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Living with end of life

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Just a thought.. Today, I was with dad and I had a moment of clarity. He's on his 2nd lot of antibiotics in the last 2weeks for his chest-never ending chest infections. He eats, drinks (puréed/thickened), coughs and chokes. It's heartbreaking. I keep waiting for the phone to ring, thinking he can't take much more.. but it would seem he can- he's still my strong-willed wee dad, just can't speak to me anymore!❤️I've been so caught up in worrying that he's 'dying', when maybe I should have been dealing with how he's living. And what I need to do to improve the quality of his life, that he's fighting for so hard...


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Red66

Registered User
Feb 29, 2016
363
Oh love. Your poor Dad and poor you. He is made of strong stuff fighting these infections. I just hope you are coping ok. It's so tiring physically and emotionally xx
 

Hezzy

Registered User
Sep 6, 2016
51
hello

Hi Gwendy,
wishing you continued strength. xx you gave me and I'm sure others so much support going through this x I know you'll be doing all you can, makes sure you're looking after yourself too.
lots of hugs. x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,130
Kent
These are tough times Gwendy. I only hope your dad is pain free and as comfortable as he can be.
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
It's very hard. We want so much to make things better for them, and we can't, which is heartbreaking. This is a time to be extra gentle with yourself too. Wishing you strength and endurance through this time.
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Thank you all. You are all so lovely. Gave me a lot of comfort today, when I really was feeling very hopeless yesterday. It's a really awful, demoralising feeling that you can't help someone you love. Or worse, that you can help them maybe, but haven't worked out how to. Dad will keep fighting, I know. He'll keep eating and drinking as long as he's able, even tho it causes him such distress. His eyes are expressionless now. Every infection is stealing another piece of him. Much love to everyone here who is struggling. X


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Toddleo

Registered User
Oct 7, 2015
411
Gwendy, I wanted to send you some comforting thoughts, it is impossibly hard what you're going through.
I have just got back from mum's funeral today, she was officially on "end of life" for 6 weeks, and it felt like forever. Looking back on it now of course, it was fleeting but still super stressful.
I hope that when the end comes, it is a gentle and peaceful end, and that one day, you can look back, like I am today, with easier thoughts of happier times.
Hang in there
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Gwendy, I wanted to send you some comforting thoughts, it is impossibly hard what you're going through.
I have just got back from mum's funeral today, she was officially on "end of life" for 6 weeks, and it felt like forever. Looking back on it now of course, it was fleeting but still super stressful.
I hope that when the end comes, it is a gentle and peaceful end, and that one day, you can look back, like I am today, with easier thoughts of happier times.
Hang in there
Very humbled you wrote to me today, Toddleo. Thank you, so much. I do know from experience of losing my own mum that when someone has suffered, you are able to think of times when life was kinder. I'm so glad you are reflecting on your mum today, of all days, in this way. Thank you again ❤️X


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JackyS

Registered User
Mar 14, 2010
175
Cheshire
Hello Gwendy and thank you for starting this thread. I haven't been on Talking Point for quite a while but I always come back when I need support/advice - and your thread so accurately reflects my own current feelings.

My Mum has had a diagnosis for over 7 years now and has just moved from a care home to a nursing home because (for the first time) her health is failing fast. She developed a pressure sore some time in December which the District Nurses were treating but its reached stage 4, she's in a lot of pain and her weight has gone down very rapidly so that she's just skin and bones.
She's bedridden and unable to move herself and reliant on others to feed her, change her, turn her etc etc - and she hardly speaks now. We've been very lucky that her dementia never seemed to change her personality - she's just gradually retreated from everyone and everything.
I know they are doing all they can for her and are trying to get the pain under control - but I seem to have gone to pieces. She's nearly 93 and I know this has to be the end coming but, like you I think, I recognise I'm basically waiting for her to die. I hate seeing her like this and for the first time, feel reluctant to visit (though of course I am!). I'm on edge all the time, am snappy with my (very patient) husband, cry at the slightest provocation - and I just don't know how to enjoy the time with her any more.
Oh cripes, that sounds awful. I don't think I could say it out loud - but I'm hoping the lovely people who read this will understand in a way that friends and family may not? I can't make her better this time - and I guess I feel I'm failing her. And, well, it stinks.

Is this normal???
 

Jessbow

Registered User
Mar 1, 2013
3,015
West Hertfordshire
Perfectly normal.
like anything else that you find stressful, the waiting for it to happen is almost as stressful as the event its self.

I'll hold my hand up...... I used to think ''She's going to die very soon, Why oh why can't she go today and spare us and her this anguish''

its like sitting next to a ticking time bomb.
 

Wiltshire

Registered User
Jan 29, 2013
21
I know they are doing all they can for her and are trying to get the pain under control - but I seem to have gone to pieces. She's nearly 93 and I know this has to be the end coming but, like you I think, I recognise I'm basically waiting for her to die. I hate seeing her like this and for the first time, feel reluctant to visit (though of course I am!). I'm on edge all the time, am snappy with my (very patient) husband, cry at the slightest provocation - and I just don't know how to enjoy the time with her any more.
Oh cripes, that sounds awful. I don't think I could say it out loud - but I'm hoping the lovely people who read this will understand in a way that friends and family may not? I can't make her better this time - and I guess I feel I'm failing her. And, well, it stinks.

