Page 4 | How long does this hell go on for?

UnitaBath · 2026-08-19T08:10:29+00:00

Mum was diagnosed with Alzheimer's 8 years ago but I had been pushing for a diagnosis at least 2 years previously, so I imagine it's been 10 years + I have been helping my elderly parents navigate this world of theirs almost every day for the last 6 years. I have become their PA in all sense and purpose, the person who has to keep track of everything in their lives, keeping their plates spinning in the air. A role I took on out of love but had zero notion of what I was getting myself into. Mum has a pacemaker due to a heart condition, three years ago she was diagnosed with breast cancer, last summer she had a nasty fall in the garden fracturing her neck. In A&E we were told the type of fracture she had would most likely kill her within a month. She survived and after a month long stay in hospital she came home, worse than before and now doubly incontinent. The state she was in upon discharge we genuinely expected her to die at home within weeks but she kept pushing on. This winter she had an infection of 'unknown origin' and after a 36 hour wait in A&E corridors (where my father picked up norovirus) she had another stay in hospital which saw her deteriorate further and upon discharge to home her GP prescribed anticipatory medication as she appeared to be coming to end of life. 7 months on she is still here - bless her. This summer has been awful for mum, the heat has exhausted her and she spends most of her days just sitting in her recliner chair with her feet up, sleeping on/off all day (she has to have her feet up or her they will turn purple/black). She can not speak, just looks at us with glazed expressions, is double incontinent so has carers in 3 times a day which is costing her £800+ per week. Every now and then she becomes animated and will smile and say a few words but it's very sporadic now. Honestly, what kind of life is this? I cry every day for my poor mum. I love her so dearly and want her to live forever but obviously not like this, this is no life for her, for my dad or for my sister and I. It is such a wicked disease. Why does my mum's poor diseased body and brain want to keep clinging on to life, it is no life at all.

TheignT · 20/08/2026 10:08

Gemilo · 20/08/2026 09:58

We went through this with my mum. With 5 siblings on a rota we felt we should be caring for her ourselves. In the end it was an Occupational Therapist that pointed out we were actually not doing the best for her. In a care home there are qualified carers there 24/7 who are always on hand to see to someone's needs in a suitable environment. It was the best decision that we made. One of us still visited everyday but it eased the load from our shoulders.

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It's recognising when that point has come isn't it. I remember how I agonised about elderly relative where I had LPA, making those choices for another adult is hard even when you really know it is time.

I've started to look at Dh and wonder, not there yet but it's coming.

TheignT · 20/08/2026 10:05

Last night my 80 year old husband suddenly deteriorated. He's been disabled for many years but has deteriorated this year. I called 111 and was offered an ambulance or doctor, I said doctor. They were busy so it was 1am when doctor came. He did a really thorough examination and talked to DH about an ambulance. He accepted it was something DH didn't want. He gave a week's supply of antibiotics, gave advice about follow up with GP and advised that ambulance and hospital might be something DH needs to consider if things don't pick up.

I'm really puzzled hearing about all the people forced to do things when my experience is so different with both my relative who recently died with advanced dementia and my husband.

Gemilo · 20/08/2026 09:58

UnitaBath · 19/08/2026 10:40

I think we are all starting to lean towards this option. We have tried to keep mum at home for as long as possible and genuinely thought we could to the end but it is ruining is all. I have some health issues and they are worrying me and causing me a lot of stress so I'm finding that I'm becoming increasingly snappy withy father and had a row with him yesterday over something and nothing which has left me feeling terribly guilty.

The guilt is the biggest thing with all of this. Guilt I'm not doing enough for them, guilt that I'm doing too much for them and neglecting my own family, guilt for being able to go out, go away etc knowing my dad can't and the ultimate guilt if putting mum into a care home is the worst feeling ever.

It truly is a wicked disease which tears through ever family member.

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We went through this with my mum. With 5 siblings on a rota we felt we should be caring for her ourselves. In the end it was an Occupational Therapist that pointed out we were actually not doing the best for her. In a care home there are qualified carers there 24/7 who are always on hand to see to someone's needs in a suitable environment. It was the best decision that we made. One of us still visited everyday but it eased the load from our shoulders.

