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.

Would he not go into the home with her ? Or is that too far for him.

My mum is 85 and no issues yet other than arthritis. But I won’t be calling the ambulance.
And I don’t want my DC to be burdened like this.
Have told them that NO WAY let me go they this - please let me slip away.

Both in all honesty.

I worry that she is not getting optimal care at home. We all do our best especially dad as he lives with her but she does spend a lot of time just sitting in her recliner chair without much stimulation, the only time she gets a break from her living room is on a Friday when she goes to a day centre where they say she does really well. I feel that, maybe, she could get that extra stimulus from a care home setting, even on days without activities there will be people moving about and sounds and visuals, she doesn’t get that at home much.

I do also worry about her being kept alive as such but we do have that sorted with mum’s new GP, she has re-written the ReSPECT form which had been very basic via her previous GP. Mum will only get palliative care for any illness or disease. She doesn’t have many vaccinations which is a battle with dad because he feels she needs them, I really don’t believe she does but I understand he doesn’t want to lose his wife of 55 years.

Dreadful, isn’t it? After three awful experiences with A&E and subsequent disastrous hospital stays we will not allow mum to go into hospital unless it is absolutely necessary.

It’s torture I’ve lost more of my adult life to care than I lived with my parents when I was young.

I live with mum full time now after she was cared for (neglected) by my brother and his wife and sometimes I cry for my life as it’s now just about providing and enabling care (and working in a full on vocational job as well). The care costs are upwards of £6200 a month but I feel too guilty to look at nursing homes.

I just want a bit of my life

I’m never doing this to my son…

10 years. 5 years doubly incontinent and barely sentient in a nursing home. Died at 74 and all I felt was relief.

They either need to find a cure or allow easy access to euthanasia.

I think people think it's a bit doddery; a bit forgetful, but it's ok cos you're in a little dreamworld, like a toddler.

It's not. It's inhumane. Especially if your body is fit and healthy and refuses to give up. We don't let animals live like that. The chance of it being genetic scares the shit out of me.

My DM sounds like she is at a similar stage of Alzheimer’s as your DM. She has been in a care and then nursing home for 3.5 years. She has a DNR and ceiling of care in place. Even if she has a stroke or heart attack she won’t go to hospital. She will die in the home, the end of life medication has been prescribed and is ready for when needed.
She may live for a few months or maybe 5 or more years.
She doesn’t know where she is, she can speak some sentences but nothing makes sense and she hasn’t known who I am for a number of years.
She is well looked after.

Im so sorry you are going through this and I hope you find a solution.

it’s difficult as there is so much prejudice in my family about going into residential care - “children should provide care” but there shouldn’t be guilt.

the worst thing is that along the way I seem to have lost the love I felt for my mum in resentment and anticipatory grief.

Have you ever had pneumonia? I have and as I choked and suffocated it was horrific. Fortunately the hospital was able to cure me. There was no slipping away. It must be a horrible death, I didn't quite get there and I hope it won't be how I leave this world.

My experience with paramedics and duty doctors was very different to yours. My elderly relative recently died, I had LPA and was always phoned when there was a crisis. The home knew I was happy for them to call me at any time, last call was 3 am. Paramedics and duty doctors always went with my decision to leave her where she was and they would check all end of life meds were in place. It went in for two years but no one doing anything extreme to prolong anything.

I really feel for you, it’s such a dreadful disease and in all honesty we went into it completely blind, we have no dementia in our family and even with my awful health anxiety cognitive decline wasn’t even on my radar one little bit but I can say hand on heart that I am now terrified of it. It’s so insidious, so evil.

It’s heartbreaking seeing elderly people being kept alive, all in the name of advanced medical science. Our 95 year old neighbour had a serious stroke last year, was in hospital for 9 months and now lays in a bed in his dining room every day whilst carers pop in three times a day for 20 minutes a time to change his nappy and the rest is left to his 93 year old wife to deal with.

You don't slip away with pneumonia.

15 years!? My heart goes out to you.

