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sicut animam suam : 'it's just life'

Jaded'n'faded

Registered User
Jan 23, 2019
1,353
0
High Peak
Well I am glad I got to the shops early today as I got the right flowers for mum, rather than the left overs. Our local sold out pretty quickly on the flowers front, and they had a fair amount of stock at 9am.

I guess a large part of my drive for mother's day is the guilt I still carry around the care home thing as well as missing a true light in my life, my mum. Anyway I have perhaps gone over and beyond the usual Mother's Day goodies, but I know she will in her own way enjoy them including the wee bottle of rose wine ;).

On another matter I can't find the energy to sort out the house and feel trapped and overwhelmed by all the boxes and junk from when I moved, so today I have been looking for a 'house tidier' -simply because it would just be easier mentally for me to get someone in to sort out this mess, which currently is taking over my living space and I can't cope with it anymore. I can barely swing a cat round in the front room with all the stuff still unpacked :rolleyes:
Once you make room to swing a cat you'd better get one! :D
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
hi @Palerider
do you have a spare room?
when I last moved, and after clearing dad's house, I put all the boxes and stuff I couldn't face unpacking into the spare room ... that way I had all the boxes etc in one place but could sort out my living room and feel comfortable .. the spare room was a mess for a long time (okay, still is) but at least I can close the door on it and deal with everything bit by bit when I feel like it
not possible if you don't have the extra room ... or shed ... or attic space
Thanks @Shedrech -yes I do have a spare room but I just find it hard to move anything right now and I don't know why. I have moved some stuff upstairs but some of the stuff I honestly feel bad about ===as if I should just leave it be. Most of it is mums personal stuff that she wanted me to have, but I feel terrible knowing she is still here and now I have all of these boxes of what are sentimental things -I just don't want to have to do with anything anymore other than just leave them be but at the same time its driving me round the twist
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
Well I dropped off mums goodies at the care home and was sent a pic of her with them, she looks better than she has done for sometime, which surprises me, but this is how dementia is -up and down. Anyway good news, I will finally be able to visit my mum face to face on 24th March -its been a long time coming and I can't wait 😁
160411205_277873327042937_460924330752046290_n.jpg
 

Susan11

Registered User
Nov 18, 2018
3,194
0
What a lovely photo. Your Mum looks very well and pleased with her gifts. It's not long till your visit now .
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
I am fee;ling unusually optimistic today, perhaps because I know I can now get back on track with visiting my mum next week -face to face visit. It feels like a weight has been lifted.

But, the care home are not applying the guidelines in full, so as much as I am glad to be back in mums life, this is also going to be another fight and its not over yet. My expectation as mums main carer is theta I visit her in her room -not allowed. My purpose is to do my own checks that her only living space is in order. Her clothes, her bedding, and the feng shui (if that what it takes) of her room plus all the other little obscurities care staff won't notice but which matter.
 

Bikerbeth

Registered User
Feb 11, 2019
1,902
0
Bedford
So pleased that you will be able to see your Mum in person next week. It does seem it is going to be a fight all the way to be able to see our relatives properly.
Love the photo of your Mum
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
So pleased that you will be able to see your Mum in person next week. It does seem it is going to be a fight all the way to be able to see our relatives properly.
Love the photo of your Mum
Yes I think it is going to be a continued fight, but we are making progress ;)
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
This week I got a phone call from the CHC clinical commissioning group -my heart sank because they only ever call if there is a change a foot. Mum was granted CHC funding in June last year, or so I thought. She was actually granted the Covid-19 funding source which finishes on March 31st -I wasn't informed of this at all. So now we have to go back through the assessment process which is already turning into a fiasco.

I asked which nurse gave the care home assessment -yup an agency nurse. I asked if they would be visiting mum to asses her themselves -no they are not allowed. The assessor didn't even know that I am very up to date with mum and that i call frequently for updates on her well being -err really? So the two key parts of the assessment are already effectively useless. They have sent me a self assessment form which is basically an activities of daily living needs assessment, so now I am sat filling this in with my old nursy head on, mum ticks every box except breathing (just about) -here we go again :rolleyes:
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
Right so I have been racking my brains on what the broad and localised self assessment sheet is asking, so I looked at the CHC document assessment sheet I think it is really important people read this guidance and really assess from their perspective what the needs are. The two forms are very different, the one sent by the local CCG does not outline what is meant by each section on ADL's whereas the CHC guidance does. Further needs are assessed and graded C, B or A and you have to assess essentally where the person you are assessing falls in the criteria. I have now rejected the local generic form because it is not specific enough and will be sending back the CHC assessment form. I have posted the information below -anyone who is struggling with CHC please don;t be afraid to ask on ADL's, but be mindful your assessement must be objective and adress the needs outlined. Overall you must hit two A's or four B's and an A -you'll see what I mean if you read pages 5-19
 

