My friend arrived with her son half an hour late and looking slightly frazzled. “Sorry I’m late – no PA and Lorraine’s bath took longer than I’d planned”.
“What happened to the PA today?” I asked knowing quite well what the answer would be.
“She cancelled yesterday and I couldn’t find anyone else at the last minute”.
I gave her that look of empathy and understanding with a slight eye raise – the sort of look that only someone with the same experience can give without getting a slap across the face for being patronising.
I felt a sickening feeling of having been in this familiar position umpteen times myself.
Stepping in as the ‘Back Up Emergency PA’ seems to be on my job description. I was that person on Monday. I got the text through from J about 830am. Sorry Anna not well. Going to look around and see if I can get child care sorted. Won’t be there at 1030. Will let you know as soon as I can find anyone.
J is our PA co-ordinator (supervised, directed and advised by the Mere Mother) and so had the insight and knowledge to text other PA’s to see if they could step in rather than rely on the Mere Mother. But no joy. Too last minute and our team of PAs all have other jobs that they go to unless they are on the rota. I am the Emergency Back Up PA and also the Director of the whole show. I am like the Conductor of the orchestra but, with our family, nothing is in time and we are all out of tune.
Luckily Monday happened to be one of my working at home days. That also means a day of hanging out the washing on the line/bringing the washing in 10 minutes later after it had started raining/putting another wash on/quick look on Facebook/cleaning up the breakfast things/looking at the muck on the carpet and resorting to getting the vacuum out/quick peep at emails. All this and more in the, getting- longer-by- the -minute job description. Feels like lunch time already but it is only 915am.
I texted back slightly gritting my teeth I am at home today so will sort out things with N. See you when you get here.
G is our new South Korean volunteer PA and not really ready to be the emergency back up by any means. I explained the situation to N. You have got me as PA until J arrives. Is that ok? Do you want me to bring your computer down and we can both work at the kitchen table? Do you want to get on with the Power point for next week for the Kent parent forum and I can help if you need it?
N signed to me a thumbs up which means “it’s fine”, and then she gave me one of her I Don’t Need You looks.
I brought down the computer and set it up at the end of the table. N wanted to first get on with her essay set by Bedford University on life in a local institution. She is preparing for her next stage in life. University. She had researched a few days ago and found the Meanwood Park website. The website had lots of articles written by people who had survived life with no choice and no control. She got stuck into the essay whilst I went back onto my own computer to see if any emails had popped up in the last 30 minutes.
We carried on like this till 130 when J arrived having dropped off “the sick child” at her mother’s house. I secretly hoped she had not brought in any of “the sick child’s” germs with her. I breathed a sigh of relief when she came into the kitchen and there was joy in my face. Feeling thankful she had made it I quickly forgot she was 3 hours late and was just grateful to see her. N was delighted too to have more attention than I had been giving her as I am only the Mere Mother who is desperately trying to earn a living in between being the voluntary Emergency Back up PA. The Natural Support. That is in my job description too.
How many times has this happened? Many times – too many to count. The worry is what happens when N leaves home and who is going to be the emergency back up then?
Are Social Care really concerned with who is the emergency back up? Has the social worker even thought about it before or even cared? Like my friend said to me today, she is unable to hold a permanent job down, she had to give up her course to be a physio, she has a bad back from all the lifting – but what other choice does she have? I need to have paid work as we have 6 hungry mouths to feed and University accommodation to fork out for. I could not hold a 9-5 job down and at least being my own boss allows me the flexibility that I need.
I know only too well about having to be back up PA and about being the only one to step in when my daughter is unwell. We have had a personal budget for the last three years which has made a big improvement to our lives because now I don’t have to rely on agencies to provide uncaring, unreliable care! The fact that the LEA now pay into the personal budget means that we have more hours to offer and Amy goes into school with PAs who know her very well. One of the difficulties we have is getting school to work with “outsiders” and understand how crucial the PA role is. All agencies need to value the PA role more and not see them as just “carers”. I also find recruiting and retaining staff hard as I do like to get students because they are keen and need the experience, as well as the money but I need to get PAs who are in it for the long term as I feel it takes a good 9mths to a year to really understand Amy, particularly how she communicates, and the way forward for her life. I try to build a team of carers who support each other and I am working on the role of co-ordinator who meets up with PAs once a month to discuss what is working and what is not and how to improve things. We still need to include Amy in this more but like everything it’s continual work in progress. It’s really great to read your blogs, I think I could learn a lot from you. Tara
thanks so much for the comments. We are all learning together. There seems to be a gap in “Family Guides to Employing PAs” and perhaps a group of us can write one together?! There are familes around the country on a similar journey working hard to keep our young people safe, happy and emotionally well. We don’t want to have to reinvent the wheel and by coming together and sharing our experiences I feel sure this will help us all.
We also have a co-ordinator role. It used to be mine and although I sort of oversee it one of PAs does extra hours at home on top of direct contact with Nadia. She gets in touch with all the other team members to check their hours each week and if there are any changes the PAs come to her (I did ALL the trouble shooting before). Every week she sends out a new calendar. Part of the difficulty to doing it at home is including Nadia but like you say it is work in progress. Each PA works out ahead of the week what they are doing with Nadia, booking trains together, concerts or whatever.
It is a minefield Tara and it really sounds as if you are doing a great job. Keep in touch.xxx