The rollercoaster is off again...

Discussion in 'End of life care' started by Timeout, Jun 4, 2018.

  1. Timeout

    Timeout Registered User

    Feb 10, 2012
    203
    Mum has been stable for two and a half years now, she was placed on end of life care then after all but passing away from kidney failure but apart from the odd absence seizure she's been coasting along. She's had Alzheimer's for about 12 or 13 years now, she's totally immobile, doubly incontinent, can only say a few words and they don't make sense. I'm not sure if she knows who we are but she seems happy to see us. Her appetite is excellent and she hasn't lost any weight, she's quite a big lady still.

    Last Wednesday she had another absence seizure but the care home now know to put her to bed - she's no longer taken to hospital every time it happens as they never find anything wrong so they put her to bed.
    Thursday we had a call to say she had become jaundiced, that she was quieter than usual and sleepy but still eating ok, not lots but enough. Bloods were taken Friday and we are still waiting for results. We have visited and she's being nursed in bed, sleeping a lot but wakes and eats fine when it's offered.

    Dr google is throwing up lots of reasons for the jaundice, liver problems where she'd be disinterested in food, itching, weight loss etc but she has none of these. Gallbladder, pancreas, etc would all cause pain which she doesn't appear to be showing, she's not lost her appetite she's just tired and very quiet. And yellow. It's a mystery. Has anyone else experienced this? Any ideas and is this the last decline? She's been ill for s long but I'm still not ready for her to go. I just hope we don't have to make any difficult decisions as to whether to operate etc. Horrible times.
     
  2. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    No idea what it could be I'm afraid, but couldn't just read and not post.
    I agree when they seem to 'hold on' for so long through so much poor health, everytime they take a dive one wonders , "Will this be the last time?"
    If she's end-of-life palliative care with no hospital I can't imagine they'd be considering any operations though.

    With my mother it was a real roller-coaster those last 18 months, but the end when it came was in fact gentle and calm.
     
  3. Timeout

    Timeout Registered User

    Feb 10, 2012
    203
    Thanks Lemonjuice, we've posted at similar times over the years so I know how long a struggle your mum had too. Part of me hopes this is the 'event' that will take her to free her from this disgusting disease but she keeps eating so doesn't appear ready to give up yet. Mind you, how much of the eating is a conscious decision to eat or a reflex to open her mouth when food or a spoon is offered I don't know.

    Watching and waiting again, been here so many times now, it's exhausting x
     
  4. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #4 lemonjuice, Jun 4, 2018
    Last edited: Jun 4, 2018
    Yes, in fact, at that 19th emergency I sat by my mother's bed and said, "I think we've had enough dress rehearsals now. Next time this happens I'm not saying I won't come and visit you, but I've had enough of dropping everything to rush over and sit 'in vigil'.
    So that 20th time I didn't rush straight over and as her room was always open and I have a particularly loud voice I reckon she heard me as I walked with the Nurse along the corridor, who'd warned me she'd been Cheyne-stroke breathing again and thought, 'Better go for 'a final performance', because when we entered her room she never took another breath. Meant I was there at the end, but not sitting listening and waiting. God bless her. :)
     
  5. fullmoon

    fullmoon Registered User

    May 22, 2013
    331
    My situation is so similar:

