Wrong hoping for an early death?

Discussion in 'Recently diagnosed and early stages of dementia' started by ScaredyCat, Apr 1, 2019.

  1. ScaredyCat

    ScaredyCat New member

    Mar 31, 2019
    4
    My mum has only recently been diagnosed with alzheimers and is quite with it, though, I fear, going down hill quite quickly
    I said to my partner that, if it were me, I would be making plans to go to Dignatis at some point. He was shocked but I was surprised and thought a majority of people would think the same.
    I notice that there are lots of posts on here about wanting to extend a loved one's life after cognitive impairment has declined to a point where the sufferer is often distressed
    Am I alone in thinking that the best thing for a sufferer is to hope they actually do die of another cause before the disease totally takes over??
     
  2. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,063
    Female
    Chester
    I understand your thoughts and up to a point agree with them. I don't want to prolong mum's life when there is no quality left.

    My mum is still in early stages 5 years after diagnosis and happy in herself, my kids (17 and 13) in particular still really enjoy seeing her, and although she is capable of little she still interacts well with them when they see her, and they play simple board games with her. So her role as grandma is still there.

    So whilst I originally thought that she didn't have any quality of life anymore, she still does.

    However I have no desire to have multiple courses of antibiotics to prolong her life, and would not want her to be encouraged to eat if she indicates she doesn't want to.

    I have always hoped that something such as a fatal heart attack or stroke happens.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,222
    Female
    South coast
    I too hoped that mum would pass away from a sroke or heart attack, but it was not to be - she passed away eventually from her Alzheimers. Harrowing to watch, but she herself was peaceful.

    She lived for her final 3 years in a care home, but she made friends and was happy there. She was fun to visit (although she did have the odd bad day) and I used to take her out for a few hours, pushing her in her wheelchair. She loved to see the sea, go to the park and feed the ducks (or just watch them) or look round a garden centre before having lunch at a cafe and I have some very happy memories of that time. Inevitably she declined and I could not do that anymore, but I have a clear memory of her - mere days before she passed away - with her great grandson, both of whom were banging teaspoons on the table and laughing their heads off.

    In her final months, though, when it was clear that she was getting to the end, I did not push for investigations and treatment which would have, at best, merely prolonged her life without improving its quality. At the end I resited calls for her to be sent into hospital and she passed away in her care home.

    I have just passed the 2 year anniversary of her death and I miss her so much, but still feel that I did the very best for her.
     
  4. Beate

    Beate Registered User

    May 21, 2014
    11,695
    Female
    London
    My OH had good quality of life until 3 months before his death. He lived with me, he had carers and his beloved Day Centre. He was a happy soul who giggled at me each morning when I got him up.

    Then he lost his mobility and ended up in hospital and a rehab ward for a very long time. From there he was transferred straight to a nursing home. He didn't even last a week in there, and yes, I was glad at that point because I could see he had given up, and the stress at the end nearly killed me too.

    But before that - no. Every person with dementia is different and you can't automatically assume they are suffering. But when they do it's very hard to watch, and that's why you should have a discussion about a Do Not Rescuscitate form at some point. It will not stop every medical intervention, but the useless ones at the end.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,222
    Female
    South coast
    Absolutely agree. Mum had a DNR form. I would not have wanted her to be brought back if her heart had stopped.
     
  6. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,063
    Female
    Chester
    I should add that I'm not expecting one, as I am aware her general health is better than for years before the crisis and diagnosis. She is being properly monitored, taking her medication properly and getting healthcare/GPs appts and hospital appts as required. I actually think she is further away from a sudden death than she was 6 years ago (not that we can tell).

    I hadn't thought to put a DNR in place for my mum at the stage she is at, so thank you for the thought and I will look into it.

    (MIL who is 92 this week and still living independently put a DNR in place at the instigation of her solicitor when preparing POA)
     
  7. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    423
    Female
    High Peak
    I hope my mother will die every day. (There - I've said it.)

