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.

I’m so sorry op. It sounds so hard for all of you. 💐

Sorry if this is a silly question but do you mean to let them die? Would anyone question why you didn’t?
my grandfather went through hell and now it’s the same issues with my dad, my peers are in the same situation, my friends MIL had 24 hours to live 2 weeks ago and is being ‘artificially’ kept alive with steroids. I would feel like it’s cruel to keep them alive and suffering. Not wanting to start a debate on the ethics of everything, my question is more about if you would get in trouble?

Thanks.

This an awful situation that too many of us have found ourselves in. Dont feel guilty and give yourself grace. As hard as it sounds you need to prioritise yourself. Pull back the amount that you do, when your dad sees how much you actually do then he won't be too difficult to convince about a care home. Plus look after yourself and make sure you have alm the support that YOU need.

@UnitaBath , I have walked in your shoes. Dementia is an evil bitch. Towards the end of my mother’s battle with dementia my dad was diagnosed with a brain tumour and they were both in hospital at the same time, different ones for quite a lot of the time one in Surrey and the other London. He was thankfully moved to the same hospital as her and was able to see her before she died. It was horrendous. I’m sorry I can’t offer you any words of hope or comfort, I don’t know how we manage to endure these things but I’m sending you strength. X

Bless you OP you sound lovely and like you are doing so much for your lovely mum. It’s terrible the condition we make the elderly live in, my mum has asked me to put a pillow over her head if she ever gets in that state! I do hope your mum passes peacefully soon, it’s no life and not good memories for anyone left behind xxx

Yes, that’s exactly what I mean. Years ago people slipped away with pneumonia or other infections now they are aggressively treated and although a few may recover well the vast majority are left in a worse declining state after every hospital stay. My very elderly relative ended up in a home and we had all the “no excessive treatment, no hospital stays, no resuscitation” forms competed, but in practice what used to happen was they’d have a turn at night when there were no senior staff about, an ambulance would be called. Quickest way for the paramedics to make it someone else’s problem was to whip them off to A and E, and then we’d have a week/10 day hospital stay where they eventually be returned weaker, more immobile, more confused. It’s a horrible merri-go-round!

I think care homes/NHS are so worried they’ll be sued if every treatment isn’t tried we’ve created a horrible culture of keeping suffering people alive just because we can. I think Harold Shipman has a lot to answer for personally - when my parent (cancer) was dying years ago our family GP came out regularly and when they were finding the pain unbearable he asked if they wanted “the good stuff” I remember him saying you realise you might not wake up, and they didn’t. Less than 24hrs and they’d gone. I don’t know what the answer is, but I don’t want to be the one kept going well beyond my sell by date or my kids having to deal with it either.
My Sympathies you are in this situation.

My MiL is now in a care home. It's a nice small place where the staff seem to be very good. It's 200 miles away so we follow their FB page.
She's parked in a wheelchair, asleep with her head back and her mouth open in most of the photos while some entertainment or activity is going on.
It's absolutely heartbreaking when we remember how she used to be.
Dementia is horrendous.

Thank you, thats a compassionate, realistic and sensible way to sum up what I am thinking and feeling.
Send love to @UnitaBath and all the others on here in the same boat ❤️

I’m 15+ years in and fully relate. Parents with a combination of diseases. It’s awful. Sending hugs.

Very sad for all concerned.
The worst I heard was a case where someone who was very elderly who had severe dementia was resuscitated after a heart attack.
It was to me, cruel. Not a kindness.

Having gone round care homes for my mother, the saddest room was one where those with the severest dementia were literally all wheelchairs together, a tele on but they were all asleep.

I fear that medicine keeps people alive long after nature intends.

Are you the poster with the abusive Dad who doesn’t want to pay for any more care but expects you and your sister to do it all?

I have to say I’m also an intensive care nurse and I would say the same. Obviously if she’s in pain or distressed yes get treatment for symptom control but I certainly wouldn’t be sitting in A&E for hours again to treat an infection and starting antibiotics. Her body and mind is shutting down, treating any illnesses at this point isn’t extending her life it’s extending her death. Focus on keeping her comfortable and let nature take its course.

