Jason’s Dad, Kenneth, was diagnosed with PSP in 2018. Here Jason shares their experience of PSP and how PSPA helped him.
“I first noticed something was wrong with my Dad around 2016. Nothing major just a few personality changes. My first thoughts were that he perhaps was getting some sort of dementia.
I spoke to my Mum about it and she didn’t agree with me and said everything was OK. But I think as I wasn’t living with him and not seeing him quite as regular I noticed it more.
It was only when my Mum and Dad went on a cruise that Mum really noticed a change in his behaviour that she told him to go to the doctors when he got back and that was the start of the diagnosis process.
It took nearly two years before they actually confirmed that Dad had PSP after he had had scans under a neurologist. He was first diagnosed around May in 2018 and this was the first time any of us had even heard about PSP.
To start with it didn’t really have much impact on our family because Dad was in denial anything was wrong with him and things just carried on as normal and even though he started having a few falls he just always blamed something else. But when Mum passed away suddenly in December 2018, things seemed to change more. He really struggled to cope with the loss of my Mum as we all did, but he was different, he was bitter and angry and his personality changed even more.
He received a lot of help from his OT but whatever they tried to do to prepare him for the next stage he wouldn’t accept any help. He wouldn’t use any equipment until quite close to the end when I literally had to force him to. The OT and SLT were involved very early on and later on I managed to get help from social care that put me in touch with so many helpful people. I had a wristband fitted to him that detected when he had fallen and at the start I had meals on wheels delivered every week day as this was another way of making sure someone was checking on him.
Later on I had carers going in twice a day. I had to lie to him about this and tell him it was free because he wouldn’t have accepted anything if he thought we were paying for it. I had to take over and manage everything for Dad and he became very resentful of me. He really struggled to accept he had PSP and he took all of his anger out on me.
I registered with PSPA and in hindsight this is something I should have done a lot sooner. It is such a rare illness I found that even a lot of qualified medical staff hadn’t even heard of it. If I could give anyone some advice it would be if a family member is diagnosed with PSP then get in touch with PSPA and the help and information you receive from them will prepare you much better for the future ahead.
I remember doing an online Zoom meeting (Carer’s Support Group) that PSPA held and I got so much from it. It was very difficult to see what so many people were going through but it was really helpful to see what help other people around the country were receiving from different health authorities. This gave me a lot of suggestions of what questions I should be asking to people locally to see what help we could get.
When I was on the Zoom meeting and I saw how much other family members were doing for their loved ones it was incredible and the impact on some of their lives must have been terrible. I never classed myself as my Dad’s carer, I was just someone that organised things for him and made sure he had everything in order to make his life as easy as possible. Even though this was difficult because he didn’t want any help, it was something he needed and when I said this on the meeting people was amazing and they said I should definitely class myself as his carer and I was doing an amazing job. I just burst in to tears the support helped me so much and it was amazing to discuss things with people going through exactly the same. I didn’t attend a meeting until towards the end of my Dad’s life and I wish I had done it much sooner, this is really the message that I want to get across to people, get in touch with PSPA so hopefully it can prepare you for things to come.”