    My mum is 86, she has been living in an EMI care home for nearly 4.5years.
    Her communication skills were poor going there and have been almost non-existent for over 2years and she became doubly incontinent not long after admittance. She lost a great deal of weight through constantly walking the corridors and rooms. A little over a year ago she fell and broke her right hip. She underwent surgery and was in hospital for many weeks later as other issues arose. After this she was transferred to EMI nursing. Amazingly she did learn to walk again but became increasingly frail and was eventually confined to a wheelchair. In April I was told she could no longer transfer and had been assessed for a hoist.
    Last Wednesday evening I received a call late at night to say paramedics had been called due to mum having difficulty breathing (earlier in the month she had received antibiotics for a chest infection). When I arrived the paramedics said she was showing all the signs of sepsis and wanted to take her to hospital. After last years experience I was somewhat reluctant. Mum has a DNR in place and I wish her to go peacefully in the care Home. However, after discussion I agreed. The doctor at the hospital assessed her - SATs were 80 and she had a very high heart rate. He said he saw no point in treating my mum and sent her back to the care Home for palliative care. I totally agreed with this decision as my mum has no quality of life left at all. On Friday morning her condition declined further and the Home called the GP he instructed the Home to stop all medication and prescribed Subcutaneous diamorphine injections to be administered upon signs of distress/pain. Friday all through the night her breathing was very laboured and heart rate very erratic. Saturday morning her breathing seemed easier. Between Friday and early hours of this morning she had 5 injections. She still would take small amounts of liquid but not food and was semi-conscious. Today however she has been far more awake, been smiling, drank over a pint of liquid throughout the morning and evening and even ate a pot and a half of yogurt! The doctor who came to review was apparently astonished and so are we! The priest had even been out to give her the sacarament. The nurse in the care Home has told me this evening that the doctor is comingtomorrow and will probably take my mother off diamorphine and prescribe pain patches. Her SATs are now 90 although her heart rate is high.
    I feel such a terrible person I just want my mother to finally find peace - she has no quality of lifewhatsoever.
    I am concern that if a sudden relapse occurs that she will have no access to the diamorphine. Is my mother likely to continue to improve or is this just a temporary improvement? As anybody experienced this happening on end of life care?
     
  6. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Not quite like your mother fullmoon, but yes, a downturn with a 'sudden' unexpected improvement' at least physically.

    As I mentioned above we had many, many emergencies, when my mother could have died and we had many anxious hours, but within 48 hours had' recovered' enough to be 'out of danger'.

    It was certainly 5 weeks before she died that we experienced some Cheyne-Stokes breathing and she was given a syringe -driver. Within 2 days she was off the driver and breathing normally again. o_O

    Oh, how often during those last couple of years did I wish it all 'just to be over' for her, as she had no QoL but in her former words watching her sister in a similar condition, "That's not living, that's just existence.", going through the bodily motions.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    9,633
    Female
    South coast
    Mum had 2 other occasions in the year before she passed away when she stopped eating and drinking and I had been told that she was on end of life care - once after pneumonia and then again after a stroke, but each time she recovered.
    It seems to happen to people with dementia more than you would expect.
     
  8. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    I've often been known to say that it almost seems as if the dementia provides some sort of immunity against any downturn, infection etc becoming fatal.
     
  9. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    354
    One thing which becomes quite clear after a time, when observing patients with dementia, is that there are no clear cut answers as such. What seems like an inevitable decline,can change and can at times baffle the clinicians. Barring obvious physical deterioration or what is actually a process monitored and without doubt thus a decline - there are those surprises. Someone with mid-stage dementia is admitted to hospital, quite unwell and by all accounts, coming to the end of life. Then, a few weeks on and they are back at the Care Home and improving and people are aghast. We know that the dementia moves in one direction, but so many other factors can arise which are something of a mystery. By the same token, I have known cases where a young person with dementia has declined within a very short time, the decline being motivated in the main by the dementia. The reluctance to take food or drink is certainly common towards 'end of life' as is much sleeping - but there are those anomalies. And it is always quite staggering, when you witness the sheer determination of a person to continue
    living despite everything to the contrary.

    Again, the key word at these these times must be 'comfort' for the loved one concerned. As to those who care for or await any outcome, having the will and that constant acceptance of what has become a very long and demanding journey, with all its variants and profound challenges on the soul and heart, requires reserves of energy which are rarely called upon. But as the child of a parent, you will find those resources just as you did before, despite everything.
     
  10. Timeout

    Timeout Registered User

    Feb 10, 2012
    203
    Thanks all, GP will take more bloods as he feels it could be gallstones or even cancer - he just doesn't know. She's still being nursed in bed and being made comfortable but eating well!
     
  11. fullmoon

    fullmoon Registered User

    May 22, 2013
    331
    Thoughts are with you as I continue the vigil by my mothers bedside
     
  12. yak55

    yak55 Registered User

    Jun 15, 2015
    614
    My healthy 85 year old dad who played golf three times a week became jaundiced and had bile duct cancer
     
  13. Timeout

    Timeout Registered User

    Feb 10, 2012
    203
    Well it turned out to be gallstones, it cleared itself after a few days and she's now back to normal, eating and drinking well. It's torture for us family, we get the news, mentally prepare yourself for this maybe being 'it' then she recovers. Not that I don't want her to recover but on the other hand it just prolongs this disgusting disease again. Mixed feelings, none of them pleasant.
     
