Dear All,
Thanks for your kind posts, I haven't ever posted here much, despite reading constantly for 3 years and finding great support through other people's stories, but in the past 24 hours I have found it enormously comforting to have people out there who understand. My work colleagues and friends are all very sympathetic, but unless you really know what this all involves, it's hard to empathise.
Dad moves into the new care home this afternoon. Mum went there yesterday afternoon to sign contracts and to look at what is to be his new room. She met dad's designated nurse and his designated carer - and already that makes me feel better - that we have a point of contact and that dad will have a chance to build up a 'relationship' with some individuals. Mum also met several other carers and nurses and all were so kind to her. She also spoke to some of the residents of the EMI unit, and there were some real characters who were really chatty. She said that she drove away with a smile on her face, and this is the first smile in ages.
We have written a lengthy report of dad's experience. It has now gone to the following:
The Care Commission in scotland
The healthcare group who manage the home
Alzheimers Scotland
The local MP
Dad's social worker
Dad's GP
Dad's consultant
Crossroads (locally)
Help the aged
Age Concern
Action on Elder Abuse
And I'll send it to more places as I think of them. We aren't going to send it to any media. Part of me would like this 'nursing home' splashed all over the national newspapers and investigated by Watchdog, but Mum would absolutely hate to have any media attention at all. She wants to maintain Dad's dignity, and doesn't want his situation pored over by all and sundry. Of course I have to respect that.
You've all been so kind and supportive. Some individual notes:
Bruce- I completely understand where you are coming from. I do see there being a place for 'restraint' when restraint is needed for the safety of the patient. In fact if we had visited the home and found dad with a waist strap on a couple of hours a day it would have been fine. perhaps one day dad will also have to use a waist strap like your Jan. It seems so sensible.
The problem was the 24 hours a day thing, and the manner in which it was done. Dad had a strap around his chest. He was in a 'reclining' chair with his legs up. He absolutely hates having his legs up - he needs to feel the ground under his feet. So when we arrived each time we found him essentially lying on his back, with the strap around his chest, and curled up in a sort of foetal position with his knees tucked under his chin. Wriggling and wild eyed. We didn't recognise him. He was obviously kept like that so there was no way he could get his feet down to stand up. We told the senior carer present that dad must not have his legs up, and the 'carer' shrugged. The next day the same happened, and the same carer was in the room. We told him again, and reminded him that he had been there the day before when we spoke to him. He just shrugged again.
Dad is in the moderate to severe stage of AD, he has become very very difficult to keep still recently and he has very bad mobility. This (amongst other things) led to us having to use a care home. the reason dad is agitated and always stands up is because he thinks he needs the toilet. The AD drug trial he has been on for 3 years (the one that turns your urine blue) also causes bladder irritation - and so you do have to go to the toilet more often. It's a comfort thing for him. I understand that this is a problem because when he stands up he often falls over. But the care home prevented dad EVER going to the toilet, even though he isn't incontinent. This was torture for him. If you are in the same room as dad, when he stands up you can reason with him - you can say 'Look Dad, you just went to the toilet 5 minutes ago, so you don't really need it' and he will sit down again. He only lashes out if you try to restrain him. I would have understood the carers restraining him with a waist strap on those occasions that there was nobody around to be sure he wouldn't fall over. But for the majority of the day he was in the communal living room, in this hideous reclining chair, and surrounded by another 15-20 residents in chairs, and a couple of 'carers'. There was no need. And not to let him even go to bed at night....inexcusable. We found that he wasn't even always in pyjamas at night. Just strapped in this same chair with his dressing gown on. There was a pressure pad on the floor by his bed - in the room he never got to use, to alert carers if he got up, but they didn't let him use it.
but Bruce, you are right, there is a place for proper restraint used responsibly.
Vall - I'm so sorry you had to read my post. My Mum cared for Dad for over 10 years, to the point at which she was at breaking point. And yet she didn't ever want to give up. She and dad are very proud. Despite dad's illness he was always immaculately turned out, with polished shoes, smart trousers and a smart shirt, neatly cut and brushed hair, shaved perfectly every day, bathed daily etc etc. he has more expensive deoderant and 'perfume' than me or mum! She couldn't bear the thought of him not having her one-on-one care. But of course unfortunately she got to a point where she couldn't provide safe and adequate care for him. And we know that somewhere there is a place where people can do that for him. The place he moves into today looks really promising. I will let you know how he gets on and hope that I have some positive news for you.
Lesley - you are right, it is the right word. When I was telling a senior staff member at the 'care home' what all our complaints were I said to him: "We have placed Dad in this care home to receive care. And instead he has received abuse." The staff member looked resigned, and asked me if I meant that. And I said yes I did, categorically.
Elaineo2 - thank you, it's great to hear from a carer - and I hope I find people as kind as you at dad's new 'home'
Alfjess - you are right, I am worried about all the other people left there. When we have sent the report to all the places mentioned above, we said we realise it's now too late to help dad, but that we want to be sure those remaining there have someone to speak up for them. It makes me weep to think of others there suffering in this way.
And the photo idea is a nice one. I hope I never have to look again at the awful photos we took - but we may have to provide them.
In the meantime, today mum is filling dad's new room with nice photos of us all together. There's one of myself, my husband and Dad, just a year and a half ago, in barcelona. We took Mum and Dad on a trip there - my husband pushed dad in his wheelchair all over the cobbled city, with dad giggling. It was a wonderful trip, if exhausting. Dad didn't take it all in, but I'll never forget him on top of the Pedrera, one of the most beautiful Gaudi buildings in Barcelona - we got him out of his wheelchair on the roof and stood him up to look at the crazy architecture - it was a blue blue day and everything was sparkling and he looked so so happy and I asked him if he liked it and he said "It's just wonderful". Lovely memories.
thanks again
Lesley
