Our magic bitter sweet moments 🥰🥰🥰

[Eddcorner]

S

I’m glad to hear my musings cheer you @Knitandpurl 😀 One thing that i really enjoy about this site is connecting with people of all ages and backgrounds- folk I would never usually come across- but this positive side of the ‘dementia club’ is so enriching.

my work day started with a shock as alarm clock user error 🙈🙈 led to me waking up 23 mins before the laptop was due on 😱😱 Thankfully no early calls received so I was able to ‘come to’ before my first meeting! No work shockers which was a relief, and a good visit this afternoon to a lovely person who is too anxious to leave their house - each week we go for a short walk going further down the road. Also relieved that mum still ok on her own for a couple of hours. As the dementia has progressed she seems just to sit and watch the TV in my absence - my CCTV provides great peace of mind 😀😀

She aced the GP appt - I was so proud 🥰🥰 Came over as a lovely sweet old lady (which she is) but duly forgot she had been away and 3 times told the doctor how well she was being looked 😀😀 All observations normal and blood taken. We’ve been left with a respect form - and for us to discuss what treatment or not she would want in the event of a heart attack or stroke!

As soon as 5pm hits, the alarm goes again and we pile into the car with a picnic tea to sit at a local beauty spot 😀😀

After all that - im done - so it’s a TV night!

So pleased that your mum aced her GP visit @sdmhred and heaped praise on the level of care you give

Oh I've had those conversations on mum's last hospital admission 🤨 Consultant sent a junior medic to inform me of 'what not to expect' although ultimately it was my choice... but not really! Effectively written off as she was a patient with dementia, I accepted that invasive/major interventions were not an option as in my mind mum would present as too high risk on 'the table' but emergency resuscitation and the like..? Basically told a no-goer. Just prior (mid-admission) she had been scheduled for a procedure regarding her gallbladder which we had politely declined, pretty quick turn around in their thinking following that one eh? You decline an option and then as a consequence all others are off the table too! Our decision not to go with the procedure was borne out by mum's recovery once I worked to get her discharged home... Apologies I didn't mean to go on Certain topics are like a light switch going off in my brain.

 

[Tracyann61]

Great idea @sdmhred
With apols for length.
Throughout our marriage my wife has been a really super cook - made all our bread and bread rolls (without breadmaker machine), yogurts, ice cream, pickles, preserves, etc., catered for family parties, dinner parties, exotic dishes, etc., etc, - and had collected numerous cook books and her own handwritten recipes and secrets.

She also went to various classes and courses. At one of these, there was a Dutchman, who regularly turned up with various Indonesian spices, with the packets in Indonesian so there would be no clue what each was or was for,

Since my wife became ill 6 years ago, it fell to me to do all the shopping and cooking etc. I only did simple stuff to begin with, then I started to read recipes and expand the repertoire. I have got rid of most of the dinner party recipe books as I'm never going to do the fancy stuff my wife loved to do.

My daughter suggested going through cupboards and possibly clearing up stuff that I no longer need. Well earlier today I went through the kitchen cupboard where we keep herbs and spices and sauces etc. Some of them, well passed their "best fore" dates by a long long way! It is probably nearly 20 years since my wife last went to a cooking class/course.

My wife cannot now hold a conversation other than to answer whether cup of tea is too hot or not, etc and often talks randomly and incoherently.

I came across several small paper packages with labels printed in Indonesian. I showed them to my OH and asked her what they were and what they were for. Well, knock me down with a feather, without a moment's hesitation she said "Ah, the Dutchman gave me those for the curries."

My daughter has challenged me to use them for our next curry! It is likely to be a bitter/sweet moment if they don't poison us!

Isn’t it lovely when a loved one surprise’s us in this way. My mum sometimes reminds me of the things we did together years ago. It’s just great to know that she still has some memories.

 

[canary]

I accepted that invasive/major interventions were not an option as in my mind mum would present as too high risk on 'the table' but emergency resuscitation and the like..? Basically told a no-goer.

My OH has a DNAR form. I made the decision some time ago when he had sepsis.
Resuscitation is not like you see on TV - it is brutal and often results in broken ribs. If someone is frail they often do not survive long afterwards anyway and they suffer the pain. It doesnt mean that your PWD is written off, though, they will still be treated for other things - just not brought back to life if their heart stops.
Im sorry if I offend you, but to me it seems a good way to go.

