When you hear the term “dementia sufferer” I bet you think of people whose memory is going. Who may not be able to care for themselves any more. Who don’t even know their loved ones. And there is no doubt they suffer, but it feels to me as though my Mum has almost gone past suffering. True, she has moments of fear, of panic, and of loneliness, but for the most part who she was has bean eaten away, and emotions are so fleeting now that she never suffers for long. She calls in search of her parents, but five minute later has forgotten both the call and her parents. It is both the blessing and the curse of memory loss that nothing lasts for her anymore. The distress those calls leave behind, though, lasts a lifetime for us.
Today I ran the “Memory Walk” 3.5km run in support of Alzheimers Australia. There was a “roving reporter” interviewing participants about their reasons for being there, and on being asked to contribute I felt unexpectedly teary. I tell myself I am calm and contained, and that there is little I can do to help Mum apart from visiting, and taking care of day to day tasks like managing her finances and paying her bills. I tell myself I am ok with that, that I have come to terms with the reality of dementia, and that I’m not too stressed about it. It’s just part of life now.
But the truth is it’s a constant background strain – except when it is smack bang in the foreground. It’s a leaden chain wrapped around my feet. A deep and sickening terror in my belly. The one thing I know for sure about Mum’s dementia is that it’s bad, and it’s going to get worse. Some days I’m pretty sure she doesn’t know who I am, although she hides it well. Some days she is angry. Some days she’s distraught because she can’t turn her TV on. Some days she thinks people are spying on her.
She won’t see a doctor. She refuses to let anyone in who she doesn’t know, so we can’t organize home assistance or get her any kind of medical care. We are literally waiting for her to fall ill or break a bone, so that we can get her some kind of help. There doesn’t seem to be anything else we can do.
We can’t just “put her into care” as people regularly insist we should. She’d walk straight out again. Last time we tried to take her to the GP she got out of the car in the middle of a major road, screaming that she was fine and that we had no right to force her to see a doctor against her will.
So we wait, and hold it together as best we can. And while the dementia eats away at her brain, it eats away at our lives and our hearts. We field the frantic, angry, or distressed phone calls. We visit fearfully, wondering what we will find behind the door. And we wonder what the next stage down this long, torturous and painful road will look like. Will she have a fall? Will she get violent? Will she forget her way home, or lock herself in her house? Will she lose her purse again, as she hides it from the people spying on her? Will she leave the house naked? (She’s already forgetting pants a lot of the time.) Will she go searching for her parents?
Or will it be worse than all of that, in some way we can’t even begin to imagine? Her fate, and ours, closes in on us. There’s no pre-empting it, and no evading it. Perhaps the best I can do now is look that fate in the eye, instead of trying to pretend it’s not there. “Dementia sufferers” is a rather broader term than I thought. We all suffer, and none of us want to admit it.