Our magic bitter sweet moments 🥰🥰🥰

Knitandpurl

Registered User
Aug 9, 2021
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Lincolnshire
I love your insights @sdmhred :) so many different characters! Lucky you had staff on hand to discourage your very 'helpful' lady haha... I sometimes joke with mum that it would be nice if somebody got me ready for bed 🛌 now I just roam around in my shorts and t-shirt in the evenings so the act of tumbling in at nighttime is so much easier ;)
Gosh you must be hot blooded, I’ve usually got at least 4 layers on….
 

sdmhred

Registered User
Jan 26, 2022
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Surrey
Almost a week since I posted 😱😱 not sure quite what happened there! Am really pleased that mum is finally in a routine of getting up every other day….it seems to be keeping her leg odema under control as well as plenty of opportunity to get out and about. It was a bit breezy out today so I pulled her shawl over her head and realised she looked like a refugee 🙈🙈 no wonder I was getting strange looks as I pushed her down the road!

Ive had to pick up her CHC stuff again and have had some promising conversations regarding her eligibility - need to try and prep for the MDT but will go to appeal with advocate if needed- and let them do the hard work!

Other than our ‘hot chocolate’ pushes we ve been continuing mum’s travels - fascinated to read that they boarded the VW Beetle on the SS Rajula and travelled from Penang to Madras. She didn’t diary throughout the journey 😢😢 but her descriptions of 1966 Madras are wonderful!

In other news the friends I’ve kept in touch with seem all to be going thru tough times 🥲🥲 a mental health sectioning, a teenager with v bad eating disorder and redundancy 😢😢 I have energy for messaging but not too much chatting!

on a brighter note baby lambs are apparently visiting tomorrow 🐑🐑 and the Man who Paces told me how lovely I was looking 🥰🥰
 

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Eddcorner

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Aug 27, 2020
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Almost a week since I posted 😱😱 not sure quite what happened there! Am really pleased that mum is finally in a routine of getting up every other day….it seems to be keeping her leg odema under control as well as plenty of opportunity to get out and about. It was a bit breezy out today so I pulled her shawl over her head and realised she looked like a refugee 🙈🙈 no wonder I was getting strange looks as I pushed her down the road!

Ive had to pick up her CHC stuff again and have had some promising conversations regarding her eligibility - need to try and prep for the MDT but will go to appeal with advocate if needed- and let them do the hard work!

Other than our ‘hot chocolate’ pushes we ve been continuing mum’s travels - fascinated to read that they boarded the VW Beetle on the SS Rajula and travelled from Penang to Madras. She didn’t diary throughout the journey 😢😢 but her descriptions of 1966 Madras are wonderful!

In other news the friends I’ve kept in touch with seem all to be going thru tough times 🥲🥲 a mental health sectioning, a teenager with v bad eating disorder and redundancy 😢😢 I have energy for messaging but not too much chatting!

on a brighter note baby lambs are apparently visiting tomorrow 🐑🐑 and the Man who Paces told me how lovely I was looking 🥰🥰
Yep I think I've lost several days somewhere but not too bothered, sort of used to it now ;) Tempus fugit ⌛ after all!!

So happy you're getting out and about - with mum getting into a routine of sorts... oh & don't worry about the shawl thing as my 'boss' has often looked like E.T. when we've been fortunate enough to venture forth - warm and comfortable trumps all!

I see your list of tasks is starting to eclipse my own! Good luck although I'm sure you'll not need it lass, every confidence ;)

Addendum:

Just caught the backend of your post, slightly rushed before ;) compliments are worth their weight in gold! This last decade or so I've not looked quite as sharp as I used to and mum reinforces this with not so subtle hints that I'm a scruff of sorts haha, perhaps one will be tossed my way in the near future too! Not that I'm vain or anything 😝
 
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sdmhred

Registered User
Jan 26, 2022
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Surrey
Not wanted to post this week - it’s been a real toughie! Despite protestations from the GP there has been a tummy bug going round thr home. Sadly the first person to get it was the lovely man I named the ‘Bed Napper’. It was too much for his body and he died suddenly. The place isn’t the same without him 😢😢
Mum and I have been on semi lockdown - she hasnt been ill ill but has had a loose tummy and after quite a bit of stress managed to get her essential meds increased for her rare disease. Any sickness requires them doubled but GPs are not that clued up which has led to many a problem the last 2 years.
Anyway I shall see him again tomorrow 😬😬
Trying to stay sane with some walking and a little looking at mum’s diaries ….but it’s tough 😢😢
My new motto I think I may have said before ‘late stage dementia is s**t but grab and capture any unexpected moments of joy that may come ur way …….
Ive enjoyed reading about mum in Kathmandu (worth a visit in the future?) and yesterday when I told the Man who Paces he couldn’t come in for a chat but we would have coffee next week - he gave a big smile and said ‘look forward to it‘ 🥰🥰
 

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sdmhred

Registered User
Jan 26, 2022
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Surrey
Well first good day in a long run 😊😊 I had no professionals to argue with - and enjoyed some rest.
I woke refreshed and cheekily read a little in bed! I’m reading Ben Fogle travelling and fuelling my desire to travel ….
Rather than get on my hiking boots I sat in mum’s room this afternoon and painted whilst she slept. Good just to sit for a while. Once she was hoisted and commoded we took off to Tesco and our now regular appt with the Costa machine. The sun came out as we left……we felt like naughty teenagers bunking school 🤣🤣 as we sat outside a while before heading back!

