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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.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.
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?)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...'
Thanks @Jaded'n'fadedYou 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
Yes @Palerider, please do post those articles, I look forward to reading them - and give me sausage, egg & chips any time over fine dining.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
Sadly, nothing does or will surprise me about the inadequacies in the system.
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.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.
There is much to share yet -but yes this evidence as opposed to anecdotes is somewhat worryingThanks 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.