Conflicting emotions

[Deb57]

My husband is nearing the end of his life and I’m struggling with conflicting feelings. I’ve always thought it would be a grea relief when he passes away, as his quality of life has been non-existent for many months, but now the end is closer I’m worried that I’m going to miss my visits to him terribly, seemingly pointless though they are. He is immobile and has not communicated in any way for about 9 months, but can I be sure he has no quality of life? What if he’s actually quite content in bed? He’s well looked after, warm, comfortable and fed so perhaps he is quite ok to carry on living like this.
I’m so muddled and sad.

 

[karaokePete]

This conflict of thoughts would only be natural in this situation and letting go will never be easy, even if it is obviously the best thing to do.

I would advise that you shouldn't be afraid to seek assistance at this difficult time and you may find that your GP may be able to help.

Be assured, the members here will be supportive. However, beyond that, it may be useful to speak to a person in the short term and, whilst we have our own helpline, it may be useful to have a chat with the Samaritans - their helpline details are

Samaritans: Call 116 123 or email jo@samaritans.org

Open 24 hours, 365 days a year

 

[chickenlady]

My husband is nearing the end of his life and I’m struggling with conflicting feelings. I’ve always thought it would be a grea relief when he passes away, as his quality of life has been non-existent for many months, but now the end is closer I’m worried that I’m going to miss my visits to him terribly, seemingly pointless though they are. He is immobile and has not communicated in any way for about 9 months, but can I be sure he has no quality of life? What if he’s actually quite content in bed? He’s well looked after, warm, comfortable and fed so perhaps he is quite ok to carry on living like this.
I’m so muddled and sad.

My Dad died on November 2018 and my Mum felt guilty at feeling relief, eventually she has come to terms with the fact that he had no quality of life and no dignity, the husband she knew wouldn't have wanted people to be toiletting him and giving him personal care, he would have been relieved to let go. Her feelings of sadness were, she said, her feeling sorry for herself and lonely and she couldn't wish him back despite missing him every single hour of every day. I am relieved that he didn't linger on and that I was able to nurse him at the end but that doesn't mean I love him or miss him less. It's difficult to articulate how you feel but talk to the staff who are caring for him as they deal with people experiencing these emotions every day. Keep posting on here.

 

[Malalie]

I am ill equipped to reply to you really as I only have experience with a Mum. I know that it must be an entirely different thing when it's your husband, so apologies if I offend.

However, your post is so sad - you must have gone through so many unhappy and distressing times to even get to the laudable place where you are now. Your poor husband is warm, comfortable, fed and safe, and you are visiting. You have done brilliantly well.

There will be people replying who are in exactly the same situation a you with empathy and ideas I'm certain.

The Pre Cruse thing that you spoke about earlier sounds really interesting - I've never heard anyone talk about that on here at all although "anticipatory grief" does come up a lot. A bereaved friend joined CRUSE and found it really helpful.

'Muddled, sad and with totally conflicting emotions' is normal for someone who is going through what you are experiencing and I'm glad that you have found yourself here. Sorry, no practical help at all, just sympathy and wishes that things go well with you. XX

 

[Deb57]

I am ill equipped to reply to you really as I only have experience with a Mum. I know that it must be an entirely different thing when it's your husband, so apologies if I offend.

However, your post is so sad - you must have gone through so many unhappy and distressing times to even get to the laudable place where you are now. Your poor husband is warm, comfortable, fed and safe, and you are visiting. You have done brilliantly well.

There will be people replying who are in exactly the same situation a you with empathy and ideas I'm certain.

The Pre Cruse thing that you spoke about earlier sounds really interesting - I've never heard anyone talk about that on here at all although "anticipatory grief" does come up a lot. A bereaved friend joined CRUSE and found it really helpful.

'Muddled, sad and with totally conflicting emotions' is normal for someone who is going through what you are experiencing and I'm glad that you have found yourself here. Sorry, no practical help at all, just sympathy and wishes that things go well with you. XX

Thanks for your kind words, they’re really helpful. X

 

[Deb57]

My Dad died on November 2018 and my Mum felt guilty at feeling relief, eventually she has come to terms with the fact that he had no quality of life and no dignity, the husband she knew wouldn't have wanted people to be toiletting him and giving him personal care, he would have been relieved to let go. Her feelings of sadness were, she said, her feeling sorry for herself and lonely and she couldn't wish him back despite missing him every single hour of every day. I am relieved that he didn't linger on and that I was able to nurse him at the end but that doesn't mean I love him or miss him less. It's difficult to articulate how you feel but talk to the staff who are caring for him as they deal with people experiencing these emotions every day. Keep posting on here.