  14. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Don't feel guilty. I can so identify with those feelings. My mother had 19 emergencies during her last 18 months and in the end you just hate the disease even more, for somehow just extending the misery they have to endure and yes we just pray that their end ill come sooner rather than later,
     
  15. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,946
    Female
    East Midlands
    It’s awful how this disease takes it out of everything & everyone. Lots of us have been there. My mum sort of has a quality of life but not really. You see glimmers of how she was sometimes but the dementia has really taken a grip now.
     
  16. Timeout

    Timeout Registered User

    Feb 10, 2012
    203
    We are back to worrying, last week GP was called again and a chest infection diagnosed. Antibiotics given and she's been put to bed. The day later a huge sore appeared on Mums foot which has started leaking fluid. GP came again and the infection has spread up her leg and to the other leg so they have been bandaged and she's on a different lot of antibiotics. She's comfortable and eating ok though. How much more can she tolerate? What else can go wrong and yet she keeps going. Heartbreaking.
     
  17. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Oh Timeout, I can so identify with that. My mother sufferd so many emergencies and downturns in those last 18 months and each time I thought, "How much more can she have to suffer?" And how often I prayed for 'this one to be the last one'' so she couldn't suffer more. :(
     
  18. kindred

    kindred Registered User

    Apr 8, 2018
    2,126
    I am so moved by your description of how staggering it is to witness the determination of a person to continue living despite everything to the contrary. My mum had MS from her early thirties to when she died aged 72 and we looked after her at home. Wasn't much alternative back then, anyway. She was so profoundly disabled but her need to stay alive was staggering. From this I kind of developed a philosophy that if consciousness gives pleasure, however momentarily, it is to be maintained. My own grip on living is nothing, nothing like as strong. I so agree with you.
    Thank you. Warmest, Geraldine aka kindred.
     
  19. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    354
    Geraldine, there is something about the human spirit which is akin to the vast and mostly unknown universe. In that respect it is nigh on impossible to pinpoint the whys and wherefores of just how some people survive through thick and thin, whilst others succumb. Some of this we must assume is due to genetics and 'luck', but that "something else" is a mystery. One hears of extraordinary determination in a frail soul, to maintain life until a chosen loved one reaches the bedside and then they pass away. Or an unexpected 'turn around' in health, again unexplained. The stories are
    many.

    At the heart of all this, especially in respect of dementia, is the rather wonderful capacity of a given person living with that disease, however subdued, restricted, cocooned by that dementia, to continue their hold on life until the very end. One sees this in the Care Home, all the variations and presentations and in every single case, we always remember, an actual person. Very often this person hardly ever speaks, simply wanders to and fro, then sleeps. Or perhaps another person will be very verbal, in their own way, in their own world and strongly so. A constitution which allows for longevity, despite everything, is the gift of many. But, of course, if such a life is governed by something as radical and destructive as dementia, whilst we long for life to continue, our hearts seek solace and an end to pain, bewilderment, the chaos of a damaged mind and the physical distress of a weakened body no longer in control.

    Whatever takes place, for each and every person living with dementia, their 'spirit' remains as that 'unknown'. It does not relate to the tangible, nor can we take hold of it and protect it, but we see it in that certain 'smile' or feel it in the grasping hand and the sparkling eye which might well hold a tear. Something of it communicates at such times and we know it, however fleeting that moment might be. Mortal as we surely are, the 'life spirit' - whatever it may be - seems like that distant star, twinkling out lts light for all to see -- and yet which died a thousand years ago.
     
  20. kindred

    kindred Registered User

    Apr 8, 2018
    2,126
    Oh my darling, all the world should read this wonderful, inspiring, wise and loving post. Wondrous, wondrous. This is beautiful and has helped me no end this morning, feeling a bit low, but this helps so much. I shall read this again and again. Thank you with all love and this is stunning. Geraldinexxxx
     

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