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sicut animam suam : 'it's just life'

Lone Wolf

Registered User
Sep 20, 2020
162
0
Sorry to hear about your mum's fall @Palerider , and also how care isn't quite what it should be.
I've just got back from staying at my sister's and had a couple of visits to see mum. The weather wasn't good enough to take her out for a walk, so my husband and I had 2 indoor visits.
They are in a designated room, I'd rather be in mum's own room where there are familiar items, photos etc to promote chat and so I can have a "tidy" as I used to pre covid. Also if visits were in residents own room there wouldn't be the limits of a 30 minute slot. It seems that all care homes follow guidance, but interpret it as they prefer.
Mum's carers are lovely and she is happier now indoor visits allowed.
I wonder if anyone can explain to me why, as a visitor, after my LFT I had to wear mask, apron and gloves ( I wasn't doing any "personal care" ), but the carer who brought mum to the visitor room only had to wear a mask?
I know the thought is now that infection risk from a surface ( eg my jumper?) is low, and also the apron is so flimsy and doesn't cover my arms etc What a huge cost to taxpayers and the environment if all this plastic isn't for any real purpose? Just ticking a box?
I wonder if you know why visitors have to wear the ppe @Palerider? If there's a good reason I will happily wear it, but mum always asks me why?
Ps good luck with your interview
Likewise @anxious annie I too have to wear mask, gloves, & apron so flimsy it would not protect from a floating dandelion. And time limited visits, only allowed in the conservatory, accessible from outside. (Why weren't they using it for visiting previously?) One thing I find apalling is that some (not all) carers end the visit abruptly without warning and I am given no time to wind the visit down, as it were (not actually say goodbye because that might cause distress).
 

Pete1

Registered User
Jul 16, 2019
909
0
Hi @Palerider, sorry to hear about your Mum's fall and also the decline in care provision, which seems to be a theme that many are experiencing now they are finally allowed to visit. It obviously is a combination of things as you have outlined, but the absence of visitors (with very little external inspection) must be the key. I would visit Mum daily and always pick up on the basic care delivery - clean glasses, clean teeth (or even teeth in!), hair, personal hygiene, and dress. In fairness the Manager of Mum's unit always dealt with issues that I raised (some things I sorted myself but raised with them). It is the bare minimum that anyone should expect. It is incredibly sad that families have been excluded for so long. As you state there needs to be radical reform, however, we know lip-service is paid to social care and has been for the last 11 years. Sadly it is something you really only understand when it touches your life - a friend of mine mentioned this last year when her mother needed care and came to me for advice, she had no understanding of the systems or the stress involved in commissioning care and even what to ask for (it was home care at that time, but has moved on to residential care). She had know what I had been through with my parents and actually said she didn't really have any understanding until she had experienced it - despite hearing me banging on about it!! As you say it is well known that it is a ticking time-bomb with an aging population (and a serious issue in pockets of the country already) - but is something that is repeatedly kicked into the long grass for someone else to deal with in four years time. As the only real solution - as Dilnott pointed out, what 10 years ago? - is significant investment into the system.

I hope all goes well with the interview.

Pete
 

Palerider

Registered User
Aug 9, 2015
2,537
0
North West
Hi @Palerider, sorry to hear about your Mum's fall and also the decline in care provision, which seems to be a theme that many are experiencing now they are finally allowed to visit. It obviously is a combination of things as you have outlined, but the absence of visitors (with very little external inspection) must be the key. I would visit Mum daily and always pick up on the basic care delivery - clean glasses, clean teeth (or even teeth in!), hair, personal hygiene, and dress. In fairness the Manager of Mum's unit always dealt with issues that I raised (some things I sorted myself but raised with them). It is the bare minimum that anyone should expect. It is incredibly sad that families have been excluded for so long. As you state there needs to be radical reform, however, we know lip-service is paid to social care and has been for the last 11 years. Sadly it is something you really only understand when it touches your life - a friend of mine mentioned this last year when her mother needed care and came to me for advice, she had no understanding of the systems or the stress involved in commissioning care and even what to ask for (it was home care at that time, but has moved on to residential care). She had know what I had been through with my parents and actually said she didn't really have any understanding until she had experienced it - despite hearing me banging on about it!! As you say it is well known that it is a ticking time-bomb with an aging population (and a serious issue in pockets of the country already) - but is something that is repeatedly kicked into the long grass for someone else to deal with in four years time. As the only real solution - as Dilnott pointed out, what 10 years ago? - is significant investment into the system.