Lomonald · 20/08/2026 09:55

KittyCorncrake · 20/08/2026 09:35

Lol /no health anxiety 😂
I don’t wear a mask, unlike the OP..

I probably won't interact with you anymore being hung up on this is weird and I am probably not helping by reacting to you.

Original poster

UnitaBath · 20/08/2026 09:51

KittyCorncrake · 20/08/2026 09:35

Lol /no health anxiety 😂
I don’t wear a mask, unlike the OP..

Good job I did wear a mask wasn't it because I didn't get it. If I had my poor mum would have been on a hospital ward on her own with advanced dementia unable to communicate her needs. As it was they didn't keep her fluids up or feed her so it's a bloody good job I did take extra precautions wearing a mask and using hand gel because my dear mum would have probably died during that hospital stay, she became super dehydrated and ended up with more problems than when she went in.

And I will heed this warning to you now. Keep your fingers crossed that your mother continues to enjoy good health in her latter years. And please take that as a warning seriously because advocating for a confused and elderly loved one in hospital these days is a bloody stressful nightmare. I have had to do this three times during the last 18 months and it is not fun.

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Original poster

UnitaBath · 20/08/2026 09:44

KittyCorncrake · 20/08/2026 09:29

Er the OP actually said that he spread it to her sister…. .
Yes the patient should have son advocate with them, but makes it harder for everyone if another helpless person with wyrstionsblr hygiene (as the OP herself said re the lack of handwashing 🤢) is brought along too.

Edited

What the hell is wrong with you, nit picking for what?

Yes, dad did pass it on to my sister but not in the hospital.

Are you being deliberately obtuse or winding me up for fun? In case it's the former I shall explain a bit clearer.

My dad picked up norovirus in the hospital, when mum was eventually placed on a ward on the Sunday night, dad and I then went home. Dad woke in the night and started throwing up, we assumed it was food poisoning or stress. My sister popped in on dad on the Monday as she had been away for the weekend, she genuinely thought he had food poisoning but when she started throwing up 2 says later it was obvious it was not food poisoning. You think me dad was happy picking up a vomiting bug and passing it on to his daughter?

And not washing you hands whilst sitting in the same seat for 36 hours doesn't make for someone lacking in hygiene, dad was tired and stressed and wasn't thinking.

I had started this thread because I was looking for support from people who have been through this hell and who understands.

You obviously have no idea at all.

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KittyCorncrake · 20/08/2026 09:35

Lol /no health anxiety 😂
I don’t wear a mask, unlike the OP..

Lomonald · 20/08/2026 09:33

KittyCorncrake · 20/08/2026 09:29

Er the OP actually said that he spread it to her sister…. .
Yes the patient should have son advocate with them, but makes it harder for everyone if another helpless person with wyrstionsblr hygiene (as the OP herself said re the lack of handwashing 🤢) is brought along too.

Edited

Yes that is how viruses work which i said is unfortunate but there was no health warning to not go to the hospital, the op could have picked it up and passed it to her Dd, because she was also there are you hung up on this do you have health anxiety or something?

KittyCorncrake · 20/08/2026 09:29

Er the OP actually said that he spread it to her sister…. .
Yes the patient should have son advocate with them, but makes it harder for everyone if another helpless person with wyrstionsblr hygiene (as the OP herself said re the lack of handwashing 🤢) is brought along too.

Original poster

UnitaBath · 20/08/2026 09:27

KittyCorncrake · 20/08/2026 09:19

And spreading norovirus making the situation worse for everyone.
Whyis it so hard to understand that he shouldn’t have been there since by the OP’s own admission SHE has to advocate for ‘them’ - if he isn’t able to do that he shouldn’t be there.

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You obviously have not read my replies well. My dad did not spread the norovirus, he picked it up in A&E as it was rife at that time of year. He wanted to be there with his wife, my mother.

