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sicut animam suam : 'it's just life'

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
And so another soul succumbs to dementia. Rhi found out on Friday her mum was given the diagnosis of Altzheimer's. Rhi said she knew it was dementia. I just thought another kind soull to walk this path. Its funny only last week was I thinking how my mum doesn't desrve this end to her life and now Rhi's mum and I feel the same. We chatted on messenger for a while and it was obvious her mum was quite advanced now at this stage, but of course the same type of dementia can affect people in very different ways.

Rhi is like me, she won't leave her parents to struggle and will keep an eye as much as she can. I'm thinking of popping down to see her in the next few weeks and say hello to her mum and dad, who I've known for years. I don't know how far into the future they have thought about, but its too early to ask. I did say to make the most of the time she has with her mum, which of course Rhi would do anyway.

I visited mum on Friday and as I walked in she seemed to have acquired a green hat, which she was wearing sideways as she shuffled along the corridor. I did chuckle, somehow a part of my mum was still present, albeit in a different light, she was always so unassuming of anyone. She raised her head as I said hello and gave me a smile and said 'oh hello' completely oblivious to who I am. But she seemed quite content in her own bubble. We managed to coax her to her room with the cake I had bought her. There was a lot of fuss from the carers in her room as they seem to like mum a lot, but I had to ask if they could leave us before she starts trying to wander again, because at that point I would have to leave (we are allowed to visit in their rooms and can't walk round the unit). She ate two of the mini battenbourgs and seemed ok as she chatted away (muddled chat) and then sure enough she struggled off her chair and as before clung on for dear life to anything to steady herself and shuffled out off into the corridor. I followed her to the exit and said my goodbye as she was gently escorted to the lounge by the carers for her tea.

The legal firm now finally have all the records on mum having had to ask again for missing files. They've told me due to the sheer volume of medical records on mum it will take 8 to 10 weeks to sift through them all, possibly longer. I'm curious to know how the CHC assessment could have been so rushed??
 

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
Admiral nurses
contact the neatest office & they will get back to you
brilliant counselling !
I text , phone , email & the support is fab .

The sense of worthlessness is created often by the system letting folks down. I have always had low self esteem & so blame myself for soo much . Ironically I have a art & psychology background 🤦‍♀️
yep it’s a case of council yourself - & can be found muttering away in my garden pulling up weeds ! Very therapeutic pulling up weeds !
Logically I know the answers & can rationalise situations ; but emotionally I am struggling & stress doesn’t help with that.
I am the person who everyone turns to when life deals them a **** hand , & I help folks through the tough times & am with them at the end .
it’s a privilege to be that person , but means I also need someone to be my person .
Even though things are grim for me atm , I am supporting a terminal friend , supporting a family with medical issues, & I hear my own advice & think why can’t I do this for me?
well I can’t … & I’m at rock bottom now but I won’t stop supporting those that need help. Thank goodness its over the phone , messages so no one gets to see the wreck of a person helping them through their crisis. I do this unpaid .

Please remember - The system doesn’t win , because of folks like you & others on the forums highlighting the issues of their failings . Not our failings theirs!
Just because the system has been created to make accountability a thing of the past , to prioritise profit over patient should never make another feel worthless . Bullies try to make folk feel worthless that’s how bullying works. I detest bullies , they have soo many sad unaddressed issues that they need to make others feel belittled & worthless to keep their own morale & ego boosted. If someone cannot empathise with another breathing living creature & recognise when they cause that being to feel sad , hurt, demoralised by their actions then that person has started to become the worthless part in society.
Decency, compassion, integrity, humanity might have no monetary value but are essential to a functional society . Not having those characteristics makes a person worthless within a functional society , so those lacking these essential traits try to devalue those who hold these qualities.
self worth is something we judge in ourselves, in the perception of how others see us . Learning to accept your own self worth is hard , & often an ongoing battle .
but my lovely it’s not a battle you are in alone ever , please remember that.

to quote a friend when asked how they are
“ I’m alright it’s all the other buggers that are the problem !”
many a true word said in jest

ps
mind you the other Pearl of wisdom from their mouth is
“ it’s as dark as a badgers **** in here!”

so many unanswered questions ….
🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️
Thanks DoD for your own experience and insight and I agree with much of what you say.

