A lifelong friend and me, Part 2

Palerider

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Aug 9, 2015
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Well the spinal appointment went swimmingly -referred to acute pain team and weight loss, which to be fair I need to do and there is no way I would have surgery as spinal ops tend to do badly plus I am overweight currently anyway. So its time to actually do something for myself instead of working, and chasing everything else and not putting time aside to sort myself out. It is very easy to get into bad habits on this journey especially if alone.

Mum has plateaued for now and is OK currently (well she's not OK but you know what I mean). I have given feedback on the state of things on my last two visits. Bed not made, wet PJ's on the floor just left, mums recliner filthy with spilt food and yesterday she was sat in her chair with the lead to the control wrapped between her legs, not to mention the general state of her things. They are short staffed with one carer on a one-to-one with another resident and it shows -badly! I cleaned mums chair and the more I cleaned the more I had to take it apart and remove old spilt food from the crooks and crannies. I just thought what the hell is going on here. The issue I feel is that the good senior carers have all left and we have new carers inexperienced who seem to think leaving things in a mess is OK when its not, but equally what are they supposed to do when there are 18 residents and three of them plus the nurse who is endlessly busy sorting out direct care / dressings changes etc. I am just glad my mum now has no real awareness because before dementia god knows what would have happened. Its tough because the carers themselves are OK, however there is a 'but'
 

SeaSwallow

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Oct 28, 2019
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@Palerider It is good that the spinal appointment went well and that you have been given good advice. As carers we don’t always look after ourselves, so sometimes we need a wee push in the right direction.
The carers might be OK but that is a big BUT. You are right to give the home feedback on what is happening with your mum as that is not a good level of care. Hopefully it will improve.
 

Palerider

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I’ve been busy hiding away working, doing quality improvement projects for work as well as working in my normal role. This forum has helped me so much over the last 4-5 years - I seem to be drifting away from it now. I think there is only so much that any one person can write about on this journey because there comes a point when we no longer know. This journey goes from knowing to not knowing how a person is in their world, what their viewpoint really is.

Mum is not well with a chest infection and of course at the back of my mind I am pondering if it will clear up or develop into a pneumonia. I feel for her because she has suffered so much in such a short space of time and of course there is nothing I can really do other than be a witness to her journey and be a presence so that people know someone is watching over her. I visit as often as I can and sometimes, she looks at me with her old look of fondness and smiles, I am familiar sometimes.

I was watching a bizarre New Zealand drama on Prime out of sheer boredom as TV is baron of anything watchable now and this one liner came up ‘There is no death, only the reshuffling of atoms'. which I thought that’s quite an accurate summation.

My doctoral work continues and will do for another few years. I have been reading the work of Iain Gilchrist who makes a very real hypothesis that we have become too dependent on our left hemispheres and need to listen to our right hemisphere more often. I have of course oversimplified that. His books are lengthy but highly readable and he is capturing many readers with the idea that maybe we are getting things wrong in the western world in how we think. Anyone who might be interested worth a read. It makes me realise how wrong we have really got things in many ways but especially in dementia care.

MCGILCHRIST, I. 2021. The Matter With Things: Our Brains, Our Delusions and the Unmaking of the World. Volumes I & II, London, UK, Perspectiva Press.
 

Grannie G

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Good to hear from you @Palerider

I hope your mums not too distressed and is being treated.

Your presence on your visits is precisely how I felt when visiting my mother. It`s nice to know she knows you.

The western world has really messed up and my concern is it`s beyond repair. We can’t be happy with the legacy we leave our children.

I used to pass a Quaker church on my way from work every day. There was a poster attributed to Gandhi

“There’s enough in the world for man’s need but not for his greed. “

Look after yourself.
 

Chizz

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Ghandi is also reputed to have said "The best way to find yourself, is to lose yourself in the service of others" - sounds like all full time carers!
 

Neveradullday!

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Oct 12, 2022
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I remember the Friend's Meeting House in the middle of Manchester used to have the quote (from Gandhi?) “An eye for an eye makes the whole world blind."
The Quakers are obviously big on Gandhi.
 

sdmhred

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Jan 26, 2022
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You tease me @Palerider! What are the headlines for what we have got wrong? Without the need to read the book.

I agree the western world is not that great… I muse on an alternative lifestyle post dementia!
 

Neveradullday!

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You tease me @Palerider! What are the headlines for what we have got wrong? Without the need to read the book.

I agree the western world is not that great… I muse on an alternative lifestyle post dementia!
I still have Mcgilchrist's first book, 'The Master and His Emissary' my goodness is it tough going. His theory is that as @Palerider says, the modern western world is now influenced by the logical left side of the brain (which controls the right side of the body) - it needs to be more influenced by the right side of the brain (intuitive).
If I remember rightly he says amongst many, many other things, modern art is a symptom of the loss of the intuitive (no depth or perspective).
I got half way through but stopped as I was losing the will to live! 😕
 

Palerider

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I still have Mcgilchrist's first book, 'The Master and His Emissary' my goodness is it tough going. His theory is that as @Palerider says, the modern western world is now influenced by the logical left side of the brain (which controls the right side of the body) - it needs to be more influenced by the right side of the brain (intuitive).
If I remember rightly he says amongst many, many other things, modern art is a symptom of the loss of the intuitive (no depth or perspective).
I got half way through but stopped as I was losing the will to live! 😕
I think his new books are much easier to read. I do think he has a very valid point and is we don't change then we may well seal the end of our existence as we know it now.
 

Palerider

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You tease me @Palerider! What are the headlines for what we have got wrong? Without the need to read the book.