I hope all goes well with the interview.

Pete
Hi Pete,

Haven't heard from you in a while. I hope your well.
"Our current funding system for adult social care is not working. It is widely perceived to be unfair, it is under-resourced, and many people are not receiving the care and support they need" The Dilnot Report, 2011, page 80.​
The CQC again addressed this in its 2020 report on the impact of Covid-19 on social care -and gave a warning shot that the system is close to collapse.

I think as a society we geninely bury our heads in the sand in the hope that we don't have to face natures darker side, but sadly no matter how much we try nature yields her beating stick and dishes out disease most of which we have no cure for. Its luck of the draw in the end in who gets what in terms of illness -no one goes out one day and says to themselves ooh I think I'll have dementia or some other nasty disease. The other side of this disease is that it is invisible largely to outsiders, so they don't get to see how it impacts on daily lives of pwd and their carers -that is evidenced very clearly on TP alone across the threads.

The fundamental problem with dementia is that is seen as an non entity medically and is pushed out to the realm of social care. The reality is that there is no treatment and no cure and what remains is a disease that strips a person of their function and abilities while also stripping the carers of their lives and much more. Many eople with dementia end up needing 24/7 care and this is the straw that breaks the camels back for the carers, because there comes a point as we all know that we can't deliver that level of care on our own.

Silence by consecutive governments is not an answer to fixing dementia care. I think the Alzheimer's Society current campaign hits that point very clearly -cure the care system. I have lost count of the petitions and emails I have written, but I will persist until we see change...

 

Palerider

Registered User
Aug 9, 2015
2,537
0
North West
The last week I have been thinking about the last five years and how it has affected me personally, how I have changed in my persona and how I am still catching up with many mixed emotions and essentially how I feel from day to day. Such experiences can affect us in ways we don't see ourselves. I have days where I am irritable, days where I am exhausted and days where I think too much and keep on hanging on to mum as best I can. I also have days where people mistake tiredness and exhaustion for mood, and silence is assumed to be something it is not.

My flight-fight response has become confused and disjointed and I tend to run away from things these days or remove myself, because I just can't cope with people in the way I used to anymore. I've become a passenger on this journey at the mercy of the driver who can't see and doesn't hear.

I'm struggling to find how I change this and take the drivers seat again...
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,412
0
Kent
It has been suggested that the effects of long term caring for a person with dementia are equivalent to PTSD and I think there`s some truth in that.

I doubt any of us are the same as we were.

I find small talk irritating and am less tolerant of what to me are trivial moans and groans.

I`m sure you will find a balance eventually @Palerider but it`s early days yet.

I`m years more down the line than you are but still have off days. Yesterday, all I did was eat , sleep and read. Today I feel fine.

This is how it is and I allow my body to take the lead.

You are still working whereas I`m retired, so you will have more to put up with than I do.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,485
0
High Peak
I wish I had some answers for you - or for me. I have to agree with @Grannie G - that post-caring carries a sort of PTSD. It's not all bad though. I now see life as more precious than I used to and am realising what things actually really matter. And there are certain sorts of relief that take a while but really do lessen the stress, like when you no longer think, 'Oh god, is that the care home?' every time the phone rings.

I don't think I will ever get over some of the shock/horror moments though. Makes me think I must have led a pretty sheltered life before mum got dementia - it opened my eyes in so many ways.
 

