September is Dementia Awareness Month, and I was in the office when I started crying.
We don’t really talk any more because there’s not a lot she has to say. If she does talk to me, it’s usually to ask, “Can you help me? Is today Friday or Wednesday?”
The saddest part has been losing the person you go to when your world falls apart. No matter how old they get, a lot of girls think, “Mum will know how to fix that.”
I was a daddy’s girl, growing up. I tagged along with my dad to train shows and plane shows; we walked on ahead of my mum and my sister on family bushwalks and stomped on ant nests together; we’d look at books of airplane schematics and exchange thick spy novels and murder mysteries.
A few years ago, my father started to change. He was a little slower; a little angrier. He made wildly out of character accusations (but not completely out of character. Just enough). He stopped answering questions.
When I was seven, his parents died. They both had degenerative mental illnesses when they went and, oh, how I was ready for this day. I have been ready since I was seven.
When daddy got the diagnosis, I was told (not by my dad) not to talk about it. Nobody needs to know. But now that it’s a part of our daily lives I’ve overruled that request more times than I can say, so many times that I don’t even try to hide it any more. When people ask ‘how was your trip to Perth?’ or ‘how are your parents?’, I tell the truth. “Dad has Alzheimer’s,” I say, if they don’t already know. “And we’re getting by.”
I talk about the ups and the downs. I talk about his slowness and his distance. I talk about the toll it’s taking on my mother, his primary caregiver; on my sister, for whom he now plays up, like a child. I talk about how he needs to be told what to do, sometimes, but how I don’t want to take away his autonomy and I don’t know how to balance that. I talk about how my family is struggling and I’m 3000 kilometres away, but I worked hard for this life and I’m not sure I’m willing to give it up.
I talk about how I’m Chinese and Chinese daughters don’t put their fathers in homes; how can I be a good Chinese daughter if I even think about it? But my dad’s not Chinese, so does that mean I can?
Instead of moving back to Perth, right now the compromise is flying there once every 4-6 weeks. I rearrange my work week and I go straight from the office to Tullamarine and from there into four days of family time, giving my mum some breathing space and my sister some room. And I sit beside my father, asking questions and paying attention, letting him be ‘naughty’ but not too far, not far enough to hurt himself. Which he sometimes does. Late on Monday, I fly back to Melbourne, tumble into bed in time for a 7am wake up and back to work.
I thought I’d been open about it, talking about it despite the anguish burning inside, the shame nibbling at the edges. But still my friends ask how my visit home was, genuinely expecting to find it was a fun holiday in the sun and sand. Still other friends ask me to spend time with them in Perth, as if I’m there with moments to spare. So I’m obviously not talking enough.
I was walking through Flinders Street Station on Friday, and saw a bunch of people handing out things. They’re things for September, their blue declaring that it’s Dementia Awareness Month. By Friday, I’d been back from my most recent visit to Perth by three and a half days, and I was exhausted because I hadn’t had a weekend for a while. And there they were, raising awareness about dementia.
My dad has Alzheimer’s. And when I started telling people that he has it, there’s always someone who has been touched by it, too. The woman I call Nan (not my actual Nan). My friend Nic. People at work, who understand when I suddenly disappear to take a half hour call from a family member.
Maybe I’ll get it, too. Maybe I won’t. But if we talk about it, maybe we’ll all be a little better prepared.
What’s really important to me is that we get to treat my dad (and others, of course, with dementia) in a way that respects them, in a way that still allows them autonomy and decision-making. Sometimes I catch myself talking to him as if he doesn’t understand, and it’s not that; he’s just changing, and I can accommodate that.
People with dementia often feel isolated, because they don’t get visited so much – a person with dementia can be confronting, and scary for a host of reasons. But that’s why I want to talk about it. I’m always trying to get people to visit my dad when I can’t be there, and being with my dad all the time is wearying on my mum and my sister.
I’m super into dementia enabling environments (the subtle changes I plan to make on my next visit to the family home are not major but they will, I hope, help).
For example, she says a recent survey showed over 50 percent of Australians think a person with dementia can’t have a meaningful conversation.
“We really need to challenge that, so we would encourage more understanding about the function of the brain, that the messages are just not getting through with dementia,” Mary says.
“So we would try and encourage people to understand some of those behaviours, to take it quietly, to slow things down, and people will understand, to just give people time to respond.”
David and Lennyce both encourage carers and people who have recently been diagnosed with dementia to access all available services, educate themselves and attend support groups.
It’s hard going, but I have hope.
[a photo of me and my dad is going to go here later. but it turns out i don’t have any electronically, and isn’t that an interesting thing]