• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

sicut animam suam : 'it's just life'

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
A wierd day, very busy at the shops -which made me wonder for a moment if something was going on I didn't know about and then decided I was being paranoid.

Due to the visiting policy I haven't been able to see mum until the appointment which this week falls on Sunday -at least the traffic will be minimal. I need to get her a whole load of new trousers -again. This is because she has lost more weight and although width is needed for her leg swelling the current ones are too long now.

Still nothing from the CCG/CHC.

I've written back to the LA fiancial assessor and asked them if they could have the common decency to either email me or send me a cover letter in the post over what was settled in terms of mums care fees, rather than just post blindly an invoice and what if any are outstanding issues as they disputed the account with the care home.

I have come to a decision, which I needed to in time to move closer to work and my friends. Its taken since October to realise this for myself, but sometimes we have to make these decisions when we have had time to think and adjust. There is nothing here now for me. As I only visit mum once a week now I can do that from 45 miles away once a week. The guilt I first felt has dissipated as I know at heart my mum would not want me to cling on to a situation that is hopless and she always said to me 'you must live your life'. I don't know when the move will happen, probably after Xmas but it may be before.
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
I love the way how the light changes this time of year, not as harsh as midsummer, more mellow and easier on the senses. Today the light is evoking an awakening - autumn is coming, my fave time of the year, a time for nature to fade from green to reds and browns, I love driving down the lanes and seeing those colours as they evolve.

My memory of how things were has finally faded from 2 years ago and I seem to be more accepting that there is nothing I can do now anymore (as my aunt Ruth told me). Its been a painful process to go through not helped by the lockdown we had with no visiting for a year.

A consultant friend advised it might be best not to visit mum anymore, but she had no understanding of our relationship as good friends, though I saw her point, she was concerned for me. Its hard to explain to someone the lived experience of dealing with and caring for a person who we are close to and our love knows no bounds and in time her repeated efforts grated with me on discussions around my visiting mum.

I used to keep a diary, but that stopped when I joined TP, my diary has been my entries on here for the last few years, though I have obviously witheld some things that are not for publication.

Change is coming and I know it has to be, I remember my mums approach when bad things happened she we say 'there's nothing we can do about it, come on lets go...'
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,363
0
Kent
I'm surprised anyone would suggest we stop visiting @Palerider, even if it's only to make sure the care is up to standard.

I was lucky my husband seemed to feel our visits were valuable right to the end, but it wasn't`t so with my mother. She just stared into space with no apparent awareness of her surroundings or my visits.
When Social Services agreed, in the late stages of dementia she could be moved to a new home which was culturally perfect, a social worker visited to check, I suppose, all I said was true. She greeted my mother as asked her name. Without hesitation my mother replied, "Irene S" She had not uttered a word for months previously and everybody was surprised.

I will never again take for granted people with dementia are lost to us, even in the final stages.
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
I'm surprised anyone would suggest we stop visiting @Palerider, even if it's only to make sure the care is up to standard.

I was lucky my husband seemed to feel our visits were valuable right to the end, but it wasn't`t so with my mother. She just stared into space with no apparent awareness of her surroundings or my visits.
When Social Services agreed, in the late stages of dementia she could be moved to a new home which was culturally perfect, a social worker visited to check, I suppose, all I said was true. She greeted my mother as asked her name. Without hesitation my mother replied, "Irene S" She had not uttered a word for months previously and everybody was surprised.

I will never again take for granted people with dementia are lost to us, even in the final stages.
Hmm I don't believe anyone is lost to us ever but what happens is we build our own explanations to help us deal with any loss that we feel especially if someone is still living. My mum is there and I know she is, she might not be able to articulate in the way she used to but for as long as my mum is alive I will go and see her, hold her hand, hug her and give her a kiss on the forehead as much as I can. Its fine for freinds to think well of us, but sometimes they get it wrong. My leaving is not because of mum, but because I need to make my work time easier and hopefully make the time I have with mum more useful.