I for the most part have worked in the system or part of it for many years, but to be on the receiving end of it is a real eye opener.

Change is something that is not easy to implement, and even now after Mid Staffs there are still problems in the NHS, but it has changed, its just taken a long time to acieve it, and there is still a way to go.

The Social Care system is a whole new ball game to me though and a tick box exercise whcih all comes down to funding, These tick box assessments were never designed to be abused in the way they are, but its just too easy to tick a box without having to stand up and justify why a box was ticked in the first place. Accountability has been removed and what is consistently justified is shortages and lack of resources as a means in themselves. Anyone who knows ethics would realise that this is a moral wrong, but because it suites the purpose of most of the agencies it seems to have stuck -who can argue against the ends of limited resources or decisions made out of our hands with no feedback and no account of the actions? On top of that there are public servants who for whatever reason have succumb to the culture that we now experience. No one wants to take any repsonsibility for anything, because it would cost too much. We live in a society that likes the good times, but can't face the bad times, that lives in denial -life isn't always rosey and anyone who says it is is either lying or dellusional.

My experiences of the social care system are mostly negative because there is an inane culture of avoidance, resistance and sometimes downright flippancy mixed with arrogance. A culture change is needed in attitudes and work behaviours by those who are paid by the public for the public and it makes me sick to think there people in these roles who just don't give a ****!
 

DesperateofDevon

Registered User
Jul 7, 2019
3,280
0
Thanks DoD for your own experience and insight and I agree with much of what you say.

I for the most part have worked in the system or part of it for many years, but to be on the receiving end of it is a real eye opener.

Change is something that is not easy to implement, and even now after Mid Staffs there are still problems in the NHS, but it has changed, its just taken a long time to acieve it, and there is still a way to go.

The Social Care system is a whole new ball game to me though and a tick box exercise whcih all comes down to funding, These tick box assessments were never designed to be abused in the way they are, but its just too easy to tick a box without having to stand up and justify why a box was ticked in the first place. Accountability has been removed and what is consistently justified is shortages and lack of resources as a means in themselves. Anyone who knows ethics would realise that this is a moral wrong, but because it suites the purpose of most of the agencies it seems to have stuck -who can argue against the ends of limited resources or decisions made out of our hands with no feedback and no account of the actions? On top of that there are public servants who for whatever reason have succumb to the culture that we now experience. No one wants to take any repsonsibility for anything, because it would cost too much. We live in a society that likes the good times, but can't face the bad times, that lives in denial -life isn't always rosey and anyone who says it is is either lying or dellusional.

My experiences of the social care system are mostly negative because there is an inane culture of avoidance, resistance and sometimes downright flippancy mixed with arrogance. A culture change is needed in attitudes and work behaviours by those who are paid by the public for the public and it makes me sick to think there people in these roles who just don't give a ****!
Totally agree with you. I have Art & psychology back ground & was involved with SEN, previous working experience in care homes & those with disabilities.
To be continually told that the system doesn’t work like this / Nice Guidelines don’t apply because of covid etc makes me realise how rotten the system is in Cornwall.
in Devon where I live this would not be acceptable & it highlights how funding is put before care needs continually . The system in cornwall is divided into two health trusts & Mum having experienced both we still await answers to questions of treatments / discharge/ medication & why as LPoA we were not informed or part of these discussions . Always being told after the fact , after the MDT meetings & not given any record of any of this .
Accountability is 0 - this government has put through bills during covid to ensure that no one is accountable or will be put under investigation. Just retraining 🤦‍♀️
Morally wrong
All I can do is highlight this & let others know . Healthwatch Cornwall have soo much evidence of this it’s terrifying . Locals are cleared out of hospitals to make room for the pressures of holiday makers needing treatment - 1 main hospital in the whole of the county with community hospitals being shut temporarily & permanently.
This system is so broken & not fit for purpose with CCG not fulfilling their duty of care - ignoring issues raised.
Our poor NHS has become so privatised & politicised . Tragic , terrifying & if this was happening in a war zone would be called something entirely different .

