And so it goes on...

jugglingmum

Registered User
Jan 5, 2014
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Chester
My mum had been very puffy when doing any walking for a while, and she was then diagnosed with atrial fibrillation, and apparently this was causing the breathlessness so always worth a check up. I wasn't aware that heart issues like this manifest as breathing issues, and it was only when I got a chance to ask her GP that I understood.
 

Mudgee Joy

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Dec 26, 2017
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New South Wales Australia
Thanks @Grahamstown .
Yes - definitely needs a good check by the doctor -!! My husband had a heart attack 18 months ago - was breathless and disengaged - and it was only when they put him on the machines at hospital that the doctors said - oh well he's having a heart attack !! I hadn't thought to check his pulse..
I didn't know it could be low key like that !!
So check everything and look for the advantages - best wishes mudJoy xx
 

Grahamstown

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Jan 12, 2018
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Hello @jugglingmum & @Mudgee Joy I have just picked up the phone and told him that I am going to take him to the doctor for a check up, and then follows this conversation, why? because you seem to have trouble with your breathing, oh I am doing that on purpose, so you don’t have to do it, no and I don’t want to go to the doctors. So I am giving him a bit more time because I don’t think it’s life threatening, and then I shall just do it. I have my annual checkup this week so can make an appointment then and just take him!
 

Grahamstown

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Jan 12, 2018
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I think we have entered a new phase because he doesn’t want to go out to his usual luncheon place, even if I go with him, because "it’s too difficult to get there and back", which is quite amazing because just a few short weeks ago he wouldn’t have missed a day. So he has been having little walks around the nearby fields and doing very little other than look at his iPad and doze followed by lunch at home then more resting. This morning I had to get up early to take the car to the garage for a bit of bodywork, a consequence of the last time I followed his instructions to ‘pull up a bit closer’ in the hospital car park back in August, and bumped into a concrete pillar. I caught the bus back home and had a ‘moment’ when I realised that this once capable man would not be able to do this. He can’t drive, he could not find his way, could not find the bus stop and generally plan and organise the job. I realise that I am ridiculous even trying to write all this down but it relieves the pressure of pain. When he goes out he doesn’t do his coat up, put his gloves on or wear his sunglasses in the strong sunshine and cold weather. As so many people have posted on TP, it’s the moveable symptoms that get you as you have to readjust to the next change. Funnily enough, it is a bit easier for me because I don’t have to worry about him getting lost now and he is so happy at home and I can leave him for a short time. The dark evenings are keeping him at home and not going walk about to the pub and if he has enough short walks during the day he is ok apart from all the toilet visits and door checking. So I await the next change when the lighter evenings come. He is keen to go on another cruise and looks at the photos a lot which reminds him. Interesting that he can remember the cruises but not other short breaks.
 

jugglingmum

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Jan 5, 2014
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Chester
I haven't seen much. Popped down the road to meet spamar and now sitting in jesus college waiting for dau to finish interviews.
 

Mudgee Joy

Registered User
Dec 26, 2017
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New South Wales Australia
Mmm the changes can be subtle and there can be slight improvements - I know I get a quizzical look from friends if I say my husband isn’t bad - but that he doesnt ever know what day it is, and would gets lost a block from home - and can’t help me much as he is unfit -and can’t plan a thing... but happy and generally amenable to most things - so take the bright side if you can - eg I’m not as cranky as I was when I didn’t know “why he left the B tap running!’
Mudjoyxxx
 

Grahamstown

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Jan 12, 2018
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Here are two sufferers who seem almost identical, I could have written that @Mudgee Joy it’s quite a looking glass world and I feel that it is starting to affect me, bound to really. I try hard to concentrate my mind on other things and at the moment here in the UK there are plenty of those! Going out for lunch with friends today so I am looking forward to that.
 

Grahamstown

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Jan 12, 2018
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Well there’s more than one way to go out to lunch with friends. There’s the straightforward putting your coat on, getting into the car and driving to the rendezvous way. Then there’s the PWD way, “I cannot go I just don’t feel like it, I can’t listen to the chat,” and cancelling the lunch. He reckoned without our friends though. They asked if could they come over for coffee because they would like to see us, which they did. I then suggested we go round the corner to have pizzas at the pub for our joint birthdays, our friend’s today and mine on Friday, I am 79 this week, so we did and it was great. My dear husband put his card in for the tab, and when we went to pay he had actually given his bus pass. They know him there and watch out for him so had taken the card, he then found the right card with help and they then asked him if he knew his pin which he proudly told them! The guy was shocked and told him he must never say his pin, he just wanted to make sure he knew it, and he replied, ”oh I must remember that”. My heart lurched at the thought of yet another thing to guard against. He only has the one card now with limited funds so it wouldn’t be a total disaster, but even so this is another new low in his life. He is now exhausted by his socialising mode and gone to bed. This is a typical Alzheimer’s episode.
 

AliceA

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May 27, 2016
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Hi, there. We seem to be at similar stages, some bits 'worse' some bits 'better', both words are false because they change places so often. Some days are clearer than others for no good reason.
I cannot go out and leave mine, we go together or not at all. Sometimes I forget and and then a pang of surprise when something cannot be done.
Today we looked at a care home who may offer day care, it was bright and sociable, he was too.
Then I think does he need this, am I jumping the gun?
You are right by the time we adjust, something has shifted on or even sideways!
I too have organised a bank account with limited funds. Thinking of you
 

maryjoan

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Mar 25, 2017
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South of the Border
So often I read the words on here that I sat down to write myself.

