Dear Diary!

sdmhred

Registered User
Jan 26, 2022
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Surrey
I was going to suggest could you read to her? Something u might both enjoy? I’m quite lucky in that we sit a lot in contented silence but I do enjoy reading her diaries to her…although she has no idea what they are but listens peacefully!
 

Eddcorner

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Aug 27, 2020
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My Mum used to say “I just like to hear your voice”, my sister was much better at it than me. But I think my OH does too, so as he can no longer read I will read to him, he usually falls asleep quite quickly😏. Does your Mum like listening to pod casts or the radio, might give you a ‘chat’ break.
Hi @Knitandpurl :)

Hmm I've been doing it for so many years now so I was just wondering how others might feel... We did used to read for hours and hours but mum's preference was for it to be an interactive two-way process - however when her functionality lessened she lost interest, frustration at her inability to verbalise on a consistent basis played a major role in declining any change to this activity. Don't get me wrong I still read to her but it is now more of a rarity. Podcasts aren't really her thing although we do listen to the radio and/or music but again her preference is that this should be a shared event and tbh it's something we both enjoy. Mum is very much a person who likes to do most if not all stuff together, she even expects running commentary on the TV!! Mum has conditioned me well methinks ;) but I'm not complaining really and more than fortunate she still enjoys my company (most people don't!) haha 😄

Oh and apologies I made it sound like a recent change, not so recent in actuality.
 
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Eddcorner

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Aug 27, 2020
1,693
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I was going to suggest could you read to her? Something u might both enjoy? I’m quite lucky in that we sit a lot in contented silence but I do enjoy reading her diaries to her…although she has no idea what they are but listens peacefully!
Contented silence! Mum pre-diagnosis would often sit in the backroom for hours doing puzzles and such surrounded by her thesaurus & numerous dictionaries, reckon she's making up for list time. Think mum was accommodating me somewhat knowing my 'conversational' skills were limited unless talking about work, research or goings on in the Middle East!!! Laser focus on my part I'm afraid...

Anyways thanks for the suggestion @sdmhred :) but apart from our reading exercises and as I described to @Knitandpurl mum has a lot less interest in 'reading' books due to her inability to participate to any great degree, it still happens but a lot less so nowadays unfortunately. I know you've had great success yourselves but mum is definitely a creature of habit... I must have the voice of a nightingale eh? Probs owe her this one ;)
 
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Eddcorner

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Aug 27, 2020
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A great night all in all consequently mum very bright & engaging post mid-pm today. Photographs with accompanying stories/history, massage (various joints) which was totally enjoyed, washed/cut hair, finger and toenails sorted too... what a day!! Knackered mind haha 😄
 

jennifer1967

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Mar 15, 2020
24,139
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Southampton
A great night all in all consequently mum very bright & engaging post mid-pm today. Photographs with accompanying stories/history, massage (various joints) which was totally enjoyed, washed/cut hair, finger and toenails sorted too... what a day!! Knackered mind haha 😄
a busy day for you, no wondered you are knackered.
 

Eddcorner

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Aug 27, 2020
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a busy day for you, no wondered you are knackered.
Hmm, looking at mum's hair though maybe a little bit too high and tight saying that if it's brushing around her ears she will itch them vigorously... ponytail & length seems reasonably top! And yes shattered but feeling positive about the day's outcomes :)
 

Eddcorner

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Aug 27, 2020
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Sort of a disjointed weirdy day today, think mum has a 'funny-tummy' and knee (right one this time) dodgy again, weight-bearing it is not! Yep bit of a twitcher so will just have to go with the flow, reminding mum there's no rush and everything will take as long as it takes; hmm got that look that says 'as if I didn't know that already son'!!

Watching 'Curse of The Ancients' with Alice Roberts as she continues with her dinner, mum very happy as a consequence :)
 

Eddcorner

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Aug 27, 2020
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Mum received Holy Communion at a later time of 4.30pm today as it's been working well with another eucharistic minister who has accommodated mum's hectic early day schedule in recent weeks. There are some trade offs during the process but importantly by doing it a little differently mum is less likely to miss out :)
 

Agzy

Registered User
Nov 16, 2016
3,876
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Moreton, Wirral. UK.
After wolfing down a massive helping of brocoli and smoked haddock mum also devoured a large plate of strawberries & tangerine boats... where does she put it all? ;) Cod and cherry tomatoes for late supper to follow haha.
Pauline is officially a ‘Super Taster,’ and so exists on very plain food, no spices, herbs or even salt. The only greens she eats are mushy peas and then only a table spoon full max. American fries, Crispy sliced potato's, airfried and microwaved jacket potato with butter. Boiled potatoes and supermarket thinly sliced beef plus aunt Bessies Yorkshire pud twice a week about sums up her diet and although portions are ridiculously small she is overweight, weird!
 

Eddcorner

Registered User
Aug 27, 2020
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Pauline is officially a ‘Super Taster,’ and so exists on very plain food, no spices, herbs or even salt. The only greens she eats are mushy peas and then only a table spoon full max. American fries, Crispy sliced potato's, airfried and microwaved jacket potato with butter. Boiled potatoes and supermarket thinly sliced beef plus aunt Bessies Yorkshire pud twice a week about sums up her diet and although portions are ridiculously small she is overweight, weird!
I know!