How Mum didn’t get CHC funding at home beggars belief … but now to be waiting since the 07/07 for fast track CHC EOL just reinforces how corrupt our systems are .
 

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
Meh I needed to rant yesterday but a new problem has come to light.

My BIL after not being in touch called me today and got to essentially what he wanted. Could I lend him money. I of course said yes, but this is not the first time and I am getting suspicious having paid for my sisters funeral. I honestly have no problem helping out of there is a genuine one off need, but this is getting to be a common occurrence and I never get the money back. What got to me was ow he was banging on how much he talks to his brother in the US, but never calls me for weeks on end, but his brother doesn't get asked for loans like I do.

The problem is that I am on my own with a single income and after all that has happened I literally am starting over, how do I say no?
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,198
0
High Peak
You just say it. Then say it again. I'm sorry BiL but I can't help. Sorry but no.

If you give him money he will keep asking for more so don't. And it would be a gift, not a loan - as you say, he never pays it back.

By way of explanation (not that you owe him one) just say you're hard up yourself these days. He can't challenge that.
 

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
You just say it. Then say it again. I'm sorry BiL but I can't help. Sorry but no.

If you give him money he will keep asking for more so don't. And it would be a gift, not a loan - as you say, he never pays it back.

By way of explanation (not that you owe him one) just say you're hard up yourself these days. He can't challenge that.
I'm gonna have to toughen up I guess. I find it hard to say no, but I can't keep on bailing him out and its a tad annoying that yet again I only get a call when there is either something wrong or something is wanted :rolleyes:
 

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
Yesterday was my sisters birthday. Something kept on bothering me about the date and I remembered. I've been to say hello, which in time I will stop doing and while I was there I walked over to my gran and grandads plot (my mums parents) and placed some white freesias, something I only normally do on New Years day. Its a diffcult place to find the spot as its just green lawn, but I had a flower holder inserted having realised I'd been placing flowers every New Year on the wrong plot :rolleyes:.

The counselling is still not sorted but I am returning to work in two weeks time come what may! I'm visiting mum again for my weekly visit on Thursday and realised its her birthday at the end of September and at this stage I am wondering what would be best -probably chocolate and flowers??
 

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
Its been an insightful week overall. I am beginning to realise there is nothing left here now other than old memories. I have gone over and over this until finally my brain has made the connection it needed to. But you are right @Jaded'n'faded , moving now is not an option, but I have realised when this is over it will be time. Its been a long internal struggle to come to this realisation, but equally if I had been able to stay in the family home it would only of been full of the past with nothing to remedy change.

Mum for the time being seems to be relatively stable and I have arrived as I have said before at the point of acceptance, plus no one knows what time is left when this disease advances. I've stopped trying to prepare myself for what is inevitable at some point, though I still wish she was home and we could have continued this journey outside of a care home to its bitter end.

I still look back at the last few years especially 2019 and the rapid decline in mum. I know there wasn't much more I could have done on my own. But equally trying to keep a promise is never set in stone with dementia.

I have alot to say about this journey, but never seem to write about on TP, because words fail me sometimes -I know the points I want to make, but writing isn't enough sometimes so I am coming up with another form of expression, if I succeed I will post it on TP.

I was supposed to do the Trek fund raiser for the AS but being so cornered in where I am at I didn't go. I still raised £160, my target was £1000. I felt bad about this, but when depression takes over the world seems like a non-entity, even watching TV can be a challenge let alone venturing outside the door.

I am medicated now and I seem to have got much better, but deep down I know these issues still lurk until I find some way of release.

I was supposed to go to the BILs tonight, but decided to opt out given the finacial issues and the fact that right now I am not someone to cross in that respect, so to keep the peace its best to do nothing.
 

Bikerbeth

Registered User
Feb 11, 2019
2,114
0
Bedford
You just say it. Then say it again. I'm sorry BiL but I can't help. Sorry but no.

If you give him money he will keep asking for more so don't. And it would be a gift, not a loan - as you say, he never pays it back.

