Memory Walk – Fiona Marie Booth

Fiona Marie Booth, who is currently living in Portlaoise in Co Laois, is a member of the Dementia Carers Campaign Network (DCCN) which is supported by The Alzheimer Society of Ireland. Fiona’s dad, Richard, passed away last December after a long progression of Lewy Body Dementia, and she will be taking part in Alzheimer’s Memory Walk in his memory.

Last December, I lost my Dad, Richard, after a long progression of Lewy Body Dementia. My Dad lived an incredibly full life, and every moment with him was a treasure. He was a kind, loving and magical person, and many, many people were touched by his light.

He was so generous with his spirit and gave his whole heart to everything he did. He was a teacher, a gifted athlete, singer, musician, actor, conductor, and more, and was fearless in expressing his gifts and talents with the world.

We had a very special relationship, and he was a great source of confidence and encouragement since I was a young girl. He always wanted me to watch how he lived his life and every day was a lesson.

I’m glad I was able to be by his side to support and comfort him as his illness progressed. Dad was not “checked out” of life in the months or years leading up to his passing.

We had many great conversations, some days it was like the old Dad was back, and he’d be reciting lines or singing the lyrics of old songs, and he always knew the name of every single plant and flower in the garden, without missing a beat.

We often danced together in the kitchen, went swimming, and to the golf course, all of the little things that made him feel normal and sparked so much joy in him.

 

I think it’s important for people in the community to remember to be kind and compassionate. Dementia oftentimes is an invisible disease, and it manifests differently from person to person. Sometimes people are fighting a battle you know nothing about, and that also goes for carers and family members who are witnessing and suffering through the dark times.

The final years of my 20s were the hardest years with Dad’s illness progressing almost overnight. Being young and caring for a parent with such a complex form of dementia was profoundly impactful on my life in ways that are hard to imagine or explain for anyone who hasn’t experienced it.

Sometimes it felt like life was on pause. It was hard to go too far from home or go out and have fun in the same way as other people my age, without an underlying feeling of worry or guilt. It can be a very heavy weight to carry, and nothing prepares you for watching a loved one suffer. Nothing prepares you for having to look after a parent.

At the same time, it has shaped me in so many ways. It made me strong, couragous, more compassionate, more fearless and more grateful for all of the little things in life.

 

Understandably, there are a lot of misconceptions and stigma around dementia. For those who are affected by it, it can feel difficult to talk about with friends, as you don’t want to unload such a “burden” on anyone, and it also comes with needing to educate people, so it can feel easier to keep things to yourself.

I would encourage anyone in their 20s, 30s or any age with a loved one living with dementia, to not be afraid to speak openly and honestly about what you are going through, so others might have a better idea of how to support you. Giving words to your experience educates people and ultimately builds connection and community, which is exactly what is needed, and you never know who might be going through something similar, or who might go through it in the future.

If I could express one thing to people, it would be to remember that a person is either living, or they are dead. There is no such thing as “dying”. As long as you are alive, your senses can be delighted. If you know someone who cares for or has lost a loved one with dementia, try to be sensitive to that fact.

Comments like “he had been unwell for a long time anyway” or “he wasn’t really with us” almost degrade the life that has been lost. My Dad was so much more than the disease that took up residence in his body.

He deserved to take up space in this world, despite his illness, and he did so with grace, love and light right up until the end. Even though Dad had been diagnosed over 10 years earlier, his death was still extremely sudden and shocking.

His sense of self did not depend on the deterioration of his mind or body, but it was his being that was very much present and alive, and still is.

On Sunday, September 20th, just a couple of weeks after what would be Dad’s 67th birthday, I will be taking part in the Alzheimer’s Memory Walk, in memory of him. I will be walking through the fields and woods right outside our family home, where my Dad traditionally took me out walking when I was young, and where many years later, I took him most days to get his legs moving and to free his mind.

Whenever we went walking, we’d stop at a nearby stream to throw stones in, and he’d say in his finest Deep South accent, “not a cloud in the sky”, even though there most definitely were always clouds in our Irish sky! I knew I’d look back and cherish those moments, walking with Dad.

I would really encourage people to get involved and take part in Memory Walk on the day, donate if they can, and help raise awareness about dementia during World Alzheimer’s month!

For more information and to sign up to Alzheimer’s Memory Walk is taking place on Sunday, September 20th – For more information, click HERE

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