'Super taster' eh? The brain fog baffles me at times so much so now I've given up trying to science it out haha ;) Mum's a bit like the TARDIS methinks volume wise - also very particular about how food is placed/divided on plate, mega portions a must but these have to be colour coordinated and has very little interest in what used to be her faves... She did have to adapt her diet (with her consent) following a serious illness but now won't deviate at all, salads being the exception which have a multitude of veggies presenting mum with a variety of colours, a veritable helping of chaos!! But no complaints my friend, she's eating better than ever so a big plus in her battles against the dreaded brain fiend :)
 

Eddcorner

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Aug 27, 2020
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Well finally settled into a new more flexible nighttime routine dependant on what time mum retires to bed, it means assisting mum with a personal visit every two hours after she's actually gone to sleep. Once the third has been attended to she also has a solid block of uninterrupted zedding time before rising in the morning. Had a bit of a 'mare the other night which led to us 'discussing' a different approach... There's a lot more to it but suffice to say I think (touch wood) we should both be much more rested!! :) I don't mind getting up with mum, done it for years but in recent weeks it was just a bit hit and miss.
 

Agzy

Registered User
Nov 16, 2016
3,876
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Moreton, Wirral. UK.
I know!

'Super taster' eh? The brain fog baffles me at times so much so now I've given up trying to science it out haha ;) Mum's a bit like the TARDIS methinks volume wise - also very particular about how food is placed/divided on plate, mega portions a must but these have to be colour coordinated and has very little interest in what used to be her faves... She did have to adapt her diet (with her consent) following a serious illness but now won't deviate at all, salads being the exception which have a multitude of veggies presenting mum with a variety of colours, a veritable helping of chaos!! But no complaints my friend, she's eating better than ever so a big plus in her battles against the dreaded brain fiend :)
The only ‘greens’ Pauline eats are tinned mushy peas 😝
 

Eddcorner

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Aug 27, 2020
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Ah well made a rod for my own back as mum now wants to hold my hand throughout the night, similar behaviour at the outset of our journey together. Maybe it's a passing thing and maybe she's just seeking that extra bit of reassurance, can't blame her if that's the case. Thought I'd nailed the routine after our chat but if mum needs me who am I to debate the issue? Love her to bits ❤
 

Neveradullday!

Registered User
Oct 12, 2022
3,462
0
England
Ah well made a rod for my own back as mum now wants to hold my hand throughout the night, similar behaviour at the outset of our journey together. Maybe it's a passing thing and maybe she's just seeking that extra bit of reassurance, can't blame her if that's the case. Thought I'd nailed the routine after our chat but if mum needs me who am I to debate the issue? Love her to bits ❤
Difficult, @Eddcorner
At the start of my 24/7 journey with my mum, she was so disturbed that for the first 12 weeks I slept on the floor of her bedroom (on an inflatable bed).
After she attacked me with the landline phone one day (I'd tried to convince her I was me 😏), I decided "sod this, I'm going back to my own bedroom."

I felt so much better, I vowed never to repeat those weeks again. She got used to it very quickly, there's just a ritual each night now where I reassure her I'm not going anywhere ("I'm just along the landing - I can hear a pin drop").
I hope it's a passing thing for you both.
 
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sdmhred

Registered User
Jan 26, 2022
2,317
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Surrey
Mum here is increasingly wanting her hand held too. She will often not let go of thr carers - and I think sometimes forgets how to do it too 😢Often they have to prise her fingers open.

I often replace hand with a teddy bear or she will hold onto the sheet of the bed instead.
 

Eddcorner

Registered User
Aug 27, 2020
1,693
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Difficult, @Eddcorner
At the start of my 24/7 journey with my mum, she was so disturbed that for the first 12 weeks I slept on the floor of her bedroom (on an inflatable bed).
After she attacked me with the landline phone one day (I'd tried to convince her I was me 😏), I decided "sod this, I'm going back to my own bedroom."

I felt so much better, I vowed never to repeat those weeks again. She got used to it very quickly, there's just a ritual each night now where I reassure her I'm not going anywhere ("I'm just along the landing - I can hear a pin drop").
I hope it's a passing thing for you both.
I have a camp/folding one in the backroom next to mum's hospital bed so I know where you're coming from @Neveradullday! ... consequently if she wants privacy at any time it's easily resolved nice and quick-like :) We haven't encountered any problems in the past several years but my presence reassures her, also she can indicate the need for personal assistance as and when. Early on in our journey mum would hold my hand for hours on end even when asleep!! At the moment it involves me on top of her bed with a loose covering (I actually get more sleep this way) until she drops off; perhaps during these later stages it's important for mum - I can understand that as we're heading into our tenth year. Never realised how bloomin' uncomfortable those beds are haha ;) but yes it's a tricky one, I just want mum to feel safe in this instance.
 

Eddcorner

Registered User
Aug 27, 2020
1,693
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Mum here is increasingly wanting her hand held too. She will often not let go of thr carers - and I think sometimes forgets how to do it too 😢Often they have to prise her fingers open.

I often replace hand with a teddy bear or she will hold onto the sheet of the bed instead.
Oh my @sdmhred - how heartbreaking my friend. Mum has Flopsy 1 and Duggie too - we have a little ritual which I perform whilst tucking her in, she's just looking for something a little bit extra at the moment. On the plus side I've learnt to sleep on six inches (width) of hospital bed haha ;)
 
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Eddcorner

Registered User
Aug 27, 2020
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Eyelids drooping - emergency measures called for! Jason Statham's 'Transporter' and a late chicken breast fillet supper...