Thread Status:
Not open for further replies.

And so it begins.....

Discussion in 'End of life care' started by Kikki21, Mar 19, 2019.

  1. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    Eek @lis66 another wee mum like mine! I know my mum has had dementia longer than the official diagnosis. We were talking about that tonight & that she displayed oddities in her behaviour going back to 2012 at least. She wasn’t officially diagnosed until 2016! Xx
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    I send you Prayer and love, it is the hardest time. Care for yourself too. X
     
  3. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    Thank you. I feel battered by this process already. X
     
  4. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,062
    Female
    Chester
    Try to be kind to yourself, easier said than done. Maybe take a break from your mum's bedside in the hospital cafe whilst you are there, as keeping vigil is emotionally draining.
     
  5. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    The hospital is massive so it takes some time to even get to the cafe from where my mum is although we are meant to be entitled to food & drink at this time. We get ready & go in for a few hours midday/early afternoon time as my mum tends to be responsive then & then go & have a break at home as we are only 10 mins away by car & come back for a bit in the early evening. I guess I want to make the most of the time that my mum is responsive. Although each time I go in, it is making it harder to leave her each time because I think it could be the last time.
    I’m scared because I don’t want her to be scared. She said yesterday, i’m not well as clearly she has that awareness still there xx
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,205
    Female
    South coast
    Ive lost track @Kikki21 - did you manage to get hold of the Polish priest?
    Mum was so much calmer after her vicar had been and prayed with her, she wasnt scared and slipped into unconsciousness soon after.
     
  7. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    Yes @canary the Polish priest came 2 evenings ago as we were really worried about how unresponsive she was. It was the first day, she was put on the syringe driver. Then she surprised me by saying that she knew the priest had come yesterday. She didn’t remember anyone else coming. I have just rung the hospital & there is no change. She had a settled night & she has had a drink, they have ordered her some soup for lunch plus yoghurt & ice cream, topped up her morphine & she is comfortable so it seems that her rally is continuing.
    I don’t know what to think anymore to be honest xx
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,205
    Female
    South coast
    I can understand that.
    Mum was like this after pneumonia and again after her stroke. I was told on both occasions that she was at end of life and then she bounced back, but she never got as far as a syringe driver on either of those times.
     
  9. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    I guess my mum’s body is using her fat reserves & as she has not been eating so I guess this is why people can survive so long on so very little.
    My mum has been on antibiotics a lot during recent months so it could be that having more antibiotics has really upset her digestive system & caused the sickness within the hospital.

    The issues are how bad are her kidneys now & she still has aspiration pneumonia. She was failing to respond to the antibiotics & not producing lots of urine even though she was on IV fluids.
    Do you introduce the fluids back, do you peg feed her to try & get her strength back so she can fight the infections?

    I know it is also about quality of life too even if all this does turn around x
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,205
    Female
    South coast
    I would not do PEG feeding. It involves surgery, which is never a good idea with dementia, and with mum I would far, far rather that nature took its course. I was so glad that mum did not reach the final stage with immobility and muscle contractures. When the dementia becomes advanced the immune system doesnt work properly and no amount of feeding will get that back.

    I think you will just have to wait it out and see what happens.
     
  11. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    She wouldn’t survive any op so peg feeding would be out. It seems you can go on for a few weeks with kidney failure as well. It’s so awfully cruel. Trust my mum to be hanging on like this as she has always been very stubborn.
    I think I need to ask the dr just where they think she is in all this as I think they were still doing tests etc.
    I’ve taken all my vitamins today plus my Rescue Remedy & feel a bit better in myself. We are having some lunch before going in.
     
  12. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    My mum seems to have gone back to how she was on Monday. She seems more unsettled. I asked for some more morphine earlier but she just whimpered like she was in pain in her sleep.
    She has had a bit of tea, a bit of water, a bit of soup, a bit of yoghurt but seems mainly sleepy today.

    She did have a busy day yesterday so it might have tired her out. The other cousin T came today ( the one with the awful son in law) with her grown up son, K. They didn’t stay too long but said they would try to come in tomorrow.

    I said that was fine but i’m scared that tomorrow will be too late to be honest. She looks more pale today & cooler to the skin. Dementia is so cruel from hoping she would be rallying yesterday to today. Her breathing pattern is still pretty steady though but it seems that all that is happening that the inevitable will be prolonged x
     
  13. hilaryd

    hilaryd Registered User

    May 28, 2017
    84
    Thinking of you @Kikki21 - so hard to be going through all these ups and downs at this stage - as if you've not had enough of those over the years already! I hope the waiting isn't too long, and hope you feel the support of all the TP people on the road beside you. I've often wished that there was some way to meet everyone in the flesh - I'd have been lost without the kindness and advice I received here.

    And I so agree with @YorkshireLass - politicians etc should be seeing dementia at first hand.
     
  14. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    Thank you @hilaryd - I think we are getting closer to losing her today for sure. She is pretty fast off now asleep & I just wish that complete unconsciousness could come & she could be released. It seems like there are some changes going on internally today x
     
  15. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    198
    Female
    Ilkley
    @Kikki21 thinking of you and hope your mum stays calm and peaceful. Glad the Rescue Remedy had some effect for you too xxxx
     
  16. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,319
    Thinking of you and sending lots of hugs your way.
     
  17. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    Thank you @YorkshireLass we have come home for a bit. Started to find it a bit intense over the past hour. I’m worried that something is going on internally with my mum & I might have been imagining it but I think her breathing pattern was changing slightly. Taken quite a bit of Rescue Remedy to feel calmer just now xxxx
     
  18. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    Thank you. Honestly feeling pretty scared right now x
     
  19. Moose1966

    Moose1966 Registered User

    Feb 10, 2017
    96
    Female
    Staffordshire
    Keep strong and be there if you can but you must look after yourself . Thoughts with you and your mum , phew it’s so hard I am feeling drained and I’m not quite as far down the path as you , not far behind I fear ❤️
     
  20. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    Thank you. I have had a bit of a headache all day today & no wonder & it is often pretty hot on that ward so you do need some time away. We live 10 mins away from the hospital by car so can get there pretty quickly so trying to rehydrate & taken some pain killers too. The other half has tried to keep on top of keeping the kitchen tidy as well as cook each night but it doesn’t look great at the moment so I might go & occupy myself with that in a moment.

    I am suffering with insomnia as well with the stress of it all so find it difficult to get off to sleep as I think that I will get a phone call in the night to get to the hospital. X
     
Thread Status:
Not open for further replies.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.