Susan, Jack, Leslie and Eileen’s Story

Susan, Jack, Leslie 1

Susan (PA): “I have been a full time PA for both Jack (dad) and Leslie (son) who has autism, since 2015. Eileen (Jack’s daughter and Leslie’s sister) is my employer and Power of Attorney for both her dad and brother.  The family all live next door to each other in a small township called Heylor consisting of 8 houses in the North Mainland of Shetland. Heylor is 35 miles away from Lerwick, the only town in Shetland. The area is typical of many others in Shetland and is served by single track roads. This can make it quite remote in the winter months. I live at Sandvoe which is 9 miles away.  I have known the family since I was at the Urafirth school with Eileen and Leslie; the school roll at the time being 36 pupils. My primary teacher from that time is also now the relief PA for Leslie and Jack, covering my leave periods and training.  Before being a PA I had many different jobs from chef work, care at home, to supporting young adults with disabilities. All my previous experiences and skills came into their own when I became a PA.

Jack and his family never felt the need to use service providers for Leslie when he was younger, but as Jack got older and began to experience health problems, he accepted that support was required. Jack and Leslie had been on their own for many years and they were used to their way of doing things. It was of the utmost importance therefore, that I carried out my role with sensitivity and with the set routines that worked well for them. I feel that Leslie has adapted well to me being around. I have gradually introduced small changes for his own independence. We now have a number of things we enjoy doing: growing things in the greenhouse, craft, taking photos, and not forgetting walking, which we do twice daily. One of our favourite activities is making a picture diary of all the things we do together.  Also, before Jack’s sight deteriorated, he had always kept a daily diary. This is now our job. We compare Leslie’s to Jack’s diary that he has kept since 1992. It is a window into the general activities and tasks that used to be carried out in and around the home, for example home improvements, which were large jobs which Jack did himself. Ruby (Jack’s late wife), had a love of gardening and they gradually turned what was a ‘kale yard’ (vegetable plot) into a beautiful area that was “weel kent” all over Shetland. The diary also contains stories about family and friends that are no longer with us, the daily weather report which is always a favourite topic this far north and treasured memories of things like the CB Radio (Citizens Band Radio). This was used locally as an essential form of communication, long before the days of mobile phones! Leslie responds well to hearing these stories and it is very interesting for both of us.

Susan, Jack, Leslie Speech 1
Susan, Jack, Leslie 2

PA work for me has been the best move I’ve made yet. The fact that it is tailored to suit the families involved gives total job satisfaction. Having known this family for most of my life, I feel I know what they would do in a situation. We have regular contact as well as a private Facebook page with all the family members involved. This has brought the family closer, as everyone can be involved and make suggestions. Jack’s immediate family all work, so having this communication enables us to make adjustments to the package as they arise. Seeing Leslie looking relaxed and responding to our activities is very gratifying indeed. I feel like every “peerie” (small) thing I do makes a difference. We have fantastic cover for when I take holidays and this works well because the relief PA has different ideas, giving Leslie more things to occupy his time. Another familiar face gives us all reassurance and a smooth transition for Leslie.  There’s nothing I don’t enjoy about being a PA – apart from possibly the fact that I feel a little isolated. Shared experiences and advice from other folks that do PA work, I believe, could enhance our job and give us more confidence. I would definitely recommend becoming a PA. The day to day running of the home, introducing interests and activities for myself and Leslie as well as liaising with professional bodies is such a great variety and makes my job very interesting.”

Eileen: “Before Susan came to help us I could never really go anywhere and was worried about the future. Mam (Ruby) did all the care for Leslie before she died, she was so supportive. After Mam died I really didn’t know what to do and as dad’s health declined this really got me down. I began to think that I might have to give up my work to look after them both, but I felt this wasn’t the best solution for Dad and Leslie or what I wanted to do.  Leslie didn’t have any contact with services as he is happiest at home and it was so important to have someone who he knows and trusts to help him out. Having people unknown to Leslie would make things worse.  I had no idea where to start and I panicked a lot. Susan was a good friend of the family and she approached us suggesting we looked into receiving direct payments. As soon as Susan mentioned how direct payments worked we all knew it was exactly what we needed, and it was the answer to our prayers. A Citizens Advice Bureau (CAB) adviser became my mentor through the setting up of the direct payment. I felt overwhelmed and Advocacy Shetland advised us too. An accountant deals with the payroll, if it wasn’t for this support I wouldn’t be able to cope and the cost comes out of the budget we get.  Just 3 months into the job, Leslie had a fall, breaking his knee very badly.  For the first time ever he had to go into hospital in Aberdeen. He had never been on a plane or even out of Shetland. Dad also had to undergo an operation the following spring so having Susan to support us was so important.  The support we now have is wonderful; a complete transformation in our lives, Susan feels like a family member. Susan and I did worry that it might change our friendship, but we agreed that communication was key and to talk about things as they came up. I would definitely encourage people to think about employing a PA, but would suggest it is someone you trust. It also helps to speak to others who have already employed PAs.”