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Elderly parents

How long does this hell go on for?

190 replies

UnitaBath · 19/08/2026 09:10

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.

OP posts:
Ilovemyfam · 28/08/2026 16:39

If that link doesn’t help, let me know. It was my DBIL who sourced and used the device. I saw the labels in Mums clothes and could see that they worked

NotMeNoNo · 28/08/2026 17:23

Please don't feel guilty about "putting your DM in a home". She will have very little sense of her surroundings by now. My mum's home had become strange and frightening for her and a prison for my dad trying to provide her 24 hour care. She is so settled and safe in her care home. People who say "don't put me in a home" aren't thinking it through because they probably haven't seen what care for a person with advanced dementia looks like.

If they did they would not impose it on their loved ones.

UnitaBath · 30/08/2026 12:55

IHopeTheNextSessionIsBetter · 28/08/2026 09:54

Hi OP
My heart really went out to you when I read your post. Mainly because I have been through it with my own parents and I know exactly what you are talking about. My case was slightly different because I gave up work to do it and so had more time than you. However my dad passed quickly after getting ill (within 8 weeks) so he was not too much bother really. My mum (diagnosed BPD) was the one that quite frankly just about killed me. My dad had done everything for her all his life including take her abuse once the kids left home. With him gone and my siblings refusing to get involved I became cook, cleaner, entertainment provider, admin sorter, scapegoat for her moods/abuse. I got seriously depressed and put on 6 stone. However I was dealing with a very difficult person who told lies regularly for attention (police, ambulance, siblings, friends). Then I would get a call from social services who were furious they had been called out in an emergency after my mum reported she had no food or money. They got to her house and of course she had both. Then they would phone me and I would get the flack for it (like I could control her?). I would take her to the doctors for antidepressants, she would cry noisely in the car park, the reception, the doctors office then after I had been to the pharmacy to get the tablets she would refuse to take them. She actually got a scan (MRI?) to check for dementia but she did not have it, just normal old person decline. This was less than a year before she died. I was getting paid to do this by the way by parent. I had honestly forgotten how bad she was having left home many years before and not seen the 'bad' side of her since I lived at home.
She changed her will to leave me her estate and told my siblings who promptly decided I had stolen her money so god knows what she told them. However she also left them a letter to tell them how disappointed she was in them which her solicitor passed after she died. I will no doubt be getting blamed for that as well by siblings even though I actually told her that was a really hurtful thing to do and the last thing she would ever say to them. Her response - I wish I could be a fly on the wall to see their faces when they realise they are getting nothing.

I haven't mentioned yet the scrubbing the shit stains out of the carpet when she became incontinent. Washing her soiled underwear. Doing personal care for her because she refused to let anyone else do it. Driving her to the chiropodist to get her nails cut as they got too tough for me to do where I had to talk her into letting the lady do it as she was black/brown and my mum wanted another chiropodist.

Ironically my siblings saved me (not on purpose) by pushing for her to go into a nursing home which she didn't want. She had a little bungalow on an old persons complex which was perfect for her and she wanted to die there. My siblings I think wanted her to go to care home so the inheritance was eaten up. She died 6 weeks after going in. Probably just as well as they were having a terrible time with her upsetting all the other residents and quite honestly she would not have got the same care she was getting from me. The relief when she died was overwhelming.

By this point she was on so many tablets which I religiously ensured she took every day although she used to talk about stopping them and then change her mind. I used to think how crazy it was keeping someone alive in this state but because she didn't have dementia and 'just' heart failure and then became frail and incontinent she was able to call ambulances every week and be taken to hospital where I think she enjoyed the attention.

For me the regular work of cleaning, appointments, admin etc was very busy and took over my whole world. I also had anticipatory grief dealing with her. A strange type of grief you have for a mother who was mentally ill/abusive but still grief and I would cry alot.

My dad needed help with admin, chores, appointments but he was cooperative and not abusive and even then I was pretty tired doing it for only 8 weeks.

I think it is a mixture of physical and mental exhaustion trying to remember everything that needs done, dealing with the grief of watching them decline, dealing with the effect on your own health, facing up to your own mortality as you think you are seeing your own future. I honestly didn't think I was going to survive it and honestly thought it was going to be 'me or her' ie if she didn't die soon, then I probably would.

In the end her heart gave out suddenly at the end in the care home but like I say strange how she suddenly died after I stopped looking after her. I still wonder if they accidently on purpose forgot to give her something as she was causing them so many problems.

