There is a point I think when someone can get so sick and tired of being in hospital, or lying in accident and emergency for 15 hours or more waiting for a bed to be found before they even begin being "in hospital" - especially at weekends - then lying in a ward listening to the suffering of other patients, and phones that ring and ring and ring and never got answered - that the thought of doing so again must pall, and me putting him through that over a false alarm only adds to that sense of utter utter weariness with it all :( And the problem with ambulance staff when they assess him, is as soon as it's mentioned that they're dealing with a dialysis patient on warfarin for blood clots in his lungs - they always without fail - take him in as a precaution, whether it's needed or not. But you are right, Chris - I know what I should do... :)

Annie, I know full well how difficult life currently is for you and your other half, and I can 100% entirely understand his feelings about, Oh god not ANOTHER hospital visit, please no!! And likely the guilt that you feel for putting him through it YET again. But he is still there with you, and you must continue to do what must be done, as hard as I know it is for you. But don't try to shoulder all the responsibilities on your own., there is help out there.

You have highlighted very well what is wrong with our current NHS system, which is basically lack of money. But at least we have an NHS, broken as it is, and a working 999 system. How many other countries have even that? Not a lot of consolation I know.

Happy to hear Annelie is healing. :) Such a beautiful name Annelie. :)

So am I :) and yes, I have to agree, it's a very pretty name, Lynn. :) In fact it's so pretty, I got briefly very very jealous, and could barely post for almost a whole minute after first coming across it. I'm over it now though ;)

You don't "persuade" your other half, YOU as the carer make a judgement call yourself

There is a point I think when someone can get so sick and tired of being in hospital, or lying in accident and emergency for 15 hours or more waiting for a bed to be found before they even begin being "in hospital" - especially at weekends - then lying in a ward listening to the suffering of other patients, and phones that ring and ring and ring and never got answered - that the thought of doing so again must pall, and me putting him through that over a false alarm only adds to that sense of utter utter weariness with it all :( And the problem with ambulance staff when they assess him, is as soon as it's mentioned that they're dealing with a dialysis patient on warfarin for blood clots in his lungs - they always without fail - take him in as a precaution, whether it's needed or not. But you are right, Chris - I know what I should do... :)

It boggles my mind sometimes how insensitive people can be.

I can't improve on the replies you've already received here, Gordon, other than to say I know of what you speak and have myself often been left with painful toes after dropping my jaw on them. I'm sure they're intended to be well-meaning platitudes, but silence, or crossing to the other side of the road to avoid speaking to you at all - can actually leave you feeling better than watching their lips move at close range.

I'm so sorry :(

But after 9 months this has become my life, not sure I can ever quite go back, whatever happens.

Yes, I can believe that entirely, and not surprising either.

I've had a couple different people say to me, as if to put a positive spin on my mother's recent death, "Well, Gordon, at least you've got your life back". Common sense would seemingly kick in and prevent people from saying something stupid like that to me. It boggles my mind sometimes how insensitive people can be.

You made a positive decision to care for your mother, you made it your life.

I had to be the one to care for my father as there really was no other choice. My sister lives in the US and I could not expect the neighbours to do any more.

So when I was speaking to a friend I used the phrase "putting my life on hold".

However unless you have cared for a family member full time I do not believe you can ever understand the situation and the emotions.

So others looking in from outside can never truly understand.

To me it is a bittersweet experience, helping my father when he needs it, but at the same time seeing his mental and physical decline, is hard to take.

But after 9 months this has become my life, not sure I can ever quite go back, whatever happens.

I've had a couple different people say to me, as if to put a positive spin on my mother's recent death, "Well, Gordon, at least you've got your life back". Common sense would seemingly kick in and prevent people from saying something stupid like that to me. It boggles my mind sometimes how insensitive people can be.

Your life was always yours. It might have taken a detour to care for your mother. But now you have more time to yourself to find what you want to do with it.