Im plodding on with preparation for CHC next week. I’m more relaxed about it now I’ve had some specialist advice. I have every confidence we’ll fail but that it will be worthwhile appealing.

Mum’s on double steroids due to the tummy bug….it so sharpens her functioning. She ate a yoghurt - pot in one hand and spoon in another ….someone really needs to do a study on prednisolone in late stage dementia!
 

sdmhred

Registered User
Jan 26, 2022
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Surrey
Am banking another good day! Weather lovely so took myself off for a hike whilst mum had her afternoon snooze…Felt good that I was able to help out with mum, enjoy her company and take myself off knowing she was in good hands! How it should be…

GP is starting to reduce her steroids tomorrow- slightly more sharply than I would prefer….they will be taking obs so can be aware of risk of low BP - it’s difficult to know which battles to take up…

Rather sad to think last Easter Day she was walking, we took a long drive to the New Forest and didn’t need a ‘team’ around us 😢😢 oh well - we will make the most of where we are now…
 

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Eddcorner

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Aug 27, 2020
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Am banking another good day! Weather lovely so took myself off for a hike whilst mum had her afternoon snooze…Felt good that I was able to help out with mum, enjoy her company and take myself off knowing she was in good hands! How it should be…

GP is starting to reduce her steroids tomorrow- slightly more sharply than I would prefer….they will be taking obs so can be aware of risk of low BP - it’s difficult to know which battles to take up…

Rather sad to think last Easter Day she was walking, we took a long drive to the New Forest and didn’t need a ‘team’ around us 😢😢 oh well - we will make the most of where we are now…
A hike? So very jealous of you @sdmhred but in a good way :)

Difficult to navigate these 'battles' my friend, I'm pretty rigid in my own ideas which are very much led by mum's directions immediately post diagnosis and at a reduced level today. She suffered no fools and would expect me to do the same, can ruffle some feathers but confident in my actions based on same. Much more complex in a care home setting so I don't envy your position... I'd probably get barred haha ;)

And again difficult on reflecting back, I was doing just the same last week or so... the brain fog sort of creeps up on our loved one's functionality :( Memories can be golden but also a heavy burden at times ❤
 

sdmhred

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Jan 26, 2022
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Surrey
Oh @Eddcorner its very tough managing these things!

Today I have had argy bargy over a number of things. Mum had a period of shaking which was probably attributable to her steroid drop…..her BP has been all over the place. But I think they see me as a bit of a hypochondriac…..

Tomorrow we have CHC - the less said the better….
 

maggie6445

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Dec 29, 2023
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Oh @Eddcorner its very tough managing these things!

Today I have had argy bargy over a number of things. Mum had a period of shaking which was probably attributable to her steroid drop…..her BP has been all over the place. But I think they see me as a bit of a hypochondriac…..

Tomorrow we have CHC - the less said the better….
All the best for tomorrow 😘
 

jennifer1967

Registered User
Mar 15, 2020
24,849
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Southampton
Oh @Eddcorner its very tough managing these things!

Today I have had argy bargy over a number of things. Mum had a period of shaking which was probably attributable to her steroid drop…..her BP has been all over the place. But I think they see me as a bit of a hypochondriac…..

Tomorrow we have CHC - the less said the better….
good luck for tomorrow @sdmhred
 

Eddcorner

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Aug 27, 2020
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Oh @Eddcorner its very tough managing these things!

Today I have had argy bargy over a number of things. Mum had a period of shaking which was probably attributable to her steroid drop…..her BP has been all over the place. But I think they see me as a bit of a hypochondriac…..

Tomorrow we have CHC - the less said the better….
One can only do one's best @sdmhred ❤ Had many 'animated' discussions with clinical team on mum's last hospital admission, eventually this led to a more heated debate where I had to fight to get her discharged home to provide a more quality based/needs led approach. So you keep doing what you're doing and don't feel intimidated, I'm sure that you are much more diplomatic than me anyways!! Totally confident in you ;)
 

sdmhred

Registered User
Jan 26, 2022
2,458
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Surrey
Thanks 👍👍

Well today I have had some success and spoke to the GP who agreed not to drop her steroids tomorrow as planned. She had another shaking episode at exactly the same time….My theory is that her cortisol is running low 8hr after dose and the effort required for eating tips it over…..

CHC is done - a stitch up for FNC as expected…but Decision has already been made that we will appeal with advocacy. I’m just glad they weren’t rude as that was my main concern for my sanity.

Back to work for me tomorrow ……will feel like a holiday I think 🤣🤣
 

jennifer1967

Registered User
Mar 15, 2020
24,849
0
Southampton
Thanks 👍👍

Well today I have had some success and spoke to the GP who agreed not to drop her steroids tomorrow as planned. She had another shaking episode at exactly the same time….My theory is that her cortisol is running low 8hr after dose and the effort required for eating tips it over…..