But you have given me an idea @Grannie G -mum can't hold any conversation anymore, but what I have noticed is that she can read still, so on Sunday I am taking a short message written out for her to read and see if she relates to it, I have no doubt she will, though she might not recognise the author in the room with her
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
Well I have just watched a fabulous film and recommend it if anyone fancies something different but uplifting


To thine own self be true
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,021
0
High Peak
Change is coming and I know it has to be, I remember my mums approach when bad things happened she we say 'there's nothing we can do about it, come on lets go...'
You know, I used to fear change. As I've got older, I've also found changes harder, sometimes more unsettling or just so flippin' difficult I feel like a failure. (And who doesn't hate getting used to a new phone/software, etc. Or is that just me?)

But... change is good. Change is inevitable. Some wise soul once told me that 'changes will happen whether you like it or not so you may as well try to like it'. And just as you were able to let the autumn colours flow over you and bask in it, you sound very much as though you are ready to welcome change in your life, albeit with some trepidation. You are strong and brave and kind. And your mum is very wise :)
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
You know, I used to fear change. As I've got older, I've also found changes harder, sometimes more unsettling or just so flippin' difficult I feel like a failure. (And who doesn't hate getting used to a new phone/software, etc. Or is that just me?)

But... change is good. Change is inevitable. Some wise soul once told me that 'changes will happen whether you like it or not so you may as well try to like it'. And just as you were able to let the autumn colours flow over you and bask in it, you sound very much as though you are ready to welcome change in your life, albeit with some trepidation. You are strong and brave and kind. And your mum is very wise :)
Thanks @Jaded'n'faded

Its funny we watch others and think they need to change, but when it comes to ourselves we have absolutely no idea. But this change is different to all the others, it isn't about taking the next step forward its also what is left behind. One day I woke and realised all my immediate family that ever mattered to me was gone, my anchor and my soul. Yes I had lived away for years, but they were always there alive and kicking and jolting me back to reality of life. Now I wake up in the morning and I have to scrub my first thoughts about my kin because quite simply in five years they have all gone, well apart from my brother, but he was always a pain in the ass until he realised he was never going to get his own way and since has abandoned me and mum -but such is life huh?

The next steps truly are with trepidation, because now I have to seriously put my trust in others, there is no one else. You know I envy my mum because she had more resillinace in her little toe than I have in my whole body. I just hope as I move forward some of her spirit awakens in me ;)
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
Tonight I am scratching my head and wondering what to have for a meal -then I thought sod it, chips, sausage and egg will do! I find cooking for one harder than cooking for many and besides we all have our less than nutritional meals for when the mood doesn't take us 🤨

My visit this week was cancelled on advice of infection control to stop visiting (yet another gestapo establishment in our midst), this was done as a precaution with no actual infection evidenced (of any sort) -the mind boggles! Next week is mums birthday and there is no surity that visiting will be resumed by then. There is nothing anyone can do about this regime in care homes, but I am thankful that mums care home at least are far ahead of others.

Yesterday I went to another funeral a colleague I worked with, it seems that time is catching up with us all. I felt for her having worked so hard for over 40 years, looking forward to her retirement and within a few years wallop! The funeral was at a crem out of my area and I was surprised at the layout inside, on one side were large panes of glass that overlooked a tranquil pond and waterfall and uninterupted bushes and trees -it was quite spectacular to listen to the service as I peered out and admired the view. The closing of another chapter.

The PhD project is starting to shape after a pause and the next six months will about putting together the methodology while reading endless articles on the matter which no doubt will lead to being removed from the original subject matter and I will sit and think 'how did I end up over here?'. I have found some interesting articles I think forum members may find interesting and educational but not sure whther to post them 🤔
 

Lone Wolf

Registered User
Sep 20, 2020
195
0
Tonight I am scratching my head and wondering what to have for a meal -then I thought sod it, chips, sausage and egg will do! I find cooking for one harder than cooking for many and besides we all have our less than nutritional meals for when the mood doesn't take us 🤨

My visit this week was cancelled on advice of infection control to stop visiting (yet another gestapo establishment in our midst), this was done as a precaution with no actual infection evidenced (of any sort) -the mind boggles! Next week is mums birthday and there is no surity that visiting will be resumed by then. There is nothing anyone can do about this regime in care homes, but I am thankful that mums care home at least are far ahead of others.

Yesterday I went to another funeral a colleague I worked with, it seems that time is catching up with us all. I felt for her having worked so hard for over 40 years, looking forward to her retirement and within a few years wallop! The funeral was at a crem out of my area and I was surprised at the layout inside, on one side were large panes of glass that overlooked a tranquil pond and waterfall and uninterupted bushes and trees -it was quite spectacular to listen to the service as I peered out and admired the view. The closing of another chapter.

