Since I stopped working to stay at home, my days have been a lot like thousands, millions of other women’s days. Sometimes – more often than not – they are painfully slow; and occasionally they fly by so fast I don’t know where I’m at or why I’m still in my pyjamas.
Sadie won’t sleep; I could fall down with tiredness. Sadie won’t have a bath; I’d give anything to be able to shave my legs and soak. Sadie wets the bed and poos her pants; any squeamishness I started out with is long gone. She won’t go to day care; I ache for some time to myself. She cries when I leave the room; I cry at night.
I can never leave her alone. It takes us ages to get out of the house. If I tell her something once, I tell her a thousand times. If I ask her a question the answer will be ‘no’ or, sometimes, infuriatingly, ‘whatever’.
If I entrust Sadie with her bus ticket, sun hat, a few coins …. they disappear. Yet bits and pieces, odds and ends, all sorts of random things, accumulate. She’s like a bowerbird; to her, trash is treasure.
I’m so frustrated, tired, and bored at times I could scream. But I never get angry. Well, hardly ever.
Sadie isn’t my toddler. She’s not my daughter. She isn’t even a child.
Sadie is my mother and she has Alzheimer’s Disease.
Julianne Moore’s character in Still Alice develops Alzheimer’s. Watch the trailer below, post continues after video.
I left my job and moved in to her place to care for her about three years ago. Caring for her is like raising a child, I guess. Sometimes she melts my heart. Sometimes she breaks it. Sometimes she says the funniest things. Every day is a challenge. Every day, we laugh.
Unlike raising a child, I don’t get to see her grow and develop and change and learn and try and fail and try again. I see her deteriorate.
These have easily been the worst three years of my life, but I’m not complaining. Honest. It was my choice and I’m glad I did it. One day, I’m going to look back with great fondness at the times I spent mothering my mother.
I’m terrified of Alzheimer’s. Worried I might get it and scared for my mother and what she is going through. Imagine that everything you know to be true about yourself and the world starts to fade until there’s nothing that makes sense. Nothing is familiar, everyone is suspicious and the world is a confusing, scary place.
I think I’ve got her through the worst of it. For a long time she pulled it off; what was happening in her head was well hidden, though of course she knew something was wrong. She dismissed it as age-related memory loss and started to write herself notes about anything and everything so she wouldn’t forget. Yet Alzheimer’s isn’t just about memory loss and it isn’t age-related, either. It can affect all of a person’s cognitive functioning and impact on every single aspect of their life.
Things were really slipping when I moved in. I became her anchor. As long as Vanessa was there, it was okay. On a bad day, she’ll forget who I am and ask me where Vanessa is.
I’m not the best carer in the world and there’re probably a million things I could have done better. I’ve been winging it, playing it by ear.
It took her a while to settle when I moved in, of course. She didn’t trust me. Thought I was after her money – ironically, given these three years have ruined me financially.
Now we’re inseparable. Our days are filled with fun … places, faces, pets, flowers, music on the radio … the good things. The simple things. I’m so used to putting her needs first that when I do get a break, I don’t know what to do.
I do know the time has almost come for her to move into a care facility – one that specialises in caring for people with dementia. I’m mentally and physically exhausted. I have nothing left to give and she needs more than just me. The move won’t be the end of the journey for either of us; it will be the start of a new phase.
It feels like the worst thing in the world, giving up like this. It took ages to make the decision. The whole year, if I’m honest.
Before the move, I’m taking Sadie on a road trip. We are both at our most relaxed in the car and for the past three years, we’ve been out and about just about every day. Sadie rarely even asks where we are going.
We did a test run in September, driving from Sydney to Byron Bay and back in a camper van. Everyone warned me that Sadie would get confused. A dear friend told me when her father took her mother, who had dementia, away caravanning, she thought she was being kidnapped and refused to sit in the front seat with her husband, the abductor, who she’d done countless road trip holidays with over the years.
I thought Sadie would ease into it and be fine, and she was. She gets lost at home, and I figured she couldn’t get lost in a motorhome.
The whole thing was funded by the generosity of friends and strangers. Through a crowdsourcing site we raised more than $3,000, which allowed us to go on the test run. My initial plan was fundraise money to travel right around Australia, putting off the agony of moving Sadie into care. But her needs are changing, and I’m as burnt out as can be. Moreover, fundraising is a full-time job and caring is even more of a full-time job. I was being way too ambitious.
Instead, I’m hoping we can take off to the Great Ocean Road in Victoria. Sadie will love it. I think it will be fun for me too.
We still need to raise about $4000 to pay for the trip, which I’ve dubbed “Driving Miss Sadie”. I’d really like to go this month, before the temperatures, crowds and prices peak over summer. And before Sadie’s needs become too complex for the trip to be possible.
Please help us get this show on the road, if you can, and follow us on this new phase of our journey together.
You can donate to Driving Miss Sadie here.