My road diary

[JaxG]

Well today has been fun. OH had an appointment for neck x-ray as he's constantly complaining of pain. Started on about how he couldn't go with excuses, in the end decided he would after a massive row, about wanting help but then being a pain in the a***e when he gets it.
In the middle of being really nasty towards me I got 'Oh before I forget, happy birthday' then carried on as before. Then tried to blame me for the argument.
Needless to say rest of day as resulted in not speaking. He got his x-ray, complained all way home at now having to wait 7-10 for the results.
What can I say but Self, self, self.
Yes partly the dementia but was so selfish before.
He has an appointment for Covid on Saturday which he is now saying he isn't going to. So I've given him the phone and told him to cancel it so that someone else can have the appointment, and in future any problems he has, he can make his own appointments or contact the doctor himself. I'm done. But he won't bother.
I'm now repeating the words I keep being told from GP's etc. You can't help someone who doesn't want to help themselves and before someone says it's dementia. I was also told this by his dementia consultant.

I feel your pain, I've been through al these sorts of things. It's exhausting isn't it, knowing you're trying to help but being accused of all sorts. The only positive for me is the Risperidone seems to have worked a miracle and my OH is much calmer and more accepting.
It's my birthday on Sunday - I finally get my state pension - hoorah. He won't remember but no change there!!

 

[Chizz]

Hi @JaxG - HAPPY BIRTHDAY for Sunday. You don't look old enough for pension, to me!
😊🎂🎉

 

[JaxG]

Hi @JaxG - HAPPY BIRTHDAY for Sunday. You don't look old enough for pension, to me!
😊🎂🎉

Haha - Thank you very much!! Never thought I could be excited about being 66!!

 

[SeaSwallow]

Haha - Thank you very much!! Never thought I could be excited about being 66!!

Happy birthday for Sunday from me too. May I make a wee suggestion, when you get your first pension, treat yourself to something special, we carers rarely do that but I think that you should do that to mark the occasion.

 

[jennifer1967]

Hi @JaxG - HAPPY BIRTHDAY for Sunday. You don't look old enough for pension, to me!
😊🎂🎉

happy birthday for sunday. does your pension give you more freedom? treat yourself!🥳🥳

 

[JaxG]

Happy birthday for Sunday from me too. May I make a wee suggestion, when you get your first pension, treat yourself to something special, we carers rarely do that but I think that you should do that to mark the occasion.

Thank you - yep as carers there isn't a lot to look forward to!!

 

[JaxG]

happy birthday for sunday. does your pension give you more freedom? treat yourself!🥳🥳

Thank you!! It means I can save a bit so I won't have to worry so much. I finished paying off my OH debts earlier this year so just having a bit extra is a huge relief.

 

[jennifer1967]

Thank you!! It means I can save a bit so I won't have to worry so much. I finished paying off my OH debts earlier this year so just having a bit extra is a huge relief.

just having a cushion helps and feel a bit more in control

 

[jay6]

Well we managed to get away to daughters, no problems, OH just had me up every hour to use pee bottle as he couldn't get off sofa bed. But at least he didn't wet anywhere. No nastiness, acted quite 'normally'.
Back home and 2 wet beds, verbal abuse, completely **** himself, (clothes, inside and out, the floor, walked it) Still hasn't done the poo test, apparently he doesn't need one. 🙄🙄😲😲😫😫
Spent the last 2-3 days in my room to avoid the nastiness. He doesn't seem at all bothered, 'hello dementia!!!'

 

[Chizz]

Well we managed to get away to daughters, no problems, OH just had me up every hour to use pee bottle as he couldn't get off sofa bed. But at least he didn't wet anywhere. No nastiness, acted quite 'normally'.
Back home and 2 wet beds, verbal abuse, completely **** himself, (clothes, inside and out, the floor, walked it) Still hasn't done the poo test, apparently he doesn't need one. 🙄🙄😲😲😫😫
Spent the last 2-3 days in my room to avoid the nastiness. He doesn't seem at all bothered, 'hello dementia!!!'

