Finding it hard to process progression

Discussion in 'End of life care' started by Beanie01, Oct 20, 2019.

  1. Beanie01

    Beanie01 Registered User

    Dec 4, 2017
    18
    Mum is 76 and was diagnosed with mixed dementia (Alzheimer’s and vascular) about 2 years ago. She was living on her own until March this year, with carers twice a day (she refused all types of personal care so they simply put her pills out and washed the dishes!) and attended a day centre for 5 days per week, which she loved. After she’d been attending the day centre for about 6 weeks, my sister and I, with agreement of CMHT and social services, came to the conclusion that she needed full time care and she was moved into a care home. Initially, her care home was near my sister in the north west, but whilst the staff were great, it didn’t really meet mums needs. There was no outside space, her room was in the converted attic and it was so loud! Mum was distressed. We found a home near me in the south west, social services agreed to meet the new cost and we moved mum in April. All was going well for a few weeks, but then she started to lash out at staff. We never saw the behaviour and neither did her new Community Psych nurse. Mum started to have falls, and then after in she seemed to simply forget how to walk. She was admitted to hospital with a raging UTI which they managed to control with IV gentamicin then oral antibiotics. She was discharged to a nursing home, thankfully a 2 minute walk from my house. In hospital she had walked with a frame, but since discharge she has never walked again. That was on 20/09/19. She was back in hospital for just over a week with sepsis, pneumonia and diverticulitis and was discharged again with oral antibiotics.
    Fast forward 8 days and we’re sat holding her hand, trying to make sure she’s not in any pain, ande telling her how much we love her. I can’t stop crying. But I know she can still hear us so I’m trying not to. 6 weeks ago she was walking with one stick and shovelling anything sweet down her. We knew there was only one way out of this hideous disease, but it’s been so quick! She’s now had 2 doses of diamorphine and midazolam, and we’re panicking that we’re shuffling her off before her time. The nursing staff in her home are lovely, and experienced in palliative care, but we’ve had to point out that she’s distressed/in pain for them to give the meds. The only reason we know the signs is we lost our dad to cancer 18 months ago, 5 weeks after diagnosis
    Anyway, I’ve probably rambled far too much now. I know many of you have experienced these circumstances and come through the other side, so I shall too! Sorry for rambling x
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,735
    Kent
    Hello @Beanie01

    If your mum is officially on palliative care there is no reason why she should be in pain. When my husband was on palliative care he was fitted with a syringe driver which provided a controlled dose of medication to keep him pain free and comfortable.

    It is a shock to witness such a rapid deterioration and painful for you. It does happen though.

    Talk to the nurses about palliative care. It might help to make things easier all round.

    No you are not. You are just trying to keep her pain free and comfortable.
     
  3. Beanie01

    Beanie01 Registered User

    Dec 4, 2017
    18
    Thanks for your reply Grannie G, it’s just so hard watching my lovely mum go through this
     
  4. Kay111

    Kay111 Registered User

    Sep 19, 2019
    95
    What an upsetting and stressful time for you @Beanie01 - I'm afraid I have no advice for you, and I'm sure there are plenty on here who will do, but just wanted to send you some strength and support.

    Please also don't ever feel like you're rambling, we're here to listen xxx
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,890
    Female
    Scotland
    Your experience is very like ours in that my husband declined rapidly after a hip break and stay in hospital. Within days of moving to a very nice nursing home he died. It was obvious to me from the start what the outcome would be but no one would say the words. I can only conclude it is discouraged but I feel the result is an inappropriate attitude of “positivity” in the face of a serious situation.

    My husband also was given midazolam and diamorphine and I’m not convinced it was very effective.

    Hanging on to the knowledge that you have done your best to make the right decisions is really all you can do. We are fairly helpless in the face of death however inevitable it may be.

    Good wishes and strength to you all.
     
  6. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,305
    Merseyside
    It’s very distressing to watch our loved ones fade away. I wish you strength @Beanie01
     
  7. Beanie01

    Beanie01 Registered User

    Dec 4, 2017
    18
    Thank you all. Strength comes and goes, but I know many people go through this every day. Xxx
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Sometimes the decline can be very sudden and infections of any sort can progress the dementia.
    My mum had a hip fracture and this can also progress dementia, which it did in mums case and she also passed away quite quickly afterwards.
    You are in that horrible twilight zone when you just feel that you are waiting.
    If your mum is in pain then painkillers are the way to go, so that she is not in distress.
    (((((((((((hugs))))))))))))))
     
  9. Beanie01

    Beanie01 Registered User

    Dec 4, 2017
    18
    Mum passed away about 2:15. I’m heartbroken, but she is no longer suffering. She was aware we were with her, and she knew who we were right to the end. We were lucky in that respect. Thank you all for your words of support.
     
  10. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,305
    Merseyside
    I’m so sorry @Beanie01. My thoughts are with you.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    (((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))))) @Beanie01
     
  12. Beanie01

    Beanie01 Registered User

    Dec 4, 2017
    18
    Thank you
     
  13. Beanie01

    Beanie01 Registered User

    Dec 4, 2017
    18
    Thank you x
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    sad news @Beanie01
    my condolences on your loss
    I'm glad (if that's the right word) that she knew you were with her, and hope there's comfort in that for you
     
  15. Beanie01

    Beanie01 Registered User

    Dec 4, 2017
    18
    Thank you @Shedrech, there is some comfort that she knew we were there and she knew she was/is loved so so much
     
  16. Stripey3

    Stripey3 Registered User

    May 29, 2019
    28
    My condolences for your loss.
    Take comfort from the fact that she knew you were there and her suffering is over.
    She’s is pain free and at peace now.

    Thoughts are with you
     
  17. marionq

    marionq Registered User

    Apr 24, 2013
    5,890
    Female
    Scotland
    For her to be aware right to the end and to know you were there and loved her is my idea of a "good death". We can't ask for more.
     
  18. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,517
    Female
    England
    My condolences @Beanie01, wishing you strength in the days and weeks to come.
     
  19. Kay111

    Kay111 Registered User

    Sep 19, 2019
    95
    I'm very sorry @Beanie01 . Sending love and strength to you and yours xxx
     
  20. pevensey

    pevensey Registered User

    Feb 14, 2012
    194
    Female
    South East Coast.
    I'm so sorry for your loss@beanie01, this must have been a devastating time for you.
    Love n Hugs
     

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