Every word Sean Donal O’Shea speaks in this video might have come from my mouth.
I’ve watched it many times and I cry every time. Not from sadness, but from witnessing another human being’s deep connection and compassion in the face of a disease that defeats the spirit of many. I am full of admiration for those who live with dementia, just as Sean Donal O’Shea is inspired by his mother. He and I and others like us are are fortunate. There are millions of care partners who are tortured beyond measure by dementia; they are unable to find any gems amidst the tragedy. Those of us who find healing and purpose suffer less. We’re lucky.
Special thanks to dementia care advocate and blogger Kate Swaffer, one of the founders of Dementia Alliance International and herself a person living with early onset dementia, for sharing this video on her blog, which is where I discovered it.
Because Sean Donal’s accent may be difficult for some to understand, I’ve included a transcript of the video below.
My name is Sean Donal; I’m from Waterville, County Kerry, and my mother is Debbie, she’s 58 years of age and she has early onset Alzheimer’s disease.
I think at the start I was very impatient with Mom. Her mobile phone used to go off in her pocket and it would ring us. And we used to try to show her how to lock it, no way could she comprehend it at all whatsoever. And this was before the diagnosis and were kinda going: “there’s two buttons you have to press.”
And you feel fierce guilty after those things, like you’d kind of be getting angry with them, and saying “why can’t you do that?” And now looking back on them you say God…
I remember one day we were going back to the beach, and it was a real foggy day and I had to ring my girlfriend saying I don’t know where I am and that really gave me an awful fright. Imagine spending your whole day like that…
A few years ago when she was able to speak, we would chat and she would answer me back and they would be proper chats, you know, they wouldn’t be just chatting about the weather, we’d talk. Even now, if there’s something on my mind, I’ll go in there and I’ll say, and you’ll see the eye go up, or she’ll give a smile.
When we were young she used to say “goodnight, God bless, I love you.” And like boys don’t say that crack at all and after the diagnosis, I started saying to her, I’d tell her I love her and that she’s an inspiration, which she is.
Me now and me 10 years ago, it would be two totally different people altogether. Previously I worked as a block (brick) layer. I went to college and I got a degree in Applied Social Studies and Social Care purely because of her.
I told her that I passed and there was a smile there and I knew inside she was doing cartwheels and everything, but she outward couldn’t express it like.
This is something I want to do for the rest of my life.
I accepted it a long time before my father did and I suppose it was easier because that’s his life partner, his wife. To see that being taken away it must be very hard, and he denied it for an awful long time, I know that. But in the last few years, he’s become the main man now, you know, what he says goes and he’s a great carer now.
Two or three months ago, she used to give the kiss, but that’s gone now. And she used to stroke the hand, but that’s gone now too. You don’t notice the day-to-day things, it’s only when it’s spread out and looking back over it.
When there was live music playing, she’d get up and she’d start dancing, she wouldn’t care who was watching, and she’d pull you up to go dancing and I remember I’d be going “Just stop you know, just leave me alone.” If she could dance now, I’d dance on TV with her you know.
I’ve never ever in my life seen anyone as brave and courageous as her. She’s just unbelievable. They broke the mould after making her you know. She’s unbelievable.