Our magic bitter sweet moments 🥰🥰🥰

[sdmhred]

A couple of poignant moments today

We sent Christmas cards to all of mum’s address book this year. I had a letter today from a son - informing me that his mum, my mum’s university friend, had died. He had kindly sent an order of service from her funeral and a lovely letter. It made me sad - this friend mum had never mentioned until her dementia…..more latterly she’s often ‘been up to London‘ to meet her! So obviously a good friend in the past. Made me sad - perhaps touching anticipatory grief.

Then tonight my sister had been with mum all afternoon so she was super tired. I helped with her personal care. My choice - I like to. Mum hates the rolling but being tired found it much worse. I help by holding her hands - she was so frightened after that she wouldn’t let go for at least 5 minutes and needed me just to hold her until she had calmed 😢😢 At times the overgrown toddler is now an overgrown baby 😢😢 I had to hold back the tears……But mum is so mum that after the trauma she smiles and says thankyou to the carers - and it’s not a forced smile - it’s genuine 🥰🥰

I’ve been reading the thread of the Alz adverts - I don’t like them myself…..but capture these for the wider public - my we have to dig deep!

 

[Chizz]

Yes @sdmhred my OH always get agitated with the carers, she really doesn't like the rolling, becomes v vocal, calling them horrible, etc (horrible is really really bad in my OH's vocabulary), but after also always smiles at them and says thank you several times.

And again, my OH can't really take in the death of a friend from long ago, or of an acquaintance - can't recall the person clearly enough. So when this happened recently I didn't mention it.

 

[sdmhred]

I’m glad I’m not the only one whose loved one complains about the rolling - I feel so bad for the carers 🙈🙈

Anyway it feels like quite a lot has happened here. I had a night sleeping at my own flat - first time in 2 years and a month!! I upped and left and everything left just like a museum …even the toothbrush and paste was there waiting for me 🙈🙈 I was pleased hot water and heating working after their ‘sleep’. Flat is in a right state as i had worked throughout covid, then dad was increasingly frail and died, and then mum needed me….housework and decluttering never got to the top of the list that will be my next major thing to do….no excuses this time we have mum’s house to clear and I will want some of the nicer and sentimental things!

mum has been allowed off her bed rest but is limited to her hours up to manage her bad legs. She’s loved being able to go out for a quick push the past few days…..we were back in business for our outings 😀😀 apparently she was very unhappy going back to bed at tea time 😢😢😢 she kept reminding the carers she was an adult and had choices …..we’ll have to monitor it a little I think …..may look into hiring a mobile recliner pressure chair if it’s too distressing for her…..

loving the cold but sunny weather…..just a shame I have no time for proper hiking….boo

 

[Chizz]

Hi @sdmhred .

My OH is no longer weight bearing. We have a recliner pressure chair and my OH spends about half the day in it. It was provided to us by the Occupational Therapist of the LA health dept, after somewhat of an argument, when my OH came out of hospital, so she didn't have to spend 24hrs in bed.

Can't you argue to get one provided?

 

[sdmhred]

Thanks @Chizz I never knew such things existed until the last few weeks.

Others May know better, but from what I have picked up I have a feeling the LA won’t provide if ur are in a care home as it is the homes’ responsibility to provide 🤷‍♀️🤷‍♀️🤷‍♀️I’m guessing the home won’t want to pay out for expensive kit - but if I’m wrong and I can approach the LA then I am more than willing to do battle with them…..I just want to keep sweet with the home as it’s good ….I’m scared she will be asked to move again especially if she gets granted CHC 😬😬😬

They may try getting her up later tomorrow- ironically she was perfectly happy with complete bed rest but bless her enjoyed being up…and who wouldn’t!!!

 

[nitram]

I think you are going to have to do battle with the LA
Have you consider rental or used?

 

[sdmhred]

I’ve looked into rental and would happily go down that route but it is expensive so would want to make sure it would get sufficient use…

Ive just checked the LA website which is helpfully clear. Care homes should provide standard equipment themselves ….but for complex or bespoke items an OT and LA referral can be made….and it will be provided if it is in a CHC care plan. Doing all this could so easily take over ur whole life as many of us know.