    Mum went from dodgy and in denial but independent to completely unable to function overnight. She had a fall which resulted in hospital for 2 months and I moved her from there straight into a care home near me. That was more than 2 years ago. Since then, her confabulations and delusions have become constant, her mood is variable, she is incontinent now and has no memory. She is never happy and has no interest in anyone or anything.

    However... she is also mostly fit and healthy, despite breaking her hip a year ago, and has no meds apart from the occasional paracetamol or laxative. In other words, she ain't dying.

    We've always discussed death and dying in our family and all share the same pragmatic attitude about quality over quantity. I have mum's Living Will (now called an Advance Directive) stating her wishes not to receive any further medical treatment should she lose mental capacity or become dependent on others for the rest of her life, so both those criteria have been met.

    But instead of the dignified death she desperately wanted, she's ended up with dementia which none of us foresaw. Whilst it's clear cut enough to make decisions about voluntary euthanasia when a person has capacity and something like MND, with dementia it is impossibly difficult. Even if it were legal, it would involve someone else taking the 'now' decision and that's a complete minefield - entirely subjective and, of course, open to abuse.

    So here we are. Instead of being able to respect my mother's wishes to 'put her out of her misery', should she ever become 'like that', (she made me promise I would shoot her!!) I am now faced with watching her horrible decline (and it IS horrible), possibly over umpteen years. And at enormous expense, of course.

    Dementia has ruined the end of my mother's life and it is ruining mine (and my distant sibling's, to an extent.) If I sound cold and callous, I'm sorry - we are not a close family and she was never 'my lovely mum'. But if I'm honest, I just don't see who benefits from keeping her alive - certainly not mum. I often find myself wishing that when she fell getting off that bus (2 and a half years ago) and hit her head slightly, that she'd hit it much harder, or that she'd have a major stroke or something that would finish her off. The thought of watching this decline continue over several more years just fills me with terror, dread and blackness.

    (Sorry for any offence I may have caused.)
     
  8. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    1,962
    Female
    East Midlands
    Everyone is different. My mum still had some quality of life in her care home before her hospital stay just now which led to her passing away due to a very typical final stage dementia decline.
    I do wish that she had not gone onto hospital though if I am honest. The care home had the capacity to look after her for end of life & I wish she had passed away there.
    However what is the definition of quality of life?
    My mum could shuffle around with her frame, she could eat & drink without assistance but she was doubly incontinent. She couldn’t go anywhere as she couldn’t walk very far due to her cellulitis as she couldn’t get shoes on her feet!
    She could have conversations albeit ones that went round in circles so yes she did have some functions left & wasn’t bedridden & unable to talk so for that I am grateful that she was taken from us before that sort of thing occurred at the care home but then we did go through that at the hospital & I must admit that I prayed that she would have a heart attack once we knew the end was coming when she was put on end of life meds.
    We didn’t think she would live more than 48 hrs but she carried on for just over a week which was the most horrendous time of my life just watching her die basically.
     
  9. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,484
    No @ScaredyCat you are not alone. My dad is a frail 88 year old with alzheimers and an advanced cancer. He also had a bout of pneumonia in January followed by a heart attack and a stroke which have advanced his dementia considerably to a stage where caring for him has become difficult and very stressful for me although he still thinks he is fine.

    Yes I hope another heart attack will just take him in his sleep before he has another down turn but not tonight because he is still happy, still eating and still sort of with it but some times not with it at all. I don't think dad is suffering, I think that I am suffering more than he is so I am carrying the guilt monster on my back at the moment.

    Prolonging life is a difficult question. We found that dad had cancer a year ago and he was to have no treatment but as he was unable to eat he was given the option of a stent which he took so we have prolonged his life by a year. To turn down that option would have been wrong without a doubt as he has had a good year until recently. He has an appointment at the stroke clinic next week and I don't think that further treatment will be offered other than more medication and I will be happy with that as I don't think dad would benefit from any other medical intervention at this stage.

    I am with you on the Dignitas thing for myself because I do not want my son or husband to have to do for me what I have done for dad. They have permission to give me a nudge in the right direction if need be.
     