Anyway almost 3 years later (I looked after her for four and a half years) I am only slowly recovering. Like you I didn't know what I was getting in to really. I didn't think it would go on so long and I had no clue as to how much work is involved in the looking after of an old person. So many appointments constantly. So much work trying to keep them clean, sane, entertained, happy. For my own ending I pray for a quick death - quick heart attack in my home and then gone. Not so good for whoever has to find me probably weeks later as I live alone but definately better for me.

We really do need to do something about keeping old people alive beyond when nature would have killed them off. Perhaps when they get to 80 or something medicine gets withdrawn and they are just kept comfortable. It's tricky though as I guess some older people live good quality lives on a few tablets and so withdrawing it for them would probably be wrong. Nobody wants to push the red button either so we are all got up in this trap of hell waiting for old person to die off.

I had a thread on mumsnet which helped me alot called so bloody exhausted waiting for old person to die started in Aug 2023. The thread took on a life on it's own and went on even beyond when my mum died as lots of people used the thread as comfort. There were versions 2 and 3 and I'm not sure how long it stayed alive for as I stopped reading it. Anyway it helped me alot to vent my frustrations and stay sane.
Only those that have gone through the exhaustion, the grief, the fear, the uncertainty, the constant limbo with no end date can understand.

I promise you it will pass but unfortunately you will never be the same person again. It will also take you a long time to recover from it all if you ever do.

Huge hugs.

Thank you so much. I remember your thread well.

I'm so sorry you have been through this too, it changes you forever, doesn't it?. I also gave up work 6 years ago to help my parents, I've had to return to some part time work recently as I'm getting into so much debt because carers allowance is a pittance. My dad gives me £50 a month for my 'help' but that doesn't even cover the cost of all the driving around and telephone calls I make for them let alone anything else.

Even though people tell me not to feel guilty I think I will forever more feel that way, I just can't shake it off. My dad has had to have an emergency cystoscopy today and a CT scan on Tuesday. I have my CT scan on Tuesday as I have a large kidney cyst that has grown and next month I have my hysterectomy (he doesn't care about that, he only wants to talk about his health issues). But I'm scared and exhausted too so I asked my sister if she can accompany our dad today and on Tuesday for his CT scan whilst her partner sits with mum. She has agreed but I know she'd prefer me to do it but over the years I've attended all of mum's hospital appointments, I was there at the breast cancer clinic when she had her tests and diagnosis, I've also attended every follow up appointment since and previous to that every dementia appointment and every GP appointment, my sister has not attended one of these or even offered to. My husband says I should feel no guilt at all because it's my sister is attending today and not me but I do, I can't help it.

OP posts:
EmotionalBlackmail · 30/08/2026 15:55

Why does he need accompanying to the CT scan if he’s fit enough to be out and about? It sounds like he’s manipulating you into attention that isn’t necessary.
It’s not like having an anaesthetic where you need someone with you for 24 hours afterwards.

UnitaBath · 30/08/2026 19:57

EmotionalBlackmail · 30/08/2026 15:55

Why does he need accompanying to the CT scan if he’s fit enough to be out and about? It sounds like he’s manipulating you into attention that isn’t necessary.
It’s not like having an anaesthetic where you need someone with you for 24 hours afterwards.

Because understandably, he's got himself into a tizzy as he's been put on the cancer pathway and the stress is making him feel dreadful. This has all occured this week. He had a scan a few weeks ago and they called on Friday to say he needed to come in today.

He was supposed to have a cystoscopy today but they struggled so he now needs an urgent appointment to have it done via a GA.

He's 85, we wouldn't expect him to go to these appointments on his own. Even though he can be a right pita at times he's still our father. It now means one of us will need to stay over with mum as he will be kept in overnight because of the GA.

It's never ending 🙄

OP posts:
EmotionalBlackmail · 30/08/2026 20:10

Ah understandable.

Sorry, it touched a raw nerve. We’ve had two cancer scares so far this year in my generation (let alone the one above!) and have had to go on our own to the scans and tests etc as no childcare.

Nugg · 30/08/2026 20:10

It’s hell isn’t it. And heartbreaking. My parents were not together but dad had mixed type dementia for 9 years and then my poor mum ended up with MND and lasted 13 months beyond diagnosis. Much crueler disease as she was aware of everything til her last breath. I’m a different person since caring for them both and ultimately losing them.

it is life changing. Sending so much love and strength to you ❤️

StopGo · 30/08/2026 21:15

Almost 25 years for my mum. Now with that amazing thing called foresight I’d have bailed out years ago. I’m a wreck of my previous self

UnitaBath · 30/08/2026 21:24

EmotionalBlackmail · 30/08/2026 20:10

Ah understandable.

Sorry, it touched a raw nerve. We’ve had two cancer scares so far this year in my generation (let alone the one above!) and have had to go on our own to the scans and tests etc as no childcare.