---

[quoteHappy to hear Annelie is healing. :) Such a beautiful name Annelie. :)
Kind thoughts and prayers to the three of you. :)[/quote]
Many Ann's here.
Even in the SETI boards.
Jesus's grandmother was called that as well:)

I've had a couple different people say to me, as if to put a positive spin on my mother's recent death, "Well, Gordon, at least you've got your life back". Common sense would seemingly kick in and prevent people from saying something stupid like that to me. It boggles my mind sometimes how insensitive people can be.

---

The mind is a weird and mysterious place

My GF has now moved to a short-term residence.
https://gulasidorna.eniro.se/f/fridhemskullen-korttidsboende:14510485
When she left the Kungälv hospital, the hospital staff hugged her.
Some even got tears in the eyes :)
It's true;)

A sad thing, however, is that most patients have dementia :(

This week I will try to visit her together with Tosca.
Annelie misses Tosca a lot.

Happy to hear Annelie is healing. :) Such a beautiful name Annelie. :)
Kind thoughts and prayers to the three of you. :)

---

It's my other half though, who is impossibly difficult to persuade to let me call him an ambulance etc. Last time that happened - I was right - he was having a heart attack :/ So I'll be using that as leverage next time there's a next time - a sort of... I-told-you-so leverage :)

Nope!! Nope!! Nope!! You don't "persuade" your other half, YOU as the carer make a judgement call yourself over his head, and if you think it is necessary to call an ambulance then you DO it. Then let the paramedics decide whether you were right to do it. If you get it wrong, then better to err on the side of safety yes?

My GF has now moved to a short-term residence.
https://gulasidorna.eniro.se/f/fridhemskullen-korttidsboende:14510485
When she left the Kungälv hospital, the hospital staff hugged her.
Some even got tears in the eyes :)
It's true;)

A sad thing, however, is that most patients have dementia :(

This week I will try to visit her together with Tosca.
Annelie misses Tosca a lot.

@janneseti
I'm glad you managed to speak to your mum on mother's day, and that she seemed better :)

Why do all bad things happen at the same time?

I've developed a unifying theory that might explain the phenomena both you and Mike have referred to, janne. This thread isn't the time and the place for me to unveil it - but I do hope that your girlfriend and her daughter get through the ordeals they facing and get better soon. Both have long roads to recovery but I know you and Tosca will be with them all the way and helping them in any you can :) I'm so sorry to hear the extra bad news on top of what else has happened :(

Thanks Annie.
Looking forward to your publishing of the unifying theory that might explain the phenomena.
I know that Annelie will;)

From Tosca and Janne.
Cheers.

@Chris
Thanks for the hugs :)

standards of care are mostly higher

They are, but it's things like not appearing to notice that someone in their care is walking around in urine-soaked slippers and shoes (which is how I brought my mum home from her last need to go into care while I was in hospital) when you know you can do so much better by her than that.

@Bernie
Sorry to hear about the extra health concerns you have regarding your dad. Finding the balance between what we feel we ought to do and what we know those we care for want, is hard. In some ways, the problem with my mum is the opposite of yours. She retains the vestiges of a life-long love affair with hypochondria which is probably why I try my best to avoid doctors for myself. But because she is not able to describe a concern she has to me sufficiently well for me to make a judgement call I feel I can trust, we're a bit of a superfluous fixture in the surgery a lot of the time. My son however, is so difficult to persuade to see the doctor. A lifetime of experiencing a world that says there is something "wrong with him" means he's reluctant to let a doctor find something else that is. It's my other half though, who is impossibly difficult to persuade to let me call him an ambulance etc. Last time that happened - I was right - he was having a heart attack :/ So I'll be using that as leverage next time there's a next time - a sort of... I-told-you-so leverage :)

@janneseti
I'm glad you managed to speak to your mum on mother's day, and that she seemed better :)

Why do all bad things happen at the same time?

