How long does this hell go on for?

[UnitaBath]

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.

It’s mad isn’t it. How is your dad?

Sorry you’re going through this OP. Sounds very tough.

So sorry op, wish i could tell you but it varies. Do make sure dnr is in place, and also remember you have a choice re treating normal seasonal illnesses etc. for us it was covid that was the ultimate cause of death but it was 10+ years including 3 in a full nursing home facility with psychiatric care(very violent) honestly we were relieved

He's actually very healthy for an 85 year old but he has never been the easiest of people to deal with and he is very low because of mums illness.

My heart goes out to you. I’ve been through this. It’s horrific and all consuming and it’s torture and traumatic watching someone you love deteriorate like that. Gently, someone once said to me ‘it won’t last forever’ and it won’t - you will have cried all your tears now and you will have some relief when it’s over. Sending you a virtual hug and as hard as it is, make sure you get some time for yourself ❤️

It’s no life for any of you, least of all your poor mum. So sorry you’re going through this, dementia is the illness I dread the most, having seen two grandparents lose all dignity in their final years. Sending a hug.

Im so so sorry but it will only get worse im afraid. My mum lived with Alzheimer’s for about 15 years. I personally would be talking to your dad about a care home at least for mum and if he wants, for him too. Best sort it before an emergency forces it.

It true that it won’t last forever, but it’s 10yrs of your life gone too. We used to get old, ill and die promptly. Now we get old, ill and live on for decades. We really need a sensible conversation about continuing to keep alive people with such a low quality of life.

My friend is an intensive care nurse, her advice is don’t call the ambulance…

I would also be thinking of a care home. It might help your dad have some semblance of a life and free you up too whilst also getting her the care she needs.

I lost my Dad to Dementia earlier this year.

We had been through all.the caring stages - phone calls, then video calls, then him.moving to live with us and then a care home. And in between a and e visits for falls and hospital stays for infections and even sepsis.

Watching and dealing with the slow decline was dreadful.

Everyone has their own dementia story. Dads main risk was that he had retained his mobility but when combined with his dementia this actually increased risks for him.

Eventually we had no choice but to appreciate that a care home was his best option. And it was. At that point the care needed exceeded anything we could offer and be sure he was safe. We found a lovely home, did respite first, and he was happy there.

I went back to being a daughter.

When he sadly passed he was able to be kept in the home, not hospital, with 24 hour care and medical professionals calling. Im sure if he had still been with us at this point he would have died in hospital as we couldnt have coped with those final few weeks of decline.

I hear you and sympathise. Its a dreadful disease and takes its tolls on loved ones and carers.

My dear Mum firstly had a heart attack, several years later she had a stroke and was in a coma for a number of weeks. Within two days of being sent to a wonderful rehab centre my Dad died. Quite a traumatic time. After months she returned home and the only thing affected was speech and the ability to read.
She then had bowel cancer and ended up with a stoma. We all managed to cope along with carers. Just after her 80th we noticed a deterioration which was quite rapid- Vascular dementia. Then macular degeneration and finally hearing loss. She eventually went into a home and became very ill and the hospital sent her back to the nursing home for palliative care. She lived another year but she was just a shell. In truth I grieved from the time of her stroke as we could no longer hold a proper conversation. I feel for both you and your Mum. It was a blessed relief when my mum died peacefully surrounded by her loving family.

We changed GP surgeries for mum this year over to mine and they've been wonderful. We have a ReSPECT form in place with DNR and she is only to be taken to hospital for breakages and little else because hospital stays leave her worse rather than better.

We don't agree to any vaccinations now but that is a battle with dad because he feels they are essential. Everything is a battle with my dad sadly which makes a difficult situation much worse but that's a while other story.

Would your dad consider a care home for your mum ? It sounds absolutely miserable, a family member of mine has had mixed dementia for 10 years (diagnosed ) but there was signs before, they are in care now and it is such a weight of their immediate families shoulders.

I'm so sorry OP, it's such a cruel disease that robs you of the person while they're still alive 😔 it's amazing how the body clings to life and keeps going. I agree that it's no life for your poor mum and must be a huge strain on you and your dad too.

