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I don't think that I want to visit anymore

Dominique

New member
May 9, 2020
1
0
My mother is in her mid nineties and in the very late stages of alzheimers. She has been in a care home for almost 6 years. Her worst fear was to end up with dementia. In the earlier stages she would ask us to give her something to kill her and we would try and reassure her that things would get better and she would not always feel so down, despite not really being convinced of this ourselves. She enjoyed having visitors but then Covid arrived and she did go downhill. She is now bedbound, skin and bone and sleeps most of the time. Her speech is very limited and mostly unintelligible. During the one hour visits she barely stirs, her eyes never open more than a slit, she does not know who anyone is. She is well cared for but her quality of life is non existent. It is a living death. I know that she would want to just pass away in her sleep but despite her frailty her heart carries on beating and she has to endure this existence. The staff say that she is happy! Sometimes she cries out. She is bewildered and who knows what is happening in her mind. I wish that this would all end but I feel guilty for thinking like that, but I know that she would want the same. I don't know what keeps some elderly people going when they have reached the end of their life and all that is left is to lie in a bed day in day out with no purpose other than waiting for your heart to stop and give you peace. When I visit I come away thinking that I do not want to go again which causes more guilt. I don't thing she even knows that I am there. Is there really any point anymore. It is like having a final viewing over and over again. I just can't face visiting anymore. Reading this back somehow sounds cold hearted, but it is reality and honest.
 

MrsGriff

Registered User
Mar 2, 2019
17
0
Your post has moved me as I am in a very similar situation.
I really have had similar thoughts myself as I come away from visiting feeling sad, wretched and guilty for wishing it all to end.
Truly I believe that my dear mum (and yours) would not wish us to continue visiting were they aware the distress it causes us.
There comes a time when we have to think of ourselves, and when there is nothing to be gained from visiting other than sadness maybe its time to stop. For now I will continue, but I just wanted to say you must do what is best for you-guilt free. You are not cold hearted at all, just honest.
 

marionq

Registered User
Apr 24, 2013
6,435
0
Scotland
I have recently dealt with similar with a sister in law. She was hanging by a thread for weeks with barely a sign of life. A SIL of course does not have the same emotional bond as a mother and I shared the visiting with a cousin and niece. My husband on the other hand I visited every day in his last weeks so it all depends on what you feel inside and what you can bring to the persons well-being. No one is entitled to judge you on this.
 

Violet Jane

Registered User
Aug 23, 2021
408
0
My mother was dying for nearly six days. She lived in a care home over an hour and a half away. I visited her two or three times in this period but it was not feasible for me to stay with her or locally, particularly as my daughter was just starting her GCSE exams. I think that a lot of people fixate on being with the person at the end but it's often just not possible if you do not live with the person. I feel that what you did when you were still able to have some connection with the person is more important than what you do when the person no longer has any awareness of your presence as someone whom s/he knew.

I'm not ashamed to say that I wish that my mother had died long before she actually did die. By the end she was a husk of the woman she once was and had no quality of life that I could see. In the last few months I felt that she was not far off being in a persistent vegetative state, which can be brought to an end by doctors.

I think that as a society we need to look at some very difficult questions around sustaining life when people are in the latter stages of dementia. Euthanasia for advanced dementia is permitted in The Netherlands. It's controversial, and I'm not exactly sure how the law works. Personally, I'm going to draw up an Advanced Decision in which I will record my wish that I do not receive treatment of any kind if I have advanced dementia. I do not know whether I can also specify that I do not want to be assisted to eat or drink either. I do not want my husband and children to have to endure what I went through with my mother.
 

Eogz

Registered User
Sep 9, 2021
36
0
My mother was dying for nearly six days. She lived in a care home over an hour and a half away. I visited her two or three times in this period but it was not feasible for me to stay with her or locally, particularly as my daughter was just starting her GCSE exams. I think that a lot of people fixate on being with the person at the end but it's often just not possible if you do not live with the person. I feel that what you did when you were still able to have some connection with the person is more important than what you do when the person no longer has any awareness of your presence as someone whom s/he knew.

I'm not ashamed to say that I wish that my mother had died long before she actually did die. By the end she was a husk of the woman she once was and had no quality of life that I could see. In the last few months I felt that she was not far off being in a persistent vegetative state, which can be brought to an end by doctors.

I think that as a society we need to look at some very difficult questions around sustaining life when people are in the latter stages of dementia. Euthanasia for advanced dementia is permitted in The Netherlands. It's controversial, and I'm not exactly sure how the law works. Personally, I'm going to draw up an Advanced Decision in which I will record my wish that I do not receive treatment of any kind if I have advanced dementia. I do not know whether I can also specify that I do not want to be assisted to eat or drink either. I do not want my husband and children to have to endure what I went through with my mother.
It's really tough regarding visiting, it has to be a personal choice, when my Dad got his cancer diagnosis, I spent time with him before he got really Ill to say everything that should of been said. I chose not to be there at the end, I'd already said everything I needed to.