You have admitted further up thread that your elderly mother is well apart from some arthritis. I sincerely hope for you both that she never gets dementia - you have no idea.

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Lomonald · 20/08/2026 09:23

KittyCorncrake · 20/08/2026 09:19

And spreading norovirus making the situation worse for everyone.
Whyis it so hard to understand that he shouldn’t have been there since by the OP’s own admission SHE has to advocate for ‘them’ - if he isn’t able to do that he shouldn’t be there.

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He wasn't spreading it, obviously it is unfortunate he picked it up, but that doesn't take away they are husband and wife he wanted to be with his wife, which is entirely normal and your odd "system" of how you want patients to be treated without support is just odd.

Just because he is elderly and maybe struggles doesn't mean he has no "rights" he is a person in his own right and absolutely should be with his wife if he wants to.

KittyCorncrake · 20/08/2026 09:19

Lomonald · 20/08/2026 09:10

He is her husband he isn't some random man loitering in a corridor that is why he went, why is this difficult to understand?

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And spreading norovirus making the situation worse for everyone.
Whyis it so hard to understand that he shouldn’t have been there since by the OP’s own admission SHE has to advocate for ‘them’ - if he isn’t able to do that he shouldn’t be there.

Bufftailed · 20/08/2026 09:19

This sounds horrific. But you sound like an amazing daughter, they are so lucky.

Original poster

UnitaBath · 20/08/2026 09:12

ChimpanzeeThatMonkeyNews · 20/08/2026 08:55

@UnitaBathI’m so sorry to hear about your troubles.
My FIL has dementia, so I can understand your concerns.
He’s in a home now, but because his behaviour has changed significantly; he’s being aggressive and has assaulted other people in the home. So, my sil is running around like a blue arsed fly to get him into a different home.
And my mil is quite happy to let her daughter get on with it, and not lift a finger to help.
I just don’t get it.

It's so draining, I feel for her.

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Lomonald · 20/08/2026 09:10

KittyCorncrake · 20/08/2026 08:49

Simply that he picked up the norivirus in the hospital where he didn’t need to be.
People turning up with extra family members is creating the very congested and noisy environment you are complaining about!
Would be better if the hospital restricted it to the patient and max one other bperson only.

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He is her husband he isn't some random man loitering in a corridor that is why he went, why is this difficult to understand?

Original poster

UnitaBath · 20/08/2026 09:10

KittyCorncrake · 20/08/2026 08:49

Simply that he picked up the norivirus in the hospital where he didn’t need to be.
People turning up with extra family members is creating the very congested and noisy environment you are complaining about!
Would be better if the hospital restricted it to the patient and max one other bperson only.

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Do you actually have any experience with advanced dementia and elderly parents?

My father wanted to be with his wife, he is deaf and 85 years old so I also accompanied them to advocate for them both. Never once were we told we shouldn't be there.

The congestion was due of the amount of patients admitted not the number of family members there, if you have read any of my replies you will see that I have mentioned most of the elderly people were on their own in the corridors - scared, bewildered and alone.

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ChimpanzeeThatMonkeyNews · 20/08/2026 08:55

@UnitaBathI’m so sorry to hear about your troubles.
My FIL has dementia, so I can understand your concerns.
He’s in a home now, but because his behaviour has changed significantly; he’s being aggressive and has assaulted other people in the home. So, my sil is running around like a blue arsed fly to get him into a different home.
And my mil is quite happy to let her daughter get on with it, and not lift a finger to help.
I just don’t get it.

KittyCorncrake · 20/08/2026 08:49

UnitaBath · 20/08/2026 08:30

Because mum is 83 years old with advanced dementia, we both accompanied her to the hospital, I went in the ambulance with her and dad followed in the car, why would we not go in to A&E with her? Sorry I don't quite understand your question.

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Simply that he picked up the norivirus in the hospital where he didn’t need to be.
People turning up with extra family members is creating the very congested and noisy environment you are complaining about!
Would be better if the hospital restricted it to the patient and max one other bperson only.

