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I don't think that I want to visit anymore

Mariane

Registered User
Jul 27, 2021
24
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.
My sister died in July exactly in the way you describe and I can identify with every one of your expressed feelings and guilt. But I think I had and have less guilt than you because I kept thinking who wants to live like this? my sister weighed 98 libs and there was nothing left of the person she once was. She absolutely did not know I was there during the last week of her life. I was relieved when she finally died not for myself but for her. I am still sad that her last days were so tortured and I hope you will feel the relief without guilt. i kept going thinking that I would be there when she went home to God. I wasn’t. She died in the middle of the night . any of us who write here at least can take comfort knowing we are among the many, many who have witnessed the terrible end resultmof Alzheifers disease. Soon she will be at peace.
 

MartinWL

Registered User
Jun 12, 2020
1,962
0
65
London
I agree with the others who feel relieved when a loved-one dies, if their quality of life was terrible. My own mother is currently very weak, has deteriorated in the last week, and doesn't look as if she will last long. Her life can only be called miserable currently, she has no pleasures, is wholly dependent on care home staff for everything, and is now almost bedridden. I will mourn her passing when the time comes, but of course I don't want to see her in her current state.
 

Bun

Registered User
Oct 2, 2021
57
0
I am new to talking point. So sorry to read your messages on end of life, for your loved one's. My lovely husband, has Vascular dementia. I was his carer for 12 yes, he went into care earlier this year. His short term memory is really bad, but he still knows me. He is 91years old, the dementia has been very slow, but not now. I am dreading the outcome for him. I pray he will die in his sleep. My heart goes out to all of you, who have gone and are going through this 💓 breaking experience.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
11,896
0
Yorkshire
hello @Bun
a warm welcome to DTP

just wanted to send you and your husband best wishes

now you've joined our supportive community, keep posting; it helps to share with others who understand
 

Bun

Registered User
Oct 2, 2021
57
0
Thank u. Still trying to find my way around this site. Not gd at reading directions , need to be shown, doing ok so far. The support has 🐝 great.
 

Loz18

Registered User
Feb 19, 2021
26
0
Harwich
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.
 

Loz18

Registered User
Feb 19, 2021
26
0
Harwich
Hi Dominic.
I am totally with what you are saying. My dad has alzeimers and has had for 2 years. My mum past away end of May this year and which was a total shock. My dad never saw hr go to hospital so was a total shock to him the following day when she past away. He immediately needed 24hr care which I did until we got full time carers in. He is currently at home. He contracted covid which was mild but his alzeimers accelerated so quickly. He's been bed bound at home now for about 4 months.... Can't move... Aspirates with everything he takes in.... Can hardly talk... Can hardly cough... He's got cancer aswell and now got gangrene in his foot. Nothing can be done now except to keep him comfortable and hopefully pain free. He knows who I am and we tell each other we love each other every day.... But..... This is absolute torture... Watching my dad deteriorate everyday is the most horrible thing to watch. I love him so much and still grieving for my mum. Visiting is pergetry but even though I hate going because I can't stand seeing him like this I need to go because he needs me. He is now on palliative care and it's heartbreaking. I just want to help him but there is nothing I can do. Helpless.
Why is life just so ****** cruel.!!!!!
Dad couldn't even go to mum's funeral because he was so not well. I stayed with him so I couldn't go either.... We had to watch it on the TV.
I just don't want my dad to suffer. His body is breaking down.
I need to stop typing..... There is so much I want to say.
Sorry........... Thankyou for listening x
 

Relatively

New member
Feb 28, 2022
4
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 just read your post. I think I understand what you are saying. I have a 91 year old mom who has dementia and lives with me. Lately, I have been seeing most of the same symptoms in my mom and I wonder if she is in her final stage and thus the reason I found this site. She sleeps a lot, eyes are mostly slits, can not recognize speech sounds due to being hard of hearing, has been hallucinating, talks to people who are not present, has fallen 2 X this week so far, doesn't eat very much at a time, but often if awake or can't remember is she has, does not know if it is morning or night or the day of the week and more. She is ready to go, but I do not want her to, so I am being selfish, but i do not want her to be this way either. It's so different from what she used to be. She is tired and frail. I am hoping she can remain home with me, but I am getting concerned about being able to get her up when she falls. The disease is very difficult. You do not need to feel guilty.
 

