One of the myriad unwelcome aspects of serious illness is having to accept that there will be certain intrusions into the privacy of your home. I’m not speaking of visits from the professionals – that could feel intrusive, but rarely does, as all the people we deal with are very aware of our time and our privacy and most respectful of the fact that they are in our home. But accepting help in the home from Personal Assistants has been very hard. Hardest on Roch. There are a number of elements at work here. Firstly, accepting help from anybody is difficult. The very fact that such assistance is necessary because he cannot manage by himself is the uncomfortable starting point. Secondly, we decided to employ two people we knew as the lesser of two evils – on the very scientific basis of ‘Better the divil you know…’ There is something to be said for it. After all, who wants to have strangers in their house? The time will come when we won’t have an option but we decided to stave off that evil day.But I’m not sure it was such a great idea. Not a working day goes by but I come home to a litany of complaints – don’t get me wrong, they are good people, they carry out the basic duties sufficiently well – but there are difficulties with both. Because they are friends of Roch’s there are boundary issues. For example sometimes it feels like one of them at least acts like he’s a guest in the house instead of an employee and because he’s a friend, it feels hard to take him to task for this.
The other (PA Number One) will be the first to admit that he has a short term memory problem and Roch and I have discussed this ad nauseam – we knew what he was like when we took him on. Endless chatter and constant questions. Instructions have to be given over and over again. This is incredibly frustrating for Roch and there are times when he says he comes to the limit of his endurance and patience. I say to Roch – we can’t complain about it now. He is a lovely person and we are very fond of him – his own fondness for Roch is clear and his goodwill towards all our family never in dispute. But he drives Roch crazy at times. At the beginning of every single shift, Roch goes through a list with him – a list of rules to follow. The preamble reiterates all the things he gets right – the absolute essentials, like showering Roch and dressing him – how honest he is, how willing. Then Roch goes over the rules. It’s like Groundhog day without Bill Murray and well, without the actual groundhog.
Here are a few of the rules:
• Try to listen to the answer to your question.
• Think before asking a question - do you already know the answer?
• You don’t have to talk all the time. Silence is golden and is very precious to me.
• The line between employer/friend is a delicate one. It’s hard to get the balance right. Try to remember you are here to do a job when you come for a shift.
• Key words are Focus/concentrate!
Jo, our Community Matron, came up with a very helpful suggestion and is referring us to the Learning Disability team for advice on how to deal with him. I think she’s right and we can’t correct his behaviour – but what we may be able to do is learn some strategies for dealing with it. I don’t think he can change. I do sympathise with Roch – you really have to be at the top of your game to spend any length of time with him. It would never work if Roch couldn’t speak and issue instructions.So that’s PA number one. What about PA number two? He, too, is a friend and has trouble with the boundary as an employee. Again, it’s difficult. He is willing, friendly and fond of Roch. He carries out the basic duties well, although we think he suffers from ‘performance anxiety’. Occasionally simple tasks seem beyond him and yet he is intelligent and can carry on a decent conversation with people (just don’t talk to other people in the house when you’re supposed to be assisting Roch with something). He seems to forget why he’s here sometimes. For instance, one morning I left for work at 7am and he was to come at 10.00am. This was just around the time Roch was beginning to find it difficult to get out of bed by himself. That day he just couldn’t do it and was waiting for his PA to arrive. Our wonderful cleaner had arrived at 9.30am and was busy in the kitchen. To his irritation, Roch heard his PA arrive and spend about fifteen minutes chatting away to her as she tried to work. I was really cross when I heard this – why does he think we pay him? Roch had to text him to say he was desperate to get out of bed. Sometimes I think he’s a bit dim – other times I think no, he’s really intelligent – he’s just in denial that he’s Roch’s PA. I have trouble understanding what’s going on. Roch is adamant – he’s annoying, he doesn’t know how to behave sometimes but Roch won’t let him go. Better the divil you know…
A good friend suggested that Roch cultivate some compassion for them as they are the ones who are challenged – “See how they turned that one around on you!” Nice one, Lerick.
There is more at work here than Roch’s loyalty to his friends and we have talked about this. Perhaps it’s about feeling in control and more ‘able’ than your PAs. Both of these men have relied on Roch in the past for advice and support and they both still benefit from this. His friendship has been really important for them. It still is. Let’s face it, Roch looks after both of them and perhaps it’s just as important for him to continue to do this. So, there exists a co-dependency in both relationships.
Now we have been granted extra hours by the LA I think we should employ PA number three, rather than extending the hours of the existing PAs. Someone who can drive maybe? Someone who doesn’t need to be looked after by Roch. That might be refreshing but would it work for him?