In answer to the last part of your question, yes you can specify at time of illness for palliative care only.
Not eating and drinking though is part of an end of life care pathway, you can't ask for it and such.
You can specify your wishes which is really important f those around you making decisions when you can't.
I can't say how Important this is.

Dignity in dying do an online form you can use, just search for them on Google.
Then you can print it off and leave a copy work yourself and also with your GP.
 

Scarlet Lady

Registered User
Apr 6, 2021
103
0
@Dominique , your post moved me to tears. Your poor mum has been in the worst possible scenario for several years now. It’s something we all hope to avoid with our loved ones, but we cannot predict how things will go. Why do people’s hearts go on beating long after we think they can‘t? Modern medicine, that’s why. We accept the total disintegration of a person‘s mind while continuing to give drugs to keep their physical vital functions ‘stable’. For the PWDs and their families, it’s like living in a horror film.
I don’t blame you for not wanting to visit. Your poor mum is in a ‘living death’ situation, despite how society chooses to dress it up. You cannot share that experience and continually witnessing it will do you no good whatsoever. Please try not to let guilt interfere too much with your grief as there is absolutely nothing you can do.
 

lemonbalm

Registered User
May 21, 2018
1,757
0
It’s taken me a while to build up the courage to post this and I apologise in advance if anyone takes offence. I have just watched my poor mum die very slowly over two weeks in her care home. The staff were amazing, did everything they could to make her comfortable, and nurses came out to administer extra medication when needed but I wish to god, if there is one, that I had been able to slip something into her mouth to speed her on her way.
 

Wildflowerlady

Registered User
Sep 30, 2019
598
0
Hello @Dominique I am so sad to read your post its a awful situation to be in and very cruel to humankind. I was told my dads heart was strong when he was at the stage of End Of Life but I prayed for him to pass near the end. It was agony watching him laying there so still, watching each breath he took but knowing he would never recover. Dad was also Covid positive although it wasn't classed as cause of his passing. In comparison to your situation my dads passing was much faster as he only went into a Care Home in October last year but he had a fairly rapid decline. My dad for the last 4 weeks of his life was much like your mum barely awake. Dad wasn't eating or drinking anymore and I couldn't believe how long he held on for he really was skin and bones. When dad passed he was 86 years old and he had always missed my mother terribly as she passed five years ago but fortunately she did not show any signs of dementia.
I said what now sounds absolutely dreadful and its the first time I have actually admitted it on here but your post has moved me so much I want to tell you. When I got the call from the Care Home to say dad had passed I actually blurted out I'm glad. I feel bad admitting that I said it but it was the relief a sudden impulse at the time god only knows what the nurse must have thought. I had been visiting dad daily first when the hospital allowed and then at the Care Home but seeing him as he was was distressing me to the point I didn't know how much more I could do it for.. I miss him very much his birthday coming up on Sunday but he is at peace and I am thankful that he did remember me until the end. You are definitely not cold hearted you just want your mum to be at peace just as I did with dad. I only hope my honesty at what I said on receiving the news from the Care Home of dads passing doesn't make people think badly of me. I can only repeat it was the relief that his suffering and to be honest mine was over. Take Care and do what is best for you and your wellbeing, your mum would not want you endure anymore suffering if you feel you can no longer visit.
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,880
0
Nottinghamshire
I think everyone who has witnessed the prolonged death of a loved one with advanced dementia understands these feelings. My poor mum had no quality of life for a long while before she passed and I was both shocked and relieved when my dad’s demise was quick - mostly relieved that he didn’t have to go to the bitter end. My thoughts are with all of you.
 

Wildflowerlady

Registered User
Sep 30, 2019
598
0
It’s taken me a while to build up the courage to post this and I apologise in advance if anyone takes offence. I have just watched my poor mum die very slowly over two weeks in her care home. The staff were amazing, did everything they could to make her comfortable, and nurses came out to administer extra medication when needed but I wish to god, if there is one, that I had been able to slip something into her mouth to speed her on her way.
Hi @lemonbalm it took me courage today too as I have admitted for the first time on this thread that when I got the call to say dad had passed the first words out of my mouth were ' I'm glad'. Bless you, the forum helps us to admit to our feelings and that's a good thing. We have been through enough with our loved one without holding onto things inside its good to get it out. My condolences for the loss of your mum. I'm sending you a hug 🫂
 

