In despair!

[WIFE]

I imagine I'll probably need TPers just as much when he's in a nursing home situation! The situation will be different, in that I will be getting sleep and not having the constant wearing down of trying to get meds in to William, trying to get him dressed, trying to get incontinence pads changed when he won't allow me to etc. but I'm sure there will be a whole new set of concerns to take their place! Especially as time goes on.

A very hard decision - and the caring does not cease just because the loved one goes into a NH. I still find myself wandering around the supermarket looking for little tidbits and sweets to take my husband plus anything else I can think of to stimulate him. I have to say that on difficult days I am still left to coax meds in when the drugs trolley does its round and most days I attend to washing, shaving and catheter care if I arrive in time.

At least eventually the sleep routine returns to something like normal and I find I manage to sleep for six/seven hours now instead of the three/four fragmented (if I was lucky) before.

My thoughts are with you at this next stage - it is all hard and stressful.

 

[LadyA]

Ah, the meds - here, any that can be hidden in food or drink, have to be. Then it's a game of chance whether he will eat /drink it or hide/dispose of it if he doesn't want it! His appetite isn't great at home and he refuses to drink anywhere near enough. Washing he won't allow me do, and changing incontinence pads is extremely difficult often leading to an aggressive outburst from him. That's mainly why he has to go to full time care. As long as male carers deal with him, he's a perfect gent.

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[winda]

Hoping you have a peaceful day LadyA.

 

[LadyA]

It's peaceful enough after a bad night Winda - William's up since 4! Can't get him to eat much today though. He says someone called John would cause trouble! No breakfast. & very little lunch.

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[winda]

Exhausting and worrying. You can't help but worry about someone not eating but I know that there is only so much you can do to persuade.

Hope you had a better night.

 

[LadyA]

Only up once last night! And took his meds this morning! His asthma is getting really bad - that's normal for this time of year. He ate more today too. A banana for breakfast as usual, then a little bit of scrambled egg for lunch. I've done curry for tea, so we'll see how that goes - and there's a fresh cream chocolate cake, which he stuck me for in Tesco this afternoon, for dessert! €5!!

It's just the stress each day of wondering - will he take his meds? Will he drink anything? Enough? Could there be something I can do to get more fluids in? Is there some way I could persuade him to let me change his pads? etc. etc. - these are the things that wear me out. The care assistant has been away since Thursday. I've tried, unsuccessfully, to get William washed - so he hasn't had a wash since Thursday. I did get him sort of half wiped down with Bath in Bed wipes - but not a thorough job. He wouldn't have it, and was starting to wind up aggressively, so I had to leave it. To be honest, the sooner he can be got into full time care now, the better, although another part of me is dreading it.

 

[truth24]

Feeling for you, LadyA

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[LadyA]

Feeling for you, LadyA

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We've all got dealing with this rotten disease in common Truth24. And things could be a heck of a lot worse! My hair just about stands on end reading what some have to cope with.

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[winda]

Sending my continued support.

 

[LadyA]

Well, so far, today has been one of those days that confirm how much I can't cope anymore on my own! We were supposed to be at the car repair place first thing - some glitch in the immobiliser which means that every so often it won't recognise the key, so the car won't start! Anyway, William picked this morning to wake up in a "mood ", and refused to get dressed or more important, let me change his sodden pad, which was hanging around his knees! Took nearly an hour to persuade him - luckily, I had got his socks off last night. He HATES not having anything on his feet! So I finally persuaded him to come get some socks on - and started at the top with his vest! Then he wouldn't eat or drink. His Ebixa, mixed in his morning drink is still sitting beside him; I'd say he's had about 1/4 of the dose. He's eaten an enormous chunk of cake though! And we got the car done.

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[truth24]

I wonder how much longer you can cope.

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[LadyA]

I wonder how much longer you can cope.

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Well, he goes in for a week's respite care next week, and hopefully, it will only be 3 or 4 weeks after that before he goes into full time care. It worries me when he won't drink - he's only had half a small glass so far today - and when he won't take his meds.

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[truth24]

That doesn't sound too good. I read somewhere that it is v important for AD sufferers to keep up their fluid intake.but ow to make them drink when they so opposed to it?

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[Rathbone]

Hello LadyA. Another nightmare for you - my heart goes out. Have you actually heard anything more re the placement? I'd keep on their tails; the more of a thorn in their side you can be, IMHO, the more chance they will get on with it. The time for you (and William of course) is now. Your own health must be suffering - carer stress by the bucketload. Wondered if ice cubes or ice lolly would be acceptable? You will have spoken to the GP if there is some "magic" alternative form for the meds. Loving thoughts your way. Shelagh X

 

[LadyA]

That doesn't sound too good. I read somewhere that it is v important for AD sufferers to keep up their fluid intake.but ow to make them drink when they so opposed to it?

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He's had one more glass since. Not a thing I can do.

 

[LadyA]

Hello LadyA. Another nightmare for you - my heart goes out. Have you actually heard anything more re the placement? I'd keep on their tails; the more of a thorn in their side you can be, IMHO, the more chance they will get on with it. The time for you (and William of course) is now. Your own health must be suffering - carer stress by the bucketload. Wondered if ice cubes or ice lolly would be acceptable? You will have spoken to the GP if there is some "magic" alternative form for the meds. Loving thoughts your way. Shelagh X

Ah, Shelagh - the solution to go in the drink is the magic alternative!! He won't take tablets! All his meds have to be hidden in stuff - but it's getting harder to do. Funny thing, in the nursing home when he was in for respite, they just gave him the tablets - and he took them! A uniformed nurse, you see.

And because of them having to be hidden, he gets mousse (counts as liquid) in the afternoon and icecream (also a liquid) in the evening. If he'd eat jelly, he'd get that too, but he won't. He has slept almost all day - this does not bode well for tonight.

It's only been less than a week since I heard from the PHN that it should be hurried along, and I should have approval within four weeks - and this weekend just gone was a Bank Holiday weekend here - they seem to come thick and fast around here!

 

[2jays]

Water melon!!

That's what I say

Well its more polite than

Fluffing %^#^*#

isn't it

Keep needling your CPN - or whatever their title is

I'm just hoping for your sake that after the respite week....full time care will just be a room change rather than dear William having to come home and then go back into full time.

xxxxxx

 

[Rathbone]

I echo that 2Jays. Please God let them see how much more sensible it would be all round - even if they have to do it because it makes budget sense. Who cares, so long as it happens. LadyA - of course I knew you would be on it already - just clutching at straws for you. This will be the most peaceful night ever to be sure. Definitely. Definitely. Loving thoughts. Shelagh X

 

[winda]

I too hope that it won't be too long before a parmanent place is found for William.

Meanwhile, I hope you are continuing to keep up your spirits.

I hope your day is as good as can be.

 

[dottyd]

It just shows how far down the pecking order you are Lady A when you threatened to put him in respite and not collect him and someone who probably has no personal experience has the gall to turn round and say that you can't do that!

Who can't.

Where's the law that forces someone to take care of another person.

There isn't one!