Would you consider a care home where mum can be looked after and you can visit frequently? Your mum might well get more stimulation with the activities there and a better quality of life. Two of my mum's friends with dementia are now in care homes and they are doing so well - they have hair and nails done, singing and other activities and games in the lounge and just yesterday posted pictures of having a bbq outside and an ice cream van, they were all enjoying a Mr Whippy!

I hope you can carve out a little time to take care of yourself and do some self care - you can't pour from an empty cup. Don't put pressure on yourself to do more than you can manage and give yourself some grace when you need to rest.

I'm so sorry OP. It's an awful situation. X

I agree. Elderly frail folk dont seem.to be allowed to pass away peacefully in their own bed anymore. Years ago a fractured hip would be the end. Pneumonia would set in and they would pass on. Now they seem to operate on very elderly people for no good reason, as in a 90+ year old in law who recently fell, broken hip. Operated on and died within the week. Very expensive, pointless and not helpful to anyone

100% agree with this. It’s the most hideous disease for the family to have to deal with. Sending you the biggest solidarity hug.

And imo be careful if you put her in a care home - their job is to care (and do this very well) keeping people alive for much longer than if she remains at home. 💐

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.

Thank you.

Mum goes to a day centre one day a week, they come and get her and care for her whilst she's there. They are wonderful people and if we could find a care home as lovely as the day centre then I think it may work but we've viewed a few this year and they were dreadful which has put us off. We have another to go and look around next week which looks more promising (dad popped in last week and said it was lovely and it has great reviews).

Can I just say, start looking for care homes now. I also felt like I got PTSD from visiting one - I came away and couldnt face visiting another for some time after!

Give yourself time to visit and research. Look into funding options. Consider a respite stay at first.

My Dads home was amazing. He started with a month respite. He could have stayed on (and probably should have) but he wanted to come back to us - so did. His decline continued and he went back fully 8 months later.

The respite helped us - and them - be sure it was the right place for him.

Sometimes a fast decision is necessary but, if you can take time before a crisis hits, you get more chance to understand the home your loved one is going to.

It is quite likely your DM will have another hospital stay before too long. This time do not allow them to discharge her home. Speak to the hospital social worker about discharging her to nursing care.

So sorry, OP, it is very hard to see your own life and potentially retirement plans slipping away.

Is your concern that your mum's life is being extended in a way that she wouldn't want it to be, because her life is such poor quality?

Or is your concern the toll that caring is taking on your DF and you (and your family and your headspace as a daughter not a carer - all perfectly valid)?

Do you or DF have H&W POA?

Residential care will help with the second concern, but the first concern needs a serious discussion with her health and care providers about ensuring her life is not being prolonged and that she will be allowed a natural death. For example has her medication been reviewed and life extending medication stopped? do you have a ReSPECT process in place that says no hospital treatment?

I think there needs to be some big conversations regarding the very elderly dementia ridden people. My mum, when she had capacity, had a DNAR on her files. She had heart problems and thats what took her after 6 months in a care home. When her heart started to fail they still asked us if we wanted an ambulance called. We declined, as per her wishes and she died peacefully hours later.
In contrast, I was watching Inside the Ambulance a while back and paramedics had been called to a frail old man in his 80s with alzeimers. They whipped out their monitors and gave CPR until they reinstated a heartbeat. Then they bundled him into the ambulance and tore off to the local A&E.
I was shouting at the telly. Stop!! Just stop!! Leave the poor old guy alone!!

It's all so hideous and awful OP. I am sorry. My mother just turned 80 and fell and broke her arm last month. We had to sit with her from 10pm to 5am at A&E (no complaints btw, the hospital staff did their best). It felt like the beginning of her decline. She's OK, but this is really a taster of what's to come. God knows what horrors nature has in store for us. I am going to have my heart ripped to shreds, I can see it coming.

It makes me furious that we have so little control over our bodies. We can land probes on Mars, and send back live video footage, yet when it comes to healing the human body, frankly, we're useless. We're still in the dark ages. We can't cure a goddam thing. I know SO many people being tortured by some form of mental or physical illness. A 60-year-old neighbour is bed bound with arthritis, poor guy, and nothing can be done. Another neighbour has been diagnosed with MND. Again, nothing can be done. Dementia, cancer, Parkinson's, MS, you name it we can't cure it. We can treat things, but so could a tribal shaman and, tbh, sometimes I'd have more faith in the shaman.