The PhD project is starting to shape after a pause and the next six months will about putting together the methodology while reading endless articles on the matter which no doubt will lead to being removed from the original subject matter and I will sit and think 'how did I end up over here?'. I have found some interesting articles I think forum members may find interesting and educational but not sure whther to post them 🤔
Yes @Palerider, please do post those articles, I look forward to reading them - and give me sausage, egg & chips any time over fine dining.
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
Thanks @Lone Wolf -I will post in time, though the truth can be hard to bear, not least because there is so much evidence that points in the wrong direction when it comes to dmentia care -it is ultimately frustrating to read if there is a lived experience.
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
Today has not been easy and some of the threads on TP can be evocative in recounting my own experiences.

Tonight I am trying to make italian meatballs before Endeavour starts, but I seem to be failing as I repeatedly end up sitting in deep contemplation over things and 'stuff'

Last night I couldn't sleep and ended up watching Netflix till about 02:45 -trivial stuff. I went to bed and could not close my eyes even though I felt tired and sleepy. In those preceding minutes all I could think of was my mum standing at the door wishing me goodnight after my attempt to get her to bed (incontinence sheet included and accepted by mum) and the ritual 'see you in the morning' so with that in mind I had to say all of it out loud, even though she wasn't there.

Today it struck me that I seem to be endlessly unoccupied now mum has gone into care. G asked me in Sainsbury's how I was today, and I said to be honest I struggle when I am not occupied with something after so long looking after mum at home.

But what got to me the most today and something that has bugged me since my sister died was the care she got at the end of her life. All I can say is that the only thing we can do is to be present and to challenge what is unfolding in front of us. I will never forget my anger as it rose from toes to my head when I had enough having to repeatedly chase pain relief and penultimately the giving of IV fluids to someone who's body can no longer process them.

Some of us are lucky in life and we are spared close occurrences of loss, it doesn't make it any easier, but sure as hell everything in a short space of time drives the subconcious into a space that takes time to unravel.
 

Lone Wolf

Registered User
Sep 20, 2020
195
0
Thanks @Lone Wolf -I will post in time, though the truth can be hard to bear, not least because there is so much evidence that points in the wrong direction when it comes to dmentia care -it is ultimately frustrating to read if there is a lived experience.
Sadly, nothing does or will surprise me about the inadequacies in the system.
 

Lone Wolf

Registered User
Sep 20, 2020
195
0
Today has not been easy and some of the threads on TP can be evocative in recounting my own experiences.

Tonight I am trying to make italian meatballs before Endeavour starts, but I seem to be failing as I repeatedly end up sitting in deep contemplation over things and 'stuff'

Last night I couldn't sleep and ended up watching Netflix till about 02:45 -trivial stuff. I went to bed and could not close my eyes even though I felt tired and sleepy. In those preceding minutes all I could think of was my mum standing at the door wishing me goodnight after my attempt to get her to bed (incontinence sheet included and accepted by mum) and the ritual 'see you in the morning' so with that in mind I had to say all of it out loud, even though she wasn't there.

Today it struck me that I seem to be endlessly unoccupied now mum has gone into care. G asked me in Sainsbury's how I was today, and I said to be honest I struggle when I am not occupied with something after so long looking after mum at home.

But what got to me the most today and something that has bugged me since my sister died was the care she got at the end of her life. All I can say is that the only thing we can do is to be present and to challenge what is unfolding in front of us. I will never forget my anger as it rose from toes to my head when I had enough having to repeatedly chase pain relief and penultimately the giving of IV fluids to someone who's body can no longer process them.

