Our magic bitter sweet moments 🥰🥰🥰

[Jools1402]

Animals are so grounding and comforting aren't they. My Mum's home has also had a donkey and 2 llamas in their lounge recently (god help the carpets if there's an accident). They also had a take your pets in day yesterday. Mum has said she wants them to give her a job in the animal department there (no animal "department" and Mum can hardly walk) - bless her.

 

[sdmhred]

I think the alpaca that came in recently did poop in the lounge 🤣🤣 but nothing the carers haven’t dealt with before I guess 🙈🙈

The baby goat was in a nappy tho!!!

 

[Chizz]

Who are you calling a goat?

 

[sdmhred]

Gosh I’ve let things slip posting wise 🙈🙈

It was the week of meetings:

1. care home to try and sort out mum’s meds - they were trying but GP says no so goodness knows what to do there 🤷‍♀️🤷‍♀️🤷‍♀️
2. work - need to go into the office more - expected that - can sort that one.

Im pleased to have survived them and have escaped relatively unscathed.

I keep walking, mum keeps smiling and the backlog of jobs keeps growing …..

 

[jennifer1967]

Gosh I’ve let things slip posting wise 🙈🙈

It was the week of meetings:

1. care home to try and sort out mum’s meds - they were trying but GP says no so goodness knows what to do there 🤷‍♀️🤷‍♀️🤷‍♀️
2. work - need to go into the office more - expected that - can sort that one.

Im pleased to have survived them and have escaped relatively unscathed.

I keep walking, mum keeps smiling and the backlog of jobs keeps growing …..

can only do one at a time. enjoy your walks

 

[Chizz]

yes @sdmhred one needs the wind blowing through your ears to clear the head of all the other stuff.
With all the the things on the "to do" list (that keep growing), life at present seems like running just to stand still.

 

[Eddcorner]

Gosh I’ve let things slip posting wise 🙈🙈

It was the week of meetings:

1. care home to try and sort out mum’s meds - they were trying but GP says no so goodness knows what to do there 🤷‍♀️🤷‍♀️🤷‍♀️
2. work - need to go into the office more - expected that - can sort that one.

Im pleased to have survived them and have escaped relatively unscathed.

I keep walking, mum keeps smiling and the backlog of jobs keeps growing …..

Understand that one! Post as and when @sdmhred you've got to prioritise yourself and that endless list which keeps growing - if I manage to check one or two things off mine I consider that a success, too easy these days to get bogged down.

GP still throwing a spanner in the works eh? Why they don't use your personal experience of supporting mum down the years confounds me no end 🤔 but I'll try not to bang on about it, know that this is tough transition for you. Yep we knew the work one was coming, you'll get there of that I have no doubt ❤ navigating so many obstacles, the best of of us would struggle at times. You only need one thing to throw you off and molehills suddenly become a mountainous landscape; we've not had the easiest couple of weeks ourselves but getting better... here anyways if you need to vent

Get the wind in your hair my friend!

 

[sdmhred]

Thanks all - I’ve kept walking and feeling slightly calmer as a result 🏃‍♀️🏃‍♀️ I shall Definately be a Lady who Paces if the d catches up with me! But I will be grumpy if they don’t let me outside….

Youre quite right @Chizz …it’s running to stand still…or even go a little bit backwards! How can one person create so much admin!

Today OT came for mum to be fitted for new wheelchair but sales chap was late and brought the wrong size 😬😬 He also said you can’t get them in x large which a quick google shows is incorrect! Im afraid that doesn’t go down well in my book. So my precious afternoon wasted and we’re no further forward….

As for the GP I spoke to the National Endocrine helpline who at least validated me that I’m correct ….If mum was a work ‘client’ I would be summoning them all to a professionals meeting. I’m quite tempted to do that …but then they wouldn’t attend!

Anyway onwards ….

 

[canary]

Can you ask the endocrinologist to write a letter confirming what you know is true?
I have found doctors will accept things from other doctors and a letter can be scanned into records for further reference

 

[sdmhred]

Yes @canary that’s been my approach - I sent the endo consultant a load of questions which he answered and the care home are asking the GP unsuccessfully to write up….I have an opa with endo in May so will have to raise the issue again then.

The nurse helpline told me mum should have an endocrinology led care plan which should determine her care …..he is going to send me a template (by snail mail!). The main issue is that most folk self manage meds but mum can’t….I have asked and the cohort of patients who lack capacity with her condition is so few that no work has been done on it 😱😱😱

Since I last posted I have been granted custody of ‘The Babies’😱😱😱 This is a big privilege and I’m a little worrIed I may not do a good enough job 🤣🤣🤣 It’s v sad but there is a new resident who used to work in childrens safeguarding and they paces up and down looking after the babies 😢😢😢 We get on very well …..but i don’t neEd to do their personal care ….

 

[canary]

It is so difficult when someone has an additional complex medical condition that normally they would be able to manage, but are now cognitively unable to.

