It sometimes feels as if there is no end to it

 

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Sometimes it feels as if there is no end to it.  We just can’t see it not happening.  It is perpetual.  Constant recruitment.  Until N gets a full time person that they are going to take on the job as a life-long role then this will always be the case.

We spend hours and hours sorting out the rota as someone has gone on holiday or is about to leave, or needs to change their hours that week.  Finding new PAs especially at the last minute is an arduous process.  Sending out emails with an updated Job Description to Universities contacts; Deaf Jobs UK;  through Facebook yet again.  It is a regular occurrence and part of our lives.

How does that make N feel?  She woke up last week in the middle of the night having a bad dream that she had gone into a Care Home.  She signed to me – what happens when you are not around?

We work  hard at keeping her spirits up and keeping her resilience going.  She goes down a slippery slope at each change of PA.   We are there to push her back up that very steep hill.

Then there is the effort of interviewing.   Being nice to people who come round and giving time and effort to each of  them – N does it all on her own with her PA.  She has set questions to ask on her communication aid but then also there is lots of casual chatting and signing.   She has to organise her calendar to make sure she is at home that day to recruit.   It is not a simple process and she seems to be going through it every couple of months.

She interviewed a very  nice, pretty, outgoing girl with great signing skills the other week called A.  We all thought she was fab.   A was going to start shadowing last week as part of her induction.  The Thursday afternoon she cancelled saying she was working late the day and would not be able to come that evening.  “Ok” we texted back “we will see you on Sunday as arranged”.   We got a text back on the Friday cancelling the Sunday.

How does that make N feel?  Shitty and angry.  Who does she take it out on?   Me of course.

It is bad enough being dumped by school friends who decide that they are too cool to be friends with a disabled person around the age of 9, 13, 15, 17 or older…..   It is bad enough being discriminated against and facing negative attitudes as part of your life.  It is hard enough remaining strong when you require people to wipe your bum for you and get you out of bed, brush your teeth, brush your hair, put your make up on etc etc.  And N requires PAs with signing skills on top.  But then to be dumped by PAs before they have even started must be incredibly tough.

Lauren wrote her blog on her experiences – http://laurenfordham.wordpress.com/2014/06/18/when-pas-move-on/

How do we support each other and more importantly how do our young people support one another?

We had friends round for a BBQ.  Our 4 young people were connected through the knowledge and insight into each other’s challenges around “independence” – there was a clear commonality.  As parents we are going to try and support our young people to keep up the contact and have a night away, somewhere accessible,  to talk and be together.   As parents we will continue to get together , have a stiff drink and share experiences to keep ourselves strong.    Yet, what are the alternatives?

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2 thoughts on “It sometimes feels as if there is no end to it

  1. My brother has complex needs to and also uses a communication aid but in like N he also has LD. He just moved into his own home. A day I had begun to think I would never see. He’s been there for 10 months and so far has had seven different PAs. He has coped well with it but I do wonder how long he will tolerate it. There are lots of us in the same boat I we have to be strong for each other. I can’t see any other answer sadly.

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  2. Recruiting your own PAs will always face challenges. The only answer to this is letting an agency manage it for you. Clients will have occasional changes of carers throughout a year however you won’t be seeing the hardships of recruitment process yourselves. Those clients who have opted to let care agency look after them said that it felt like a stone have been lifted off their shoulders…

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