Hate my thoughts - something I thought I'd never feel

Discussion in 'Middle - later stages of dementia' started by lesley1958, Apr 2, 2015.

  1. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    I don't know where else to admit this. I adore both my parents but sometimes now find myself wishing that my beloved 90 year old dad with dementia could slip away quietly in his sleep. Has anyone else gone through this? I'd really welcome your thoughts. I don't know what I am thinking half the time to be honest, I only know that I am thinking about them in my every waking hour both when I am with them and not with them. And it;s selfish to think this way cos Dad does still have some quality of life. Sometimes I just can't bear my mum's sadness and exhaustion. Love to all.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,661
    Kent
    Dementia takes it`s toll on everyone Lesley . It doesn`t make you bad.
     
  3. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    Thank you Grannie G. That made me cry. In a good way. x
     
  4. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    Lesley, when we see the Dementia progressing and comparing our loved ones to how they used to be, it's common to have these thoughts. When you see how it's affecting your Mum it must be so hard. I hope you have some help from Carers etc?

    So don't hate your thoughts; you are having them because you are a caring daughter to BOTH your parents. I hope by posting here you have found an outlet for your sadness.

    Take care

    Lyn T XX
     
  5. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    Mum has finally agreed to have a carer twice a week - the carer met my parents yesterday and her first visit will be next Tuesday. I am going to see them today and as always so scared of how it will be. But I'll get through it. My mum has to get through it every day. I love my mum and dad so much. The carer seems to be lovely so I am hoping this will help Mum. I'm so glad I found this forum.
     
  6. jen54

    jen54 Registered User

    May 20, 2014
    235
    I have had these thoughts, tbh, I thought it when my dad was dying from cancer, it seemed totally cruel to prolong what was to be once he was bedridden and full of morphine, luckily he didn't suffer much and slipped away due to his heart after he couldn't take his heart pills towards the end, with mum I feel as if I am going to have to watch her go down hill over years, at present she is getting slightly worse each visit, though she is totally unaware, she is such a proud independent person, and I feel if the only way forward is with her living a nightmare to gain a few extra years-I would rather she slipped away in her sleep, I am not sure if its more selfish to wish a swift end for someone, or more selfish to want them with us for whatever time we can get regardless of their suffering - I think most of us would wish a peaceful quick end for ourselves, rather than descend into a pitiful state where all there is, is distress, there comes a point where it isn't living, its just existing while the mind and body unwinds and is dying over an extended period :(
     
  7. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,856
    England
    #7 Katrine, Apr 2, 2015
    Last edited: Apr 2, 2015
    I have recently been liaising with a heritage group who are putting on an exhibition this year. They wanted to borrow material from us relating to my mum's wartime service. I am tremendously pleased to be able to help, and proud of what she did when just a teenager. The focus on photographs of that lively, smiling young woman, and reading her own memoirs about that time, makes the young girl she was come alive for me.

    Then I stupidly think "what would that young girl think if she could see herself now aged 90?" Wouldn't she be horrified? As an older adult maybe she would have accepted that if her old lady self was happy and well cared for then it's not so bad. But a teenager? No, I think her teenage self would be devastated if she could have looked into the future. It's a good thing none of us can do that. :(

    I know it's silly to think this way. It's just my hyper-awareness of the contrast between the old person and her young self that is upsetting me. When they hold the exhibition I hope that I can just be proud of her and remember that she had a long, useful and interesting life with many experiences, good and bad, and that the last 8 years does not define her lifetime.

    I also sometimes think I wish she would slip away. But she is currently happy and content. I think she has a good quality of life, but obviously not compared to what it was in the past, or what it might have been without dementia. It's those comparisons that are devastating. Objectively, this old lady has a good quality of life and deserves to continue with that, however limited it seems to an outsider. My mum is not in pain and is not agitated. She has professional live-in carers not frazzled, emotionally exhausted family carers.

    I can't imagine how hard it is for you Lesley as their daughter, and how hard it is for every suffering person whose body clings to a very poor quality of life. Jen54 puts it so eloquently.
     
  8. Delphie

    Delphie Registered User

    Dec 14, 2011
    1,242
    I know my mum as she was would be horrified to see herself as she is now. She was always... impatient, to put it kindly, with people who weren't as mentally sharp as she was and in years gone by I had some quite odd conversations with her, as she proclaimed proudly that there'd never been any mental illness in her family (with me trying to, and failing, to point out that people don't choose to be ill and it's not some kind of a personal failing, which is how she viewed it, I think). So yes, she'd be horrified.

    But she still has a good quality of life. She enjoys her food, her singing, the gossip in the care home, even our visits are now a source of pleasure. I hope she has many more of these good years left.

    My aunt-in-law, on the other hand, is further on her 'alzheimer's journey' and I doubt there's much quality of life left. She sits in her chair staring into space and reacts quite badly to anything but feeding, and even that is getting trickier. Getting her changed and cleaned up is horrendous for the carers. I really think she just wants to be left alone and I feel very sad thinking about her.
     
