1. Welcome to Talking Point - an online community for everyone who is affected by dementia. Whether you have dementia or know someone who does, we will be there for you.

    Sign up to join the community, or Log in if you're already a member.

    If you need help using Talking Point, read our Help pages or contact us at talkingpoint@alzheimers.org.uk

  2. Q&A: Dementia Together Magazine - Wed 25 April, 4-5pm

    Do you have any questions about Dementia together, previously known as Living with dementia magazine? Maybe you'd like to know how they worked with people affected by dementia to come up with the magazine's new name, or how they decide on the articles to publish each issue? Danny and Gareth from the magazine team will be on hand to answer your questions in this thread on Wednesday 25 April between 4-5pm.

    Feel free to post any questions between now and then, and we'll answer them next Wednesday.

Coming to the end of our journey

Discussion in 'End of life care' started by Best74, Apr 14, 2018 at 5:26 PM.

  1. Best74

    Best74 Registered User

    Nov 6, 2014
    8
    After 10 years, my Dad is coming to the end of his journey with Alzheimer’s.
    He is now being nursed in bed, only having sips of water and hasnt eaten for a few days. We had a phone call yesterday to say his breathing had changed but he remains comfortable . I guess no one knows when the end will be but it’s heartbreaking. We have stayed for 2 days by his side and do not want to leave him but I have a young family and being the only child, I’m finding things very difficult . I’m not really asking for advice , just wanted to explain how I feel . Thank you for reading x
     
  2. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,138
    England
    Just wanted to say, don't worry about 'having to be there for the final moments' My mother had 19 emergencies in those last 18 months and each time I sat 'in vigil', yet when it came to that last emergency I 'missed' it by a couple of minutes.

    I read up on ensuring one has said everything one needed to say, including the 5 important things to say to someone who is dying
    The Five Things to Say:
    THANK YOU…
    I LOVE YOU…
    I’LL NEVER FORGET…
    I’M SORRY…
    I FORGIVE YOU… and therefore when it came to it I knew that there was nothing left unsaid and nothing I wished I'd had time to say.

    Then just get on with your own life as you know your LO would want.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    55,391
    Dundee
    I'm so sorry to read your news @Best74.

    It's the hardest of times. Thinking of you and wishing you strength. Also wishing your dad peace.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    5,637
    Female
    South coast
    I stayed with mum for 2 days, but I had to go and check on OH and mum passed away within 10 mins of me leaving. One of the carers said that she thought that mum had been waiting for me to go before passing.

    What matters is that you were there for him in his life. Whether you are actually there at the final second is of less importance.
     
  5. Primula1

    Primula1 New member

    Mar 20, 2018
    8
    I am in the same position. Mom, 86, is in hospital after having a fall and pneumonia and has deteriorated really quickly is now not eating etc. I am also an only child and feel guilty leaving her to go home but she doesn’t seem to know I am there and I feel I can only sit there so long without feeling even more depressed and stressed. So I go home to try and rest a bit before the next day.
     
  6. worried2

    worried2 Registered User

    Aug 1, 2010
    17
    It’s such a difficult time, but please don’t feel guilty. You can’t physically be there 24/7, you need to look after yourself too. Thinking of you and wishing you strength to cope with the days and weeks ahead. Xx
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    65,573
    Kent
    Those of us who`ve lost do know how you feel and have every symapthy. I hope your dad is painfree and comfortable .
     
  8. BIWO

    BIWO Registered User

    Sep 1, 2016
    73
    Bedfordshire
    I feel for you - my Mum was in hospital towards the end - the night before she died I am sure they knew EOL was coming - they double checked phone numbers and wanted to know my mobile was permanently on, For sure nobody slept that night in my house and we got the call to go to the hospital at 6am. You can't possibly be there 24X7 - we were on on the end of 10 day hospital vigil - so could have died at any time. My Mums breathing (night before my Mum died - it became more laboured) - I called my brothers out - as thought the end was coming and the three of us had a reasonable night around the bed remembering and chatting over the past. A bit surreal really but it was the only way we could deal with it. I wish you well in these difficult times.
     
  9. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    132
    This is always challenging. A culmination of all that has gone before, termed 'end stage Alzheimer's', which leaves you very open to every emotion under the sun, bearing down upon you all at the same time. My circumstances were different. A son, living with his mother, as carer and guardian, after the father died. Twelve years. Then, Alzheimer's and all that the disease demands of you. Finally, 'end stage'. One month, in a side room in hospital. Me sleeping alongside my mother in a reclining 'chair' . One month in which she refused both food and drink. One month, every single day, tending to her, comforting her during 'procedures'. In all that time, a profound sense of worth, for all the right reasons. No uncomfortable thoughts nor regrets, no 'gaps' in the cycle of care. The long and at times, exceedingly demanding role of Carer, now drawing to its close. So yes, one understands just why you wished to explain how you feel. And you have a young family (I did not) which compounds things, as they need you. And you are an 'only child', which also engenders very special feelings in respect of your childhood and upbringing with a mother and father. My mother - an only child - often explained just what that meant to her, having no siblings. Her father was a great 'friend' besides being a wonderful father. The one overriding factor in all of this and it remains an absolute truth, is that the moments in a life which are joyous, the times spent with a parent when you laugh or at times cry, when you feel their love and affection enveloping you when you are unhappy, or sickly, that very special 'bond' which is unique between you and which stays with you always - none of that can ever die. Nothing can change it, nothing can threaten it. Ever. So, at this time and with all its seemingly unbearable elements which surround you ,try and let that act as a buttress against the overwhelming actuality of things now. With warmest wishes.
     

Share This Page