Begging to GO HOME.

[Rageddy Anne]

Being assessed for a week's respite...

The Care Home assessor came, a sweet little person carrying a clipboard. I had specifically said Please, no clipboards or he'll freak out.

For all that hubs can be terribly confused and frantically anxious, he is also able to pick up clues and be surprisingly tuned in to things we think he'd be better not knowing...So, a week's respite in a Care Home needs to be introduced with GREAT CARE, and I'd devised a cover story not far from the truth. "I need a few nights probably in hospital, for some tests regarding my very bad cough, and as no family member can come and stay with him we all think he should have a little holiday, and there's a nice place very like a hotel where kind people will understand if he forgets a few things".

This is a man so anxious that he constantly sticks so close to me that I'm becoming used to going to the loo with an audience. But for the assessor, he put on a truly Oscar winning performance of an amusing, slightly confused old gentleman very well able to cope. She was impressed, I think. Half an hour after she left he was in tears, begging me to help him die, as he cant stand any more. But he finally agreed to leave it until after dinner....by which time he'd forgotten.

Most of the family think he doesn't know what's going on and it won't be a problem taking him for respite. I know better.

The strongest card in my pack is that he is mostly, but not always, aware of who I am, and that he needs me to be well enough to help him. So, for that reason, looking after my health might just persuade him to agree to his " little holiday".

I hope we don't see any more clip boards.

 

[Grannie G]

Couldn`t you scream when the `professionals` don`t listen. I imagine your stomach turned over when you saw that clip board Anne. What a plank that woman was.

 

[Rageddy Anne]

Couldn`t you scream when the `professionals` don`t listen. I imagine your stomach turned over when you saw that clip board Anne. What a plank that woman was.

yes, a plank, I like that! At the end she asked us both if we'd considered more respite for later. She also handed him some brochures, the top one titled Dementia Care Homes. So much for handling patients with tact!

Seeing GP on Monday to review meds. Meanwhile, he can be distracted watching me decorate the Christmas trees.

 

[keegan2]

Just been reading all your posts on this subject and would like to thank you for posting. I am having the same problem other half wants to go home. He is taking lorazapam which calms him down 3 times aday 1 mg. The doctor said to try and wean him off (been on it 2 weeks) because it is addictive so I cut out afternoon dose and have been suffering the consequence of it, the questions , the I am going now, in and out the house yesterday it drove me up the wall. Now I am thinking do I care if he is addicted to the tablet at least life is a little more bearable, will try one more day cutting out afternoon dose if I have another bad day tomorrow may see the third tablet back. The worse thing is even if i cut one they then want me to reduce another. The alternative tablet phenergan is doing nothing. In three weeks of chaotic life at least I got a stair rail and bath rail fitted.......Roll on 14th December when I am supposed to return back to work without any care plan in place......I think I am doing it again going on about my own problems. Don't worry only do it on this forum otherwise no one would come to visit me ..........

 

[Ann Mac]

For goodness sake - 'plank' is such an apt description for that woman, Anne! Got fingers crossed that the meds review on Monday helps, hun xxxx

Now I am thinking do I care if he is addicted to the tablet at least life is a little more bearable . . .

Hi Keegan - you know, I used to think it would be absolutely terrible, that nothing would be worse than seeing my Mil 'drugged up' and zombified - but now I've spent a long time watching her so distressed and scared and miserable, and do you know what? I think that there are far worse things than a reliance on medication xxxxx

 

[keegan2]

I agree. The thing is the tablets are making him into a placid person, little more clingy and it stops him blowing constantly (still does it but not as much) which is so irratating. Cannot think of anything easier to solve this problem.......

 

[Grannie G]

I told the consultant I would prefer my husband`s distress and torment to be eased by medication if it meant the challenging behaviour was reduced and I could keep him at home for longer.

He agreed.