Original poster

UnitaBath · 20/08/2026 08:44

SavBlancinRecovery · 20/08/2026 08:39

And the other issue is once a person is in a care home for years it’s very difficult to get them back out and look after them at home again. It really is the most terrible dilemma and I wish I had known the reality of what we were deciding 5 years ago when we moved my DM into a care home.
she would be horrified to know the reality she is “living” in now sadly.

Again, this is something we keep telling dad, he seems to have changed his mind recently and is leaning more towards care homes but he is also a very fickle man and will instantly blame others when things go wrong, even if he was the one who made the decision. I have told him he absolutely can not agree to mum going into a care facility then changing his mind weeks/months later and wanting her back home.

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Original poster

UnitaBath · 20/08/2026 08:40

ChimpanzeeThatMonkeyNews · 20/08/2026 08:05

Because he went with his wife in the ambulance, and stayed with her, presumably.

It’s easy to pick up, particularly if you’re elderly.

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It is. We sat in the A&E corridor for 36 hours, during that time I wore a mask and didn't eat anything (I have emetophobia, it was January and high norovirus season), dad thought I was ridiculous and ate throughout that time and didn't wash his hands that frequently despite me telling him too, he then passed it on to my sister a day later. It was NOT a fun time lol!

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SavBlancinRecovery · 20/08/2026 08:39

And the other issue is once a person is in a care home for years it’s very difficult to get them back out and look after them at home again. It really is the most terrible dilemma and I wish I had known the reality of what we were deciding 5 years ago when we moved my DM into a care home.
she would be horrified to know the reality she is “living” in now sadly.

Original poster

UnitaBath · 20/08/2026 08:35

SassyLemonFish · 20/08/2026 07:59

Yes they can and do. Doctors are obliged by law to consider all life extending treatments. We had this problem for FIL. Repeatedly sent to hospital for various intravenous whatnots despite his being distressed every time the paramedics came to fetch him. We had a respect form in place. The cynic in me also suspected it was unofficial but standard protocol in his nursing home for staff to call an ambulance at the slightest twinge a) because they feared being sued b) it was the start of the weekend and they were short staffed

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This is what worries me.

I do have some concerns and apprehensions about care homes and tbh that is one of them, we have a degree of control for mum whilst she is still living at home which is one of the reasons my sister and I have been pushing dad to agree to a day carer. If mum does have to go into a home I will make sure I have a written agreement for them to respect our wishes.

I do worry with care homes that they are businesses at the end of the day and a lost resident is a lost customer - call me cynical but that's how dementia care has left me feeling.

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SavBlancinRecovery · 20/08/2026 08:31

SassyLemonFish · 20/08/2026 07:59

Yes they can and do. Doctors are obliged by law to consider all life extending treatments. We had this problem for FIL. Repeatedly sent to hospital for various intravenous whatnots despite his being distressed every time the paramedics came to fetch him. We had a respect form in place. The cynic in me also suspected it was unofficial but standard protocol in his nursing home for staff to call an ambulance at the slightest twinge a) because they feared being sued b) it was the start of the weekend and they were short staffed

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Agree. If I look back at the numerous times it’s always a weekend.
inspite of DNR and respect they have an oath to do no harm and short of not eating / drinking (which someone riddled with dementia can’t remember to refuse) they will sustain life as we don’t live in a state with the right to die.

it’s extremely sad and hence why I said be careful about getting into the care system as it can extend life by years - as it has in our case.

Original poster

UnitaBath · 20/08/2026 08:30

KittyCorncrake · 20/08/2026 07:54

Why was your dad there when it was your mum the paramedics took in?

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Because mum is 83 years old with advanced dementia, we both accompanied her to the hospital, I went in the ambulance with her and dad followed in the car, why would we not go in to A&E with her? Sorry I don't quite understand your question.

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ChimpanzeeThatMonkeyNews · 20/08/2026 08:05

KittyCorncrake · 20/08/2026 07:54

Why was your dad there when it was your mum the paramedics took in?

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Because he went with his wife in the ambulance, and stayed with her, presumably.

It’s easy to pick up, particularly if you’re elderly.