CHC is done - a stitch up for FNC as expected…but Decision has already been made that we will appeal with advocacy. I’m just glad they weren’t rude as that was my main concern for my sanity.

Back to work for me tomorrow ……will feel like a holiday I think 🤣🤣
well done for getting through it and the doctor. hope appeal is successful. i dont think doctors really understand about the reduction of steroids. when i husband has them, they used to taper them off but dont now.
 

Eddcorner

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Aug 27, 2020
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Thanks 👍👍

Well today I have had some success and spoke to the GP who agreed not to drop her steroids tomorrow as planned. She had another shaking episode at exactly the same time….My theory is that her cortisol is running low 8hr after dose and the effort required for eating tips it over…..

CHC is done - a stitch up for FNC as expected…but Decision has already been made that we will appeal with advocacy. I’m just glad they weren’t rude as that was my main concern for my sanity.

Back to work for me tomorrow ……will feel like a holiday I think 🤣🤣
Good news and bad news then, fingers crossed 🤞 for the appeal; hopefully in regards to your mum they might start listening a bit better now, if anyone knows her best it's you @sdmhred!
 

sdmhred

Registered User
Jan 26, 2022
2,458
0
Surrey
Thanks all - the steroids are so complicated and I think perhaps only one of the younger nurses really gets it!

Its scary as if I didnt keep such a close eye on it mum would have become unwell going on past history. The last 2 weeks it has been me on the ball that has ensured her dosage is correct….So much for me gadding off now mum is being looked after! In a way I am glad she has had the shaking episodes as at least that is something for them to see!

ho hum!
 

Eddcorner

Registered User
Aug 27, 2020
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Thanks all - the steroids are so complicated and I think perhaps only one of the younger nurses really gets it!

Its scary as if I didnt keep such a close eye on it mum would have become unwell going on past history. The last 2 weeks it has been me on the ball that has ensured her dosage is correct….So much for me gadding off now mum is being looked after! In a way I am glad she has had the shaking episodes as at least that is something for them to see!

ho hum!
Shouldn't have to reach that point really, shame they couldn't take what you say based on past experiences at face value...

Ho hum is right, deep breaths now! Saying that as I've mentioned in previous remarks I probs would have exploded, adrenaline starts pumping where mum's concerned. You're striking a diplomatic balance which I'd fail miserably at!! 🤪
 

sdmhred

Registered User
Jan 26, 2022
2,458
0
Surrey
You would have lost it today @Eddcorner!

The deputy manager who clearly has not understood mum’s condition tells me to back off from the steroid issue and that I am overthinking 😡😡

So two shaking episodes at the same time of the day are apparently just due to ‘dementia‘ when each time they have happened has been day 2 of a taper at 2pm- I don’t think dementia is so organised!

The GP then trotted in - he is more conciliatory and will seek endo advice …..but I did tell them in no uncertain terms that 5 times mum fainted…..I said i query adrenal insufficiency and I was told ‘ general decline’…’being in your 80s’…..’old ladies just faint’…….well who was right there? ..and what was happening fainting at the same time of day when the body needs cortisol and it can’t produce it

😡😡😡😡..and who told them there was a tummy bug going round 72 hours before they acknowledged it!

Thankfully the need on coming down is more about remaining comfortable whereas on going up for sickness it is lifesaving. but again as carers we are not listened to…..whereas when I speak as a professional everyone appreciates my experience.

😡😡😡😡 rant over!
 

Eddcorner

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Aug 27, 2020
1,714
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You would have lost it today @Eddcorner!

The deputy manager who clearly has not understood mum’s condition tells me to back off from the steroid issue and that I am overthinking 😡😡

So two shaking episodes at the same time of the day are apparently just due to ‘dementia‘ when each time they have happened has been day 2 of a taper at 2pm- I don’t think dementia is so organised!

The GP then trotted in - he is more conciliatory and will seek endo advice …..but I did tell them in no uncertain terms that 5 times mum fainted…..I said i query adrenal insufficiency and I was told ‘ general decline’…’being in your 80s’…..’old ladies just faint’…….well who was right there? ..and what was happening fainting at the same time of day when the body needs cortisol and it can’t produce it

😡😡😡😡..and who told them there was a tummy bug going round 72 hours before they acknowledged it!

Thankfully the need on coming down is more about remaining comfortable whereas on going up for sickness it is lifesaving. but again as carers we are not listened to…..whereas when I speak as a professional everyone appreciates my experience.

😡😡😡😡 rant over!
What a load of codswallop 😡😡😡😡 There are a myriad of reasons... 80 years+ prone to fainting eh? I've never been so up on older persons' care and I hung up my clinician's boots in 2008!! So not right to dismiss you in such an offhand manner, 'deputy manager' sounds like an absolute novice.

If that person was in my employ or part of my team they would be disciplined, empathy definitely not a prerequisite here methinks. Your approach is evidence-led... ooohhh I would have exploded alright! Hope things right themselves soon and the GP is not just paying you lip service, actions speak louder than words in my book.

My heart goes out to you both @sdmhred.