Is this normal???
Oh my gosh, it could be me writing that!
My mother is 92, has dementia, but also terminal breast cancer, which has spread to her neck and is very, very aggressive. Has been in a nursing home 120 miles from me since 23rd Dec, and has deteriorated rapidly. I am making the weekly round trip to see her. Each time I visit, i can see the deterioration. She cannot really swallow now, is on morphine and her dementia is much, much worse. I dread seeing her this way, as you say, just waiting for them to die.
I get so angry with some people who say, 'oh well, she is 92, had a good life' etc. But its watching them die slowly that is the dreadful part. You just want them to have a peaceful end, and not be in pain. I think all I can say is take it one day at a time. The end will come, and we will get through this. Just difficult to see that at the moment.......
 

lemonjuice

Registered User
Jun 15, 2016
1,534
England
Another one here

Oh I so identify with comments on here.
. . . I recognise I'm basically waiting for her to die. I hate seeing her like this and for the first time, feel reluctant to visit (though of course I am!). I'm on edge all the time, am snappy with my (very patient) husband, cry at the slightest provocation - and I just don't know how to enjoy the time with her any more.
Oh cripes, that sounds awful. I don't think I could say it out loud - but I'm hoping the lovely people who read this will understand in a way that friends and family may not? I can't make her better this time - and I guess I feel I'm failing her. And, well, it stinks.
Perfectly normal.
like anything else that you find stressful, the waiting for it to happen is almost as stressful as the event its self.

I'll hold my hand up...... I used to think ''She's going to die very soon, Why oh why can't she go today and spare us and her this anguish''

It's like sitting next to a ticking time bomb.
Really does help to know there are others, just 'waiting for it all to be over'. This May will be over 2 years when the manager of the NH was reassuring me, "She won't be here in 12 months."
But its watching them die slowly that is the dreadful part.
I'm fed up of all the 'emergencies, which 'might be the end', but which my mother fights through and survives. I hate visiting a body which is 'breathing- but not living'. I want at least the memory of my mother back. She doesn't even look lie my mother anymore.
 

Wiltshire

Registered User
Jan 29, 2013
21
I want at least the memory of my mother back. She doesn't even look lie my mother anymore.
I totally agree with that. My mother used to be a rather large (!) and cheerful lady, always had an apron on and cooking something good for tea. Now she has lost so much weight, she is just skin and bone.
And the hard thing is that my mother is always so desperate now to see my youngest daughter, who is just 17 and in the middle of her final year at school, so with A Levels coming up. My mother says she hasn't seen her in months, when in fact she had been coming with me every other weekend until just two weeks ago.
Although just 17, she has been very mature throughout all of this, but felt that she really didn't want to see her gran deteriorate any more. My daughter wants a memory of her gran as how she used to be, not how she is now. And I can fully support that. And as horrible as it is to say it, even if my daughter were to come with me now, my mum would forget that she'd visited within a day or two, and would start the pleading again to see her. Whereas my daughter will have the image of how my mum is now for the rest of her life......
 

JackyS

Registered User
Mar 14, 2010
175
Cheshire
Thank you for your responses - it's good to know I am not the only one (because sometimes it feels like that).
And yes, Wiltshire, totally agree with the getting angry when people say she's had a good life etc etc - that's not what matters right at this point (although I hope it will again one day) - all that matters right now is - in a nutshell - that she has a good death. And by and large that's out of our hands, no matter what we do or say.
Instead we get to cope with the guilt and the agonising grief of watching a loved one fade gradually.
As I said earlier - it stinks.
Thank goodness for Talking Point - and thank goodness for all of us. xxxx
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Thank you for your responses - it's good to know I am not the only one (because sometimes it feels like that).
And yes, Wiltshire, totally agree with the getting angry when people say she's had a good life etc etc - that's not what matters right at this point (although I hope it will again one day) - all that matters right now is - in a nutshell - that she has a good death. And by and large that's out of our hands, no matter what we do or say.
Instead we get to cope with the guilt and the agonising grief of watching a loved one fade gradually.
As I said earlier - it stinks.
Thank goodness for Talking Point - and thank goodness for all of us. xxxx
I totally agree with all of you. The grief of watching the suffering is awful. I find it so hard to accept that my dad is so distressed every day. And I feel bad that I'm feeling sorry for myself, when he's the one enduring it. Love to all. X


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LadyA

Registered User
Oct 19, 2009
13,563
Ireland
Wishing you all strength and peace.
All I can tell you is that now, 18 months after his death, I mostly remember my husband when he was pottering around the garden, planting new colourful primroses (primulas?) every Spring, planning day trips by train, and all his other enthusiastic doings. I do remember his dementia- but the harshness and the horror, have been superseded by other memories. His illness and death didn't define him - his life did. I have photos from earlier times, which have helped to fade the final images.

This awful time for you and your loved ones will pass, and they will live in your memory as they used to be. xx

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JackyS

Registered User
Mar 14, 2010
175
Cheshire
His illness and death didn't define him - his life did.



Thank you so much for your post, LadyA - you've made me cry but this time for all the right reasons. What a lovely thought to cling on to when times are tough x
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
Wishing you all strength and peace.
All I can tell you is that now, 18 months after his death, I mostly remember my husband when he was pottering around the garden, planting new colourful primroses (primulas?) every Spring, planning day trips by train, and all his other enthusiastic doings. I do remember his dementia- but the harshness and the horror, have been superseded by other memories. His illness and death didn't define him - his life did. I have photos from earlier times, which have helped to fade the final images.

This awful time for you and your loved ones will pass, and they will live in your memory as they used to be. xx

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I too, thank you for sharing that, Lady A. Part of my mind sees dad dashing around, always walking at 100miles an hour(!),always busy..and the other part sees my poor dad as he is now. I also see my mum in her hospital bed in the living room, but that's not how I remember her now. I remember her doing her garden( planting daffodils for spring), singing and bossing me around! I celebrate her life, not her death from cancer. I smile when I think of her now. Thank you again. So sorry you had to live through this illness with your husband. X


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