One day at a time now ...

Discussion in 'I care for a person with dementia' started by Toony Oony, Aug 10, 2019.

  1. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    In the last 10 days, Mum has taken a nose dive. She has Vascular Dementia and I have never really noticed the sudden shelving of ability that all the books say happens with that particular form, until now. The drop is amazing, despite Mum already exhibiting most of the final stage markers.
    It started with a change in her conversation - it had been pretty random for ages but almost overnight it suddenly reduced to her saying just odd words or short strings of unintelligible words and her cognition just vanished. She just looked blank with obviously no understanding of what was being said. She did not seem to recognise her favourite carers, or simple instructions and the usual loving responses that Mum gave were gone. The CH staff were concerned at the speed of the change in Mum, as she turned very rapidly into an empty shell.
    Mum has remained in bed from then on. She sleeps most of the day and all night. When I have visited she has woken for a short time, seems to recognise me and speaks a little that makes no sense, but clearly tells me how much she loves me. She seems so, so tired. The light has literally gone out in her eyes.
    The Dr examined her yesterday but there is no obvious cause. Her chest is clear, and he could find nothing physically wrong. He told the CH to leave her in bed if that's what she wanted. She is 90+ so her choice. They are changing her mattress to an air mattress and 'keeping her clean and comfortable'. She is eating and drinking a little.

    I have read enough on this forum to know what this is leading to ... and to know that there is no timescale.
    I just wanted to start this thread as I expect I will be posting more in the coming days on it, and will be grateful for the support of TP.

  2. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    East of England
    My heart goes out to you @Toony Oony as I struggle too with the continuing effects of his Alzheimer’s disease, which has similar but different symptoms to those you describe but nothing like as advanced. I wish you the strength you need to keep going. It’s heartbreaking.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Its the saddest time @Toony Oony when all you can do is watch and wait.
  4. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    I’m so sorry @Toony Oony . I struggled with the “empty shell” phase but was lucky that my dad didn’t suffer this for long. I hope the end, if this is what it is, is kind to you and your mum.
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
  6. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    Many thanks for your kind replies @Grahamstown @Grannie G @Bunpoots and @Izzy

    A bit down this morning having spent 2 x hour long conversations with Mum's oldest friend who is 95, explaining that it was really not such a good idea for her to come and visit Mum for the whole day (she gets a taxi drop off and pick up from quite a distance, bless her). That Mum was unlikely to 'get up and have a chat - because she will remember me' and tell her for the umpteenth time that Mum would not be getting better :(
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    ((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))) @Toony Oony
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    North West
    My thoughts are with you :(
  9. myss

    myss Registered User

    Jan 14, 2018
    Oh @Toony Oony I'm sorry to hear that this moment had hit you so quickly like that. At this stage, that advice is all anyone can do and be thankful that she is as comfortable as possible as this time. All the best to you xx.
  10. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    So sorry @Toony Oony As you said that is a very sudden decline. She looked like she was having fun at the 'disco' last week. I hope she is kept as comfortable as she can be, and that you manage to dissuade her friend from visiting for a lengthy period.
    Thinking of you.
  11. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    So sorry you are going through this. We know it’s inevitable but that does not make it any easier and we don’t know for how long we will be waiting for the inevitable. Take care of yourself and maybe tell her lovely friend that a short visit would be better for both your Mum and herself. She might appreciate a chance to say her goodbyes even if she is days or weeks early in saying them.,

    Thinking of you and wishing you peace.
  12. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    I’m in shreds reading this sad, dignified post.

    How wonderful to read of the love between your dear Mum and you. Whatever else fades, that never will.

    Bless you both.
  13. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    This is such a difficult stage to go through @Toony Oony - I know exactly what you mean when you say that the light has gone out of your mum's eyes, it was one of the most heart-wrenching things I noticed in my husband at this stage.

    Keeping you in my thoughts.
  14. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Thinking of you
  15. Feistywoman

    Feistywoman Registered User

    Aug 11, 2018
    So sad, my thoughts are with you
  16. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    Wishing you strength for the coming days
  17. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    Thank you all so much for your very kind and thoughtful replies.
    As I said to a friend ‘this awful disease does not come with an instruction manual’ so I am stepping tentatively into the unknown now. I am only grateful that Mum seems calm and peaceful at the moment. I will take one day at a time and update when appropriate.
    Thank you all so much for your love and support
  18. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
  19. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    Another few days, another few trips up and down on the carousel that is dementia. Everything changes so quickly. Back and forth, up and down. Just writing this for myself really as a bit of a diary:
    Mum's friend decided to visit on Sunday and arrived early. My daughter usually visits Mum at the weekend and was surprised to see Mum dressed and in her wheelchair with her friend in the Lounge. This was a surprise as Mum couldn't stay awake and had remained in bed throughout the previous week. Daughter said that it was very obvious that her Nan had taken a big downturn, but although she was very quiet, she seemed happy. However the friend's 4.5 hour visit tired Mum out and she is back in bed today.
    She is in bed but seems quite comfortable and happy, but her hands were cold - nothing else just her hands. Easily remedied, I held them and they slowly warmed up. Mum woke when I arrived and we had a lovely hour and a half. The staff at the CH are really looking after her well. Since Mum's downturn she has been insatiably thirsty - and her mouth has been very dry - previously her mouth was always wet. The head of dementia care for the CH group came in for a chat with me, and when I mentioned it she reckons that this last progression may have affected Mum's pituitary gland which would explain the thirst. Something else learned.
    Mum now sees people in the room - 2 men today. Her speech has made little sense for a long while - but now instead of words a great deal is just sounds, or else she repeats a pair of numbers over and over (it may be coincidence but it happens to be my Dad's old work number back in the day when you had an exchange name and a 4 digit number - 3030) she occasionally says strings of rhyming words: mill;pill;bill;will;till etc. Despite this the 'pleasantries' have returned a little - a smile for the staff, a little wave and a few loving words to me.
    All the time she is happy and comfortable - whether asleep or awake, I am content.
  20. AliceA

    AliceA Registered User

    May 27, 2016
    Blessings and prayers to you both at this time. Toony Oony. X

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