End stage Alzheimer's

Gladys1946

Registered User
Feb 17, 2019
67
0
Does anyone else feel the way I do? My husband is in a Care Home and has had Alzheimer's for 7 years now. He has been deteriorating over the past 12 months and since Christmas markedly so. He developed a chest infection last week and as we have a TEP in place for no interventions, they rang to ask about antibiotics. My daughter and I both agreed he should have 1 course. On Sunday when we visited he was very unaware of both us and his surroundings. Then had a phone call yesterday to say he was quite poorly so I dashed off to see him, expecting the worse. Went again today and he is much brighter. I'm struggling, really struggling with the roller coaster of emotions. I had myself absolutely ready for the end, after all we've been facing it for 7 years but this constant up and down is so distressing. I feel guilty about my feelings but just wanted to see if anyone else understands.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,343
0
Nottinghamshire
Hi @Gladys1946, I totally understand. My mum was in care for four and a half years. The last eighteen months or so she wasn't eating a lot, couldn't walk much and was incontinent. New Year 22/23 she was in hospital with sepsis and had a course of anti-biotics. While she was there they spotted what could have been cancer, but as a family we decided that further tests wouldn't serve any purpose. I was torn between not wanting her to carry on living a sort of half-life and thinking that wishing she would pass away was totally heartless of me. In the end mum had a sharp down turn in October and died a few days later. Even while the home was telling me how ill she was I kept on thinking she would bounce back. Of course I am sad that she died, but I'm also glad she is free of this horrible disease.
 
Last edited:

Gladys1946

Registered User
Feb 17, 2019
67
0
Hi @Gladys1946, I totally understand. My mum was in care for four and a half years. The last eighteen months or so she wasn't eating a lot, couldn't walk much and was incontinent. New Year 22/23 she was in hospital with sepsis and had a course of anti-biotics. While she was there they spotted what could have been cancer, but as a family we decided that further tests wouldn't serve any purpose. I was torn between not wanting her to carry on living a sort of half-life and thinking that wishing she would pass away was totally heartless of me. In the end mum had a sharp down turn in October and died a few days later. Even while the home was telling em how ill she was I kept on thinking she would bounce back. Of course I am sad that she died, but I'm also glad she is free of this horrible disease.
Thank you for this. X
 

Blissy

Registered User
Jan 29, 2023
173
0
I also totally understand. My husband had sepsis last year and we were warned he was very poorly so you prepare yourself. In our case my husband pulled through but I did question if it wouldn't have been better if the end had come then rather than prolonging this awful disease that is a half life for sufferer and carer. I feel guilty for having these thoughts but know they will be understood on this forum.
 
Mar 20, 2024
2
0
My wife has early onset dementia she has stopped eating and drinking unless I give it to her but still eating is only a few bites. She begs me to take her home but I am not sure I can care for her. As I am on a wheelchair and we have no family or close friends. I am alone in this and it is very tuff
 

Firecatcher

Registered User
Jan 6, 2020
605
0
My Mum had was diagnosed with Alzheimer’s in 2020 and was in the end stage for the last 12 months. It was really awful to see and she wouldn’t have wanted to have lived like this. I anticipated this would continue for years as she had no other health problems. Mum died suddenly at the beginning of this week and although the paramedics were called out by the home I’m glad there were no medical interventions and she was allowed to pass away peacefully. I’m sad about my Mum but relieved her suffering is over.
 

Banjomansmate

Registered User
Jan 13, 2019
5,532
0
Dorset
I also totally understand. My husband had sepsis last year and we were warned he was very poorly so you prepare yourself. In our case my husband pulled through but I did question if it wouldn't have been better if the end had come then rather than prolonging this awful disease that is a half life for sufferer and carer. I feel guilty for having these thoughts but know they will be understood on this forum.
My Banjoman had sepsis and wasn’t expected to last the night. Next day he was sitting up eating ice cream. I was prepared for the worst but he came out of hospital and returned home to his flat. His decline was steady until he fell and broke his femur then he deteriorated rapidly. I have often thought that it would probably have been kinder to him if the antibiotics hadn’t worked successfully and he wouldn’t have suffered the indignities of his last 15 months.
 

canary

Registered User
Feb 25, 2014
25,277
0
South coast
My Banjoman had sepsis and wasn’t expected to last the night. Next day he was sitting up eating ice cream.
I had the same. OH was taken to hospital with sepsis and wasnt expected to recover. I told his brother and the next day his brother and I visited to say goodbye and found him sat up in bed reading!! I felt a total fraud.

My wife has early onset dementia she has stopped eating and drinking unless I give it to her but still eating is only a few bites. She begs me to take her home but I am not sure I can care for her.
This is very very common with dementia. If you took your wife home she would probably still be asking to go home, because this isnt about bricks and mortar. What your wife is asking for is to go back to a place (often a childhood home) where she felt safe, and she thinks that if she did that she would leave all the confusion of dementia behind - not realising that she would simply take it all with her.
Its not easy
xx
 

leny connery

Registered User
Nov 13, 2022
408
0
Does anyone else feel the way I do? My husband is in a Care Home and has had Alzheimer's for 7 years now. He has been deteriorating over the past 12 months and since Christmas markedly so. He developed a chest infection last week and as we have a TEP in place for no interventions, they rang to ask about antibiotics. My daughter and I both agreed he should have 1 course. On Sunday when we visited he was very unaware of both us and his surroundings. Then had a phone call yesterday to say he was quite poorly so I dashed off to see him, expecting the worse. Went again today and he is much brighter. I'm struggling, really struggling with the roller coaster of emotions. I had myself absolutely ready for the end, after all we've been facing it for 7 years but this constant up and down is so distressing. I feel guilty about my feelings but just wanted to see if anyone else understands.
 

leny connery

Registered User
Nov 13, 2022
408
0
I just had another heart rending episode trying to explain to my husband, who now in a blink of an eye sees me as his (long dead)mum. I know he cannot help it. I understand he cannot be made to understand but somehow I just could not take it anymore. The fact that he does not see ME and then when I suddenly reappearedit in his eyes he scolded me for leaving him and mum alone without saying good bye or where I was going. I am tired of making excuses, phoning from a different room to make up story where I am, often having to make a bed somewhere else as mum of course does not sleep with him, dealing with his anger or moodiness when I reappear in his eyes having disappeared. this has now been going on for months and is getting more hard to deal with. I see his confusion, his hurt, his incomprehension why I am upset. I start thinking of an end, sure. He is tormented, I am tired out, and there is no end in sight except death, his or mine. It seems the ultimate release, isn't it? God help me, I still love him and will not abandon him.
 

pobbie1959

Registered User
Jan 15, 2024
10
0
My husband has mixed dementia and over christmas/new year had a psychotic episode, it was absolutely the hardest time for both of us and I too thought that death must be the only answer for both of us, but he's now on anti psychotic medication which helps, we have brilliant doctors and a great CPN, I don't feel ready to put him in a care home yet so I'm trying for regular respite and extra help to give me a break when he's at home. He started with symptoms in his mid 50's and he's now 71, he had an official diagnosis in 2018 but in reality we have been living with this for 15 years, its heartbreaking knowing that the only release will be when he dies, we've been together 21 years and I've known him longer with dementia than without.
 

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