Sheelagh7

Registered User
Feb 25, 2022
45
0
I am totally with what you are saying. My dad has alzeimers and has had for 2 years. My mum past away end of May this year and which was a total shock. My dad never saw hr go to hospital so was a total shock to him the following day when she past away. He immediately needed 24hr care which I did until we got full time carers in. He is currently at home. He contracted covid which was mild but his alzeimers accelerated so quickly. He's been bed bound at home now for about 4 months.... Can't move... Aspirates with everything he takes in.... Can hardly talk... Can hardly cough... He's got cancer aswell and now got gangrene in his foot. Nothing can be done now except to keep him comfortable and hopefully pain free. He knows who I am and we tell each other we love each other every day.... But..... This is absolute torture... Watching my dad deteriorate everyday is the most horrible thing to watch. I love him so much and still grieving for my mum. Visiting is pergetry but even though I hate going because I can't stand seeing him like this I need to go because he needs me. He is now on palliative care and it's heartbreaking. I just want to help him but there is nothing I can do. Helpless.
Why is life just so ****** cruel.!!!!!
Dad couldn't even go to mum's funeral because he was so not well. I stayed with him so I couldn't go either.... We had to watch it on the TV.
I just don't want my dad to suffer. His body is breaking down.
I need to stop typing..... There is so much I want to say.
Sorry........... Thankyou for listening x
Hi @Loz18, I can really relate to what you are saying as I'm in exactly the same situation with my mum. It's horrendous and cruel for all concerned. You feel so helpless as there's nothing you can do. We've started joking we will take a pillow with us when we visit the nursing home to put her out of her misery! Obviously we wouldn't but dark jokes seem to help us, for example complaining she's talking so much we can't get a word in edgeways (mum can't really speak any more). All I can say is unfortunately you're not alone as there are lots of us going through similar experiences with this awful disease.
 

millalm

Registered User
Oct 9, 2019
242
0
I've read through all of these posts and, as usual, as well as bringing tears, it strangely brings some relief knowing there are others praying for the demise of their loved ones as a kind alternative to the slow death we are all watching. When people ask how Mum is , my answer is always 'Oh just the same' because I do not want to have to describe the horror my Mum is living through. Plus, they wouldn't understand, so it all stays pent up inside. My reality is a variation of all of the stories on this thread, and the stories of those who have not yet shared. I spend 3 hours almost every night at the care home feeding and caring for my Mum (almost 89), getting her ready for bed and lotioning her head to toe, washing her face and curled up hands, pleading with her not to resist my efforts to ease her arm and hand contractures so I can keep the circulation going, and her finger tips healed. Most days her eyes are small slits, her tear ducts no longer working, she is either silent or mumbling incoherently in conversations with people I can't see, and grimacing but I can't tell if it is discomfort, fear or 'just' dementia. Her skin is so thin that she bruises at the slightest rub, her once well developed calf muscles have wasted away to little sticks, her hair is getting thin and she is now hoisted from bed to wheelchair for few hours then back to bed, where she is toileted like a baby ( on a predetermined schedule) because she can no longer safely sit on a toilet even with a lift. I carry on an inane one-sided conversation, telling of old family stories , nursery rhymes, whatever song pops into my head with false gaiety and much gusto. She only reacts to Galway Bay so I sing it over and over some nights when she seems frantic. As of this week I can no longer manage to wrestle her into the nighties I have adapted using snap closures because she is now in bed after lunch through dinner because she was slipping off the front of her wheelchair in her effort to place her feet on the floor to push herself backwards in the chair which causes her body to stiffen into plank! It took three strong PSWs to get her out of the chair using a hoist that is not made for moving a 5 foot plank! I hate leaving her when I am not sure if it will be for the last time, I come home and fall on the couch , without the energy to interact with my husband, or enjoy TV or even reading. My nights are filled with frantic dreams, always trying to get somewhere but never able to get there. I dread going most nights now, but she is still my lovely Mum so I just suck it up and go, but it is getting harder, and this is the time of year when another resident (or two) seems to die each week ( it is a large home) which just makes it all so much more depressing, especially when you see families moving furniture of their deceased loved ones out as you arrive!

Three years ago this month my Mum was deemed 'end of life' suddenly due to a mixup, and a few missed meals. We followed the palliative care model which stopped her meds and only offered food and liquid but not regular meals. After about three days I expected Mum to be on her last breath when she suddenly started to suck on a mouth care swab! I was not ready for her to go, so I dropped liquid into her mouth with a straw and when she swallowed it I began a 'heroic' campaign to pull her back from the brink. We had one good month when she was able to talk with us and propel her wheelchair before the decline started again. I realize in hindsight it was a selfish thing to do on my part and I wish I had had the courage to let her go then. I have learned my lesson and it won't be any easier to let her go , but this time I will be thinking about her 'life' not mine. There is no quality to the life her body is living, and she would be furious with me for letting dementia rob us of our lives.

Whew! This is the first time I have put this down in words. I know I am not alone on this soul sucking journey and that helps.
Wishing us all strength to endure.