Very rapid decline

Discussion in 'End of life care' started by Timeout, Sep 19, 2015.

  1. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Hello, Ive been lurking on these forums for a few years, started off in the Middle stages bit where I told of mum walking endlessly to the shops, food storing and other odd behaviour - through to when she got taken to a care home 3 years ago but now I find myself in the end stage section as I believe this is now where we are heading to.

    Since Christmas we have seen a big decline - rapid loss of mobility, severe aggression when personal care has been given and a general loss of interest in food. She appears not to 'see' anything and prefers to stay in bed if she can sleeping and dozing her time away. The aggression meant she had been trialed on a few different drugs and they seem to have found the one that keeps her calm but it also seems to have 'taken everything away'

    She barely speaks now, is doubly incontinent, has to have help to stand and shuffle along - she has had 8 admissions to A&E for falls since January. She sleeps an awful lot and needs help and constant prompting to eat and drink although her swallow is still ok. It the emptiness I can't bear - she looks at you but theres nothing in her eyes, nothing at all. When you talk to her you can tell she doesn't understand anything at all and just being in this world seems a struggle to her - she looks so bewildered and alone.

    Perversely all I want is her peaceful release. I do hope this isn't going to go on much longer, the visits are becoming so painful and its 9 years now that she's had this dreadful illness. Sorry , this post doesnt make sense but it helps to get it down somewhere.
     
  2. lin1

    lin1 Registered User

    Jan 14, 2010
    9,320
    Female
    East Kent
    Hello Timeout.
    On the contrary your post makes perfect sense to me and probably everyone reading too.
    It's so hard isn't it
    ((((((HUGS))))))

    I'm pleased that the medication has helped your Mum, but maybe it needs to be reviewed , I'm wondering if perhaps now your Mum may need a lower dose now.
     
  3. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    I cant add anything to help but want you to know we all feel for you. Keep posting as no-one other than other TPers really understand.

    Sending you strength to go on.
    Love Quilty
     
  4. turbo

    turbo Registered User

    Aug 1, 2007
    3,851
    Hello Timeout, yes your post does make sense. It must be so hard to see your mum's rapid decline. Thinking of you and your mum.
     
  5. garnuft

    garnuft Registered User

    Sep 7, 2012
    6,585
    Makes absolute sense to me.

    I have told my son I want to be drugged into oblivion if I am in a distressed state.

    I would take some comfort from knowing that my loved one was at peace, even if the cost of that peace was to mean that they were distanced from me.

    It's so hard.

    Very best wishes to you and your little Mum. X


    Sent from my iPhone using Talking Point
     
  6. MeganCat

    MeganCat Registered User

    Jan 29, 2013
    356
    South Wales
    I completely understand how you feel, I'm in a similar position, occasionally mum will smile at me and that's lovely when it happens, but the majority of the time she is "empty" as you say. Likewise mums decline has been since a bout of flu at new year, this time last year I could still take her out to the garden centre and I felt like there was some quality to her life. The visits are tough I agree, I feel guilty for clock watching and answering the ' how's mum?' Questions from friends and colleagues
    Sending you hugs and empathy x
     
  7. nannylondon

    nannylondon Registered User

    Apr 7, 2014
    2,475
    London
    I understand how you feel my husband decline in past few months has been drastic has no mobility doubly incontinent speech is incoherent and sleeps a lot he is in a care home and I do get the odd smile but know this isn't what he would have wanted then I feel guilty about my feelings but I wish this bl!!!st disease would just let him go
     
  8. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    307
    Timeout - reading your post is like reading a mirror of my mum and like you I want my mum to fall quietly into an enternal sleep and go to her beloved Scoobie Dog whose waiting for her at Rainbow Bridge and suffer no more.

    I have no advice but a big big big hug and to say you are not alone in how you feel. xxxx
     
  9. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Thanks to you all :)

    Another day, another visit where she is very, very tired, uncomfortably sat up at the dining table. She did eat some cake but shes barely awake in doing so.

    I knew I could come here and you'd all understand how I feel when I say I'd rather see her go. Thanks again and love to you all x
     
  10. nellen

    nellen Registered User

    Mar 17, 2009
    96
    Derbyshire
    Hello Timeout, I understand exactly how you are feeling. My mum has declined very rapidly after a 3 month spell in hospital where she had a bad bout of shingles and shockingly she seems to have deteriorated since - shes now in a home with 24 hour nursing care. Mum is sleeping a lot - often as if she's comatose, she often seems not to be "with us" and finds it hard to articulate her thoughts and at times her speech is garbled, although we get occasionally get glimpses of her old self and her bantering. She declines food and struggles with digesting even soft food - burping and retching afterwards. My mum has lost her mobility too.
    I find it very hard, like you, to see her and frequently wish it would end sooner rather than later, it's like living in a limbo state. I know that if she had a choice my mum wouldn't want to carry on living in this half life. What I find really hard is that I don't know how long this will last.
     
  11. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Well, just to update a little - the last 2 weeks have seen something of a miracle improvement! She has been getting up from bed each day, sitting up at the dining table in a wheelchair and eating cake, trifle, pretty much anything sweet she can get her hands on! She is drinking much better and generally more 'with it' than shes been for the past few months.

    I'm wondering if the constant medication changes are all now working their way out of her system and things are starting to settle a bit. The next thing is that the CPN now tells us they are dropping her Aricept down from 10mg to 5 mg as they don't think its working at all now.

    Lets see if that changes anything. Talk about a roller-coaster! I honestly thought she was at end stage and she would'nt see Christmas, now I'm not so sure. Its lovely to have her back to a little of how she was, even if only its for a short time.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    That happened to my MIL and Ive heard of it happening to others too.
    Form some good memories during this time :)
     

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