Sands of time

Our columnist Norrms McNamara reflects on what it’s like to live with dementia

If you can imagine the tide coming in, wave by wave, and watch the sands shift every time this happens, you will see different shapes, hear different sounds, and the scene in front of you is so very different almost every time. Well, if someone said to me: “what’s it like to live with dementia every day?”, then this would be a good way of explaining it. Some would say that might apply to everyone at some point in their lives, which is true, but there are certain differences, and what I mean is this.

Dementia really is unlike any other illness, and just like the tide, it comes in waves. What I mean is that sometimes people living with dementia can present themselves (as they say) as being just like anybody else, talking, walking and acting just like the next person, but then, sadly, things can change very quickly and with no warning.

When I was little, I was always told the seventh wave was always the biggest. Is this true or urban legend? Probably the latter, but I believed every world of it when my gran told me, and it does remind me of how everything can be quite okay, the waves lapping quietly on the beach, and then suddenly as in a crashing of a bigger wave, dementia arrives and mixes everything up in the swim, not unlike becoming suddenly confused with no warning.

As the biggest wave crashes and recedes, the pebbles that were there, the seaweed or sandcastles, are then washed away, just like having all your memories there one minute and then gone the next. As the waves continue to come and go, so do the memories of a person with dementia, but we have to remember, the memories are still there, somewhere, as sure as the tides will continue to come and go as seasons pass, somewhere in every wave is a memory that can come back at any time.

Here at the Purple Angel dementia charity which I founded in Torbay, Devon in January 2012, our motto is ‘Engagement and Inclusion’ and we’re very proud of that, because if you engage and include people with dementia those memories will come flooding back and you wouldn’t believe how many interesting stories they have to tell.

We are all unique and have walked a different path doing different things along the path of life. We have all given so much to others and if you hear what people with dementia have to say, you might be surprised.

At our memory café here in Torquay, we have had people attend who have dementia who are professional football managers, eminent scientists, artists, singers, dancers, and a person who was responsible for designing the CAT scans we have today in the UK hospitals, so you can only imagine the stories the volunteers and I have been told, just wonderful!

In my own time of campaigning about dementia I have met many people up and down the UK, including royalty, pop stars, prime ministers and lords, but I have to say my biggest honour was actually meeting the incredible Stephen Hawkins before he passed, and having a face-to-face 15-minute conversation with him at a Pride of Britain event I was invited to one year, as I won the Southwest of UK volunteer award for my work in dementia.

What did we talk about? Dementia? Himself? Is there really life out there in space? Sorry, but what was actually said between myself and Stephen will always stay between us out of sheer respect

Till next time…

To find out more about Purple Angel visit: purpleangel-global.com

Purple Angel is providing free bespoke MP3 players for people living with dementia at: purpleangel-global.com/mp3-players/