I disagree that things were better in the olden days. It's not like all the old people always peacefully "slipped away" with a handy "old man's friend" case of pneumonia at just the right time. Unstable hip fractures are horribly painful. UTIs make people feel like crap and make dementia worse and they don't necessarily progress to a swift end from sepsis (which in itself isn't much fun either). They can teial on and on and on with the bladder lining becoming ever more chronically wrecked.

I do agree with the PP who reckons Shipman has a lot to answer for- I think he has indirectly caused a vast, vast amount of suffering.

I went through this with Mum, she was bed bound for 7 months and doubly incontinent, had been in the car home 8 months by the time she fell and broke her back. I blame the care home, she got up out of the same chair she'd previously fallen out of and even walked the same ditection at the same time of evening, how they let it happen a second time who knows.

So bed bound for 7 months before dying of malnutrition from not eating/drinking.

I considered it a relief when she died, like you it was no way for my mum to live. I've never really cried over her since her death because I felt I'd lost her a long time before and had already done my grieving.

Oh wow that’s a lot. In your shoes I’d be looking at care homes, but depending on which one you choose they are way more likely to treat for EVERYTHING. Antibiotics etc. (I know this is a hotly debated topic btw, I’m not seeking to minimise it).

My Dad died of Alzheimer’s and flu earlier this year. We didn’t have him vaccinated. Pneumonia set in and we opted not to treat with the agreement of the gp. I have 0 regrets.

"We don't agree to any vaccinations now but that is a battle with dad because he feels they are essential."

In fairness to your dad, an unvaccinated spouse presents a higher risk to him. But sympathy to you dealing with the whole situation and him if everything is a battle, dementia is so so hard anyway.

The elder care in this country is shocking. I had occasion last year to be at the A&E of a major hospital. As I walked the long corridor I counted 12 or 13 trolleys lines up, every one of them with a tiny frail old lady or man all with oxygen masks. It was heartbreaking. I got chatting to the son of one of the patients, himself pushing 70, he told me they had been there for 2 days already. It was shameful. People should be allowed a dignified end rather than keep being hospitalised and put on antibiotics, only to be back a couple of months later, more ill and more frail than the previous visit 😬

I’ve been trying to find a care home that has flats attached so dad could potentially rent one but they are quite rare in our area and I’m not sure dad would be up for that.

We’ve definitely put our foot down with any A&E visits, they have done more harm than good.

It’s quite dreadful to think we are keeping so many older people alive with medication but in very poor condition. All of my grandparents died very quickly (suddenly or within days), sad for us but the best way to go for them, very little suffering. Mum’s illness feels like a curse, for her and us. Awful to say as I love her dearly but it’s how I feel.

I’m sorry for your loss, that does sound like the best situation, I think we really need to start seriously considering a care home.

poor woman :(

I hope for all your sake but mainly hers she has a peaceful passing soon.

Oh your poor mum, isn’t life so cruel at times. I know my mum would hate to be living like this, when she could talk and had better cognition she would tell me every day that she wanted to die.

She needs to go in to a home. There are nice ones, keep looking. It’s better for her and you, my aunt loved it, the attention, food, activities. Even just a hand hold and being spoken to, kept clean and as dignified as possible.

Dementia is a brutal disease.

She won’t go in hospital unless she has broken something. Our lovely GP has stated this on mums ReSPECT form and even if it is a broken something she has advised we go to our local minor injuries clinic, we just try and watch her like a hawk so she doesn’t trip or fall. Easier said than done though!

I am 53 and feel about 83 if I’m honest.

My gran had a stroke, it was “only” 5 months til she died but that was bad enough. I wished so much her home help hadn’t been coming that day and she’d have just died then, as she was choking on toast, instead of the ambulance being called x

And the giving of antibiotics when she was in hospital and got an infection drove me nuts, I don’t think my mum realised she could have said no