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sicut animam suam : 'it's just life'

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
No luck needed I found a link and a gap. I don't know where the care of PWD will end up in the next few years but I only hope that as each of us including the long standing fighters such as Dawn Brooker in the end bring some significant change to a system that is beyond broken for PWD - the next few years will see more researchers looking at more fundamental failures in dementia care 🤞
 

Sarasa

Volunteer Host
Apr 13, 2018
4,836
0
Nottinghamshire
Good luck with all that @Palerider. I write fiction not properly argued dissertations, but when I'm stuck I find just writing anything that vaguely takes me where I want to go is better than nothing. It then gives me something to go back and work on.
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
Good luck with all that @Palerider. I write fiction not properly argued dissertations, but when I'm stuck I find just writing anything that vaguely takes me where I want to go is better than nothing. It then gives me something to go back and work on.
Funny you should say that as thats what I am doing, I have decided to slow down I still have plenty of time and when you only have a thousand words to sell something it needs some real articulation....

I am feeling more positive though about life since I started this project, its stopped from dwelling in things I can't change
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
Totally beautiful. One of my favourite hymns. My friend, who is a classically trained tenor, sang it at the funeral of a close friend of his.
Yes its a good performance, I have days where I just listen to one piece after the next and then wonder where the day has gone
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,647
0
71
Dundee
Ok here we go my mum loved gospel ---so sing along

That’s one of our memories choir songs. We’ve not met since the beginning of the pandemic. We hope to get back together in January. Mind you - we don’t quite sound like this! 😂 🎶
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
Yesterday was my first counselling session after 6 months of waiting and then in the evening I went to visit mum.

She was more responsive because by 7pm she had snoozed most of the day and was waking up for her night routine. She was chatty but at one point she gave a big smile and put her hand on my face talked for a few seconds with this big smile and then she dicided it was time to start her nighttime adventures and she was off, rather unsteadily and at a snails pace. I walked with her to the unit door and then on the otherside watched her through the glass for a minute.

The nurses were having handover and E came to say hello. I like E and am glad she has not left the home as many others have -I know someone who cares is on over night. One of the care assistants was telling me that mum calls everyone Simon -bless her.
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
Today I braved the local supermarket, which at this time of the year after the last few years I tend to avoid now -I won't be returning in a hurry! Today no xmas music -there are only so many times I can hear the same old blasting out in the fresh meats section
🤨
and besides its not Christmas yet -call me traditonal but I love Christmas music, but not weeks and weeks before it is supposed to be listened to.

Care home closed to visiting as Covid strikes again -its looking like this might be extended over the xmas period, meanwhile plan A seems to moving ever slowly along the alphabet -today C was mentioned (or was that yesterday)....er or have we hit plan Z already??

As another year draws closer to Christmas I remember where I was last year, visiting my poor sister with not a chance despite all of the medical advances in cancer treatment. It gets harder but I hope in time it will become easier again and one day in the future how I used to feel about Christmas might return, even though my family are gone and my brother has clearly cast me and mum into exhile.
 

TNJJ

Registered User
May 7, 2019
2,530
0
cornwall
Today I braved the local supermarket, which at this time of the year after the last few years I tend to avoid now -I won't be returning in a hurry! Today no xmas music -there are only so many times I can hear the same old blasting out in the fresh meats section
🤨
and besides its not Christmas yet -call me traditonal but I love Christmas music, but not weeks and weeks before it is supposed to be listened to.

Care home closed to visiting as Covid strikes again -its looking like this might be extended over the xmas period, meanwhile plan A seems to moving ever slowly along the alphabet -today C was mentioned (or was that yesterday)....er or have we hit plan Z already??

As another year draws closer to Christmas I remember where I was last year, visiting my poor sister with not a chance despite all of the medical advances in cancer treatment. It gets harder but I hope in time it will become easier again and one day in the future how I used to feel about Christmas might return, even though my family are gone and my brother has clearly cast me and mum into exhile.
Wishing you a Merry Christmas . Let’s hope things are better next year.🎅
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
MERRY CHRISTMAS everyone and sending all TP members PEACE.

Yesterday was a quite day home alone, which was strange. I did cook a Christmas dinner, which as I went through the stages brought back memories of much happier times -how my mum and sister would make the Christmas cake and Chritmas dinner never failed to appear each year a testimony to how important it was to my mum. A white Christmas would have been a bonus as mum used to love the snow and frost on the trees and the eery silence.
I never thought that this is where I would be several years ago, but I guess this is life, it's just life.

This year visiting at Christmas has been cancelled due to covid in the care home once again, so I am waiting for a facetime -which is dependent on whether mum is awake or snoozing.

