Andrew joined Avalon after having spent many years running his own landscaping business. It was a total career change, which came about after Andrew spent a number of years caring for a family member who had been diagnosed with dementia.
Through his caring role, Andrew discovered that he could make a genuine difference to people's lives, and that he took great fulfilment from helping others.
After joining Avalon, Andrew expressed his wish to support more adults living with dementia, and this led him to Phil, a man recently diagnosed and who was looking for companionship; someone to share his interests and hobbies with.
Andrew told us the story of their relationship, which has become as much a personal friendship as a professional caring arrangement.
“When I met Phil he had not long been diagnosed with early onset Frontotemporal (or frontal lobe) dementia. As a teacher of History and Politics, and being a hugely intelligent man, this was obviously a shock to the family, but in those early days Phil was still very much himself.
I was tasked with supporting Phil to do the things he loved to do, and that meant lots and lots of walking. We covered many of the famous local walks, including The White Horse, Roseberry Topping and all through Osmotherly. When Phil walks he WALKS, and the hardest thing for me was keeping pace with him. But needless to say we enjoyed this time together massively.
Phil has a quick wit and a great sense of humour, and whether we were traversing the moors or driving to some new rural locale, we were always laughing together. Phil also has a great passion for music, and I remember in particular how often we would listen to Pop Master on Ken Bruce’s Radio 2 show, trying desperately to get the answers right, and then singing along to the songs that played.
For the first two years I supported Phil this was very much the norm for us. He was still able to do so much himself and the main thing I had to do was ensure he stayed hydrated. I think I must have sounded like a broken record because I feel like all I ever said was “would you like a drink Phil?” or “hey Phil, do you fancy a drink?” Phil was just so excited to be out and doing what he enjoyed that drinking became the main thing he would forget to do.
Alongside the walks I would accompany Phil to Silver Singers (a local choir group) and an art group (Phil is an accomplished artist too!). In those first couple of years Phil would join the groups for their activities, and I would watch from the side-lines, ensuring he was drinking enough and there for anything should he need me. But he was confident and in control, and when it came to lunch breaks he would order his own food and count out the money to pay for it.
It was agreed in these early days that I was not to provide personal care for Phil when the time came that he needed it, as his wife Rachel wanted me to be a friend to him first and foremost, and her wish was for me to just have that role and not make him uncomfortable by changing him etc.
That was the first two years, and then I began to notice changes slowly making themselves known. Phil has always been such a positive guy, but suddenly I noticed he was making negative comments. These weren’t made quietly and kept to himself, but were audible to those around him, and I knew instantly this signalled an advancement of his dementia. The first time was at a Silver Singers group. He seemed distracted, and was saying that it was “pointless”. I spoke to Phil and reminded him of how much he enjoys the choir, and he seemed content again, but from that point on I needed to sit with him at every meeting of the Singers.
Home life also started to change around this time. From having known Phil so long, I also had a great relationship with Rachel, and so we spoke about any differences she had experienced. Phil was becoming anxious, particularly when it came to food. If he was hungry he could become verbally aggressive, and if he saw somebody else eating, perhaps in a restaurant, and he was still waiting for food, he would sometimes get angry and make comments about this.
I realised that when it came to eating our lunch, it was always better if we would just sit together as a two, and I would make sure Phil was unable to see anyone else’s plates. He would eat his own food without being distracted and would not have to face the anxiety of seeing others who might have more food, or different food to him.
At this time his hydration also became a more pressing issue. Not only would Phil forget to drink, but he started to avoid it. I had to talk to him about it with a great level of enthusiasm, really encouraging him to keep on having regular mouthfuls.
Sadly a time came that Phil needed to move to a residential home. He had started to become physically aggressive at home, and it was agreed that he needed additional professional support to live well. Even more unfortunately, the first care home he was placed in was not the appropriate environment for him. Phil needs stimulation. He likes conversation, and he has a mind that likes to stay active. I knew that he needed a team of people who would encourage his talents for singing and art, and would suggest things to do to keep him alert. But he did not receive this kind of support, and I noted then that he regressed very quickly. He was not himself at all. And when I would come to take him out he was far more insular. Then when we returned from our days out he did not want to get out of the car.
The problem with this first home, was its lack of person-centred values. Phil had been used to the support of his family, or by me as an Avalon Support Worker, and that meant putting his needs and wants at the heart of everything. But here in this environment he was left to himself too much of the time, and that simply made worse his already increasing negative behaviours.
Thankfully it was agreed that another home would be pursued, and that is where Phil has been for the last year. This is a much more positive environment for Phil, and the staff of the home have values which very much align with Avalon and with Rachel.
I have continued supporting Phil every week, and have noticed yet more changes. He has lost almost all of his verbal communication skills now, and requires a greater level of personal care. Despite initially agreeing with Rachel that I would not provide any personal care, we spoke again at this point and I explained that I wanted to help where I could; that rather than making Phil uncomfortable I would ensure his dignity, and that by doing this for him I was being an even better friend. We soon found that it wasn’t embarrassing or uncomfortable at all. We know each other so well, in fact, that we find ourselves ignoring the fact of the personal care altogether and simply laughing together as we get sorted for another day out.
I also see that he gets much more tired now. He is not as able to do such long walks as we used to enjoy, but we do still walk when we can. Together we’ve found new things for Phil to enjoy. For a time we went bowling together quite a lot, but Phil has recently lost the concept of holding the ball. Crazy Golf was another activity he liked, but again is something he struggles to play.
We’ve found ways to keep his love of the arts very much alive. Phil still has a huge appreciation for great paintings, and has enjoyed being part of a group called Book Chat at the local dementia hub.
After all this time supporting Phil, I’d say the key is being aware of a person’s changing needs, whether they have dementia or any support need. I am there to support Phil to do as much as he can, and to ensure he enjoys his life every day.
I am proud to have made a difference to Phil and his family. This was called into focus when Phil’s eldest son got married. It was initially hoped that Phil might be able to attend the service, but no more was expected than that. Rachel very generously invited me along to the day, and asked if I would be the one to support Phil to enjoy it as much as possible. It is with particular pride that I say Phil managed to stay for the entire day, with me dropping him back at the residential home at 11pm. He was there for his son, and his whole family, and the part I played meant he saw every moment. I could see how much that mattered to the family, and it mattered to me too.
With dementia it’s so important to get to know everything you can about who the person is and who they used to be, and to know their family too. Once you know everything about a person, providing their support becomes sort of obvious, so that it’s not a job, it’s like helping out a friend.
If we’re going out for coffee, I’ll order our drinks ahead so that when we arrive at the café the coffee is cool enough for Phil to drink. If we’re out driving (and listening to Classic FM rather than Radio 2 these days) I’ll mimic the voice of the presenter because I know that makes him laugh. If he wants to draw, I grab a pen and paper.
I know Phil, I’m there for Phil, I support Phil.”