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Bikerbeth

Registered User
Feb 11, 2019
1,902
0
Bedford
Thank you for sharing above information.
Could I kindly ask (and perhaps I would know more when Mum is closer to those stages) what does ADL stand for.
What worries me is that it seems hard for you to complete with your knowledge for others it seems like a nightmare.
Thank you
 

Fitzalan

Registered User
Apr 25, 2020
27
0
A quick google search came up with activities of daily living - fundamental skills that are necessary to care for yourself such as bathing, dressing, eating etc
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
Thank you for sharing above information.
Could I kindly ask (and perhaps I would know more when Mum is closer to those stages) what does ADL stand for.
What worries me is that it seems hard for you to complete with your knowledge for others it seems like a nightmare.
Thank you

I think its very dependent on who is making the assessment as to whether CHC funding is granted, which is about how needs are interpreted along with accurate information. So for example, some may see incontinence as a normal part of dementia progression, but its not a normal ADL -so there is a need to address. Ineffective cognition is also normalised, when it isn't a normal ADL and so on -but how different assessors interpret these affects the assessment.

For example, mum has significant hip arthritis which affects her mobility, she has knee replacement and grossly swollen painful legs, she has paroxysmal AF (untreated) which can lead to bouts of breathlessness. She is on continuos pain relief via a skin patch and needs to be monitored reguarly for pain and effect. She is unable to express her needs or be orientated to time and place. She has disrupted sleep and requires medication. She has long periods of immobility putting her skin at risk. She also has high periods of anxiety and wanders frequently especially at night. She has low food intake and increased nutritional needs including milk shakes as she does not take normal food and her condition has led to her frailty and cachexia -thus increasing her overall risks and care needs.

This is just a brief example, mums problems are more complex as are many who have significant care needs. From this you can see what her needs are, rather than focussing on her diagnosis of Alzheimer's and remove the temptation to normalise it.
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
On a day off, the neighbour is having work done and the noise is as usual distracting.

Got a phone call from mums practice nurse to inform me they have given mum the wrong second vaccine :rolleyes:. The nurse sounded very stressed but no point in getting angry, the mistake has been made and to be fair she was trying to ensure mum was covered and made the mistake in the process - I think I calmed her down and said she needed to use it as a learning exercise. We all make mistakes, despite good intentions. Since the rollout of the AstraZeneca/Oxford vaccine (which is the wrong second dose mum had) in the EU there have now been 18 cases of cerebral sinus venous thrombosis (CVT) reported to the European Medicines Agency among the 20 million recipients of the vaccine (or roughly five cases per annum per million). Hopefully mum will be ok.

On a more grating note, the care home have started giving out my name incorrectly and I have now had three phone calls from agencies the care home have given the wrong name to which is potentially dangerous. I have today put my foot down with yet another agency nurse, who herself called me Mr Braithwaite -MY NAME IS NOT MR BRAITHWAITE :mad: -and I am fed up of getting important phone calls about mum asking me for Mr Braithwaite, it all gets very confusing for the person on the end of the phone.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,353
0
High Peak
Oh, Mr Braithwaite - I feel your pain! My name (as you know) is J but I keep getting texts from the local chemist addressed to Laura :(

I've been in and told them, showed them the texts. They checked their records and said the only name associated with that number is mine (and they send my alerts correctly, addressed to J so it's not a simple name error.) They don't know who Laura is but I still get her texts to say her prescription is ready. And they are frequent so she must be on a lot of meds...! So annoying as unless the chemist can find the issue and rectify it, I will get her texts forever.

I'm thinking your mum probably has more chance of winning the lottery than getting CVT so maybe you should buy her a ticket. On second thoughts, if she won it would affect who pays for her care! Better get one for yourself and keep the winnings (should you be so lucky!)
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
Well I am just back after my first face to face visit with mum after a year. She had tears rolling down her face when she first came in, but we soon remedied that as I had deliberately taken her fave a costa almond and raspberry bake (well two actually) and it helped to wipe away the tears. She had not forgotten the cake at all and enjoyed every crumb, later eating the second one. I would have taken her a coffee too,but the lateral flow test takes thirty mins by which time it would have been stone cold. She is not the same person as she was a year ago and alot of her spirit has diminished with this god forsaken disease. She is very very thin and her legs dreadfully swollen and blistered -the furosemide isn't working at all. Despite this she seemed ok in herself when I asked how she was, but the conversation was not as before -broken and jumbled and mum couldn't find the right words for most of the exchange we had. She was quite animated with her cake and chatty and then very quickly tired and dosed off. I love her so much and just wish she hadn't been dealth this card in her life 😢
20210324_134758.jpg
 

Sarasa

Volunteer Host
Apr 13, 2018
2,797
0
So so glad you got to see your mum @Palerider, taking in the cake was a genius idea and she looks like she is really enjoying it.
I hope this is the start of being able to visit on a regular basis.