Lots of beautiful and personal and profound stories being added on to my anecdotes of dementia patients, and these are good and important and I love them, and yet... they're not what I wanted the post to be about.
I'm not so much interested in dementia patients as dispensers of profound life advice, nor in the family love and grief surrounding them (though I have every sympathy for it and I know it is immensely hard). I'm interested in dementia patients as a marginalised population. Often medically neglected, often institutionally abused. Frequently dismissed and trampled on at every level. It's ableism, against a population almost definitionally unable to fight it.
Providing care for people who can't understand it and don't want it is complicated and ugly. I don't have big solutions and I'm failing to sketch out even the vaguest shape of the huge problems. But at least I can take one tiny stance for how I interact during the time I have with them: that they are people, deserving of respectful engagement in both being spoken to and being listened to.
People with dementia are worth talking to, even when they won't remember afterwards that you ignored them.
People with dementia are worth talking to, even when they can only follow a couple words at a time. Sometimes they surprise you and you get a funny or touching anecdote out of it, but far more often they do not; the mundane times are still worthwhile.
People with dementia are worth talking to, even when they talk in one unending sentence at 500 words a minute looping around the same three phrases because they don't remember when their sentence began.
People with dementia are worth talking to, even when they never talk at all.
People with dementia are worth talking to, even when they are in pain. Distressed. Angry. Crying. Shouting. Screaming. Violent.
Nobody should be obliged to suffer the violence, but neither should the person be obliged to suffer their own distress alone forever. There's a tension there! There isn't an easy answer! Both things are true and it's exhausting and hard and painful and loud and still we must wrestle with it, we must not write them off. Often they are trying to communicate their pain, though often their pain cannot be solved.
People with dementia are worth talking to. They are the same people as ever they were - they haven't died, they aren't lost or hidden. There is a continuous thread from the past to now.
Sure, they've changed. So have you.