Some of us are lucky in life and we are spared close occurrences of loss, it doesn't make it any easier, but sure as hell everything in a short space of time drives the subconcious into a space that takes time to unravel.
From memory of your posts at the time @Palerider, you did everything that you possibly could in the most difficult circumstances, which I am sure made a huge difference to your sister's journey end.
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
Tomorrow is mums birthday and I am not allowed to visit. This will be the second year in a row that I have been absent on one of the few really important dates that really celebrate my mums life. The situation is far from acceptable as over two weeks ago all visiting to the unit was stopped, but no one contacted me from the home to explain the situation and I was informed by admin it was not because of infection (Covid-19). Over a week later I get a call fron the 'clinical lead' telling me that visiting this week will not be resumed because over a week ago two residents tested positive on a lateral flow test (the very test that care homes have contested nationally). I was told that we now have to wait for PCR test results, etc. I was of the understanding that all residents were being PCR swabbed to eliminate this ongoing issue of lateral flow test efficacy -clearly I was wrong! But what really infuriates me is how over the last year the lateral flow test was refused by the care home sector and now after all the doubt they raised it is conveniant to use it. There are some serious clinical decision making problems here, but who am I to question?

Anyway @Lone Wolf and anyone here is a scoping review that hits on some significant findings from reviewing the last ten years of research on dementia care -its easy to read, and it didn't surprise me one bit:

A scoping review of gaps and priorities in dementia care in Europe​


After all of the money and drive it seems things haven't changed, but also here is another review of the literature which requires the reader to be more analytical in drawing out what it means:

 

Lone Wolf

Registered User
Sep 20, 2020
195
0
Thanks for the references @Palerider. The following conclusions stood out, from the first reference first, and then the second.


"Results of the review highlight a critical need to empower staff involved in dementia care with the skills required to improve their confidence in delivering care. The lack of competence in dementia care strongly associates with job strain and dehumanized delivery of care in frontline practice (Edvardsson Sandman, Nay, & Karlsson, 2009)."

"This scoping review and systematic mapping of the evidence reveals a paucity of robust evidence to inform the successful dissemination and implementation of evidence-based dementia care."

In my experience, empathy, common sense and, critically, sufficient time, go a long way to providing good dementia care. The first two attributes are the luck of the draw, but the last is thwarted by our profit centered care system (& erroneously described as person-centered care).

And empathy and common sense clearly lacking re your Mum's birthday. Would the decision maker accept the same restrictions on seeing their nearest & dearest? You are not asking for a crowd to visit your Mum, her emotional and family link to you are just as, if not more, important than her physical care. My observations are that emotional links are the last to be impacted by dementia, if at all. Tell the decision maker you will contact CQC for their view.
 
Last edited:

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
Thanks for the references @Palerider. The following conclusions stood out, from the first reference first, and then the second.


"Results of the review highlight a critical need to empower staff involved in dementia care with the skills required to improve their confidence in delivering care. The lack of competence in dementia care strongly associates with job strain and dehumanized delivery of care in frontline practice (Edvardsson Sandman, Nay, & Karlsson, 2009)."

"This scoping review and systematic mapping of the evidence reveals a paucity of robust evidence to inform the successful dissemination and implementation of evidence-based dementia care."

In my experience, empathy, common sense and, critically, sufficient time, go a long way to providing good dementia care. The first two attributes are the luck of the draw, but the last is thwarted by our profit centered care system (& erroneously described as person-centered care).

And empathy and common sense clearly lacking re your Mum's birthday. Would the decision maker accept the same restrictions on seeing their nearest & dearest? You are not asking for a crowd to visit your Mum, her emotional and family link to you are just as, if not more, important than her physical care. My observations are that emotional links are the last to be impacted by dementia, if at all. Tell the decision maker you will contact CQC for their view.
There is much to share yet -but yes this evidence as opposed to anecdotes is somewhat worrying
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
So today is mums birthday

HAPPY BIRTHDAY JEAN XXX

I whizzed by M&S this morning and bought three new pairs of trousers, two comfy pullovers, one large bunch of flowers, a box of belgian and a little bottle of pink proseco and dropped it all off at the care home. Unfortunately I wasn't there to engage her with it all but have received pics from the care home and mum seemed in her element chatting to the person taking the pic rather than unwrapping her pressies -lol at leat she didn't go without anything ;)
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
This morning is a sad one. The next door neighbour but one was found after her son broke into the house only to find she had passed. I heard the conversations and the break in and intially thought someone was having a new door frame, but sadly not. :( What an awful situation.
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
Another article on 'wandering' which isn't a good term, 'walking with purpose' is much better. I had to read this because I wanted to understand more about why people with dementia 'wander'. I don't like some of the terms used but it is useful in trying to understand what is an unknown:

Wandering and dementia​