Margie is still Margie. So why, asks Lucy Berry, do people treat her like less of a person when they hear she has early-onset dementia?

When you meet her, you can’t tell that Revd Margie has early-onset dementia. She is as pretty as ever, and as kind. She has the same acute and considering look that she always had, and the same laugh. She has empathy and imagination. Meeting her on the street, you could chat away for ages, never knowing that she is navigating something so huge – an ever-developing, altering consciousness and perspective. She doesn’t appear as someone dealing with a changing landscape.

And ‘changing landscape’ isn’t some cheesy metaphorical way of saying that Margie’s life has been overturned, although it has. Her landscape has altered. The way she sees her surroundings is truly different. To move round an unknown house is now very hard. Doors and walls don’t always make sense. Spaces, and the relationships between spaces, don’t work as they used to. Behind her genuine cheerfulness and acceptance, it is difficult to spot how disorientating this is for her.

For Margie to find the butter on her kitchen table is sometimes impossible. Not because she has bad eyesight, she hasn’t looked properly or has forgotten what she’s looking for, but because her eyes no longer show it to her. She may search for butter, which is on the table before her, and see the salt, the soup, the bread, the knives and forks, but not butter, even though it’s right there. Other days she may find it straightaway.

This disorientation is something she both wants to and fears to mention. She’d like to talk about how things appear to her, as it might help people to understand some of her hesitations. But she has been exposed to many unfeeling, offhand remarks since her diagnosis. To feel unsure of one’s physical world is difficult enough; to fear people’s reactions to oneself is even harder…

___

This is an extract from an article that was published in the October 2017 edition of  Reform

Subscribe to Reform