I agree the western world is not that great… I muse on an alternative lifestyle post dementia!
Google Iain McGilchrist -he gives a number of talks posted on the internet / youtube.
 

Palerider

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Tomorrow is Mother's day and a day I used to make a fuss of mum, which now of course has dissipated into a visit that feel nothing like they used to. Mum has flowers already as I bought them on Friday and decided not to wait till Sunday because they will only spoil as the weekend goes by.

I watched a film called Nomadland last night, I've been meaning to watch it for sometime. It depicts a women who has lost her husband and lives in her van travelling from place to place working to earn an honest buck. The truth is only revealed towards the end of the film when she can finally admit to herself she could not let go of the place they lived in after the death of her husband. Finally she revisits this place, gives away all the stuff she had kept in storage and revisits the house that was once home one more time. Sound familiar in some respects to those of us who have sold up the family home and lost someone to dementia? Letting go /moving on is one the hardest things to do because the ties that bind us are so strong they are unbreakable even when a significant person in our lives has gone. Its weird to find myself connecting with the film even though my mum is still here, she is for all intents and purposes gone from me to somewhere in the world of dementia. Despite this, I continue because whatever happens, whatever comes she is my mum and one of my best friends.
 

Palerider

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You and your mum both sound weary and I wishing you mental peace both of you @Palerider
Weary yes, but also stubborn. My mum is so frail now I keep on thinking we are at the end of a long journey, but then how long is a piece of string ? My viewpoint has changed as my mum has changed and for the first time I am siding on the fact that I know at this stage she most certainly would not want to continue unless there was a miracle cure. This disease is one of the cruelest in many ways, even in its late stages.
 

Palerider

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Today is Grand national day and I have good memories of mum placing her annual bet of meagre proportions and then jumping up and down in front of the TV -I have never forgotten Red Rum in 1973, when my mum and gran were elated. Today was a very different story, far removed from half a century ago. I sat trying to wake mum up as she slept in her recliner chair as usual her dinner on her table going cold. She was clearly dreaming -sometimes its hard to tell because the dementia as it is now also makes her jolt and twitch sometimes. At one point she moved forward eyes closed as if to rise from her chair and then fell back. Finally after 15-20 minutes she opened her eyes and looked exhausted. I managed to get her to eat some of her lunch before she dosed again, not even a look as if I am someone familiar today and a few mumbled incoherent words. I decided to leave after waiting for 40 mins as this is her sleep pattern and has been for sometime now; I stay longer if she's feeling chatty, even though I can't understand what she tries to talk about. I'm not always sure what to do anymore or even if there is anything else to do. I do feel a great sense of loss that I didn't feel before, each phase of this journey has been one of constant grief but in different respects, now more than ever all that is left are memories as the once told family stories from mum are no longer told, there is no longer any oral history or funny tales from the past. :(
 

Chizz

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Jan 10, 2023
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Yes @Palerider it's v difficult.
Being there, holding/pressing a hand, etc can make a difference.
The anticipatory grief, I find, doesn't get easier.
Best wishes.
 

Palerider

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I have recently become more distant than I was before and don't seem to have the emotional pain I used to have with this wretched journey. I worry though is this normal? I'll be honest and say my world has become pretty flat and seemingly uncomfortable not feeling the way I think I should, but then 8 years erm 9 this year is a long time to keep on fighting with emotions.

I keep up the weekly visits, sometimes 2 a week and always one and if on leave from work even three. Nothing changes in all of that, same old short staffed, lack of training on basic skills -this morning one of the carers got things completely wrong and attempted an under arm lift on my mum -safe to say my glare and frown was enough without having to say anything. She ignored me when I told her mum was trying to stand up and without any thought pushed my mum back in her chair after I had said a second time she is trying to stand up. Consequently then came an attempt at correction and the under arm lift. Fortunately the carers actions had ****ed my mum of so much she withdrew her arms and flinched back from the carer who at this point was seemingly very red faced and feeling a tad embarrassed. I just thought things never change. The under arm lift were stopped years ago because of the injury they can cause and clearly some people just can't read situations no matter how often they work with someone. Anyway mum eventually rose with some help from her son and once again continued on her never ending walk (well slow shuffle). I wish there was some way out of this nightmare for mums sake and mine.
 

Palerider

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I contend that I felt nothing but misery over the last few months, very low at how things are. To add to this constant grey erm black cloud mum was again struck by a male resident -not the first time in four years. This is not what I wanted for my mum but this is how the system is unfortunately. I could see a pattern emerging with this particular male resident over a few weeks when I visited -and here we are. This only serves my guilt even more.:( The nurse as usual was not able to divulge information, but I had an inkling who it might be she did admit that things has been escalating. It's a tough situation because I also know that perpetrator was probably never like this before dementia and would be mortified if they had insight -but it doesn't make me feel any better knowing this -sigh. Anyway I am planning to take mum out for a drive in June and see how she does, even she lasts only 20 mins its an escape from what has become monotony.

On another note the CHC sprung a sneaky review in April. I only found out via letter after the fact -safe to say a letter was sent informing they seem to have forgot to notify me in advance :mad:. Anyway the decision was that mums remains eligible for CHC funding -not surprising as the IRP report was fairly damming and there is now a high threshold to meet if they wish to withdraw funding.
 

SeaSwallow

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Oct 28, 2019
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I am so sorry to hear that another resident has hit your mum, I do hope that the home are looking at it as a safeguarding issue. This must be so hard for you, I remember how I felt when the actions of another resident led to my dad having a broken ankle.
What a sneaky way of arranging the CHC funding review but pleased that it is still in place.
I know that it is hard but please try to take care of yourself also.