Ive stood down from my current battle with Thames Water…..but I haven’t forgotten and will write the CEO a letter …but I need to close mum’s account as her tenancy comes to an end next week.

 

[sdmhred]

I am secretly quite pleased though that mum stood up for her rights not to go back to bed 🤣🤣🤣 she worked in learning disabilities and I remember a lot of her work was helping her clients to know they did have choices …..they had all lived in long stay hospital….the nurse told me she kept saying ‘ I am an adult and I have choices’ 🥰🥰🥰

 

[Chizz]

It's really good that your mum still knows that !

(That's more words in a proper sentence than my OH can usually manage!)

 

[Neveradullday!]

I am secretly quite pleased though that mum stood up for her rights not to go back to bed 🤣🤣🤣 she worked in learning disabilities and I remember a lot of her work was helping her clients to know they did have choices …..they had all lived in long stay hospital….the nurse told me she kept saying ‘ I am an adult and I have choices’ 🥰🥰🥰

A lot of people seem to believe a PWd has disintegrated, somehow lost their self. This is an example that says to me the person is still very much there. They obviously can't function anywhere close to what they used to, of course.
Thanks for sharing, @sdmhred

 

[Eddcorner]

A couple of poignant moments today

We sent Christmas cards to all of mum’s address book this year. I had a letter today from a son - informing me that his mum, my mum’s university friend, had died. He had kindly sent an order of service from her funeral and a lovely letter. It made me sad - this friend mum had never mentioned until her dementia…..more latterly she’s often ‘been up to London‘ to meet her! So obviously a good friend in the past. Made me sad - perhaps touching anticipatory grief.

Then tonight my sister had been with mum all afternoon so she was super tired. I helped with her personal care. My choice - I like to. Mum hates the rolling but being tired found it much worse. I help by holding her hands - she was so frightened after that she wouldn’t let go for at least 5 minutes and needed me just to hold her until she had calmed 😢😢 At times the overgrown toddler is now an overgrown baby 😢😢 I had to hold back the tears……But mum is so mum that after the trauma she smiles and says thankyou to the carers - and it’s not a forced smile - it’s genuine 🥰🥰

I’ve been reading the thread of the Alz adverts - I don’t like them myself…..but capture these for the wider public - my we have to dig deep!

She loves you very much and those smiles your mum has for yourself and others in supporting her are a priceless reminder of the person she is. A heart breaking situation for all concerned, you're both so very brave ❤

(Not sure if this is what you're referring to) I have to be very honest in regards to seeing the many TV adverts for the brain fog thingy, never liked them for a variety of reasons which I won't mention for fear of causing offence to others. Apologies. Ultimately they just don't sit right with me.

 

[Eare]

For the last couple of years I had no idea if mum still remembered who I am. Yesterday she called me 'daughter'. I cried happy tears especially as she can't communicate normally. It was just one word.

 

[Eddcorner]

For the last couple of years I had no idea if mum still remembered who I am. Yesterday she called me 'daughter'. I cried happy tears especially as she can't communicate normally. It was just one word.

That's wonderful @Eare 💚 When my mum occasionally comes out with a word or one-liner in reference to myself it always moves me too, it reinvigorates me to try even harder as she knows it means the world to me saying my name or son

 

[sdmhred]

Quite an up and down week for me - mum has had some sort of upset tummy and we’re yet to work out the cause……it may just be one of those thIngs but has implications for the absorption of her critical cortisol meds so it all gets a bit complex…….

Anyway lots else has happened so I shall give some updates as and when I have the inspiration…

I arrived one day this week to see these signs - and 2 new residents 🤣🤣😱😱 They used to live on the top floor with the most able residents ……but as we all know what to persons with d find themselves doing - indeed the inevitable and the vet declared the resident cats overweight 🙈🙈

Second floor has quite physically able but aggressive residents….