 

[sdmhred]

mum also had a DNAR form done during her last hospital admission. With respect to the consultant she did take time to explore it with mum and ourselves. I’m told that these have now been replaced with Respect forms which is what we have been given. Apparently it also includes what wishes the person has should they have a heart attack or stroke and whether they wish to be taken into hospital or left at home to let ‘nature take its course’ [GPs words). I’m not sure how far we will get with it. Mum will probably defer to me and I think siblings will find the issue too distressing to engage properly in. It’s so nuanced I am not sure whether big decisions like that can be made wholesale - a big unsurvivable stroke I get but a small TIA mum would probably want the clot busting drug u can get to stop the big one coming……and indeed this is at her current stage where she does have considerable quality of life ….that will no doubt change!

oh dear - how deep, serious and emotive this is. But as you say @Eddcorner people shouldn’t be written off and each individual given freedom to make their choice.

 

[sdmhred]

our lighter moment of the day was mum’s friend calling. Bless her she’s 85 herself but still calls us every few months. Goodness knows what she thinks as mum has told her she lives in student halls of residence and today she was told mum is in a lovely place where they deliver lots of plants 💐🌷🌺🤷‍♀️🤷‍♀️ I never know whether to butt in or leave them to it.

Aubergine curry for tea.

still amused with the thought of @Eddcorners mum pinching flowers at RHS Chelsea and @Neveradullday! having to front the women 😱😱 at the mens shed - thank goodness for lighter moments 😀😀

 

[Eddcorner]

mum also had a DNAR form done during her last hospital admission. With respect to the consultant she did take time to explore it with mum and ourselves. I’m told that these have now been replaced with Respect forms which is what we have been given. Apparently it also includes what wishes the person has should they have a heart attack or stroke and whether they wish to be taken into hospital or left at home to let ‘nature take its course’ [GPs words). I’m not sure how far we will get with it. Mum will probably defer to me and I think siblings will find the issue too distressing to engage properly in. It’s so nuanced I am not sure whether big decisions like that can be made wholesale - a big unsurvivable stroke I get but a small TIA mum would probably want the clot busting drug u can get to stop the big one coming……and indeed this is at her current stage where she does have considerable quality of life ….that will no doubt change!

oh dear - how deep, serious and emotive this is. But as you say @Eddcorner people shouldn’t be written off and each individual given freedom to make their choice.

Different hospitals/areas will vary but you're right it's a very emotive issue and easy to get tangled up with I'm happy that your own positions are somewhat clearer than mine as mum only verbalised her wishes to me... Yes, easily written off but will try my hardest as her advocate to ensure her directions are carried through, typical fighter 😉

 

[sdmhred]

Different hospitals/areas will vary but you're right it's a very emotive issue and easy to get tangled up with I'm happy that your own positions are somewhat clearer than mine as mum only verbalised her wishes to me... Yes, easily written off but will try my hardest as her advocate to ensure her directions are carried through, typical fighter 😉

You fight on for your mum @Eddcorner
She has just as much right as anyone else to have her wishes respected

 

[sdmhred]

I’m always so relieved to get through my working days! Each week successfully juggled feels like a bonus.

Sadly a brash management email ended things slightly sourly. My worlds clashed slightly as it was a SS ‘get them through the system quickly’ type thing. I thought of my peers here so badly treated by SS and experienced it from the inside 😢😢 The whole broken system does not allow TIME for people to be listened to, cared for and respected. Ultimately that will send me off on another path in time.

Mum has aced the working week again by happily resting in the mornings and enjoying her TV afternoons. She was so sharp by informing me it was 5pm when I had my nose in my laptop (talking to a colleague 🤣🤣 at that time of the day)……she then proceeded to say no rush she had herself been working all afternoon!! I enquired as to what - apparently sorting out her mortgage payments and classifying her photos! All clearly at the same time as watching the box 🤣🤣 So sweet as she was so nice and completely genuine about it all - but bitter as so off the mark and reminded me of Dad who died 88 so sharp that he was planning meetings 15hrs before pneumonia and frailty of old age took him. He WOULD have been sorting mortgage payments and loads more at her age - in reality I am doing all that too!

But we treat ourselves Friday night to a trip to a local gorgeous village for coffee and ice cream - confession time - actually mum gets sorbet but thinks it’s ice cream 🙈🙈🙈 Am I such an awful carer 🙈🙈 Four days off now - hurrah!

 

[sdmhred]

Bizarre happenings last night! Mum’s movement detector went off at what the clock said 8:08 - yippee we’ve slept through 🤣🤣 mum taken to the loo, pad changed - we then have one of our precious conversations- she always comments on its strange how she never knows she’s been - we then hold up the pad and if it’s heavy name it a ‘prizewinner’ - which mum finds hilarious. She’s slightly worried then she may run out so I show her the en-suite shower (which she refuses to use 🙈🙈) which is full of pads, pull ups of all shapes and sizes. Mum then tootles back to bed with a chuckle that someone is making a packet out of all this!

