Tuesday, May 15, 2012

Don't Believe Everything You're Told


When our friend Flip and I arrived to take my Darling Husband out of the nursing home, I was told the Manager would like a few words.

She said she had no problem with me taking him out, but was concerned about what help and support I would have. I said I had asked to get the assistance package restored that I had before. She told me that would not be possible: I would have lost my authorisation for it by the act of putting him into residential care. 

‘I wish you would have spoken to me first,’ she said, ‘And maybe I could have done something. The package is Government funded; you won’t get it if they aren’t paid to provide it.’ 

‘Well, it was Friday night that I made the decision,’ I said. ‘And you’d left for the weekend. I had to take him out today, to still be in the cooling off period of our agreement.’ 

She waved a hand airily. I knew that if I’d missed the cooling off period I only had to give them a week’s notice — but I also knew that, the rate he was going downhill mentally, another week would have been disastrous for him.

‘You won’t believe me,’ she said, ‘But when you’re not here, he’s fine.’ 

I thought of the Nurse We Already Knew (friend of a friend) who works there, telling me, ‘He looks for you.’ I thought of DH himself begging me repeatedly to take him home from 'this awful place', his extreme boredom, and the lost little boy I sometimes encountered there. 

‘He’s a delight,’ said the Manager. ‘No trouble. He gets a little agitated in the afternoons, but not unpleasant or anything.' (I decided not to mention his remark, after I promised to bring him back home: 'Oh good, I'll be able to yell and scream!')

'You’ve been coming in the mornings, and that’s good. But  then you’ve been coming at night too, and that’s his sundown period, and he’s horrible to you.’

‘He’s not,’ I interrupted her. ‘It’s just that I get distressed.’

‘And we see that, the staff, and we’ve been concerned for you. But really he’s perfectly happy when you’re not here. You’re doing this for you, not him.’

‘Oh, I know I’m doing it for me,’ I said. ‘And for him too. He hasn’t stopped saying, “You’ve got to get me out of here.”’

‘You don’t realise,’ she said, ‘But they all say that.’ (I failed to see how that was meant to be reassuring, but didn’t comment.)

She told me again that she was concerned for me. ‘Where’s the rest of the family? Are they supportive? Will they come up from Melbourne?’

I reminded her that my stepdaughter had come to help me choose the nursing home, and told her the others will come as soon as they can, and meanwhile have offered financial help. 

‘It’s the day-to-day support you’ll need,’ she said. ‘Not only have you lost your authorisation for a package, but the Aged Care Assessment Team might not give it back to you. Once he’s been assessed as needing high care, they’ll be reluctant to go backwards.’

‘I have a friend who’s been an aged care nurse,’ I said, ‘And if need be, he’ll help.’ I was going to add that I would be able to hire him for a small fee, which would work out a lot cheaper than the nursing home, but she didn’t wait to hear that bit.

‘Friends might help for a while,’ she said, ‘But it wears very thin. And you’re still going to have heartbreak. You ARE losing him.’

‘I know it won’t be easy,’ I said. ‘You’re the one who told me, “There’s no easy way with this.”’

‘That’s because I know the progress of the disease. I also told you to get psychological support. Did you do that?’ 

‘Not yet,’ I said.

‘Why not?’

‘Well, my psychologist is down at [town half an hour away] ...’

‘You need the Alzheimer’s Support Group! People who have been through it.’

I nodded meekly and thanked her. (I’m sure it is indeed excellent advice, and will be looking to contact them.)

‘Change is disruptive,’ she said. ‘I know, as you don’t, that the more times this happens, the worse for him.' (In my mind I immediately cancelled any thoughts of taking advantage of temporary respite later. I'll find other ways to look after me.)

'You’ll find that going home now will be another setback for him. You’ll be fine — I’m concerned for his wellbeing.’

I gulped and squared my shoulders,  silently vowing that I would MAKE it work. She suddenly relaxed and smiled.

‘Oh, but you’re a gorgeous thing,’ she said, reaching over to pat my fingers with hers. ‘You’ll be fine. I just want you to be aware.’

I thought, but didn’t say, ‘Don’t you realise I’ve been living with him through all this, long before he came here?’

Finally the interview terminated and I went out to where Flip and DH were waiting with his suitcase.

'What kept you?' said DH. ‘Let’s get out of here!’

***

He has been telling people who phoned to welcome him home, ‘I’m so glad we escaped!’

Later he said, having heard me tell Flip I might not be able to get Government assistance any more, 'I didn't like those threats she made to you before we left.' At the time I didn't see them as threats; in reflection I think he may have been spot on — as he so often is, even now. (I expect she did believe things she said. She cited 30 years of experience, which is not to be dismissed. However I feel she is blinkered in her vision, not realising that she herself has been institutionalised for those 30 years. In any case, some things she told me turned out to be wrong.)

Home was a welcome sight to him, and some aspects were briefly unfamiliar. At first he had to be told which door led to the bedroom and which to the bathroom. But in an hour or so it all fell into place for him again. We slept with our arms around each other and the two cats cuddling up.

He was very lucid last night, and again today — much better than he was in the nursing home. I knew I shouldn’t delay any longer in getting him out of there! 

There have been moments of confusion, moments of forgetfulness, moments of apathy, and he just doesn’t have the intellectual grasp of TV shows that he once did, but this is nothing new. We enjoy being playful and loving. Basically he still has perfect awareness of who he is and where he is. 

There is no great problem about him becoming agitated in the afternoons. That's when he has his nap.

So far there has been no 'yelling and screaming' at any time.

As for the assistance package — one phone call was enough to learn that it is classed as the in-home version of residential 'high care', on a par and not a backward step; that the original assessment we received is still current; and that the package can and will be restored.

‘Are you happy?’ I asked DH last night.

‘No,’ he said, ‘I’m ecstatic.’

Me too.

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