Wednesday, May 14, 2014


Things unravel.

I think I could write a book about today!
But I am exhausted.......been sleeping this evening, which I needed.
So, no book - just a few notes.
Bill went off to the day centre at Deerswood.
I had much planned. I went through all the huge pile of official papers that has accumulated, with the thought that I would deal with each one of them later.
Bill had always sorted papers into various box files and I have done the same.
I sat up on the bed, surrounded by all this parapheranlia.
There were phone calls too.
The specialist nurse at Crawley hospital phoned about my surgery next week.
I had mentioned my chronic pancreatitis to each of the doctors I have seen in the gynae unit. But since then I have learned that maybe it is a bit more complicated than that. I explained that the GP wanted me to have an MRI scan.
Later the nurse phoned back, having talked to the doctor I saw on Monday. They think it would be better that Dr Karen take on my complete case and that she would arrange a scan.
And then I was phoned by somebody else at the hospital. Dr O had already been busy. He arranged an endoscopy for me at the end of next week.
I might have followed this up - but the day went very wrong for me.
The phone rang again. It was Deerswood. They would bring Bill home early because he had been upsetting everybody with his noise.
To say I was distraught is somewhat of an understatement.
I felt like my life had unravelled before my eyes.
A specialist day centre had given up on my husband after 4 hours. So they brought him home to me so that I can continue with 24 hour care. If they can't cope - then how on earth can I cope?
It was awful, awful.
I just hated those 2 women who brought him home. Can they only cope with people with a very simple form of Alzheimers? Do they not take into account the different forms of dementia?
I still don't know what is happening next week, but I have changed my mind about what might be best for Bill.
Wendy social worker has been extremely busy today and I haven't spoken with her.
She will not be pleased with Deerswood I am sure.
I want to ask her to help fix up a different plan now. There is an organisation that can supply people to come and stay in the home of a dementia person for a few days.
This is what I want for Bill. He liked that idea.....not that any idea stays secure in his brain anyway.
But we also talked about whether he would prefer a man or woman and he did say that a woman would be best - would remind him a little of wife or mother maybe.
As luck would have it I was expecting Bronwen round - she is a trained adviser from the memory assessment service.
She is lovely and was just what I needed. She first calmed me and then we talked of coping strategies when he makes a lot of noise.
She can see beyond Bill's noise and likes him. She can see the sweet and gentle and intelligent man that he once, that he still is.
People who spend time with him normally can see that. The day centre at Deerswood clearly didn't have that time.
But my goodness it doesn't make coping with the noise any easier and I have been practising for many months.
Bill's brain has also had a tiring tense day. Maybe it is always tired and tense.....despite his protestations that there is nothing wrong. I must concentrate on making life as easy as possible for him.
The noise has been awful this evening and I have asked him to be noisy more quietly!
It is hard because my brain and my body feel tired and tense too.
I really need time without Bill to ease things.
But I love him and maybe I don't want to put him through the stress of today again. Deerswood day care wouldn't have him back anyway.
And I would feel very uncomfortable sending him to the residential section on Sunday. And I have a feeling that the offer might be withdrawn anyway.
So tomorrow Bill's care must be organised. I still can't go along with his thoughts that he would be fine on his own. Maybe we don't actually need anybody here full time - after all for a good part of the 24 hours hours Bill is sleeping and not needing any help.
In fact he needs very little practical help.
But I don't like the idea of him being without support with such a confused brain. His concepts of time and place can be very muddled.
Once again this evening he asked where Jamie and Mam are. He then worked out with me that he was in England and they are in Thailand and, once again, he seemed quite sure that we were in Thailand this morning.
Actually I am wondering that this might be a cover up. He was never good at admitting his mistakes and always tried to wriggle out of it. Maybe saying we were in Thailand this morning is a way of wriggling out of the first mistake.
Next time I will have a different strategy. I will just tell him that they had to go home - no trying to help him get things straight. It's a pathway to tension.
Maybe Deerswood have created a turning point for me. I hope so. Though it is so hard not to protest about constant noise. And very hard not to object to him making exceedingly loud chicken noises in Asda because he likes the echoey sound.
I want everybody to love him. I hate it that they find him difficult and hard to be with.
I hope I have more positive news tomorrow evening.
Being positive and strong is just something I have to do - despite feeling rotten. That little trip to Asda exhausted me.
I have a lot of fear for the future - but it is not the future right now.
One day at a time.