I go back to bed for ‘10 mins’ which I wake up from to find its 7:08 and time has reversed 🤣🤣 Goodness knows what time my original wake up actually was!

After that a lovely lazy day 🥰🥰 Admin, relaxing, a touch of plant repotting, and a late trip out for a walk and dinner. We hadn’t done plant potting for ages. I laid everything out for mum and left her to it. Amazingly she managed without promptin - altho soil everywhere! Why that skill remains but she can’t remember where to put her hands to get out of the car - only dementia knows.

Currently sitting with the washing in her lap. Her only task is to put it on the rack - me thinks BBC4 on the Himalayas is winning tonight - nothing done!

 

[Eddcorner]

Bizarre happenings last night! Mum’s movement detector went off at what the clock said 8:08 - yippee we’ve slept through 🤣🤣 mum taken to the loo, pad changed - we then have one of our precious conversations- she always comments on its strange how she never knows she’s been - we then hold up the pad and if it’s heavy name it a ‘prizewinner’ - which mum finds hilarious. She’s slightly worried then she may run out so I show her the en-suite shower (which she refuses to use 🙈🙈) which is full of pads, pull ups of all shapes and sizes. Mum then tootles back to bed with a chuckle that someone is making a packet out of all this!

I go back to bed for ‘10 mins’ which I wake up from to find its 7:08 and time has reversed 🤣🤣 Goodness knows what time my original wake up actually was!

After that a lovely lazy day 🥰🥰 Admin, relaxing, a touch of plant repotting, and a late trip out for a walk and dinner. We hadn’t done plant potting for ages. I laid everything out for mum and left her to it. Amazingly she managed without promptin - altho soil everywhere! Why that skill remains but she can’t remember where to put her hands to get out of the car - only dementia knows.

Currently sitting with the washing in her lap. Her only task is to put it on the rack - me thinks BBC4 on the Himalayas is winning tonight - nothing done!

Fantastic! Always great to be surprised by a loved one in such a manner, so well done your mum properly sharp on the humour and fiscal insight too!

Must have been a time slip or a temporal wormhole event, maybe an alternate reality... whatever you felt you had some extra sleep and then had a time dividend too. Winner!!

 

[Neveradullday!]

Bizarre happenings last night! Mum’s movement detector went off at what the clock said 8:08 - yippee we’ve slept through 🤣🤣 mum taken to the loo, pad changed - we then have one of our precious conversations- she always comments on its strange how she never knows she’s been - we then hold up the pad and if it’s heavy name it a ‘prizewinner’ - which mum finds hilarious. She’s slightly worried then she may run out so I show her the en-suite shower (which she refuses to use 🙈🙈) which is full of pads, pull ups of all shapes and sizes. Mum then tootles back to bed with a chuckle that someone is making a packet out of all this!

I go back to bed for ‘10 mins’ which I wake up from to find its 7:08 and time has reversed 🤣🤣 Goodness knows what time my original wake up actually was!

After that a lovely lazy day 🥰🥰 Admin, relaxing, a touch of plant repotting, and a late trip out for a walk and dinner. We hadn’t done plant potting for ages. I laid everything out for mum and left her to it. Amazingly she managed without promptin - altho soil everywhere! Why that skill remains but she can’t remember where to put her hands to get out of the car - only dementia knows.

Currently sitting with the washing in her lap. Her only task is to put it on the rack - me thinks BBC4 on the Himalayas is winning tonight - nothing done!

Two great photos again, @sdmhred , nice to see the new wheelchair can get your mum into the woods. The light in that second pic is amazing!

I've just switched on gb news on the radio and they're doing a ITV Daytime crisis special!! Can't believe my luck. 🙂

 

[Eddcorner]

Two great photos again, @sdmhred , nice to see the new wheelchair can get your mum into the woods. The light in that second pic is amazing!

I've just switched on gb news on the radio and they're doing a ITV Daytime crisis special!! Can't believe my luck. 🙂

ITV tosh. Holly apparently distraught at Phil's lies... 😝

 

[sdmhred]

We will leave you to update us @Neveradullday! Mum is very sensible and waits til all that tosh is over before she engages with the world! I can’t remember when I last had to suffer any of that!!

I guess it’s the extent & subject of the lies - but I did wonder why it seems OK for our politicians to lie but not day time TV presenters 🤷‍♀️🤷‍♀️🤷‍♀️

 

[Neveradullday!]

We will leave you to update us @Neveradullday! Mum is very sensible and waits til all that tosh is over before she engages with the world! I can’t remember when I last had to suffer any of that!!

