 21, 2007
    Last edited: Sep 21, 2007
    music did help my untie in december 05 after she had a stroke was in ITU , then consultant saying that the stroke had affect part of her brain at the back of the head , he asking me would I want her resuscitated if she was to have another stroke , was such a shock to be ask that , because I did not know what she would of wanted so I his opinion , he said that if she came out of this stroke and she may not even survive more them a few weeks , she would have no control over her left side of her body .

    I play music to her she would open her eyes flowing me around the room , while the nurses would say not to get my hope up , but I keep kissing touching her after a week all the tubes came of and we where spoon feeding her feeding her , and she was drinking water so they transferred her into award . she was siting up , but her speech was not understandable , then me thinking she would recover leaving her in the safe hands of the hospital , as I had to fly back to the UK to look after mum , I said goodbye to her would see her in her a few mouths time , then I get phone call saying she had another stroke , I stay in gibraltar they never resuscitated , she was put on morphine she died 10 days later, it was a horrible feeling waiting for her to die , then feeling guilty of the relief I felt then numbness I felt afterwards

    sometime I use to think if I never said goodbye telling her that I was going back to england she would of lived, then why was I not crying , but then at the funeral it hit. me .

    and now I pray that mum death is not like that

    I also shall keep you in my prayers xx
  18. Netty

    Netty Registered User

    Feb 24, 2007
    South Wales
    Hello Linda and Angie. I am so sorry you are having to go through this. I lost my father 9 years ago and can still remember it all vividly.

    We took the decision for palitive care as we all knew he'd had enough. The only thing we could do for him was hope to make him as comfortable and pain free as possible (he had cancer) and let him go.

    I remember the waiting and willing for it to all be over while at the same time not wanting to lose him.

    When he went the feeling of relief was almost overwhelming. Not because he had died, but because he was no longer suffering.

    Wishing there was something I could say to make things easier for you.

    Annette x
  19. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    I know how it is for relatives of people who are dying, and how hard it is to make the choice of what to do. My mother in law died in June 2004 after a stroke, and could not eat or drink cos of her stroke. We did not intervene, she was well looked after, and died after 6 weeks. I have no regrets, she was 90, her time had come, and she died in comfort and peace.

    Three months later my father, only 79, died of stomach cancer, he didn't eat or drink cos he couldn't fit anything into his stomach, so we had no choice really. We kept his lips moist, he even managed a small tot of whisky! But it was just a question of making his last days comfortable (and that was less than a week from him being relatively active, to him dying).

    At the end, when it is the end, comfort is key. Fight it if you think the time is not right, but if you know it is, just do your best.

    I sympathise with everyone in this position. I wish there were an answer.

  20. suptowngirl

    suptowngirl Registered User

    Sep 19, 2005
    #20 suptowngirl, Sep 22, 2007
    Last edited: Sep 25, 2007
    Hi Linda

    Hi Linda,
    I am sitting here crying as I am typing this. I really know how you are feeling as my mom is heading this way. Mom broke her hip in the last home she was in and spent six weeks in hospital, waiting to be placed in a nursing home. Now she is there she is declining very fast. She cannot walk and her legs are still in the same position as when she was sat in the chair. She doesn't talk much and when she does try you can just understand the odd word or two. She is almost always sleeping. She is gradually decreasing her food intake but we always give her a drink whenever we are there.
    We too have asked for no intervention when that time comes and it seems it won't be far away. My mom would hate to see herself like this and we can see she is now giving up.
    I hold her hand, stroke her face and tell her how much I love her, She does manage to say " love you" . It's so hard to hold back the tears and although I have tried to be strong, the last couple of visits I have not been able to hold it back. I love her so much. My dad passed away 11 years ago and we have put a photo of him where mom can see it, he is kneeling down with his arms held out to her, as if he is waiting for her.
    She is almost ready and we are hoping she goes to him quietly in her sleep.
    It's heartbreaking to see your mom like this, you think your parents will always be there.
    Know your not alone,
    Take Care

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