It's been a bad week for lots of reasons, but it was very bad when my daughter took him to the nearby town - he is not her step father as we are not married, and he does have a daughter of his own, although she is not in touch very much at all.

My daughter got back quite upset, because although he never speaks to her in the car - he did today - he was quite offensive in his criticism of her driving - bearing in mind he has lost his license. She has not got the experience of dementia that we all have, and did make a comment along the lines of 'at least I take you out which is more than your own daughter does' - I can see her point.

He went into his room after they got back, and stayed there, whilst I was quite upset as my daughter had come over 30 miles with a 2 yr old, just to take OH to town.

I wanted him to leave, go away, go anywhere but here, fed up with it all, and then I sat and thought about it - it is just another step down in this disease. Need to think and re group and work another way.

Still fed up though.........
 

Grahamstown

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Jan 12, 2018
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How awful for your daughter and you @maryjoan I feel despairing about these dementia problems with people who aren’t used to this, because it cannot be helped and the learning curve is too steep for people who don’t encounter it often. It took me long enough to stop getting furious with the idiocies of the disease and disregard them. Even so I get so frustrated and cross at times. The other thing that irritates me is well meaning people who say you need to do this or that. My friend said to me today “you need some respite “, so I asked her if she was offering and we both laughed. It’s easier said than done and I don’t think he would agree and is not quite in the stage when I can act. It’s a tough call.
 

maryjoan

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Mar 25, 2017
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South of the Border
How awful for your daughter and you @maryjoan I feel despairing about these dementia problems with people who aren’t used to this, because it cannot be helped and the learning curve is too steep for people who don’t encounter it often. It took me long enough to stop getting furious with the idiocies of the disease and disregard them. Even so I get so frustrated and cross at times. The other thing that irritates me is well meaning people who say you need to do this or that. My friend said to me today “you need some respite “, so I asked her if she was offering and we both laughed. It’s easier said than done and I don’t think he would agree and is not quite in the stage when I can act. It’s a tough call.

It is the toughest of calls - my OH has a stoma and bag that he has never learnt to manage and does not understand. We have carers who deal with it - I can if I have to, but I find the whole things very distasteful - I can deal with most things, but not this.
He is sat at this very moment doing his endless puzzles with his shirt hitched up above his bag.....for all to see, I cannot get him to be bothered about the fact that other people do not want to see it - because, of course, he is not him any more, he is a poor shadow of what he once was........
 

AliceA

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May 27, 2016
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Re. Respite, the best for me is early morning, it is quiet, I am warm and peaceful! I can think, reflect.

It is the opposite of what others think I need.
I was scolded today by a loving daughter that said I was becoming isolated and needed to get myself and her Dad out more. True he does need to meet more people.
It really is hard nigh impossible for people to realise how ones energy is zapped by continual monitoring, helping, explaining and smoothing the way.
Yes, part of me is content to do it because we are still together, but the other is just too tired to do that and socialise as well.
I was told a break was needed, but how is a different matter. Looking at the place we saw today I felt how lovely but how expensive! They have the two week rule. Ouch!
 

Grahamstown

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Jan 12, 2018
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84
East of England
Re. Respite, the best for me is early morning, it is quiet, I am warm and peaceful! I can think, reflect.

It is the opposite of what others think I need.
I was scolded today by a loving daughter that said I was becoming isolated and needed to get myself and her Dad out more. True he does need to meet more people.
It really is hard nigh impossible for people to realise how ones energy is zapped by continual monitoring, helping, explaining and smoothing the way.
Yes, part of me is content to do it because we are still together, but the other is just too tired to do that and socialise as well.
I was told a break was needed, but how is a different matter. Looking at the place we saw today I felt how lovely but how expensive! They have the two week rule. Ouch!
Oh my goodness how true. I have just got exasperated with endless going to the toilet, checking the doors, saying he must go to bed every half hour from early evening on. So tonight I didn’t try to keep him up and let him go to bed early. It won’t last because it really is too early and he won’t be able to sleep. We are supposed to be going to the cinema tomorrow evening for a live transmission which I booked a while ago feeling confident but now I am apprehensive. I really want to go and these days never go out, so I shall just have to press on and take him. He will probably enjoy it? He has completely forgotten about our lunch already.
 

AliceA

Registered User
May 27, 2016
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Sod's law! I fought for live broadcasts at our nearest cinema, won and can't get to them! Enjoy if you can.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
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New South Wales Australia
Hello all - @AliceA - I like your phrase “monitoring, helping, explaining and smoothing the way. “So so true. But I insist all of you and @Grahamstown do more to achieve respite - or let me call it instead - “some husband free time !”! !! You need it and just don’t felt guilty - work at it and get some - it took ages for my husband to like his local “day care” but I found a small one that calls themselves “Tuesday friends’ - now Tuesday are my favourite day !! The socialising is good for him and the isolation is wonderful for me -
To start with, I would sometimes stay with him for an hour - (guilt) but gradually the “carers” shooed me out . It’s great - please do look for some “husband free time!! - (I love Tuesday’s) - mudjoy xx :rolleyes:
 

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