Platinum

Registered User
Nov 7, 2017
79
0
South east
I so empathise with the views on the very variable standard of care in dementia care homes. When it is said staff are dementia trained, what does that really mean? The constant fear of being moved on when dementia patients, (which is what they are, not residents) become unmanageable is a constant worry and is it one of the reasons why not all of us point out deficiencies? Do patients become more unmanageable because staff are inadequately trained?
 

jennifer1967

Registered User
Mar 15, 2020
4,407
0
Southampton
from a carers prospective, no. i have seen residents that stay in the care home for the rest of their lives. with care homes, a nurse doesnt have to be on staff. there are somethings that a carer cant do eg. injections, have oxygen dependent residents or drips. there are others. if they feel they cant keep them safe as they are escaping out the door which is a safeguarding issue or they are a threat to others. we are taught all many of distraction technique, withdrawing and going back later, what does and doesnt lead to reactions and managing challenging behaviour but if they have gone beyond that, they need more intensive caring. there are more staff in a specialist/ nursing home and nurses that can do more things medically. they have more equipment. its health and safety of staff and other residents. if it was just dementia, carehomes are hopefully well trained like i was but a lot of residents have more than one long term health condition and nurses are more qualified and able to carry out more on the spot medical needs
 

canary

Registered User
Feb 25, 2014
15,178
0
South coast
@Platinum - Mum was in a care home for three years until she passed away in the care home and tended by the staff there, so I agree with @jennifer1967 that if it is simply dementia they dont have to be moved.

Having said that, though, many care homes (even some of the ones that say that they specialise in dementia) only really want people with the early, easy stages of dementia and as soon as they reach a certain point they are asked to move. It is always prudent to ask the home what behaviour they would not be able to cope with before they move there.
 

Bikerbeth

Registered User
Feb 11, 2019
1,997
0
Bedford
So sorry to hear that your Mum has had another fall. Have you been able to visit her again? I have certainly found a visit in my Mum’s room beneficial in so many ways.
All the best for your doctorate interview too.
 

Palerider

Registered User
Aug 9, 2015
2,537
0
North West
Well a week has passed since I last posted. My head just suddenly fills with memories and flashbacks, not that this is bad, but they stir up emotions and then I wind up feeling sad, or angry or both some days. I agree @Grannie G, where once I didn't mind small talk or pointless conversation, now it annoys me to the point I just switch off. I love animals, but can't bear it when colleagues yap on about their dogs as if it was the only thing in the world that mattered etc etc. But I also know how they feel too, so I despair in silence and crack on with work. The now is complex, because each of us that lives in the now also has to contend with everyone else in the now -it gets kinda tricky some days.

I visited mum on Monday as I was on all week after that and she was, I was told the most engaging when I visited. The carers were telling me that mum mentions me all the time when I am not there and when I am she is somehow connected still, though words fail her these days. On Monday she had acquired a new skill, she has learned how to move her wheelchair with her feet, so now she wheely wanders rather than shuffle wanders :rolleyes:

And another thank you from the AS, I just wonder when will all this campaigning ever see a win-win, but most importantly it reminds our illustrious politicians we are here and we are not going anywhere soon.
 

Palerider

Registered User
Aug 9, 2015
2,537
0
North West
I don't think I will ever get over some of the shock/horror moments though. Makes me think I must have led a pretty sheltered life before mum got dementia - it opened my eyes in so many ways.
I think this is the experience of many people, and yet for those to walk this path
 

Palerider

Registered User
Aug 9, 2015
2,537
0
North West
Anyway I have 9 days left of which I am working mostly to prepare to defend my doctoral proprosal and I also have two very cold bottles of Frizzante in the fridge on a fine summers day -errr:eek:
 
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Jaded'n'faded

Registered User
Jan 23, 2019
1,485
0
High Peak
Anyway I have 9 days left of which I am working mostly to prepare to defend my doctoral proprosal and I also have two very cold bottles of Frizzante in the fridge on a fine summers day -errr:eek:
It's beautiful here too. Saturday is my photo-taking day (work stuff) but it makes my back ache and the sunshine is beckoning. Compost has just arrived so I could plant up some pots/tubs instead...And there's a bottle of rosé lurking in the fridge...

I know you deserve a day off (or several) - just trying to justify it for myself!
 

Palerider

Registered User
Aug 9, 2015
2,537
0
North West
Good luck!
I have very deeply read around this...and I think I have enough to defend .....I think the proposal will become a paper for publishing so watch out as it has some very ineteresting things to say about the state of dementia care and the status quo -thats all I can say
 

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