jennifer1967

Registered User
Mar 15, 2020
6,821
0
Southampton
Hello @Dominique I am so sad to read your post its a awful situation to be in and very cruel to humankind. I was told my dads heart was strong when he was at the stage of End Of Life but I prayed for him to pass near the end. It was agony watching him laying there so still, watching each breath he took but knowing he would never recover. Dad was also Covid positive although it wasn't classed as cause of his passing. In comparison to your situation my dads passing was much faster as he only went into a Care Home in October last year but he had a fairly rapid decline. My dad for the last 4 weeks of his life was much like your mum barely awake. Dad wasn't eating or drinking anymore and I couldn't believe how long he held on for he really was skin and bones. When dad passed he was 86 years old and he had always missed my mother terribly as she passed five years ago but fortunately she did not show any signs of dementia.
I said what now sounds absolutely dreadful and its the first time I have actually admitted it on here but your post has moved me so much I want to tell you. When I got the call from the Care Home to say dad had passed I actually blurted out I'm glad. I feel bad admitting that I said it but it was the relief a sudden impulse at the time god only knows what the nurse must have thought. I had been visiting dad daily first when the hospital allowed and then at the Care Home but seeing him as he was was distressing me to the point I didn't know how much more I could do it for.. I miss him very much his birthday coming up on Sunday but he is at peace and I am thankful that he did remember me until the end. You are definitely not cold hearted you just want your mum to be at peace just as I did with dad. I only hope my honesty at what I said on receiving the news from the Care Home of dads passing doesn't make people think badly of me. I can only repeat it was the relief that his suffering and to be honest mine was over. Take Care and do what is best for you and your wellbeing, your mum would not want you endure anymore suffering if you feel you can no longer visit.
It’s taken me a while to build up the courage to post this and I apologise in advance if anyone takes offence. I have just watched my poor mum die very slowly over two weeks in her care home. The staff were amazing, did everything they could to make her comfortable, and nurses came out to administer extra medication when needed but I wish to god, if there is one, that I had been able to slip something into her mouth to speed her on her way.
i think you both are more than brave but also very loving to your mum/dad. i only spent a week watching my nan going. that was the hardest week ever even though she had made up her mind by refusing fluids and nutrition. i was glad when she died because that was what she wanted. to be at peace was what she deserved and what i wanted for her.
condolences to you @lemonbalm that your mum is now at rest and in peace
 

Violet Jane

Registered User
Aug 23, 2021
408
0
When my mother died I did shed a tear but what I felt mostly was relief that the indignities of her life with dementia had ended. I felt that she - and, yes, her family - had endured enough. She would have been horrified at what had become of her, a shell of the woman she once was.

I got a visual tribute made for her funeral. I chose the photographs and the music (John Rutter’s setting of ‘For the Beauty of the Earth’). When it came back for my approval and I played it I burst into tears (I’m welling up now just thinking about it) seeing my mother so vibrant and happy. She had had dementia for so long that I had almost forgotten how she used to be.

There’s no shame in wanting it all to be over when the dementia is very advanced. Dementia destroys lives and relationships in a very particular way unlike most other illnesses. Bit by bit the person is taken away from you. By the time of the actual death most of the person has gone.
 

MartinWL

Registered User
Jun 12, 2020
1,284
0
I think these feelings are common and not heartless at all. We all want our elderly family members to be happy and comfortable and there's no shame in wanting that to be the priority over prolonging life especially if it is a life of misery. I visited my mother yesterday in a care home. She has severe dysarthria and is unintelligible for the most part. She is obsessed about biscuits and the shouting and wailing must have sounded as if I were prodding her with a red hot poker when I was actually packing her new supply of "Xxx's Favourites" into a plastic container. She has no life as she can't walk unaided, can't chat to anyone as nobody can understand her, can't socialise, won't leave her room, and only has TV for entertainment. She has said by writing a note that she wishes she could die and frankly I don't blame her. There is no shame in wanting a much-loved relative's distress and misery to come to a peaceful end.
 

lemonbalm

Registered User
May 21, 2018
1,757
0
Hi @lemonbalm it took me courage today too as I have admitted for the first time on this thread that when I got the call to say dad had passed the first words out of my mouth were ' I'm glad'. Bless you, the forum helps us to admit to our feelings and that's a good thing. We have been through enough with our loved one without holding onto things inside its good to get it out. My condolences for the loss of your mum. I'm sending you a hug 🫂

Thank you for your kind words. It is good to be able to let our feelings out here, where people understand.