Very sorry to hear your troubles @jay6.
Unfortunately, it is what it is. **** happens. Mostly to the carers!

 

[jennifer1967]

Well we managed to get away to daughters, no problems, OH just had me up every hour to use pee bottle as he couldn't get off sofa bed. But at least he didn't wet anywhere. No nastiness, acted quite 'normally'.
Back home and 2 wet beds, verbal abuse, completely **** himself, (clothes, inside and out, the floor, walked it) Still hasn't done the poo test, apparently he doesn't need one. 🙄🙄😲😲😫😫
Spent the last 2-3 days in my room to avoid the nastiness. He doesn't seem at all bothered, 'hello dementia!!!'

is there any where you can go for help? the doctor, alz soc, its not fair you have to stay in your bedroom to avoid his nastiness

 

[jay6]

is there any where you can go for help? the doctor, alz soc, its not fair you have to stay in your bedroom to avoid his nastiness

I really don't have any problem with being in my bedroom. It's quite big, I have a T.V. Laptop, kettle, phone. All I need really. I've only stayed in because of the weather, The GP knows what he's like, because he admitted he's really nasty towards me but said he didn't know why as I did a lot. That was long before dementia, but dementia has escalated it which is why GP and put him on meds, did make a bit of difference at first but he seems to have got used to them. GP did say he could increase the dose but said it was a lot to do with his personality before dementia.

 

[jay6]

Well yesterday was another challenge. OH been complaining about his feet for over a year now. We've bought 3 pairs of new shoes in last year alone, almost £200. The guy in shop was very patient, measuring each time etc. to make sure they were suitable and they best he could find. But it has been difficult because on his stroke foot, his toes keep going under. I bought different things to try and help with physio's help but still complains so GP decided to send him for an appointment with hospital foot team, to see if they could supply special shoes.
Great I thought. Well the appointment was yesterday. He's had plenty of warning. White board in kitchen to remind him every time he goes in there.
He was up, washed and dressed so I said he had about 30 minutes before we leave. Then it all started 'Don't think I've got time'. 'Think I'll leave it to another day' 'Can't be bothered' etc. etc. So I reminded him how his shoes hurt and how we could go for a coffee after, no luck.
So the battle started. I was miserable, stupid, childish etc. etc. Got there almost 10 minutes late but at least did mange to get him there. The hospital team were understanding and helpful and he's been ordered special shoes. His stroke foot is a lot larger and wider than it was so maybe that was the problem. They are also issuing something to keep his foot from dropping to help with walking. Didn't go for coffee after though as couldn't put up with his nastiness at 'dragging' him to the appointment so we just came straight back home. He didn't speak to me for rest of day, but that was fine, nice to have peace.
Next battle will be when the fitting takes place before they can do final shoes.
Oh and he still hasn't done the poo test. (24 days ago) GP sent message again last week asking if he'd done it but apparently OH says he doesn't need one so I've given up.

 

[jennifer1967]

Well yesterday was another challenge. OH been complaining about his feet for over a year now. We've bought 3 pairs of new shoes in last year alone, almost £200. The guy in shop was very patient, measuring each time etc. to make sure they were suitable and they best he could find. But it has been difficult because on his stroke foot, his toes keep going under. I bought different things to try and help with physio's help but still complains so GP decided to send him for an appointment with hospital foot team, to see if they could supply special shoes.
Great I thought. Well the appointment was yesterday. He's had plenty of warning. White board in kitchen to remind him every time he goes in there.
He was up, washed and dressed so I said he had about 30 minutes before we leave. Then it all started 'Don't think I've got time'. 'Think I'll leave it to another day' 'Can't be bothered' etc. etc. So I reminded him how his shoes hurt and how we could go for a coffee after, no luck.
So the battle started. I was miserable, stupid, childish etc. etc. Got there almost 10 minutes late but at least did mange to get him there. The hospital team were understanding and helpful and he's been ordered special shoes. His stroke foot is a lot larger and wider than it was so maybe that was the problem. They are also issuing something to keep his foot from dropping to help with walking. Didn't go for coffee after though as couldn't put up with his nastiness at 'dragging' him to the appointment so we just came straight back home. He didn't speak to me for rest of day, but that was fine, nice to have peace.
Next battle will be when the fitting takes place before they can do final shoes.
Oh and he still hasn't done the poo test. (24 days ago) GP sent message again last week asking if he'd done it but apparently OH says he doesn't need one so I've given up.

