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End of Life

Discussion in 'End of life care' started by KEZH, Jul 26, 2019.

  1. KEZH

    KEZH Registered User

    Feb 6, 2014
    16
    London
    My mum is at advanced stage of Alzheimer's/Vascular dementia. She's had this for 8 years now and has been in a nursing home for 3 years, she is 81. 2 weeks ago she was fitted with a pacemaker after a heart murmur was detected and she kept passing out with her heart stopping for several minutes. Since then she has declined severely to the point where she no longer recognises me.. she actually thought I was her dead mother who passed away 50 years ago. Over the past 2 weeks she has had minimal food and drink and refusing her meds. Prior to this operation she was also spitting out her meds and eating very little. The Dr has visited this morning and said that we cannot force her to eat or drink etc. So we've agreed that she is to not to be forced but only take food and drink and meds if she wishes. It's so sad and I feel very strange today but we know this is the right course. I don't want her to end up in hospital being kept alive by a tube and nor would she. She's also an insulin dependent diabetic. Does anybody know how long she will live for under these circumstances?
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,584
    Kent
    Sadly no one will be able to answer your question @KEZH it really is a question of letting nature take it`s course. All you can do is make sure your mother is pain free and comfortable.

    I'm sure the nursing home will be well versed with end of life procedure even though thank goodness it is new to you.

    You know your mother wouldn't want any further interference , her quality of life will be poor.

    This is a time from which there is no way out, no making it better, a very sad time for you indeed.
     
  3. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    305
    I cannot advise but wanted to send hugs at this time. You are doing the right thing for your mum but it is so hard.

    ))))HUGS (((
     
  4. TheHoff

    TheHoff New member

    Feb 15, 2018
    7
    Male
    Madeley
    I'm in a similar situation. Mum deteriorated about 5 weeks ago. I made the decision with the doctor to withdraw her medication. In that time she had several TIAs with the last one last Wednesday. She had an Ensure drink last Thursday morning. Since the she has been asleep and had nothing to eat or drink since then. So 7 days without any fluid or food and she's still got her eyes closed and breathing. The doctor saw her on Monday and said it could go on another couple of days. It's very painful to see mum like that and I've lost count how many times I've said our goodbyes. Its seriously impacting on my mental wellbeing. How long can she go on with no food and drink? Common sense says not much longer but mum appears indestructible.
     
  5. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,216
    Merseyside
    I wish you strength @TheHoff.
     
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,039
    Yorkshire
  7. kindred

    kindred Registered User

    Apr 8, 2018
    2,200
    Of course this is impacting your mental wellbeing, sweetheart, it is such an ordeal. There are no guidelines but I will tell you my experience in case it helps.
    My beloved husband (73) died last Friday and had been drinking or eating nothing much for about three weeks and nothing at all for the last days up to his death. He was on end of life care, compassionately and lovingly done. My husband was simply, the NHS staff who came in, said, too thin to live at this point, his BMI would not sustain his survival. Oh God it was painful and like you, goodbyes so many times. It can go on a while, but I think your mum will be released fairly soon. All thoughts and sympathy to you, it is so hard for you. with love Kindred aka Geraldinexxx
     
  8. Mel67

    Mel67 New member

    Jul 30, 2019
    6
    I am going through the same situation. Mam has not eaten food for approx. 7 weeks now and has minimal fluids. We decided that we wouldn’t consider any further hospital interventions and she’s at home now with palliative care. She has lost so much weight and sleeps most of the time, although there are small windows of opportunity when we can offer her fluids which she still takes so far. We have some food supplement drinks that we offer her and she sometimes has a couple of spoonfuls but more often than not, she refuses these. We asked the doc at the hospital after her last admission with high sodium levels how long her life expectancy is and they said weeks, that was 4 weeks ago. Every day I wake up and wonder is today the day and I go to visit her, sometimes I think this is it, she won’t last much longer then other days like yesterday, she sat up and drank some tea and orange juice and was awake for over an hour. It’s a terrible emotional rollercoaster to ride and self-care is very important for us all xx
     
  9. Mel67

    Mel67 New member

    Jul 30, 2019
    6
    I think it’s the uncertainty and unknown that is the worst thing because as you said, it’s saying goodbye then realising that there is another day so having to say it again. I’m in similar situation although my mam is still having some fluids when we can get them into her safely but I know the day will come where we aren’t able to get fluids into her at all, we keep thinking that’s soon but we just don’t know. I’m an emotional wreck which has surprised me because I thought I would cope better. I went to docs yesterday and now starting on antidepressants as I can’t go down because of my kids. Look after your self and find whatever it is that you need to support and help you to get through this awful situation. hugs
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,548
    Female
    South coast
    Hello @Mel67
    Im sorry to hear about your mum. My mum went 17 days without food or fluid of any sort before she passed away. You are right - it is a horrible roller coaster
    ((((((((((((((((((((((((((((hugs)))))))))))))))))))) @Mel67 , @TheHoff and @KEZH
     