By way of explanation (not that you owe him one) just say you're hard up yourself these days. He can't challenge that.
For what it is worth I totally agree with @Jaded'n'faded.
It is tough if you want to keep the peace too but it sounds like it would just keep adding to the stress levels. I hope it does not result in conflict
 

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
For what it is worth I totally agree with @Jaded'n'faded.
It is tough if you want to keep the peace too but it sounds like it would just keep adding to the stress levels. I hope it does not result in conflict
Hi @Bikerbeth -it won't come to conflict because I won't allow it to. I've had enough over the years with the invisible brother who now seems to be completely out of the picture and his kin. But that said I am going to have to put my foot down, I know its hard for the BIL on his state pension and civil service pension and my nephew with LD's, but he is going to have to learn to cope now my sister isn't there anymore and budget. I have found out a few things from my nieces who are concerned, but addressing this is not going to be easy.
 

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
Tomorrow I am visiting mum. The care home are redecorating and asked me if there was anything in particular I would like to add. I said I don't know, because mum might not like the things she used to like, so we agreed on pastel colours and nothing dark. With the new makeover I have bought her some new bedding as the wash process in the care home seems to really impact on the colours which have faded dramatically in her duvet covers and pillows. I have bought a new duvet and pillow set with gold bees embroided on and a navy blue fitted sheet, which no doubt both will rapidly become either lost or uncoordinated, but its the thought that counts!

We have another new care home manager, after the last interim manager who commuted from Bangor who replaced the new manager before that who replaced the one before that whom got sacked :eek:. Anyone fancy a new career??

I've been told nurse F is returning from mat leave soon and I am delighted, I have really missed her and her excellent updates on mum which haven't existed since she left to have her baby. Welcome back F 😁
 

Bikerbeth

Registered User
Feb 11, 2019
2,114
0
Bedford
That was a nice consideration regarding the decorating. The duvet set sounds smashing.
the manager saga at your Mum’s care home sounds similar to where my Mum is. Even the interim manager and the interim contract manager left. I did offer to sit in the Managers chair if it would help. ;)
It is good to hear that Nurse F will be back soon. I think having someone in the staff that you can ‘trust/rely’ on to give you accurate updates is so incredibly important.
 

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
That was a nice consideration regarding the decorating. The duvet set sounds smashing.
the manager saga at your Mum’s care home sounds similar to where my Mum is. Even the interim manager and the interim contract manager left. I did offer to sit in the Managers chair if it would help. ;)
It is good to hear that Nurse F will be back soon. I think having someone in the staff that you can ‘trust/rely’ on to give you accurate updates is so incredibly important.
Mum looked at her new bedding and she actually commented, which was a surprise, she liked it and then sure enough she had gone again, eventually she somewhat hazardly got herself up and off she went slow shuffle to re-explore the unit and that was the end of the visit.

I sometimes wonder if some of the relatives could do a better job of manager 🤔
 

Palerider

Registered User
Aug 9, 2015
3,139
0
North West
I totally agree. A key staff member can really make or break a place (and that person is rarely the manager!)
Yes I agree

There were originally three nurses F, A and E. A left to work for another care company sadly, E works mostly nights so I never see her, but I know she is there which gives me some peace and then F who is returing from mat leave finally.

I haven't had any engagment from the staff since F went on leave and I feel this is crucial to know that someone is paying attention to residents needs and not just on auto pilot.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,062
0
Kent
I used to get really brightly coloured bedding for my husband in the belief they were more likely to stand up to the rigours of the industrial washing machines. Washed out pastels always look grubby.

We had a couple of `special` carers whose communication always seemed so personal and full of observational gems. I always let them know how much they were appreciated.
 

jennifer1967

Registered User
Mar 15, 2020
11,733
0
Southampton
I used to get really brightly coloured bedding for my husband in the belief they were more likely to stand up to the rigours of the industrial washing machines. Washed out pastels always look grubby.

We had a couple of `special` carers whose communication always seemed so personal and full of observational gems. I always let them know how much they were appreciated.
its not just industrial washing machines but the fact its all put in together so dark colours tend to dye lighter colours therefore making them look grey