  9. jen54

    jen54 Registered User

    May 20, 2014
    235
    yes, my mum is fine - she just has no short term memory, so she potters around, we look after things on the financial and practical side for her, she cant recall our visits or what we do for her, but her memory means she doesn't seem to sit around wondering where we are, and she will phone us- she thinks she is OK apart from being forgetful - and in the scheme of things, not knowing day,time or year, and such stuff is nothing- she doesn't do her hair etc, but again- all that stuff means nothing, but I do think that it would be kinder if she slipped away at a time before she was in major pain or major distress, I know the stress and anguish that would be caused to her by being manhandled by strangers or being hospitalised while all the time having no clue why she was being treated like that, or where any of her family were- is heartbreaking,
     
  10. Brogues

    Brogues Registered User

    Apr 13, 2014
    150
    Oh Lesley <3

    You are not a bad person, it's a very stressful drawn out way to go - for us watching on it takes a huge toll. to want your dad out of his suffering is loving him so much - be kind to yourself it's hard enough on us without the guilt monster at you as well xx
     
  11. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    Thanks Brogues. The reassurance, empathy and support I get from this list are priceless.
     
  12. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    I often wish my mother would just slip away in her sleep, and I can't honestly say I feel bad about it. She will be 97 in June, has had advanced AD for some time. She can't communicate - doesn't often try to say anything, but when she does it comes out gibberish. She is invariably slumped in a chair now, almost always sleeping or dozing. Her eyes look sort of dead. She is incontinent. She doesn't know any of her family, and hasn't for ages now. There is nothing wrong with her apart from dementia - she is not in pain, and no longer seems agitated or distressed by anything. She is clean and well cared for and will have been in her care home 8 years in August.

    But what sort of a life is it? There is zero dignity, and she is way past being able to enjoy or take an interest in anything. Every time I see her, which is often, I am painfully aware of how horrified her former self would be. Yesterday I took in two Easter cards, one of which was from her former lovely cleaning lady. I said, 'It's from M - isn't it lovely?' Her only response was to try to put it in her mouth, like a baby at the stage of putting everything in its mouth.
    To me, and I know absolutely that she would say the same, this is a fate far worse than death.
     
  13. Nanak

    Nanak Registered User

    Mar 25, 2010
    1,973
    Brisbane Australia
    In all honesty I felt like that many times in my Mums last year. I hated what this vile disease did to her.
     
  14. BabyBoomer

    BabyBoomer Registered User

    Oct 13, 2014
    35
    Jen54 I know exactly how you feel, my husband died from cancer, it was nasty, painful and mercifully short just 3 weeks and I thought at the time it was cruel but seeing my Dad with multiple health conditions including Az dying by inches, I find myself wishing he could go quickly before he descends any further.

    I once felt awful about feeling this way but have come to the realisation that these thoughts are normal, and sharing here helped.

    After experiencing my husbands death and Dads descent I am a believer in the right to die. I wonder what others think here?


    Sent from my iPhone using Talking Point
     
  15. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Lesley you are not alone in this

    Hello Lesley, you are in good company with you thoughts so dont feel like a bad person. With dementia the future is a frightening thing for loved ones. My mum has vascular dementia and has had 2 mini strokes that have put her in hospital. I hope she has a massive stroke in her sleep one night before she gets much worse. I think she would want this for herself too if asked.

    Who would choose this life? Just as well we cant see into the future.

    Dont feel guilty. You feel this way due to love for your parents.

    Sending you hugs, strength and friendship. keep posting and be kind to yourself.
     
  16. janey106

    janey106 Registered User

    Dec 10, 2013
    139
    Thank you Lesley for your honesty and I share your feelings.

    My Mum has occasional periods when she is not angry, agitated, sobbing, bitter, depressed, panicking, starving herself or shouting .... But they are few and far between. There is like a whirlwind around her which pulls everything good in around her (my Dad, me and sister, partners, amazing grandchildren) sucks us dry then spews us out. I am numb about her, not sure any more if I really care about her although I feel I should.

    My Dad describes it as like a room full of light bulbs and slowly they have been going out.....there is only the smallest glimmer left .... In her but also in the life around her.

    I just want it to end before it gets worse and goes on possibly for years. I know this may be incomprehensible to some but I just ask them not to judge - it is different for all of us. My Mum is only 76 but nothing in life brings her pleasure anymore ...

    I did adore both my parents, but the Mum I have left i no longer recognise. My Dad could have quality of life but he is consumed by her 24/7. Not an hour goes by without worrying/thinking/planning stuff around them. This horrible disease has taken over several lives.

    Thank you again Lesley for helping me to share this ... As we know, we are not alone.
    Take care
     
  17. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol


    Janey, you have highlighted one of the great things about this forum - people do not judge you. I'm so sorry to hear of your Mum's distress and your dad's struggles. You may be too exhausted and sad to know you *feel* love but everything you are doing and saying *shows* love.

    Take care of yourself

    Lesley x
     

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