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Why does our society deem this as expectable?

(42 Posts)
user263781638 Mon 25-Sep-17 20:55:45

This is a hard post to write and probably read but it's something I just need to write --scream
My gran, my gran whom we refer to as hyacinth bouquet, you know the one from keeping up appearances, is dying she's been dying for a long time now, 4 years to be exact.

She has Parkinson's and Parkinson's dementia she's cabbaged in her own body unable to speak, move or do anything at all for herself. She's lived in a care home for 4 years now and has been in the same state, she doesn't recognise anyone and spends her days lying in bed staring at a ceiling crying out in agony. Every. Single. Day.
We all assume the pain is from chronic constipation but no one knows for sure, she's on constant pain patches of the highest dose but they don't seem to help much. If you could see her skeletal body all her bed sores, the noises she makes due to pain what would you think?

IMO, as her granddaughter, someone who knows her and all her ways, like the way she would never leave the house without matching her shoes, scarf and socks. She wouldn't want to be here trapped like she is. If a vet seen an animal in her state they would tell you to put them to sleep, how it's cruel to let a living thing 'live' in that way.

Why is it ok to let a human being suffer so awfully in agony everyday without being able to tell anybody what the cause actually is?
After seeing her today at the worst I've ever seen her I'm broken, I can't even do anything to help 😭

Fluffysparks Mon 25-Sep-17 20:57:07

No real advice but didn't want to read and run, that sounds incredibly difficult. flowers to you

SleepingStandingUp Mon 25-Sep-17 20:57:20

Didbt want to read and run and I have no advice OT helpful comments. Just a huge huge hug xxxxx

StarfishSeahorse Mon 25-Sep-17 21:06:22

This is horrific and I absolutely agree with you, no one would allow a dog or cat to suffer that existence.
How is her care being managed? What do her doctors say about her condition and her pain management? Have any test been done to determine the cause of her pain?
I’m so sorry for your poor Gran, and for you having to witness it flowers

Sequence Mon 25-Sep-17 21:09:16

That sounds awful ☹️ Is there any chance she could move to a different care home?

user263781638 Mon 25-Sep-17 21:12:33

Thanks everyone 💕

In her care file it says she's in 'final stage dementia' and has said that for years now, pain wise it's being treated ( I use that term loosely) with these pain patches that get changed every few days or so.
The care home she is in is fantastic and I couldn't recommend them enough, my grandad had to go in there as well unfortunately last week. They have monthly meetings with her doc/Parkinson's nurse and specialist about her care and everytime they come back with 'any test we feel will be more harm than good and could put her through more pain' so basically leaving her the way she is is better for her in their uncaring opinion.

user263781638 Mon 25-Sep-17 21:13:57

The care home have tried and tried to get more things done for her but her docs and specialist don't agree with them so there is nothing else they can do apart from general care.

Mama234 Mon 25-Sep-17 21:19:23

I totally agree with you op its cruel.

Mum2jenny Mon 25-Sep-17 21:21:48

So sorry for your pain, but I can't think of anything constructive to add. Just hope she's on a different plane.

Mum2jenny Mon 25-Sep-17 21:24:31

I am so glad ( not really) but my dm died within a week of having a serious stroke. But it did mean I got closure quickly. You have my deepest sympathy OP.

grasspigeons Mon 25-Sep-17 21:30:31

I have been in your shoes and my grandmother was just over 4 years in a nursing home with parkinsons unable to talk and in pain. Above my Grandmothers bed was a crucifix nailed to the wall as the home was Catholic. I used to look at jesus and think 'you know nothing of suffering'

I can do nothing other than say I feel for you and your helplessness. Warmest, hear felt wishes.

SnuffleBadger Mon 25-Sep-17 21:50:51

My heart goes out to you OP flowers

I assume your gran is known to the palliative care team? Have they given any advice about symptom control? If she isn't I would advise you to actively push for a referral to them as they have a slightly different approach to pain management. Has a syringe driver been considered to manage her pain? What other forms of pain relief have been considered?

If you aren't happy with the medical care she is receiving then please consider contacting your local PALS team, they can help you to make your feelings known and get your voice heard.

CiderwithBuda Mon 25-Sep-17 21:54:05

It's horrific. But she may not be crying out in pain. It may be confusion and part of the dementia rather than pain. It's horrible though.

My mum was put on fairly hefty doses of calpol to try to keep her pain under control. We weren't told but my dad noticed it on the monthly invoice from the home. She had a medical card (Ireland) but Calpol wasn't covered. The home gave her calpol as they couldn't get her to swallow tablets.

