How long does this hell go on for?

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 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 ).

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 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.

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 💐

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 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.

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.

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.

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 ...

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.

I can tell you this - eventually you do start not giving a sht. Which sounds terrible I know. I don’t mean you don’t care about your parent anymore, you do. But you definitely develop an immunity to the ‘system’. My DM has been in a care home now for one year and it is way less pressure on me. But even when it’s not, and it’s all kicking off, and every agency + the care home manager is calling me, texting me, emailing me, manipulating me. I just give less of a shit. I step back a lot more. Mentally I gave up last year when I felt suicidal myself and was physically very ill from the stress. You do eventually choose yourself.

I can well believe this. My DM’s care home tried to call an ambulance on a Friday at about 11 am. They claimed she was threatening to kill herself. They tried to manipulate me into driving her to A&E myself and wanted me to present her there at front desk by citing suicidal intentions. Unlucky for them I’ve had 10+ years of sitting with my DM on plastic chairs in a&e for 24 hours and it’s no place for someone with dementia. We’d had a full meeting with the gp and care home manager only a few days prior where I made it very clear my DM was not to go to hospital unless categorically unavoidable. I refused to take her myself and they called 999. I was furious. 999 were having none of it (thank god!) and made the care home call the mental health helpline IRS instead, who spoke to my mum for few minutes. My DM told them she had no intention of killing herself she was just fed up because no one ever listens to her. IRS told the care home she was absolutely fine and discharged the case. Bonkers. But yes - there was a definite whiff off them wanting to cart her off to hospital because weekend was approaching and they have minimal staff.

Similar situation here inasmuch DM bed/wheelchair bound for the last 5 years. DF is her carer. She's doubly incontinent so 4 x carers a day. His life reduced just as much as hers did following her medical episode but he has taken it on the chin very stoically. However, things are starting to crumble because he's now 83 and she had dementia to add to the long list and she is becoming difficult and making him feel guilty for wanting to see his friends for a beer/meal or she changes her mind if DF has arranged a meal out saying she feels sick but its her way to control the situation and I feel sorry for DF. I said he should speak to SS for respite but he said 'no, she'll make me feel guilty when she comes back so it's not worth it'.

His days just run into each other, just like hers do. I used to run myself ragged in trying to do more for them both to ease the shittiness of the situation but I've caused myself health issues as a result now so have eased back massively.

It's a whole world of horror already and then I find out that they removed the DNR from DM's records and want 'the full works' should there be any medical issues, hospital admission...the works. I feel utter despair at the thought of it all.

My mum slipped away with pneumonia leading to sepsis secondary to the dementia. We didn’t treat the pneumonia because there was no point in her continuing to be alive (that sounds harsh but it was the truth)
personally I have done a living will to refuse all treatment after a dementia diagnosis

The last few years of my mums life were awful. No dementia diagnosis but a strong suspicion. There was evidence of mini strokes and a slow growing tumour so that might have been it or cognitive decline, she was late 80s when the wheels started coming off. She also had a chronic heart condition and long term asthma, her breathing was awful but I’m quite sure that she wasn’t taking her inhalers though she said she did. Her hearing was poor, she was frail, very underweight and could hardly walk. However she believed she was really quite ok. I was her only child and have teens so it was all on me. No other family at all. She lived very close. It was a dreadful time, she was stubborn, difficult, at times, abusive. She had a tiny bit of care coming in but they weren’t up to much not helped by my mum not being clear about what she needed. She also had a cleaner (got through several in a few months) and a gardener. I was somehow unable to put any kind of distance between us which might have helped. Finally, after yet another hospital admission, she accepted a care home. She had been talking about it for years before hand but she was pretty miserable there. She still believed that she was perfectly independent when she hadn’t been for years. She was unable to see the impact it was having on me and my children. My husband was a saint through all this. By then I was on my knees, I was with practically all day, I was exhausted, having a horrid menopause and was just slowly disintegrating. She spent the last 17 months of her life in the care home, the care was really good in many regards but she hated it. Despite not holding poa (which I don’t think would have come into play as she apparently had capacity), they did consult me for medical decisions. In the end, she decided not to return to hospital for a blood transfusion, knowing she was fast declining (not sure how much she really understood that) and died within a couple of weeks, still being horrid to me in her last conversation with me. It was her decision and I think she had enough. As broken as I was, I can’t say I blame her. Everything meaningful in her life was gone, unlikely to ever return.

My experience is clearly quite different to many of yours but it was still terrible. She suffered and I suffered with her, she made my life a misery during those years. I cried so much then that I had no tears left when she died. She was always a difficult woman, suffered significant trauma as a child but did her best until advanced old age made life miserable. I believe the care home saved me. Like many of you, I don’t want my children to care for me, though, judging by their current ambitions, it seems pretty unlikely.

I wanted to extend support and sympathy to all of you going through this difficult time. I hope it’s a peaceful as it can be despite it being so very difficult.