my husband had anaemia and they wanted to check whether he was losing blood from his bowel. he refused the poo sample and cameras up and down. they gave a scan of his colon using dye to light up colon. also had a barium meal. they found he had polyps in the stomach wall. he didnt want treatment. they said it was 1-2% chance they could turn cancerous and at such a low percentage, it wasnt really worth doing anything else. he said that if they had found cancer, he would have refused treatment any way so not a lot of point in putting him through further tests

 

[jay6]

my husband had anaemia and they wanted to check whether he was losing blood from his bowel. he refused the poo sample and cameras up and down. they gave a scan of his colon using dye to light up colon. also had a barium meal. they found he had polyps in the stomach wall. he didnt want treatment. they said it was 1-2% chance they could turn cancerous and at such a low percentage, it wasnt really worth doing anything else. he said that if they had found cancer, he would have refused treatment any way so not a lot of point in putting him through further tests

That's why GP has asked him for a poo test. His bloods came back with anaemia. I've tried to explain to him the reason he needs to do it but just can't be bothered to battle anymore

 

[jennifer1967]

That's why GP has asked him for a poo test. His bloods came back with anaemia. I've tried to explain to him the reason he needs to do it but just can't be bothered to battle anymore

mine refused so i let it go. not worth him getting in a state about it as really its not going to change things.

 

[jay6]

mine refused so i let it go. not worth him getting in a state about it as really its not going to change things.

Your right if I got him to do a test would probably be another battle to get him to surgery for results anyway. He still has free choice!

 

[jennifer1967]

Your right if I got him to do a test would probably be another battle to get him to surgery for results anyway. He still has free choice!

somethings are just not worth the battle.

 

[Chizz]

The incontinence nurse came today for the annual check up. When they phone to make the appointment in advance, it is only then that they send a letter with a survey form for me to complete for 3 days - showing amounts and times of fluids in and out, and showing type of poo (there is a page of pictures of the various types) and the times and amounts of poo.
Form only received on Sat afternoon when we had lots of family round. A lovely lively day with children and grandchildren and their respective partners. So, I only looked at letter on Sun morning, which meant for the appointment sometime between 9am and 4pm today, I only had Sun and Mon and a bit of Tues to complete before nurse arrived - not the 3 days they wanted.
I pointed this out to nurse and she said I was lucky to get the letter (sent 2nd class post) so promptly - she said at many of the calls she makes the patient hasn't by then even received the letter, let alone completed survey. How efficient is that ?
As my wife is unable to weight bear, and thus can't go to toilet, and we only have carers in to change pads 3 times a day - whilst I can measure the fluid intake, I can't time or measure the output as requested as she may have been lying with a wet pad for some hours. Similarly, I can't time or measure the poo output for same reason, and the type of poo is all mashed up from lying in it for some time!
Any way, blood pressure a bit low - sign possibly of dehydration, and nurse did do a bladder scan (with me holding OH's arms to prevent greater resistance) which showed no water retention - so that was good, and I didn't know they did that check, so quite pleased. and re-assured.
They do prescribe the pads/nappies - so I asked why they don't prescribe the stretchy over knickers, or the bed over pads (60cm x 90cm that I buy) - the answer is that local authority work on the basis (to save money, of course) that if the pads/nappies are the right size, then there shouldn't be leakage (!) and other items unnecessary. I had a polite argument about this with the nurse, who says yes, of course, she agrees, but those aren't her instructions!
Apols for long post on something so exciting! (but so far, this is/was the high light of today!)

 

[sdmhred]

There shouldnt be leakage 🤣🤣🤣

Laughable!!!!


get measuring that poo and wee @Chizz

we should get our MPs to start debating the leakage of pads in parliament - that’s the nitty gritty of health and social care