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.

My poor sil, she’s really been through the mill. My mil bats away any attempt to help support sil.
Her answer is always ‘my daughter will do that’.
My husband offered to take his Dad to a hospital appointment, and my mil said that ‘only sil can do hospital appointments, cos she knows all the big words’. 🙄

I pointed out to my husband that perhaps sil doesn’t constantly want to be at your mum’s beck and call.
Sil has 3 brothers (only 2 are of any use) who are always willing to help.
I said tell your mum off a little bit. Don’t let her do this to your sister.

My sil has told me that this whole debacle has ruined her relationship with her parents.

It's crap.
But ditch the guilt. My OH died slowly and miserably and went to nursing home in the end. I can think of a list as long as my arm of things I could have done better for him but if I were to dwell on them, insanity would ensue. We are all only human and can only do our best.

I ring fenced a couple of activities each week and continued those both at home (bought in care for those times) and after he was in nursing home. Very important to do this.

It certainly gives pause for thought as to what I want at the end ...

You are going to be ok. It’s so hard but you’ll be ok. If you choose you a bit more.

For me, there were a couple of things that happened outside of my mother, that really were a wake up call for me. One was my child got very ill. Not life threatening in the slightest but because everything had been about my DM for years, I’d taken the foot off the gas with home life. Because my DM’s situation always seemed worse. Anyway my child got really ill from chicken pox. I’d meant to take them for the vaccine (only £70) and it kept getting put off and put off and put off because of my DM. Then my child got it - the most severe case the GP had ever seen. The guilt was enormous. I was kicking myself and still feel guilty to this day. Then a beloved pet died. I’d barely managed to spend any time with the pet in the last few years. These incidents, and a few more, were the last straw. You need to reframe it as ‘putting your children/pets/husband whatever it is first’ rather than doing less for the ill elderly person. Once I decided on this it was much easier ti handle. I also ended up in therapy.

My late Mil had vascular dementia and she eventually died from heart she went downhill rapidly from diagnosis to her dying was 2 years it seemed to be a sudden onset.but it was a relief really.

It also runs in my family but my family member as I said is hanging on and their family have no resuscitation in place and their other illness is also being treated so that might be keeping them going.

I think with DH it was because the symptoms suggested sepsis. The doctor was in two minds about it as it wasn't conclusive when he examined him. He did talk to him about really needing to think about hospital if things get worse and it is sepsis.

Thank you he wasn't great earlier and I was starting to worry about the hospital issue but in the last couple of hours he has started to improve so I'm keeping my fingers crossed. Hopefully the antibiotics are working their magic

Typical after years with all the worries about elderly relative and making decisions with LPA and then this happens.

We have made an appointment to view another care home next week and hope this one ticks at least some of the boxes.

I feel really low today. There is a lovely care home literally 5 mins from where we live, we used to go to the dentist cafe there, it's a lovely place. It's around £1700 pw, we've already spent £50k this last year on at home care for mum so her funds are dwindling but she still doesn't qualify for any help. Because there is only enough savings for about a year at this care home they wouldn't accept mum as they need proof of 2 years worth of savings in order to offer her a place.

Just found out today that a friend's mum who has never saved (she spent all her money on smoking and alcohol) has been placed in this care home permanently and is being funded by the LA.

It's not my friend or her poor mum's fault but it feels like such a kick in the teeth. My parents saved all their lives and never really splashed out on anything special for fear of having no nest egg but even then mum still can't have the best. A lovely care home lite ally on our doorstep.

Everything about this disease is so bloody depressing.

It feels never ending at times, doesn't it? I feel for you.

hard relate. It’s like being punched repeatedly in the face daily for years, and every time you stagger to your feet bloodied, just when you think it might stop, ‘the system’ delivers another punch. It’s totally horrific and I swear I have complex PTSD from the process.

I have not just one relative, but two in care homes. Both working class with not very much but worked very hard to own their own homes. Because there is no cap on how much one person must pay towards their own care home fees, if you are working class and say you house is only worth £130,000 - ending up in a care home means an economically catastrophic drain on assets. it is all going to be gone in a couple of years. Whereas, if you are wealthy, it is still likely there’ll be something left at the end. Both my DM and MIL’s entire assets will be gone by next year. Like you, I tried my hardest to find better homes for them, but neither would allow them in unless they had 2.5 years in cash. Which they didn’t. And then there was the dreaded top up fee issue that they tie to YOU and not the person in care. And then they’d throw them out with the money runs out which would be horrifically distressing for them. And they do do this because I’ve seen it happen. So that’s it then. Nothing left from either of them. The icing on the cake was one assessment meeting with the financial assessor from the LA who told me in a chirpy voice that I wasn’t allowed to prepay a funeral for either of them and if I did use their money to do this, they would do the financial
assessment as though the funeral money was still there, ie they’d refuse to cover the care fees for even longer. I remember saying something like ‘whatever, I don’t give a sh*t anymore’ and the assessor who had a face like it had been slapped by a wet fish, snapped her head up and said, ‘pardon?’

Dementia takes everything. And then some.

I can definitely relate to this feeling @sealhappy8419

I've recently been away on holiday for 12 days and this is the first time (grand age of 56) that I've not phoned my parents during my holiday to check all is ok. The first time. It was on my mind to phone them to check in but each time I thought it, I told myself NO!! And I felt ok in having made that decision which is a first for me.