Thanks for sharing your thoughts, all very helpful. My conflict arises partly because nobody has ever recovered from dementia, unlike people in a coma, so how can anyone be 100% sure they have no quality of life? Of course, it wouldn’t be any quality of life to us, but we aren’t in the same state so we can’t really compare. My worry is that i am not wanting his life to be prolonged for my own reasons, i.e it is so distressingly painful to see him like this, rather than any sound knowledge of how he really is. Does this sound mad?

 

[Babymare01]

I struggled with the guilt of wanting my mum just to go to eternal sleep but the good people on here showed me that the feeling of guilt is normal and to bash it on the head. But saying that I still get sweeping guilty feelings. I want my mum to die! But I know if she could see herself she would hate what she has been through (Physically violent to me and verbal) and what she is now. I love my wonderful loving mum with all my heart but I want her to drift off peacefully. Where she is now is not a quality of life. Go to sleep mum and I will always love and miss you xx

 

[Deb57]

I struggled with the guilt of wanting my mum just to go to eternal sleep but the good people on here showed me that the feeling of guilt is normal and to bash it on the head. But saying that I still get sweeping guilty feelings. I want my mum to die! But I know if she could see herself she would hate what she has been through (Physically violent to me and verbal) and what she is now. I love my wonderful loving mum with all my heart but I want her to drift off peacefully. Where she is now is not a quality of life. Go to sleep mum and I will always love and miss you xx

Thanks, that’s really useful, just knowing I’m not alone in my struggle with these awful emotions. Who would have believed we could wish our loved ones would pass away?! It’s all so unbearably horrible and I often wish it was just all over, but then feel so guilty for thinking that, and so the circle of emotions goes on. I know one day soon it will end and I just hope I feel the relief I crave and not just more guilt.

 

[Jaded'n'faded]

We've always been very open about end of life/ dying in our family, and all feel the same. Years ago when my mum set up EPA and updated her will, she also did a Living Will, now known as an Advance Directive. In it, apart from the general DNAR type things, she states that if she lost mental capacity or became so ill that she would be reliant on others for the rest of her life, she did not want to receive any further medical treatment. Both of those conditions now apply.

She was quite clear about her wishes and often reminded us saying 'If I ever get like that, shoot me! If you don't I will come back and haunt you!'

Of course, no one expected dementia and horribly, all the lines get blurred. Mum, in a care home for 2 years, does not have capacity and will need 24/7 care for the rest of her life. Yet otherwise she is fairly healthy. When she gets a UTI, I start to dither about her having antibiotics. So far I have OK'd it though technically it's going against her wishes. My concerns are that she gets really difficult with a UTI and I don't want the home to give her notice then have to move her. (That's highly unlikely but I can't risk it.)

It's on her care notes: no meds, no hospital, DNAR, care home is chosen place of death, etc and I had a long talk with her GP about it. But the guilt is enormous. I wouldn't dare ask mum's opinion on the Living Will now - one day she'd be all for it, another day she might say, 'Don't let me die!' I have no idea so I don't ask and will go with what I knew to be the opinions she always held about quality of life over quantity. She once told me her line in the sand would be if she could no longer wipe her own bottom. She is way, way past that stage now and has - in my opinion - no quality of life.

However... carers and even nurses aware of the situation think I am an absolute monster and that I just want my 'poor mother' dead. I hate their judgements when they know nothing of our family, our history, dynamics, etc, etc. They just say 'Your mum's lovely!, or 'We like your mum - she's feisty,' and that is enough for them. Well no, actually. It really isn't that simple.

Rant over. Sorry.

 

[Deb57]

Great to read your ‘rant’! We all so need to do that sometimes.
Your mum’s care home is showing an unforgivable attitude; they should be giving you their full support at such a difficult time, not judging you. It sounds as though your mum made her wishes very clear when she was in a fit mental state to do so. How she might respond now is irrelevant- that was the whole point of setting up the advanced directive when she did.
Whether to treat a UTI is up to you and the GP. You said you had a long talk with him/her, what was their attitude? Maybe another discussion with them is in order.
I had to change my mind on allowing treatment when my husband hit his toe on the door in the care home and developed an infection. I just thought I couldn’t let him die from an infected toe! But, looking back, perhaps it would have been much kinder as, 2 years on, he is bedridden, double incontinent, no communication and needs absolutely everything done for him.
The GP for the Home is absolutely brilliant and I have had some very open and honest discussions with him about end of life care for Howard. I really hope yours is as good.
Do rant again, if it helps!
Xx

 

[Moose1966]

We've always been very open about end of life/ dying in our family, and all feel the same. Years ago when my mum set up EPA and updated her will, she also did a Living Will, now known as an Advance Directive. In it, apart from the general DNAR type things, she states that if she lost mental capacity or became so ill that she would be reliant on others for the rest of her life, she did not want to receive any further medical treatment. Both of those conditions now apply.