 

[Delphie]

I wish my mum didn't need medicating, but without she's tormented by paranoia and delusions. With medication, she's content and enjoys various activities and visits from her family, which would have been impossible before as the abuse she directed our way was just too much... There are possibly some negative impacts on her physical health, but the levels of stress she was constantly dealing with before can't have been good for her either. At least this way she has a much better quality of life.

 

[Rageddy Anne]

The assessor came from the Care Home; she was described as the nurse in charge of that wing, and it was the Home manager who assured me there wouldn't be anything like a clipboard. Possibly the nurse hadn't been told, but either way, it seemed unimaginative.

The Care home doesn't like Respiradone, the manager said they believe in managing the patients with understanding and tact. That's probably easier when staff can go home between shifts, unlike a 24/7 carer at home with the patient for days and nights on end. I pay someone kind and tactful to keep my husband company approximately 30 hours a week, which includes one overnight, but for the rest of the time it's " me and my shadow", so he gets instant help all the time.

A friend has told me that her husband, in a Care Home, was better after being taken off Respiradone, and put on a low dose of Trazopam and sodium valproate. Maybe I'll ask the GP about those.

Mine was a bit better last night watching Strictly Come Dancing. That's worked before too. Pity we don't have more cheer on TV and less grim reality.

 

[Grannie G]

Mine was a bit better last night watching Strictly Come Dancing. That's worked before too. Pity we don't have more cheer on TV and less grim reality.

I bought Dad`s Army and Only Fools and Horses DVDs for Dhiren Anne, as well as those of his favourite Andrea Bocelli. We played them continuously when TV wasn`t appropriate.

They gave him peace but sadly didn`t stop sundowning.

 

[Rageddy Anne]

I bought Dad`s Army and Only Fools and Horses DVDs for Dhiren Anne, as well as those of his favourite Andrea Bocelli. We played them continuously when TV wasn`t appropriate.

They gave him peace but sadly didn`t stop sundowning.

There don't seem to be as many innocent fun programmes now, or maybe have we missed them.

We play Andrea Bocelli in the car, ( lovely voice)but indoors our CD player has been playing up, probably thick with dust! Thank heavens for Classic FM, except for the commercials. I know, they make it possible, shouldn't complain..

 

[CeliaW]

Anne, don't know if you have a desktop pc, laptop or tablet but you can find lots of older programmes on YouTube. Depending on the age of your pc/tv you should also be able to play them on your TV screen if you link the two together with a HDMI cable. This link shows how plus how to connect older systems. Apologies if telling you something you already know /do! http://www.howtogeek.com/179392/beginner-geek-how-to-connect-a-laptop-to-a-television/

 

[Rageddy Anne]

He's not a zombie, he's aware!

Just felt the need to record what hubs just said...." What was it I used to do when I was alive?"
So many people see him confused, and think he can be written off. Not so, he can understand his situation and communicate his frustration. Even professionals often seem to forget these are PEOPLE they're dealing with. Recently the GP addressed me more than my husband at an appointment. Another, less senior GP is much better, and never forgets it's my husband's illness.

 

[Rageddy Anne]

Anne, don't know if you have a desktop pc, laptop or tablet but you can find lots of older programmes on YouTube. Depending on the age of your pc/tv you should also be able to play them on your TV screen if you link the two together with a HDMI cable. This link shows how plus how to connect older systems. Apologies if telling you something you already know /do! http://www.howtogeek.com/179392/beginner-geek-how-to-connect-a-laptop-to-a-television/

Thank you, Celia...I'm a dinosaur in that department, but keep hoping some one will offer to help. Older son has said he will.

 

[Essie]

I can vouch for DVD's - Mum had a couple of favourite box sets that she loved and we would just put them on all the time really, she would watch some telly but I think the DVD's were much better as the repetition made it easier for her to follow things and if she dozed off and woke up she could just 'join in' with it all again.

Like GG I bought easy to watch stuff - there's lots on Amazon and once you type in one name there will be suggestions of other titles of a similar nature - one of Mum's (and my) favourites was 'Oh Dr Beeching' from the same team that did Hi De Hi - it was just a really 'nice' thing to watch - gentle humour and a lovely feel to it - hard to find on current TV output.