With my relative we hired a private social worker. He assessed her and identified a home that was best for her. It was well worth the cost. As she was reluctant to go into a home and could be difficult he even collected her and took her to the home. The local authority just said take her yourself and if you can't it will be the men in white coats.

I can really recommend private social workers.

He is getting better because we’ve put our foot down recently. I’ve had to, I have some health issues and an operation planned in October that will require several weeks recovery. He will have no choice but to get help in or place mum in respite care.

This is one of my worries, at home we can decide when and if to call an ambulance and going by our previous experiences that will now be unlikely. If mum was to go into a care home do they override our wishes and her ReSPECT form?

He has every single vaccine going which is obviously up to him so hopefully that will give him some peace of mind and protection?

No they don’t.
We all worked together along with my DM’s GP to do what it is in her best interest.

Well actually yes I have!
I had the flu which then became pneumonia. I was only 32! It was a surprise to me that ‘young’ people could get it, particularly as I was super fit at the time, but it did follow an absolutely awful flu. For me it was sharp chest pains on every in breath, huge temperature, hallucinations, couldn’t eat or drink. It took a good 6 mths to feel totally back to normal.
I’d still chose that over a decade of being bed bound/incontinent/demented - no contest!

We had enormous trouble getting end of life drugs administered for my relative. They were prescribed, then sent back to the pharmacy to be destroyed as they’d not been used for two weeks so that was the policy. Then had to get the Dr to prescribe again…
The district nurse would turn up to administer and if they were asleep, they left without giving them. It was a frustrating and infuriating process. The care home manager told me they were reluctant to give them unless absolutely necessary as “they’re very addictive you know” not a huge issue when you’re 98 and 6weeks into the active dying stage imo!
This was a care home we were paying £2.5K week for though, although as lovely as anywhere like that can be, I get the feeling they were loathe to lose a paying customer without a fight!

In January this year we called 111 for some advice as it was a Saturday and she seemed unwell. Instead of advice they sent out an ambulance, the paramedics were lovely and said 111 were useless. They were going to leave mum after doing her obs but then one paramedic noticed mum’s left calf looked a little bit red and he felt it was slightly larger than the other and said he was so sorry to say but he had not choice but to take mum to A&E (this was before we had the ReSPECT re-written).

We arrived in A&E at 3pm on the Saturday and mum didn’t get a bed on a ward until 6pm the Sunday night. We were in a corridor the whole time and the majority of the patients were elderly and many on their own, quite a few appeared to have some form of cognitive decline. It broke my heart to see these frail and scared people all on their own in a loud, bright and busy hospital corridor with hardly anyone checking on them. One lady was from a care home and no one stayed with her. Bloody dreadful and beyond stressful especially as dad picked up norovirus within hours, that added an other whole level of hell.

Yeah, too much for him. At 85 he’s actually in really good health and had mum not been struck down with this he’d still be on the golf course every week but he is so depressed now that he’s not picked up his clubs for a number of years.

I’ve said the same, I absolutely do not want my children caring for me at all. I brought them into the world to enjoy their lives as they see fit. I don’t want them to repeat what I have been doing over the last 6+ years.

My heart goes out to you. We do this with good intentions having little idea just how much it pulls out own life’s down with it. Care home fees are ridiculous in our area, many are easily £6k+ per month.

At the home they would call an ambulance or duty doctor if they felt it was necessary but my wishes were always respected. The doctors would always start explaining why hospital might not be the best idea, it was clear they were expecting an argument. I would say she is better off in her own room with the carers who know her and an NHS ward would be terrible. They always agreed. The paramedics wouldn't express an opinion but would agree with my decision. The last time when it was clear it was very close to the end they contacted the district nurses and made arrangements for them to visit and administer the end of life meds which they did even in the middle of the night.

I never once experienced medical people overriding my decisions.

In all honesty I thought that about dementia too until it came knocking on our door but now I know differently and I’m terrified. Fully terrified.

It isn't slipping away is it. How long were you in hospital, did you need assistance to breathe?