My DH calls it 'battle fatigue' and he's right. I'm just done. Yes I still care about them but I'm not busting balls over getting stuff done for them. My mental health tanked, had horrible physical stress symptoms and am now in therapy because I have PTSD as a result of it all. Menopause on top has been the cherry on the cake.

OP, heed the warnings from others, including me. You're already starting to feel the affects of the stressful situation; it might get worse for you if you don't put the brakes on and step back. Unmumsnetty hugs for you 💐

Oh God, what's a top up fee? Care homes are a whole new and terrifying thing for me, I have not heard of this....off to google.

And what if there is no money for funerals? Who pays for them? I have no funds to pay.

It's more worry on top of more worry with this disease.

I feel for you, it takes everything doesn't it? I am in menopause too and it's just about finishing me off. I feel like a bag of crap most days.

I hope you managed to have a good holiday.

I think you just have to forget the money. If your mum spends her money she will be in the same place as your friends mum.

My elderly relative who has recently died has been in a dementia home for ten years. £8k a month on her care. I could look at it as why should she pay but what else does she need the money for? I could look it as my potential inheritance disappearing but it was never mine. I think I could have got very depressed if I'd been thinking of that £8k every month for ten years but it wasn't mine and she needed the care. For your own mental health I think forget about the money just look after your mum and your own physical and mental health. Honestly there is enough to worry about.

If there is no money for a funeral the LA will arrange one. If the LA are paying for that care home then there is no reason to suppose you'd need to pay top up fees, they are paid if you want her to stay in a home where the fees are more than the LA will pay.

I agree with the sentiment about not calling the ambulance but if DP has fallen you have to get them up.

My DM is not happy with her health and being widowed. She is more able than the OPs mother.

I would be talking to GP about a DNR. In our case in the spring when mum was clearly very unwell with an infection (she had Covid) the GP hesitated about giving her antibiotics because of the DNR. We consented and she pulled through after three weeks in hospital. I do wonder if we should have said to let her body fight it. I am Catholic and I do not agree with euthanasia but I do question how hard we should fight.

(Mum is now in residential care but not happy. There is no way she can cope alone. It is a relief to know she is safe ).

My DF at 94 yrs had dementia and was recovering from COvid. He was deteriorating but the consultant suggested kidney dialysis. I was horrified at the thought of more poking and prodding (all the tests were distressing for him anyway. I was fortunate that his respect form stated that he did not want treatment for any new conditions. Kidney disease had not been identified earlier. He died within two weeks. I was grateful for him writing out the respect form.

I would strongly suggest that those of you concerned about the financial aspect of all this go onto the Age UK website where there is a detailed run-down of how the finance for care works, including top-up fees and the possibility of Continuing Health Funding from the NHS. If you want full details on the latter then Beacon is the way to go: beaconchc.co.uk

My late OH finished up in a very expensive nursing home, but I was determined he should have the best. I finished up paying a "top-up" which in truth was over 80% of the real cost and I dwindled our savings away in order to do this. In fact I got the money back eventually by appealing the two refusals for CHC funding.

I am glad that Andy Burnham is planning to take a proper look at this - politicians have long ducked the issue and left us in our current mess. My deep objection to the whole system is the sheer unfairness, particularly where someone is unaware (or given wrong information about) the CHC funding rules. In addition I do think that the quality of care has gone down since it was all privatised. I worked in the system before and the quality was much higher with proper staff training, support, conditions and scrutiny.

I am so sorry for all of you trying to deal with this horrible situation. I am at the other end of the proceedings as I gently and gradually slip towards the (I hope fairly distant) prospect of becoming the burden that you are all facing. Serious heart and other problems hit me relatively young and the writing is on the wall for me. My strong desire is that my lovely AC should not go through the hell that many here are experiencing - but I wonder how I can achieve that .........

When DM was in hospital for a fall associated with her dementia (attempting to get up when unsupervised) I was shocked how much persuasion the care team needed to agree that she needed a care home. I was told “we will tell her not to get up between visits”. Like I had never thought of that! No I had watched on the camera how she was attempting to sit on her wheeled trolley instead of her chair. When I was staying with her telling her to stay in her bed she replied that she would do it but “ha ha as soon as you leave I will get up if I want”. She had already fallen 6 times in 4 months.

It was only because she was self funded and we had POA that she stayed in that home.

I was sorry that she was not going to the high price five star home that was really local. We had to turn it down because they had a policy of kicking you out if they could not meet your needs (like for end of life care). At the top of my list for requirements was that the home cannot be temporary - they agree to end of life and if mum runs out of money the council will take over her care

I think levels of care can vary. I remember my grandfather's being in homes in the 70s. One had fantastic care in a lovely home but the other was in a very grim place. One of the saddest things I remember is him saying he wished his decline was mental not physical as then he wouldn't understand the hell he was living in. My relative who recently died was in a fantastic home, the care was everything you could wish for. She had the same named carer for ten years which I think speaks volumes.

Yes the end of life care is important. My relative died in her room in her home with a staff member who had known her for years holding her hand. I couldn't go to her, she was over 100 miles away and I'm my husband's carer, but they phoned me several times that evening and through the night. That care home was her home, the staff were the people who knew her needs best by the end. Did it cost? Yes it did, do I regret the inheritance I might have had? Not for a minute.