I guess it’s the extent & subject of the lies - but I did wonder why it seems OK for our politicians to lie but not day time TV presenters 🤷‍♀️🤷‍♀️🤷‍♀️

You make a very good point, @sdmhred . To be honest, I've been listening for 15 mins and I'm already fed up with it. My 'excitement' was tongue in cheek. Will concentrate on TP for what's left of the evening. Interesting thread developing (started by 'Andy' about his mother).

Edit - unfortunately, that thread is taking a disturbing turn.

 

[Neveradullday!]

ITV tosh. Holly apparently distraught at Phil's lies... 😝

Schadenfreudetastic, @Eddcorner 🙂

 

[Eddcorner]

Schadenfreudetastic, @Eddcorner 🙂

Absolutely!!

 

[sdmhred]

I do love these long sunny days - it seems like so much more time in the day!

Usual morning walk for me and sleep for mum….alas followed by the attempt of the terrible - finger nail cutting 😱😱 Well we got 2 done!! 🙄🙄 I was still concerned she had soil from yesterday’s gardening under her nails so left her trying to scrub them with an old tooth brush…..

we then made up for it visiting mum’s favourite place - the waffle station 🥰🥰 although she has some vague memory of it, the childlike excitement when she gets there is lovely - it’s like the best thing ever in her world!!

If her day couldn’t get any better we then stumbled on a way to access the tow path with her new wheels - a very happy mum……oh and is it too much info to say how impressed I am that due to the lack of suitable conveniences mum, 83, mobility problems, mid stage VD happily did a wild wee under my instruction holding onto the car door with me holding and directing the shewee 🤣🤣 I’m well impressed with her determination to keep making the most of life despite all its challenges 🥰🥰

I am meanwhilenow shattered after the 3K push …

Getting home to get her in, wash, lounge wear (aka nightie & soft tops - much more acceptable in her mind 🤷‍♀️🤷‍♀️), wash up, supermarket order…..and still I can hear my late Dad reminding me I haven’t yet watered the tomato plants ……

zzzzzzzzz for me …..but a good day making memories and giving pleasure 🥰🥰

 

[jennifer1967]

I do love these long sunny days - it seems like so much more time in the day!

Usual morning walk for me and sleep for mum….alas followed by the attempt of the terrible - finger nail cutting 😱😱 Well we got 2 done!! 🙄🙄 I was still concerned she had soil from yesterday’s gardening under her nails so left her trying to scrub them with an old tooth brush…..

we then made up for it visiting mum’s favourite place - the waffle station 🥰🥰 although she has some vague memory of it, the childlike excitement when she gets there is lovely - it’s like the best thing ever in her world!!

If her day couldn’t get any better we then stumbled on a way to access the tow path with her new wheels - a very happy mum……I meanwhile am now shattered after a 3K push …

Getting home to get her in, wash, lounge wear (aka nightie & soft tops - much more acceptable in her mind 🤷‍♀️🤷‍♀️), wash up, supermarket order…..and still I can hear my late Dad reminding me I haven’t yet watered the tomato plants ……

zzzzzzzzz for me …..but a good day making memories and giving pleasure 🥰🥰

i like reading your thread and looking at the pictures. you do a very good job of looking after your mum and having a full life

 

[sdmhred]

Thanks @jennifer1967 I feel very privileged that mum and I enjoy the same sort of things so we both get pleasure in our days.
I wondered about blogging when I first started full time caring but this has proved the perfect outlet - it’s quite therapeutic!

 

[sdmhred]

My brother paid us a visit today. A special afterthought for mum - she even let me wash her hair for him - that is a big accolade!! Usually involves much shrieking but I tried just using a wet cloth and that was much more successful 😀

I enjoyed the conversation and relative ‘normality’ of spending time with family. Interestingly mum was convinced he was also a childhood friend and not a relative so he’s joined my club! My other sister seems exempt as is always (so far!) a daughter. His wife is expecting any time so mum enjoyed demonstrating how to wind a baby with one of her soft toys - that skill seems to have been retained!

mum’s TV viewing is sorted for the next few weeks - combination of French Open and SpringWatch in her favourite place 😀😀

Ive been musing today on the whole topic of friends and dementia caring - a couple of offers to meet up. That side of life has been pretty non existent apart from on messaging etc It’s strange that since covid & caring Ive changed who I want to meet up with - and I’m surprised at who I am saying yes to and who i have no appetite for. Practicalities can be overcome - but a lack of general energy is a factor….I’m also really aware I have always been in the ‘helper’ role and people will tell me all their issues.…….I’m not sure I can be that these days - we’ll see what happens…I think I will start with short ’flybys’ so no time for anything too deep!!

Enjoy the liberated / resurrected flowers…