Why does our society deem this as expectable?

[user263781638]

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 😭

I'm so sorry to read this. My dad had Parkinson's for many years and it is a truly horrific disease. My heart goes out to you. Take care.

You lost me at “cabbaged”

Seriously, OP. Not ok.

Or Mama you could try to extend some kindness instead of criticism over a word you deem unacceptable

Thank you everyone, I've been to see her again today and she seemed more settled than the other day, still in pain and suffering but not as obvious as before. I've also spoken to her doctor to try and sort out some more pain medication.

Mama I'm sorry that you find that word offensive, I use this term as it's a term my gran would use herself, a term that is widely used, I'm going through a pretty shit time like many other people living with ill relatives and your first thought is to call me out on a phrase I've used. I'm talking about my own flesh and blood not some random stranger that their family could take offence to me saying that.

I was just thinking today how cruel old age is with the pain and loss of dignity. I have spent the past couple of days looking for a nursing home for my DDadwho has dementia along with renal failure and diabetes. I have also been visiting my gran in her care home, who is 98 and has lymphoma and keeps falling out of bed. She was a very proud woman who lived alone until she was 92 and cooked every day. I just feel helpless and so so sad.

It is horrible how little thinking goes into the long palliative phases of these illnesses.

It is possible to assess pain in nonverbal people with dementia. I wonder if writing to her GP to ask about her calling out and whether any review of her pain has been carried out might be worth it. The palliative community team sounds like a good call.

Sorry to hear that marmite, what a cruel thing old age is.

My gran and my grandad are only in their 70's my grandad was totally fine when my gran first went in the care home then dramatically declined in the last 18months after he was officially diagnosed with dementia, he kept falling and ended up going in hospital and there they told us he needed 24 hour care and wouldn't be released into anything other than a care home, cue massive panic and visits to countless care homes (my grans one was full at the time) only to find out the 2 we didn't mind wouldn't take him because of his falls risk and the step down bed the hospital provide was unavailable due to him being self funded?? then a place came up in my grans home so he went with her, up to now he loves it he's really enjoying himself which is a massive relief! He keeps flirting with all the carers though
We was really worried about him going in with my gran as he can't get his head round her condition, he feels as though she's ignoring him because, in his words 'I put her in here' which clearly isn't the case, his room is directly across from hers too so we didn't know if hearing her would affect him, it hasn't so far though he's to busy chatting everyone up 🙄

Im really sorry about your Gran. My dm had parkinsons and just as she reached an impossible stage she passed away. The relief we felt on her behalf was enormous although we were sad too.
Is she being peg fed or how does she actually survive?

Sordy this is happening OP.
How is she being fed?

*sorry

She's fed by the carers, puréed food by mouth, she's still at the stage where this is possible but I don't know how long for.
I really haven't researched the condition too much I was to scared to what I'll find but I really need to she's not getting better obviously and I need to stop burying my head in the sand. All I know is her care file says 'final stage dementia' and has done for a few years now and that they're withdrawing Parkinson's meds as her condition isn't being helped by them now.
I suppose in a way I just want to know 'how long' but no body can tell me that, I just want her suffering to end, I love her dearly and it's breaking my heart.

It doesn't make sense does it. So the food will stop once she's unable to swallow.

User at least he's got the energy to flirt!

No it really doesn't, life's cruel and this has all but confirmed this to me.

He's asked one to marry him and another to get in bed with him 😳 I mean if I don't laugh I'll cry! at least my grandads very complacent, he's forgetful and gets tired very easily but he knows who we all are and is still the same person as he once was, if that makes sense? I can't help but think in a few months time he'll go the same way though.

My dad still knows who we are but has no energy and just wants to sleep all day. He forgets what he is doing all of the time. He can go to the kitchen for a drink and come back with a banana. Then five minutes later do the same thing again. It is heartbreaking. He definitely wouldn't have the energy to flirt with anyone at the moment. Bless him. It is also very tiring for my mum who is now a carer rather than a wife.

I think we just want to understand the care they are being given. To trust that they are doing the best for them and to not be patronised if we ask genuine concerned questions.

Which county is your gran's care home in, user263781638?