I'm not visiting the BILs this year as I worked all last week getting home late on Christmas Eve and I am back again tomorrow for another run of busyness as people who have endeavoured to be with their families realise they need to seek help.

One of my faves
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
Well I'm glad the main event is over, it doesn't sit right with me at the moment, so Christmas has been put away into its box for next year.

The next weekend, New Years Day is the first aniversary of my sister passing. I have to make an effort and visit the BILs this next weekend. I always go if I can to view the book of remembrance and keep the memory alive of my grandparents, this year it will be grandparents and my sister their grand daughter. I often wonder if they're having a good old gossip???

Mum appeared on facetime while she was eating her lunch -consequently her attention was on her soup, which she seemed to be actually eating at the time. Short facetime but I'm glad I at least got to see her. I have no idea what happened to her new Christmas jumper -the mind truly boggles!

Onwards and hopefully back to boring old normality
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
Well I have been and paid my respects to very much loved grandparents and my sister. I try to go every year, which I have been able to for the last few as my colleagues are supportive and plus I get to work the first day back after the bank holiday :eek:. The book of remembrance as always open on the page. Funny how we do these things, but I feel a closeness that I miss dearly. It never changes very much, but it is a beautiful place and at the heart of where my family come from and lived orginally before change.

'Death leaves a heartache no one can heal, love leaves a memory no one can steal' -Anon

Mum is not so well at the moment and not being able to visit is always a worry. I don't know if this is going to be another bumpy ride, but all I want now is to be able to make the most of our time -Covid seems to be limiting that! There is a risk in everything we do and no garauntee that another virus won't come along some time soon. I was chatting with consultants at work and there is mixed feeling now as Covid has become endemic and will continue to mutate just as Flu does.

Anyway here's to 2022, lets hope our lives are that little bit easier and our conscience clear as we cope with dementia in our lives...🥂🍾


Edited: forgot the fireworks
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
Another week of hell at work, but to be fair they are all sick in some way and in the right place and of course as always this week as in every week the breaking of bad news to the few who nature has thrown her dark side.

Two nights ago I was driving home from work and thinking of mum, how she had shaped me into who I am today and how much I miss her being here now. No one can go on forever, but being cheated by this dreadful disease of the last few years makes me feel so angry at times. Anyway as I got half way home one of her fave songs came on the radio -Shenondoah, which made me smile because right up until she went into care she knew the words and would sing along when I played it -she had always remembered this song right from when she was a school girl. I am not sure if it was just chance on that night or another power, but it made me smile rather than feel sad on the way home. No matter what I do I can't seem to escape loosing my mum to this god awful disease -I can be OK one minute and then reflecting on the destruction of this utterly damned disease.

I play lots of music, but this tune not surprsingly continues to stick in my head:

 
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Palerider

Registered User
Aug 9, 2015
3,135
0
North West
I am not sure if I belong on TP anymore. I am not the worlds best at ignoring issues when they arise and doubtful if I offer any help at all when I comment on different threads. To me it seems there is a new order on social media of those who do not need to think, who make claims from far reaching google sources and type responses I personally find hard if not almost impossible to believe given my own journey is this putrid area not only of the disease but the often foul trail it leaves behind in many families who finally have to come to some resolution over dominance and a fair degree of abuse as has been my own journey this far.

It is easy to hide behind a compuer screen an ascribe to utter rhetoric, but is less easier to connect and understand a person or persons predicamnet, and no amount of googling will ever replace the fundamental sense of being human, our sense of mutual understanding
 

jennifer1967

Registered User
Mar 15, 2020
11,679
0
Southampton
i think you belong here as much as anyone else. i always read what you have to say as its valid. i think newer members need your experiences and another perspective on how to cope or better ways to handle a situation
 

Palerider

Registered User
Aug 9, 2015
3,135
0
North West
i think you belong here as much as anyone else. i always read what you have to say as its valid. i think newer members need your experiences and another perspective on how to cope or better ways to handle a situation
I am all for free speech and self opinion this is the human condition, but I am not for inaccurate and misleading advice, misrepresentation of the facts or will I tolerate mid family abuse of which I have been subjected to myself. All opinions should be laid bare, truthful accounts and not clouded by misinformed opinion the latter of which has become rife on TP of late.

People with dementia deserve a better stronger forum and those who care for someone with dementia deserve strong support but that also does not allow them to become misinformed and to argue something that is beyond reach, to become in a sense a part of their own subtitude
 

CAL Y

Registered User
Jul 17, 2021
305
0
@Palerider . I’m sorry but I don’t quite understand your post.
In the time I have been on TP I have never felt that anyone was trying to peddle misinformation.
I have always found it to be very helpful and supportive and certainly never thought that anyone was trying to force their own theories upon me.