As I sit with Seonad Dason in the British Library café it doesn’t take long to notice that she is a determined, bubbly lady. Before we delve deeper into her experience of memory loss, I think about how it might feel for me, similarly an outgoing person, forced to change my lifestyle because I suddenly stop remembering in the same way I used to. The thought scares me, but Seonad’s positive outlook is inspiring.
Unlike the familiar and often progressive causes of memory loss such as dementia and Alzheimers, it was a single incident eight years ago that changed Seonad’s life – a stroke.
We start talking about the tea I’m drinking, it’s nice but Seonad, who moved to London 33 years ago from Ireland, tells me it’s not Barry’s tea. She glows as she remembers the fine taste of it and tells me I’m missing out. Though, the topic of tea does not break the ice for what followed. All those small great things many of us take for granted come to mind, like remembering what someone looked like.
Seonad, 53, was on her usual bus journey home when she began to feel unwell. She describes it as strange feeling and says she knew something was not right. Two days later, she had a stroke and ended up in hospital for three weeks. Other than the usual symptoms, such as a drop on one side of her face, extreme fatigue, problems swallowing, and slurred speech, Seonad quickly realised that her memory had been impacted too.
“The way the stroke affected my memory has completely changed my life. I had a thing with the future – I wouldn’t remember it unless it was on my phone. I had a very good memory before that. Remembering days, dates, faces and appointments became so difficult.”
When Seonad explained to people that she couldn’t remember things like conversations, some would say it was normal to forget things.
“They’d say ‘we all forget things’ but this was something different, I could feel it. It affected everything. I’d forget people’s faces and would need to see them a few times before I remembered them the next time. I forgot about a concert I wanted to attend, even though I set a reminder.
“When it’s new to you it’s scary. I used to have to leave notes on my phone as well as wrapped around my phone. In the beginning, I needed to remind myself of everything including appointments.
“I’d forget the name of characters at the end of a book if I could focus enough to finish one, and I wouldn’t realise I was watching a programme the second time round until I was near the end. At one point I had written a list of things I needed to talk to my GP about, but when I got to my appointment I forgot I had written the note.”
Seonad, who lives alone, went from managing the front desk of a busy hotel five days a week to working just four hours a week. Now, in the eighth and “best year” since the stroke Seonad works four days a week. She says that she would love to work full time again but instead of pushing the boundaries too far it’s better to do things that work well at the right pace.
She says accepting change is the key to progress but admits this was hard for her.
“I used to resent having to do things differently, like making notes on my phone, or gathering my things for a holiday a week before leaving and putting them in one visible place.
“I used to exercise and I loved to walk but suddenly I struggled to walk down the street, I wouldn’t have the energy to take the tube so would have to take taxis. I had to adapt in every way, which wasn’t easy, like changing my role at work, having a cleaner at home, which was inconceivable to me. But it really helped to let go of the stress. Once I accepted these things, I felt better.”
Seonad’s friends have been kind through her transition. She said she would ask them to make her laugh because it is better to laugh than to cry.
“This one time I went to the supermarket with my friend who often helped me. I had taken coupons with me but when I got to the cashier I had forgotten about them and then walked off without my friend but luckily I realised quite quickly and turned back.”
Seonad tells me that it is important for her to encourage others to keep going even when they’re feeling frustrated. She said people are kind but they don’t always understand the knock–back this has on someone’s life, which is why she has signed up as a Cuimhne Champion to support people experiencing memory loss.
“Memory loss is so invisible. People look at you and think you’re fine but you’re not and that’s hard to explain to people.
“I know that there are different causes but I feel like my experience can really help others. My fatigue did not help with my memory loss but I kept building up slowly. I used to get myself out there by hook or by crook. I’m a massive rugby fan, so I go to matches whenever I can.
“Not being able to remember what I’m supposed to do tomorrow really upset me, it still does sometimes, but having different strategies has really helped. I’ve created new habits, a new norm, I’ve had to. Now I make a conscious effort to look behind me before I leave somewhere to make sure I haven’t left anything. I plan everything more, which is different for me as I love spontaneity.”
Seonad tells me she has seen three plays in the last week including Seven Letters, which had a character experiencing memory loss.
“Memory loss can be soul–destroying. It was nice to have a play where you can identify with the character. I find that watching plays can stimulate discussion, which helps with memory.
“My advice would be to have patience and to be kinder to yourself. I might be momentarily annoyed, or confused, but I let it go, move on and try to improve the next time.”
Since accepting and adapting to the changes in her life, Seonad is better than ever after her stroke. This last year she has been to Europe numerous times and continues to make incremental improvements. See Seonad’s list of tips below for people experiencing memory loss and see more information on Cuimhne programme including our memory loss training workshops.
Seonad’s 8 tips
- Repetition is the keyfor memory. Do something again and again until it feels like a new habit
- Keep appointments in your phone
- Sign up for text reminders for health appointments help
- Look at your diary a week ahead
- Leave things in the same place such as keys
- Make a habit of checking behind you before leaving somewhere to avoid leaving important items
- Keep trying, keep moving forward, it does get better
- Keep a routine