She was quite clear about her wishes and often reminded us saying 'If I ever get like that, shoot me! If you don't I will come back and haunt you!'

Of course, no one expected dementia and horribly, all the lines get blurred. Mum, in a care home for 2 years, does not have capacity and will need 24/7 care for the rest of her life. Yet otherwise she is fairly healthy. When she gets a UTI, I start to dither about her having antibiotics. So far I have OK'd it though technically it's going against her wishes. My concerns are that she gets really difficult with a UTI and I don't want the home to give her notice then have to move her. (That's highly unlikely but I can't risk it.)

It's on her care notes: no meds, no hospital, DNAR, care home is chosen place of death, etc and I had a long talk with her GP about it. But the guilt is enormous. I wouldn't dare ask mum's opinion on the Living Will now - one day she'd be all for it, another day she might say, 'Don't let me die!' I have no idea so I don't ask and will go with what I knew to be the opinions she always held about quality of life over quantity. She once told me her line in the sand would be if she could no longer wipe her own bottom. She is way, way past that stage now and has - in my opinion - no quality of life.

However... carers and even nurses aware of the situation think I am an absolute monster and that I just want my 'poor mother' dead. I hate their judgements when they know nothing of our family, our history, dynamics, etc, etc. They just say 'Your mum's lovely!, or 'We like your mum - she's feisty,' and that is enough for them. Well no, actually. It really isn't that simple.

Rant over. Sorry.

Well said , when your in a corner and your heart is breaking it’s support you need , I have to say this forum ticks all the boxes !!!

 

[Moose1966]

We've always been very open about end of life/ dying in our family, and all feel the same. Years ago when my mum set up EPA and updated her will, she also did a Living Will, now known as an Advance Directive. In it, apart from the general DNAR type things, she states that if she lost mental capacity or became so ill that she would be reliant on others for the rest of her life, she did not want to receive any further medical treatment. Both of those conditions now apply.

She was quite clear about her wishes and often reminded us saying 'If I ever get like that, shoot me! If you don't I will come back and haunt you!'

Of course, no one expected dementia and horribly, all the lines get blurred. Mum, in a care home for 2 years, does not have capacity and will need 24/7 care for the rest of her life. Yet otherwise she is fairly healthy. When she gets a UTI, I start to dither about her having antibiotics. So far I have OK'd it though technically it's going against her wishes. My concerns are that she gets really difficult with a UTI and I don't want the home to give her notice then have to move her. (That's highly unlikely but I can't risk it.)

It's on her care notes: no meds, no hospital, DNAR, care home is chosen place of death, etc and I had a long talk with her GP about it. But the guilt is enormous. I wouldn't dare ask mum's opinion on the Living Will now - one day she'd be all for it, another day she might say, 'Don't let me die!' I have no idea so I don't ask and will go with what I knew to be the opinions she always held about quality of life over quantity. She once told me her line in the sand would be if she could no longer wipe her own bottom. She is way, way past that stage now and has - in my opinion - no quality of life.

However... carers and even nurses aware of the situation think I am an absolute monster and that I just want my 'poor mother' dead. I hate their judgements when they know nothing of our family, our history, dynamics, etc, etc. They just say 'Your mum's lovely!, or 'We like your mum - she's feisty,' and that is enough for them. Well no, actually. It really isn't that simple.

Rant over. Sorry.

I’m with you on your rant, stay strong ❤️

 

[chickenlady]

Thanks for sharing your thoughts, all very helpful. My conflict arises partly because nobody has ever recovered from dementia, unlike people in a coma, so how can anyone be 100% sure they have no quality of life? Of course, it wouldn’t be any quality of life to us, but we aren’t in the same state so we can’t really compare. My worry is that i am not wanting his life to be prolonged for my own reasons, i.e it is so distressingly painful to see him like this, rather than any sound knowledge of how he really is. Does this sound mad?

Not at all, all you can think of is how would the person he used to be feel about his current state, he'd be horrified therefore we just need to make things relaxed and happy for them but it's natural to want it to end.

 

[Witzend]

I know it's different with a spouse, but I have to say that I never wanted my mother to go on in that pitiful state of advanced dementia. I was always so painfully aware of how utterly horrified her former self would have been if she could have seen herself - the indignity of double incontinence, not knowing any of her family, no,longer capable of intelligible speech, etc.
Although of course she was unaware of all this - thank heavens - to me that made no difference. It was such a cruel and pitiful apology for a life. I knew her former self would never have wanted to go on like that.