OH used to be able to manage his epilepsy himself and could even tell me when he was going to have a seizure. Now he doesn't even recognise when he has had one.

PS - I love the babies. You are indeed very privileged!

 

[jfhn05020]

I am inspired by those recording their stories over long term threads. I don’t want to record the horrid side so much but remember those bitter sweet dementia moments that make me smile

Today I have just watched my lovely mum carefully dab her dry pad with the loo paper rather than wipe herself. it was so gentle and carefully done it could only make me smile 🥰🥰

My question though is how do I not lose this thread but be able to come back to it when needed?? I sometimes lose things I want to follow here …
There's a really great learning service for where they write excellent texts.

What a warm memory... Thank you for acknowledging it.

 

[Knitandpurl]

It is so difficult when someone has an additional complex medical condition that normally they would be able to manage, but are now cognitively unable to.

OH used to be able to manage his epilepsy himself and could even tell me when he was going to have a seizure. Now he doesn't even recognise when he has had one.

PS - I love the babies. You are indeed very privileged!

They look like they could do with some clothes - a bit ‘nippy’ out there.

 

[sdmhred]

I may have to raise a safeguarding @Knitandpurl

These babies have a buggy, a crib, a highchair, were being fed supper tonight but HAVE NO CLOTHES 😱😱🙈🙈🤣🤣

 

[jennifer1967]

I may have to raise a safeguarding @Knitandpurl

These babies have a buggy, a crib, a highchair, were being fed supper tonight but HAVE NO CLOTHES 😱😱🙈🙈🤣🤣

they need some lose clothing so it can be taken on and off maybe with velcro rather than buttons.

 

[Knitandpurl]

Maybe clothes making could be suggested as an Activity? Is there a local knit and natter group that could help?

 

[sdmhred]

I’m afraid I’ve neglected the babies the last few days as poor mum’s adrenal issues have reared their head again. She has had successively increasing shaking, anxiety and tiredness. Today appears resolved on doubling her steroids….but they plan to make a steep back drop down again ….

I feel slightly vindicated that the deputy manager told me I was obsessed with her steroids when last time I said shaking was because she was low ….mmmm…but as to where we go from here …🤷‍♀️🤷‍♀️

I have to say tho nurses on the floor have been good and very compassionate..…

The siblings were worried so have been down which has at least meant once I had been reassured that things were under some sort of control I’ve been able to get out for walking and today popped by one of my best friends which was good.

 

[Eddcorner]

I’m afraid I’ve neglected the babies the last few days as poor mum’s adrenal issues have reared their head again. She has had successively increasing shaking, anxiety and tiredness. Today appears resolved on doubling her steroids….but they plan to make a steep back drop down again ….

I feel slightly vindicated that the deputy manager told me I was obsessed with her steroids when last time I said shaking was because she was low ….mmmm…but as to where we go from here …🤷‍♀️🤷‍♀️

I have to say tho nurses on the floor have been good and very compassionate..…

The siblings were worried so have been down which has at least meant once I had been reassured that things were under some sort of control I’ve been able to get out for walking and today popped by one of my best friends which was good.

I'm still aghast at the language and approach used by the deputy manager in communicating with yourself regarding your mum... pleased however that in this instance her needs have been addressed. It does concern me from a clinical perspective that they plan to drop the steroids steeply back down again as it could lead to another 'event'. One can only hope based on the evidence and input from her endo consultant (any further progress?) that common sense prevails - entertaining the chance of future trauma due to poor decision making on their part must be taking quite a toll on not only your mum but you too

Pleased that you were able to take a time out and meet up with your friend, in our thoughts as always @sdmhred ❤

 

[sdmhred]

Sadly Edd the endo’s have weighed in and made things worse. Endo Textbook says u can drop that steeply so it will be done again 😢😢 But bodies aren’t textbooks!!! Especially when they are 84 with a frazzled brain and not able to articulate early symptoms…. I think the nurses on the floor are picking up on the subtleties……

One thing they did say was a reminder that she is on steroids for auto immune disease so that mustn’t be forgotten…which it has.

I have no choice but to let it happen again…..but I will be on it like a hawk…..

 

[Eddcorner]

Sadly Edd the endo’s have weighed in and made things worse. Endo Textbook says u can drop that steeply so it will be done again 😢😢 But bodies aren’t textbooks!!! Especially when they are 84 with a frazzled brain and not able to articulate early symptoms…. I think the nurses on the floor are picking up on the subtleties……

One thing they did say was a reminder that she is on steroids for auto immune disease so that mustn’t be forgotten…which it has.

I have no choice but to let it happen again…..but I will be on it like a hawk…..

Oh my I'd definitely get myself barred 😡 methinks. We're so fortunate mother's still at home but not everyone has that option; based on my own personal/clinical experiences I just wouldn't be able to do it (plus mum got me to promise not to anyways haha). I am sure there are lots of great care homes out there and you've told so many wonderful stories about your mum's new place but why management continues to dismiss the very valid concerns you've raised is beyond me. I share your frustration my friend and I know you won't suffer any fools.