Not at all, you weren't to know, this has all happened over the last few days.

OP posts:
UnitaBath · 30/08/2026 21:26

Nugg · 30/08/2026 20:10

It’s hell isn’t it. And heartbreaking. My parents were not together but dad had mixed type dementia for 9 years and then my poor mum ended up with MND and lasted 13 months beyond diagnosis. Much crueler disease as she was aware of everything til her last breath. I’m a different person since caring for them both and ultimately losing them.

it is life changing. Sending so much love and strength to you ❤️

I agree, dementia is dreadful but MND is on a whole other level. I am so sorry you've been through that. So sad.

OP posts:
UnitaBath · 30/08/2026 21:28

StopGo · 30/08/2026 21:15

Almost 25 years for my mum. Now with that amazing thing called foresight I’d have bailed out years ago. I’m a wreck of my previous self

I really feel for you, 25 years is such a very long time. It really does change you, doesn't it.

OP posts:
sealhappy8419 · 31/08/2026 09:15

Was at my friend’s house for Sunday lunch yesterday. Haven’t seen them in months and months due to ongoing demands of elderly care. During the meal I took a call from an unknown number. Was a mental
health professional calling about some confusion that had arisen over when I had agreed a new medication for my DM after a recent drama where she told the care home staff she would kill herself with a knife. The conversation ended up being about 20 minutes long because I was having to unpick all the inaccurate miscommunication that seemed to have happened across about four different agencies around this recent event. ‘No she didn’t have a knife. Yes she was psychotic. No the paramedics didn’t take her. No that’s not the medication requested it will interact with her other meds. No I can’t come reduce some of the stuff in her room tomorrow. No the care staff do not always notice if she’s got her shoes on the wrong feet. Yes she is angry that she can’t go out. No that will not help her depression. No I do not want you to increase her antidepressants. Yes I talked with the GP about this. No it wasn’t referred in the end as the anemia results were ok. Yes it’s on her respect form………”

My friend’s face when I got off the phone was 😮

They were incredulous saying “But it’s Sunday afternoon at 4pm! I can’t believe they called you at this time” I explained that with long term elderly care, even if they are in a care home, it never ever stops and every conversation and/or decision gets more traumatic, with greater weight, with complex ethical dilemmas attached.

UnitaBath · 31/08/2026 10:37

sealhappy8419 · 31/08/2026 09:15

Was at my friend’s house for Sunday lunch yesterday. Haven’t seen them in months and months due to ongoing demands of elderly care. During the meal I took a call from an unknown number. Was a mental
health professional calling about some confusion that had arisen over when I had agreed a new medication for my DM after a recent drama where she told the care home staff she would kill herself with a knife. The conversation ended up being about 20 minutes long because I was having to unpick all the inaccurate miscommunication that seemed to have happened across about four different agencies around this recent event. ‘No she didn’t have a knife. Yes she was psychotic. No the paramedics didn’t take her. No that’s not the medication requested it will interact with her other meds. No I can’t come reduce some of the stuff in her room tomorrow. No the care staff do not always notice if she’s got her shoes on the wrong feet. Yes she is angry that she can’t go out. No that will not help her depression. No I do not want you to increase her antidepressants. Yes I talked with the GP about this. No it wasn’t referred in the end as the anemia results were ok. Yes it’s on her respect form………”

My friend’s face when I got off the phone was 😮

They were incredulous saying “But it’s Sunday afternoon at 4pm! I can’t believe they called you at this time” I explained that with long term elderly care, even if they are in a care home, it never ever stops and every conversation and/or decision gets more traumatic, with greater weight, with complex ethical dilemmas attached.

So many people really don’t understand it’s 24/7, 365 days per year, non stop. Many don’t have a clue - they are most fortunate.

OP posts:
rookiemere · 31/08/2026 15:19

Yup, other people really don’t get it. It’s a lot better now DPs are at the care home but there’s still that gut wrench every time we get a call, which tends to happen more at the weekend when no managers are around and the staff overreact.

When I was in the thick of it I had people misdiagnose my emotions as sadness “Oh yes it must be hard to watch your DPs decline.” It almost made me laugh, I didn’t have time to mourn the loss of their facilities- I was too busy trying to plug the gap as that’s what everyone seemed to expect of me.

TheignT · 01/09/2026 18:02

I have told my kids not to feel guilty if the time comes when I need to go into care. I have absolved them in advance. Maybe it's something we should all do. My GS told me he'd make sure it was somewhere nice if his dad and his siblings tried to put me somewhere he didn't approve of. It was strangely comforting.

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