  11. Mel67

    Mel67 New member

    Jul 30, 2019
    6
    Sorry for your loss, I sincerely hope that your mum was comfortable and at peace when she passed, that’s all we can hope for for them. I hope you are ok and coping. Love and strength to you xx
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,548
    Female
    South coast
    Yes, her passing was peaceful and she had good care taken of her in her care home. She passed away over 2 years ago now, so although I would not say that I am "over it", it is no longer as raw as it was. I cannot forget how hard those last days were, but I am remembering the good times now too.
    Look after yourself
    xx
     
  13. TheHoff

    TheHoff New member

    Feb 15, 2018
    7
    Male
    Madeley
    Thank you for the responses. Mum passed away on Thursday afternoon. She has been released from the nightmare of Alzheimers. I was with her as she took her last breath. A real privilege to be able to comfort her in her last moments. She is now reunited with my dad.
    I can now start a grieving process not just for mum but for dad too. He passed 3 years ago but I have spent that time occupied looking after mum and looking after her care needs.
    So much has happened in that time including 3 moves for her. I never envisaged that the journey would present so much heartache. Battles with a clearly under resourced and under funded NHS for example. Battles with CHC Funders. Having to finish work just to keep up with all the interventions and caring for mum. Having to make some of the most difficult decisions in life. For example moving mum in to care. Then having to move again. Just when you think things can't get any worse they do. Hence my original post.
    Some positives...mums alzheimers was more advanced than we realised when dad passed so she never really grieved. Wills and POA for both Financial and Health & Welfare were done when Mum and Dad had full capacity. Palliative Care at her Nursing home was outstanding.
    We need to campaign stronger to change the law regarding Assisted Death. I suspect that many people in my situation feel the same. If I had a choice now I would willingly make a legal pledge to Assist my own death if I was diagnosed with an incurable disease.

    Mums passing is still very raw but already I am feeling a sense of relief not only for me but for mum. It is the most cruel of illnesses that strips you of your dignity. We need to somehow find a cure. Awareness has clearly been raised nationally which is positive. It needs to be sustained and funding increased to enable continuing research into all types of dementia.
    My heart goes out to all still living with this nightmare.
     
  14. ANITRAM

    ANITRAM Registered User

    Feb 2, 2019
    28
    I am so sorry for your loss and agree with a lot of your sentiments particularly about assisted dying . My MIL died just under 2 weeks ago . We were called at 7.30am on the Saturday and told the End was near . We spent 3 days by her bedside watching her sleep . I have taken comfort from the excellent care she received in the CH but like you battled with CHC funding . I am still feeling guilty that I am so relieved her torment is over . I wish you all the very best and hope you take some comfort that she is reunited with your dad xx
     
  15. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,216
    Merseyside
    I’m so sorry @TheHoff. My thoughts are with you.
     
  16. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    275
    Female
    Essex
    I too am sorry to hear about your mum @TheHoff. Glad you were able to be there and it was a comfort to you and mum .
    Thoroughly agree re assisted dying and a cure. Take care
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,548
    Female
    South coast
    Im sorry for your loss and everything that has led up to it @TheHoff
    Your mum is at peace now
    Be gentle with yourself
    (((((((((((((((((((((((((hugs))))))))))))))))
     
  18. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,034
    Nottinghamshire
  19. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,039
    Yorkshire
    sad news @TheHoff
    you did everything you could for your mum and stood by her all the way, I hope there's much comfort for you in knowing that
    she's at peace now
    be gentle with yourself and find your own peace

    my condolences to you too @ANITRAM
    I understand the feeling of relief, it's nothing to feel guilt over; your MIL was blessed to have such a caring family
     
  20. Mel67

    Mel67 New member

    Jul 30, 2019
    6
    I agree that things should change around assisted death in this country and increased funding into this hideous disease to help find a cure as well as money to fund healthcare without having to lose everything you have ever worked for in your life to pay for care.
    I’m sorry to hear about your mam's passing and I hope you can now begin to look after your own needs and mental health to carry on building your life after the loss of your Mam and Dad.
    Take care
     

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