Hello Greta and William
Thank you very much for your replies and sorry I've taken a while to say so.
Sorry also to hear of your experiences. Did the night carer prove to be good Greta? It's terrible what happened to you and your wife William. It feels like nobody really cares doesn't it? It's shocking that the medical profession can sometimes be the least caring of all.
I did the night shift for another 2 nights this week as well. The first night, they had arranged cover but nobody turned up! Turned out the manager had forgotten to put it on the carer's rota before he sent it to her! Second time, it was last minute again and no cover.
Tonight, we have someone new from another branch of the agency. So, it will be yet another night of starting from scratch, explaining everything and then not being able to sleep, wondering what is going on down there and are they as useless as most of the carers we've had. Sometimes, I'd rather be doing it myself, as they can be more trouble than they're worth.
The day carers are driving me mad too. I had high hopes for the day sits instead of live-in care but they're not working out at all. I only trust one of the day carers (and one of the night carers). The rest are so unprofessional. Just sit around watching tv and chatting on the phone. I asked one of them to mute the tv whilst I went for a nap. Not for my sake but I was worried she wouldn't hear Mum call. She has a very soft voice, due to Parkinson's. The carer did not like it but in the end, reluctantly muted it.
After going upstairs, I realised I needed to come back down for something and to my amazement, she had turned the volume back up! When she realised I was there, she muted it again. For the rest of the day, she muted it when I was there and turned it up again as soon as I went upstairs. She also made 9 phone calls that day! One of them was made in the toilet and I could hear Mum calling. No one there. I called outside the door, that Mum was calling her. She apologised and said she was talking to the agency's 'out of hours' (it was a Saturday), about her shift the next week. I did not believe her.
Then the day sitter the next day was just as bad. I came downstairs to find her fast asleep with her hat pulled down over her eyes and the tv on. I went in to check on Mum and found out she'd had no medication for 7 hours. She was very thirsty as well. I could see the carer waking up in the next room after a while but she did not bother to come in. Her phone rang and she was chatting on it for a whole hour! After that I noticed Mum's pad was soaking wet. I could see a puddle forming between the sheet and the mattress. Her top was wet as well. I called the carer in to help me change her and the bed. She said we should wait for the drop-in carers, as they said they were coming early. I said no, we needed to do it straight away. Right decision, as the drop-in carers didn't turn up for another hour.
She was here today and just as useless. I found Mum thirsty, hungry and in need of her medication. The carer carried on lounging, watching the tv, whilst I helped Mum. She also refused to give Mum her medication when she wanted/needed it this morning. Said she couldn't have it until 8 am. When I questioned her about it later, she said other patients on that drug (for Parkinson's) take it every 4 hours (I'd already instructed her on her other visits to give it to Mum as soon as she is awake and able to swallow). She doesn't know what she is talking about. Every Parkinson's patient has an individualised medication regime. Like all the carers, she has had no training in Parkinson's whatsoever. They all think Parkinson's is just a tremor. That drives me crazy as well. They tell Mum to stop stiffening up when they are doing personal care! As if she has some control over it! They try and force her fingers open as well (when washing her hands), which is extremely painful. She has Dystonia in them and they are permanently in spasm (contractures). A carer noticed they were more flexible yesterday. That was because she'd had a rolled up bandage inside for a whole night, so they were slightly open. She said to Mum that she was opening them for her now, as she had learned to trust her to be gentle. Utter crap! Mum has no control over the contractures! They are all idiots!!! Of course, they don't know what Dystonia is, even though I explain it to them and none of them are interested in researching any of Mum's illnesses. I show them an excellent booklet from Parkinson's UK, explaining how to care for a patient with Parkinson's (aimed at nurses in hospitals). They're not interested in reading it though. Of the ones that do seem interested, they just flick through a few pages and lose interest. Hopeless!
I complained to the agency Manager yesterday and told him I wasn't happy with the majority of the carers. I asked to have a different day sitter. He said nobody else was available. All the other day sitters had their regular clients. He did say he would talk to the carers in question (and all the night sitters who fall asleep - supposed to be waking nights. Another major problem) but I said not to if they were going to continue coming here. It would just cause bad feeling and then we'll have to live in an atmosphere on top of them being useless.
We're still waiting for a Personal Health Budget but that could take 6-12 weeks. I bet it will be even longer. When we finally get it, we'll be able to change the agency. The one we wanted is fully booked now. I don't know how we'll decide which one to go for, without a personal recommendation from someone and I don't know anyone else with carers in our area. It would be good to choose our own and employ them direct but we'd need a big team for the package we have, to allow for illness and holidays too. Would be very stressful and difficult to find a good team of carers. There are introduction agencies as another option.
I still feel like our home has been invaded, even without the live-in care. Sometimes, I feel like screaming for them all to get out of our house!
By the way Greta, we are on our second agency from the CCG/CHC. The first one was even worse! The CHC team are always less than sympathetic if I have a grievance. They would not be happy if I asked to change agencies again. They make me feel, like I am the one causing problems. That's why it would be better to wait for the Personal Health Budget.