 

[Kikki21]

My mum has reached end of life care at the hospital today & part of me thinks that she would want meds to fight this but the other half thinks looking in her eyes, she just looks empty like she is giving up the fight.
I just want her suffering to end. If she was a much loved pet, then I would be taking her to the vet but I guess the syringe driver is the injection to relieve her discomfort. If she has any - she seems more at peace with it being in now xx

 

[vmmh]

Deb57 I find myself in the same boat as you, almost. My husband too is in the end stages of this horrible process. He is at home with me. He is happy most of the time but is full care. His day consists of naps, being fed, hauled up to the commode for incontinence care, then sitting on the couch - slouching to one side or the other - and playing with plastic kid's toys or pulling his pant legs up as far as they go. He has, in my opinion, no quality of life. But I would miss him terribly if he were not there. I too have thoughts of what it would be like after he passes away. I could go shopping whenever I want, I wouldn't have to worry about paying caregivers, or buying chuxs or adult diapers. I could catch up on sleep, etc, etc. But then I think of the long lonely evenings in a house all by myself and without the man I love. And so my emotions go back and forth too. I agree with others replies that it is a normal cycle for the circumstances we find ourselves in. And so, I believe the only thing we can do is leave it in God's hands. Our husband's will pass at the time they are supposed to pass according to God's plan. I try to see what benefit might come from his still hanging on - not just for my self growth, but for other people around us as well. It helps somewhat to have faith but in reality it is still VERY hard and so sad....

 

[discreet]

Late stages I find so hard to bear but try not to upset people around me who think I take it all in my stride as i have coped for years with my husband
But I am struggling and biting my bottom lip now when I visit him as he rambles on child like this once strong intelligent caring man almost vanished
Heart breaking is understatement

 

[Deb57]

Your post really strikes a chord, Discreet. I’ve coped for so many years with my husband and now he is in a nursing home, I think people assume I am having a great time, doing as I please with nobody to answer to. How wrong can you be?! I’d give anything to have him back! Even when he wasn’t able to remember things, at least he was here. I don’t think it is possible for anyone who has not experienced this to truly understand what it’s like. Such a long and painful solitude, without the person you have shared so much of your life with. I find it impossible to enjoy anything because I’m always thinking how much he would enjoy it, if only he could. Instead, he’s lying in a bed, being turned every few hours, fed at meal times, changed when he’s wet or soiled. How can people think I can live a normal life, knowing how his life is?

 

[pep57]

My husband is nearing the end of his life and I’m struggling with conflicting feelings. I’ve always thought it would be a grea relief when he passes away, as his quality of life has been non-existent for many months, but now the end is closer I’m worried that I’m going to miss my visits to him terribly, seemingly pointless though they are. He is immobile and has not communicated in any way for about 9 months, but can I be sure he has no quality of life? What if he’s actually quite content in bed? He’s well looked after, warm, comfortable and fed so perhaps he is quite ok to carry on living like this.
I’m so muddled and sad.

Hi Deb57 - I share your thoughts to some extent as my mum is 97, no clear verbal communication, now immobile after living a very physical and energetic life however, she has lived the last 4 years in this seemingly non existent state. I strongly believe and the fact she is still alive, that she continually strives to live! therefore, I find ways to console myself and try and put my own feelings aside to support her thirst for life. Wishing you strength and endurance.

 

[sbs55]

Your post really strikes a chord, Discreet. I’ve coped for so many years with my husband and now he is in a nursing home, I think people assume I am having a great time, doing as I please with nobody to answer to. How wrong can you be?! I’d give anything to have him back! Even when he wasn’t able to remember things, at least he was here. I don’t think it is possible for anyone who has not experienced this to truly understand what it’s like. Such a long and painful solitude, without the person you have shared so much of your life with. I find it impossible to enjoy anything because I’m always thinking how much he would enjoy it, if only he could. Instead, he’s lying in a bed, being turned every few hours, fed at meal times, changed when he’s wet or soiled. How can people think I can live a normal life, knowing how his life is?

Deb, I clearly understand your feelings, Each day is different and each day I feel as though everyone is just floating by smiling and laughing, and I am struggling inside to be the same lively happy soul I once was. We grieve each day as we watch them slip away from us. It hurts deeply, and It stays with us. I know from watching my amazing mother drifting away from me ever so slowly and yet she still wants to look out for others... Her love is deep and strong and I have to remind myself that I am fortunate to have this incredible journey with her. Look at him, your husband, and know that he wants you to just be there on the journey. Just to hold his hand or be his guide. I truly believe that he feels you... And remember... even if THEY think you are living a "normal" life... Who cares... They do not live your life.