  10. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,899
    Nottinghamshire
    My dad’s brother dropped dead while he was gardening. My dad always said he wanted to go the same way (or in his sleep). This was in 2006. Dad’s brother was 4 years older than dad and a sprightly 82 when he died.

    Sadly dad didn’t get his way and was diagnosed with mixed dementia in 2015. Up until then he’d been living a good life and we’d happily been able to include him in our family life and take him on holidays.

    Dementia changed all that and by 2016 I was struggling (but dad thought he was fine) and I have to admit that one or other of us said it would be better if he didn’t wake up...

    In the end dad died suddenly of a massive stroke just before Christmas 2018 but, following his stroke in the summer of that year his quality of life had, in our opinion, declined massively - but dad thought he was fine...

    I’m glad he didn’t reach the end stages and suffer the way my mum did.

    I think my dad had a reasonable quality of life until the last 5 months. Could I have taken the decision that it should end? No (but I may have agreed with Doctors if dad had an advanced directive that we had reached the point of considering it) Am I glad that he had a DNR in place and went quickly and painlessly? Yes.

    I think dad decided to leave that night and I still miss him.
     
  11. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,484
    No offence here @Jaded'n'faded those would be my dad's words, 'take me out and shoot me' he has said it many times and still says it now because of course he does not realise.

    What you have described is what I fear the most, a horrible decline.
     
  12. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,484
    I think dad should have a DNR in place @canary Where do you get the form. Can a GP do one if needed.

    I gave permission while he was in hospital but I think he should have one at home.
     
  13. Buskitten

    Buskitten Registered User

    Dec 10, 2018
    77
    I so get what you're saying and empathise - you're not bad . I'm sending love xxxx
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,222
    Female
    South coast
    Mum got hers from the GP and it was kept in his file. It not like a POA that you only have to do once and it covers you for everything - you usually have to get a new on every time you go into hospital. Speak to the doctors
     
  15. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,484
    I will thank you
     
  16. lis66

    lis66 Registered User

    Aug 7, 2015
    253
    After reading a lot of posts on TP about end of life with AD I pray something else takes my mum ,my heart goes out to all of you who have had to live watch and cope with this horrundeous illness at end stage
     
  17. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    477
  18. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,484
  19. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    198
    Female
    Ilkley
    No offence at all. My thoughts exactly. After looking after mum in her own home and finally surrendering mum to care I have witnessed first hand (every single day) the absolute horrors of Alzheimer's. My mum has no connection with life apart from being distressed, frightened and crying out her own name. She is unable to do anything rational for herself. Mum has been in care for two years, she is 93, totally blind and would be even more distressed (if that is possible) if she knew what was happening to her. She certainly wouldn't want to exist in this state. Thoughts of the horrors of the future terrify me and I decided some time ago that should I ever have this diagnosis I know exactly what I will do. No way am I going to destroy the lives of my children or allow society to decide that it's acceptable to abandon me to suffer in this way for so many years. Thinking of you and sending a hug xxxxx
     
  20. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,416
    Male
    Cornwall
    #20 Countryboy, Apr 4, 2019
    Last edited: Apr 4, 2019
    ScaredyCat going to a Clinic In Switzerland yourself is fine your personal choice, however its not your talking about your Mum which isn’t great there are two things first one you omitted to put your Mum’s age :confused: Secondly you say she has Only recently been diagnosed, well my answer to that I was diagnosed with Alzheimer’s in 1999 and Frontal-lobe-dementia in 2003 so that will 20 years ago this November ok I was 57 at the first diagnoses and I will be 76 shortly well hopefully I will make 76 one things for sure I won’t be Off to Switzerland :eek: Not that I'm worried or afraid of dying ;), I realize any of us could die or get killed at any moment :rolleyes: that's life but I’m NOT committing suicide in a Clinic :eek:o_O

    obviously my personal view and although diagnosed 20 years ago still capable to reply to your thread :):)
     

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