I hope that you are recovering well now and am sending you a hug 🤗 back. I also hope that you can do something nice for yourself on Sunday and remember some happier times with your Dad.
 

lemonbalm

Registered User
May 21, 2018
1,757
0
i think you both are more than brave but also very loving to your mum/dad. i only spent a week watching my nan going. that was the hardest week ever even though she had made up her mind by refusing fluids and nutrition. i was glad when she died because that was what she wanted. to be at peace was what she deserved and what i wanted for her.
condolences to you @lemonbalm that your mum is now at rest and in peace

Thank you 🙏
 

LeonoraJ

New member
Sep 16, 2021
1
0
My heart bleeds for you Dominique. You don't sound cold-hearted in the least. We wouldn't let a beloved animal suffer in this way. It is all SO hard. You know your Mum and you know she wouldn't want to be living like this: you clearly love her very much, or you wouldn't be so upset by it. On a practical note, maybe don't visit for a week or two, and see how you feel then? If you go back to visiting, I wonder if it would help if you wrote her letters, and read them aloud to her, even if she makes no sign of hearing or responding. Do you have a prognosis about her likely life span?

My Dad, a widower, is coming up to 94 and has some sort of dementia (awaiting diagnosis). He was no longer safe living in a retirement block so we took the very difficult decision together of him moving to a care home, so I have an inkling of what you are going through. All the very best.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,279
0
My mother is in her mid nineties and in the very late stages of alzheimers. She has been in a care home for almost 6 years. Her worst fear was to end up with dementia. In the earlier stages she would ask us to give her something to kill her and we would try and reassure her that things would get better and she would not always feel so down, despite not really being convinced of this ourselves. She enjoyed having visitors but then Covid arrived and she did go downhill. She is now bedbound, skin and bone and sleeps most of the time. Her speech is very limited and mostly unintelligible. During the one hour visits she barely stirs, her eyes never open more than a slit, she does not know who anyone is. She is well cared for but her quality of life is non existent. It is a living death. I know that she would want to just pass away in her sleep but despite her frailty her heart carries on beating and she has to endure this existence. The staff say that she is happy! Sometimes she cries out. She is bewildered and who knows what is happening in her mind. I wish that this would all end but I feel guilty for thinking like that, but I know that she would want the same. I don't know what keeps some elderly people going when they have reached the end of their life and all that is left is to lie in a bed day in day out with no purpose other than waiting for your heart to stop and give you peace. When I visit I come away thinking that I do not want to go again which causes more guilt. I don't thing she even knows that I am there. Is there really any point anymore. It is like having a final viewing over and over again. I just can't face visiting anymore. Reading this back somehow sounds cold hearted, but it is reality and honest.
I feel like this as well.
(((hugs)))

not cold at all , I wouldn’t let an animal suffer like this & cantface visiting
 

DesperateofDevon

Registered User
Jul 7, 2019
3,279
0
@Dominique , your post moved me to tears. Your poor mum has been in the worst possible scenario for several years now. It’s something we all hope to avoid with our loved ones, but we cannot predict how things will go. Why do people’s hearts go on beating long after we think they can‘t? Modern medicine, that’s why. We accept the total disintegration of a person‘s mind while continuing to give drugs to keep their physical vital functions ‘stable’. For the PWDs and their families, it’s like living in a horror film.
I don’t blame you for not wanting to visit. Your poor mum is in a ‘living death’ situation, despite how society chooses to dress it up. You cannot share that experience and continually witnessing it will do you no good whatsoever. Please try not to let guilt interfere too much with your grief as there is absolutely nothing you can do.
Thank you , your post resonated with myself. I do not want to see the living death of dementia day in day out. I am selfish in that I find it too distressing. I will visit once a week I have decided. it’s all I can face atm.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,279
0
I think these feelings are common and not heartless at all. We all want our elderly family members to be happy and comfortable and there's no shame in wanting that to be the priority over prolonging life especially if it is a life of misery. I visited my mother yesterday in a care home. She has severe dysarthria and is unintelligible for the most part. She is obsessed about biscuits and the shouting and wailing must have sounded as if I were prodding her with a red hot poker when I was actually packing her new supply of "Xxx's Favourites" into a plastic container. She has no life as she can't walk unaided, can't chat to anyone as nobody can understand her, can't socialise, won't leave her room, and only has TV for entertainment. She has said by writing a note that she wishes she could die and frankly I don't blame her. There is no shame in wanting a much-loved relative's distress and misery to come to a peaceful end.
No life at all is what mum has said for years - now no life , it breaks my heart each time. Yet Mum still clings to life & I find it harder to watch each week, now under 6 stone . From a solid 12 stone - how much longer ? So cruel this disease.
 

AliceA

Registered User
May 27, 2016
2,886
0
No, not cold hearted just worn out, there is so little support available if any.
Try and find your own way through, every decision has a mix of good and bad, we have to find the one that leaves less pain, we are all different so whatever you choose try not to feel regret. Perhaps ensure others can visit and feed back, have a break, give yourself loving care.
 

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