Sean's story

I’ve experienced health issues since I was 25, when I developed a rare blood clotting disorder that left me largely bed bound and in need of a wheelchair for five years. I fought through that period, recovering sufficiently to go on to university and become a counsellor. I had a varied and hugely satisfying career where I was dealing with complex cases that challenged me, and over time I also taught and shared my expertise. I loved my work, it suited my interests perfectly – engaging and communicating with people, getting to know them and supporting them. 

In 2018, I had a stroke. Physically, it didn’t do too much damage – it affected my eyesight and speech slightly – but mentally, that’s where I felt the impact. For the next two years, I knew something significant had changed. I noticed lapses in my memory, my focus wasn’t as sharp as it once was, my personality started to change.

I used to have an exceptional memory and I could easily recall the finest of detail workwise.  I was always a very patient, empathic person, and I was finding I was getting very frustrated and impatient with people and that wasn’t me at all. 

At first, the doctor told me it could be depression - but I knew it wasn’t that. I’d worked with people with depression for many years and I just didn’t feel depressed. I really had to push for further tests because of my age. I had the test with the doctor, and I failed that quite badly in some things. I had to name ten animals and I only got two. If you were to ask me that thing in a normal conversation, I would probably have got 100 but in the test your brain just gets mixed up. In 2020, when I finally got the diagnosis of vascular dementia it came as a real shock, I was 53. 

I was in disbelief. Over the years at work, I’d learned a reasonable amount about dementia, in theory. In practice, it’s different. Nothing can really prepare you for being told you have dementia. I was offered a year of support following my diagnosis but when that came to an end, I was left wondering ‘well, now what?’

My life had changed. I used to be immersed in work, getting really involved with in-depth theories and situations and there’s no denying I miss those days. It has affected my confidence a lot too, 
Before my diagnosis, I was an outgoing person and loved meeting people. These days I can find it overwhelming, preferring to stick with close family who understand my situation. I’m conscious of losing the conversation thread or becoming unsteady on my feet – it crosses my mind that due to my age, people may think I’m drunk because they don’t associate dementia with younger people. 

Stacey tells me I can be quite sharp at times, a bit dismissive or hurtful. I never mean it, and she knows that. She understands. She is my rock, and she supports me daily. We both enjoy the outdoors and I like to go fishing when I can. We also love to travel, so recently we decided to combine the two and bought a motorhome - proudly naming her Doris! This offers us a bit of freedom as we can pack up and head off whenever the fancy takes us. Planning a trip gives us something to look forward to. We both find it relaxing, we get to see the sights and like to give people a wave as we pass – it’s a bit of escapism and lets us switch off for a while.  

We also decided to get a pet as we felt it would be good for me to have that kind of interaction. Bella, our dog, has become an important addition to the family, she brings a huge amount of enjoyment and comfort – and can come with us in the motorhome. I’ve also developed a much closer relationship with my brother – which is a great thing. Also, I now find it easier to mention to people when I first meet them that I have dementia, it just saves them wondering what’s wrong if I happen to get a bit confused. I don’t carry a big flag around saying I have dementia, but we’ve found that when we’re open, people are very accepting. 
 

My diagnosis was a traumatic time. I was so angry, everyday was a battle with it. I received counselling through Alzheimer Scotland that helped me reach an acceptance. Now, sometimes the dementia fights me and other times, I fight it. When my wife sees a glimpse of the old me, she’ll say, “oh, hello! I haven’t seen you for a while!” and we have a little laugh. It just reflects the journey we’re on, I suppose. I’m so grateful for Stacey. I’m grateful for everyone in my life, it’s a hard thing for them to experience but we’re adjusting and finding new ways to do the things we always enjoyed.  

My advice is to be determined to live your life and do the things you want to do. This isn’t just something that affects older people and when you’re at a young age, like me, there are lots of things to consider. And certainly, lots that you still want to do. Make sure you get out there and do them, like I have with my motorhome. I think it’s important for stories like mine to be shared, to highlight that with the right information, guidance and support, there’s no need to feel that your life is over. 

Dementia is one thing about me, it’s not everything.