I've developed a unifying theory that might explain the phenomena both you and Mike have referred to, janne. This thread isn't the time and the place for me to unveil it - but I do hope that your girlfriend and her daughter get through the ordeals they facing and get better soon. Both have long roads to recovery but I know you and Tosca will be with them all the way and helping them in any you can :) I'm so sorry to hear the extra bad news on top of what else has happened :(

@Mike
So nice to see you

Since it's Sunday.
https://www.youtube.com/watch?v=JxPj3GAYYZ0
That song has become the number one song at funerals here in Sweden.
At my GF's brother Kalle funeral they sang that song....

We germans call that "Gesetz der Niedertracht" law of heinousness :(
Sad, very sad.
Best wishes to Susanne.

Yes. In English that's the Murphy Law.
But our idiom is much older than that.

https://www.youtube.com/watch?v=fWf081m3Dxk

Gruß got:)

We germans call that "Gesetz der Niedertracht" law of heinousness :(
Sad, very sad.

Best wishes to Susanne.

---

With each crime and every kindness we birth our future.

Sigh...
I just talked to my GF at the hospital.
She just learned that her daughter has breast cancer:(
Susanne as she is called did a surgery only the last week.

Why do all bad things happen at the same time?
Swedish idiom.
"En olycka kommer sällan ensam"
https://www.youtube.com/watch?v=X-LIaUIwSw0

Sounds almost like my mum that now is 88 years old.
Now she doesn't even remember my name.
But she remember my phone number:)
Very strange.
She also got a stroke 4 years ago and have very problems to speak.
So you don't know if she is feeling good or bad...
Anyways. I spoke to her on Mothers Day last week and she seems to feeling better:)

Thanks Annie, however he actually has no idea what it was he thought he had made and yes, if I asked him about it the next day he would not remember.

Things have got a little bit more difficult, yesterday morning he said that he had woken up after about a hour in bed and, well that is where it gets hazy, he said "it was difficult to explain"

Took about half an hour for me to arrive at the conclusion he had trouble getting his breath, so he got up and sat in the living room, the camera I have installed recorded it as 04:41 am.

Another problem with dementia, he couldn't find the words to explain what had happened.

He seems to be OK now and is eating well, but is having much more trouble getting around.

He says he "hasn't got the strength". Unfortunately he resists calling the doctor, as like most older people he has said he does not want to got to hospital.

He survived a heart attack in November 2015 and was told he was "living on borrowed time" so I think he believes if he goes into hospital again he won't come out.

I can't and wont force him, but would obviously react in an emergency when he likely won't be able to argue.

For me it's all about his quality of life and respecting his wishes.

And big hugs to you too Annie. Of course for myself and our family, that was all many years ago now, but for you guys it is in the here and now. But in the interim medical knowledge has increased and standards of care are mostly higher. The hardest bit is knowing when to let others take over, that has to be a very personal decision and one which I never hope that I have to make.

There is still a part of him that realises when he has done something odd or strange and that must be difficult for him.

My mum has fewer moments like that than she used to, but whenever they occur, she also gets frustrated and upset with herself. Sometimes it's possible to find the right words that will make her laugh, or at least distract her but not always.

One thing she used to comment on whenever we were in a taxi, was to wonder why she kept moving her feet around the floor, and her hands on her handbag. It's obvious to me she's driving - fortunately not actually or I wouldn't be here telling you this now ;) pf which she denies all knowledge of ever having done. It doesn't happen if she's sitting on the left though, I suppose because she's never driven on the right. The trouble with trying to get her to stay on the left is - by the time I've got her in, unless I'm able to secure her into the seatbelt, which is not always possible from the angle I'm at, and got round to the other side and ensured I'm not spread over the road by a passing car, she's shuffled over to that side.

Perhaps a solution for your dad would be to establish what it is he thought he'd made for himself, then, perhaps the next day if you have time, prepare something like it to pop into the fridge ready for you both to "find" where he put it if it happens again? He may not recall the previous incident at all of course, and it won't prevent it happening in other ways. All we can do really is keep up with each additional frailty as we discover them, and you're doing that very well :)

I wanted to post the progress we've made with regards my mum's violent lunges the other day, but didn't have enough credit to do so :/ I'll try reconstruct it and put it here in case it ever proves helpful to someone else.

big hugs for everyone here in the meantime :)