TheFaerieQueene Mon 25-Sep-17 21:56:02

I completely understand. My DFather is in late stage dementia. It is so cruel.

user263781638 Mon 25-Sep-17 22:00:05

Yes she's under palliative care we've had meetings with them also, it just feels as though nobody cares or knows what to do.

It's definitely pain it comes in waves every couple of minutes and she wriggles, it's the most she can do but all her face is contorted when she's wriggling. It reminds me of the way I was in established labour that's why everyone thinks it's severe constipation and wind. She has daily buscapan which eased it a bit at first but it seems she's immune to that now too.

TeaandHobnobs Mon 25-Sep-17 22:02:21

I know exactly what you mean OP.
My dad died just over two years after a diagnosis of metastasised prostate cancer. He was in tremendous pain and fairly unable to move for the last 6 months of his life.
I remember so clearly, just days before we died, having spent another day watching him (so bravely) suffering - I said to my DH, I can completely see now why people support euthanasia. And that is something I have always had moral/ethical difficulty with... but watching someone you love so dearly being unable to end their own suffering - to not be able to have a choice to say "I've had enough"...

Mercifully for him (and for us), his decline from that point was very rapid. He could have been drifting at death's door for weeks, but it was just a few days from then, and he died what seemed quite peacefully.

I hope your Gran is getting the level of care she should have - and I hope that she is soon released from her suffering flowers

Fruitboxjury Mon 25-Sep-17 22:02:49

I'm so sorry, what a truly devastating situation for you all. You're right,it's unthinkable that the torment continues this way, for all of you. I pray in her mind she has no concept of what's happening.

The suggestion to involve palliative care is a very good one, to be honest though the approach which is being taken by doctors (not to carry out any invasive procedures) is palliative already. However, they may be able to help with stronger painkillers or mood stabilisers depending on her prognosis. How is she being given food and liquids?

My thoughts with you, this is my worst nightmare.

Fruitboxjury Mon 25-Sep-17 22:05:24

Sorry I see we crossed posts OP. Have you asked about hospice care?

Slimthistime Mon 25-Sep-17 22:09:04

I hear you OP.

user263781638 Mon 25-Sep-17 22:12:57

It's hard as she's my gran and not my my mum, there's only 3 of us (me my brother and my mum) my mum has POA of my gran and my grandad and she's very 'distant' in pretending it isn't happening. My gran also has a living will which says she doesn't want to be treated beyond needs, so after having to explain to the doctor what a living will actually is hmm they're withdrawing her Parkinson's meds slowly as they now don't really serve a purpose.

It's awful but I wish she would just go now, she's suffered enough and I just wish I could help her. She was always such a proud woman I just pray she has no clue what's happening to her.

ThomasRichard Mon 25-Sep-17 22:34:31

Has the care home/medical team explain why your gran has bed sores? It's really poor that she has them.

user263781638 Mon 25-Sep-17 23:20:29

I'm saying they're bed sores, I don't know if they are or not to be quite honest. She's on one of them pressure bed things, the 'bed sores' im referring to are blister type things up her arms not sure how they would get there as her arms are the only thing she can vaguely move, they're only small bout she probably has about 5 visible ones to each arm.

Slimthistime Mon 25-Sep-17 23:28:42

The doctor didn't know what living will was?! That is horrifying.
I'm sorry you're in this position and I know it's not your call to investigate, but this makes me wonder if they are treating her correctly and if perhaps there's any other way to alleviate her suffering.

Normally I think doctors are great but not knowing what a living will is...?!

SleepFreeZone Mon 25-Sep-17 23:30:51

My FIL is in the same situation with Parkinson's. He has had it for around 6 years and is now in a vegetative state at home in a hospital bed. He is skeletal, though he still eats and is screwed up in a ball. It's incredibly distressing and I too wish he could get peace from death.

I am so glad we have the option of Euthanasia abroad. If I had a diagnosis of something like Parkinson's and was still mobile enough to get on a plane I would book my ticket immediately.

user263781638 Mon 25-Sep-17 23:56:36

Sleep he sounds exactly how my gran is, my gran has had Parkinson's for over 15 years now and it's been very well managed up until the last 4 years, you wouldn't have known she had it, call me stupid but before she got diagnosed I automatically assumed Parkinson's was the whole 'shaking' when in actually fact she has never had these symptoms, just shows really how little research etc. Goes in to this awful disease 😭

And the living will, your not kidding! What doctor doesn't know what one is!? All made worse with the fact she knows him personally as she used to be the surgery manager at his flipping surgery! 😤 I hate him, he's trying to play god.

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