Also we have a NOW box - it cost a tenner and we didn't sign up for any extras so that was it and there's loads you can see on there too - you can re watch today's programmes on the main channels and older stuff too on some - Ch4 is especially good at older progs, they have a good 'back catalogue'.

And Youtube like Celia says is amazing - there is so much on there to see and all for free. Hope older son can sort you out very soon.

And I love the 'plank' description too....sums it up perfectly, just a shame it was needed..... I am pleased respite is progressing though Anne, you do so need a proper break.

 

[Rageddy Anne]

Thanks Essie, that's kind. Never heard of the doctor Beeching one.

MAJOR MOAN WARNING....It's been sixteen days on my own now with a very very unhappy husband, not a minutes respite except when he sleeps, about five hours at night. Wonderful regular helper's been poorly, glad he didn't share his bug with us! My throat's closing up with having to shout answers to shouted questions, and my back and knees are protesting about having to go up and downstairs about forty times a day because he can't find things that are in front of him.

And then I think it could be worse, don't have to struggle with hoists, and occasional faecal mistakes seem to have stopped along with reducing the Respiradol. Bodily he's fairly fit, though things like shower temperature is always too hot or too cold, so I wonder if pain thresholds are sometimes seriously compromised by Dementias.

Today the GP has fitted us in for another look at meds..so hoping and praying he can find a way to calm the terrible fears and perceived outrages and dire dangers my poor man lives with.

I can't take pain killers or have a glass of wine because I'd fall asleep, and I have to stay alert at all times...

The lesson, I suppose, is to find ways to get help quite early on....before caring becomes too much for one person. I thought the family would find time, but ..........of course, they have their own lives....

 

[Essie]

Oh Anne! I do so wish I could offer something more useful than just sympathy but that I give you in bucketloads. I do hope that GP can offer something in the way of better meds that will give your OH some peace of mind and therefore you some peace - roll on respite, you desperately need a break - now you have gone through all the set up for respite could you make it a much more regular thing? Or could hubby go there for day care a couple of days a week? Just thoughts.... I think you are spot on about arranging levels of care that might seem a bit much to begin with but very often quickly become a necessity - not just through decline but also through exhaustion on the part of the carer - what you can manage for the first few months cannot be sustained over years without a reasonable level of support - I have always urged people to 'say yes to everything' the more support you have from the start the longer your own reserves of energy will last and the greater the quality of your own life, which is hugely important.

I hear what you say about family having there own lives to lead but you are giving so much Anne - do consider involving them a bit - even just until your regular sitter returns, even, I would say, if you have to insist, you need rest......

 

[Rageddy Anne]

Mmmmm, wise words Essie, and I'm soaking up the sympathy like a sponge!

Yesterday afternoon I found out that lovely helper has been signed off for another week by his doctor. Must admit to some disappointed tears. Now I won't be able to pack husbands respite bag with him out of the way...there isn't a second's privacy, he's like a limpet. Care Home naturally want name tapes on everything. Arthritic hands, sewing so difficult. And he'll want to know why....as there's nothing wrong with him. He told the GP that and glared at me when I mentioned that he'd been unhappy the day before.

THE GP TOOK HIM OFF RESPIRADONE AND WANTS TO TALK TO THE CONSULTANT, WHO WE HAVENT SEEN SINCE HIS DIAGNOSIS. SO I GUESS THE ANGUISHED MORNINGS AND AFTERNOONS MUST CONTINUE. GP WILL RING ME ON CHRISTMAS EVE. HAPPY CHRISTMAS.

In spite of it all we still manage a semblance of a social life, and had a nice lunch out yesterday. But not being able to leave him, I got home DESPERATE for a wee! Small things that used to be so easy.

 

[Cat27]

That's awful re the GP Anne.
Would iron on name tapes be easier?

 

[nitram]

"Would iron on name tapes be easier?"

>>>RIVVITS<<< are both easier than sewing and more permanent than iron on.