So us on the ground floor it is…… so far all going well

what will happen in the summer tho when the doors are open 🤷‍♀️🤷‍♀️🤷‍♀️

 

[sdmhred]

End of an era as I spend the last night tonight in mum’s flat - it’s largely packed up and now on my spare bed 🙈🙈 my own place is a step down in the market but I’m feeling peaceful about moving back……her rented place had the purpose of me caring hands on and it did that well.

Im going to almost be camping initially as there is so much to sort 🙈🙈🙈 I will continue my recent routine of walking, clearing and visiting mum. I’ve developed a decent rhythm with it - it will just be nice if there’s a sunny day to take a break for a country hike.

From last week we turned up Wednesday I think to find the CQC were in 😱😱😱 mum and I were interviewed and both gave a good report…..altho i did find the inspector asked mum lots of ‘knowledge’ questions which I didn’t think was that suited to a person with d…..Having been subject to CQC at work I also found it hilarious that suddenly all the juices in the fridge had date labels on 🤣🤣🤣 they never last more than a day……the sad thing was that the home is usually a place of laughter and joy….but on that day everyone was on their best behaviour so the inspectors would have missed that 😢😢

Ive a slight issue with the home’s GP. The nurse and management were excellent when mum had an upset tummy and took the appropriate action. The GP however hadn’t written up the chart and so they took the right ‘best interest’ decision…..but today when asked to amend the chart the GP said her medication regime does not need to change for diarrhoea…..which the specialist nurses say it does…but they have already sent out the info he needs 😬😬😬😬

 

[Chizz]

I hope @sdmhred the change back to your flat won't be too strange for you after all this mum caring time. Is it far from the care home?
So when you get to read the CQC report on your mum's care home, will you be able to recognise it?

 

[sdmhred]

Ah we were very fortunate - I checked - mum’s flat was 0.4 miles from mine - so the home remains 10mins drive which is great.

So far good to be back …but it will take me a while to get the place sorted 🙈🙈
I think I’m mainly going to miss our little back garden and the ability to look out at grass and greenery 😢😢 I‘m 3rd floor and look out to roof tops 😢😢

Unfortunately the CCG have been organised and arranged a DST for CHC the week after next 😱😱 I‘m not going to be able to prepare for it - my strategy is however that if I feel she is close and gets rejected to use the 6 months to appeal time line…..although the care home manager told me that it had got back to her that I had already scared the admin by asking some pertinent questions and saying I couldn’t manage the original time 🙈🙈🤣🤣

 

[sdmhred]

So much going on here - moving, unpacking ( well not much of that tbh🙈🙈), annoying GP, UTI 😢😢 and CHC paperwork……but I always wanted to record those sweet moments..

we had one today…mum got up for the first time in a week. We sat with Mary and Rita at dinner - she’s 93 with a lovely Geordie accent and tells me she hails from Northumberland. She went round the table pointing - me: skinny she says, mum: fat she says, Rita: medium 🤣🤣🤣 she was spot on!!

And then started singing - so we all enjoyed singing together Daisy, Daisy, ….she’ll be coming round the mountain, cockles and muscles 🥰🥰🥰 loved it - mum was tapping her hands….staff tell me this usually leads to Mary having more ‘behaviours’….but she said she was tired and went straight to bed after!

 

[Neveradullday!]

Sounds like an enjoyable dinner, @sdmhred - thank goodness Mary didn't 'kick off'! 😏
They say (whoever 'they' are) that children are always honest - and of course d is often called a second childhood.

 

[Chizz]

This morning, whilst I was preparing my OH's breakfast and cup of tea, I asked her what music she might like today. From the limited choice I gave her from our many many iPad playlists through Spotify she said how about some 1960's ?
I put on the playlist - random play - and the first tune that came up was Little Eva singing "Do the Locomotion"
So, naturally, I started to dance (or at least that's what I call it).
Without moment's hesitation my OH said "What would my mum say if she could see you now!"
"Would she join in?" I asked
"She might" and laughed. What a moment to start the day!😆😆