Dementia is also known as ‘the long goodbye’. It’s slow, emotionally exhausting, and takes its toll not only on the patient, but their family.
My mother, Jacquie, was diagnosed at the age of 49.
Below is an excerpt from the book “Always Remember This” — my attempt to highlight the brutality of this illness so that perhaps Jacquie’s suffering will not have been in vain.
This chapter takes place 8 years ago. It’s all been downhill from there.
Chapter 12: Happy Birthday
A few months later I was on my computer one evening playing computer games as I so often did to escape when Dad ran into my room.
“Have you seen Mum?”
“I had to go to the bathroom and when I came back she was gone again. Can you drive around and see if you can find her? It’s only been a few minutes. I’ll give you five minutes to find her and if you don’t, I’ll call the police again. She can’t be far, and I have to stay here in case she comes back.”
We had caught her trying to leave several times since the previous incident, but she couldn’t get past the locked door and was usually fairly easy to convince that she was home.
I jumped in my car, pulled out of the driveway, and headed up the end of the street. I hoped as I turned the corner she would be there, but she wasn’t. I did a u-turn, went past our house, and found her 100m down the road. I pulled up next to her and rolled down the window.
She looked at me angrily and kept walking. I drove another 5m.
“Mum! It’s me!”
“Go away!” she yelled.
I looked around. No one else was on the street, so at least I didn’t have to be embarrassed. I parked the car and ran over to her. She tried to push past me.
“I have to go away from that horrible man. I’m going home,” she said, indignantly.
“Mum. You are home. Home is this way,” I said, pointing. “And there’s no horrible man there. There’s just me, Dad, and Zoe.”
She looked at me, then ahead to her original direction.
She looked at me again. Her eyes were filled with fury, her mouth trembling. “I’m trying to get home. I don’t like this.”
“I know Mum. You’re sick. But we’re taking care of you. I’m your son. You have to trust me.” I put my hand in hers. “Home is this way, I’d like you to come with me.”
A shrug of her shoulders showed her softening up, so I pulled her in for a hug.
“We’re going to take care of you,” I whispered in her ear. “You’re going to be ok.”
I held her hand and walked her up to our house. I hated holding her hand. Holding hands between mother and son should only occur before the age of eleven. Any later than that and it starts getting weird.
I was hideously embarrassed when a car drove past carrying some hot chicks from up the street, but so be it.
The next morning, Zoe and I sat around the dining room table with Mum and discussed what we would get for Dad for his birthday the next day.
“I want to help too,” Mum said.
“We know, Mum,” Zoe replied, touching her hand. “What we get will be from all of us.”
We decided to get him a new DVD player as his one from Canada couldn’t play any Australian DVDs.
Mum went to her room and came back carrying a handful of change. “Would you put this towards it? I don’t have any money,” she said, dejectedly, as she handed me around eight dollars in change and a broach.
Zoe and I looked at each other. I managed to keep the tears hidden. Zoe couldn’t hide it as well as I could, which then made hiding mine even harder. It was a vicious cycle of trying to be strong for Mum and failing.
“That’s ok, Mum. You’ve already given towards it but I guess you don’t remember,” I lied, applying what I had learned in the Alzheimer’s course.
“Oh. Did I? I must have forgotten. I’m,” she paused. “ — this disease — it makes me forget things.”
“We know,” said Zoe. Her tears were now flowing unashamedly. “It’s ok. We’re here for you. You’ll be ok.”
We all stood up and Zoe gave Mum a hug and patted her back. I gave her a hug after. They went to the rumpus room to watch TV, and I got ready to go to the shops to buy the present.
When I returned with DVD player, I snuck to my room to wrap it without Dad seeing. Zoe called Mum over to come join us.
We wrapped the present and I pulled out a card. It was a superhero card meant for nine year olds, which I thought was hilarious. I drew a ‘4’ next to the ‘9’ on the front and had a laugh. Zoe was unimpressed.
I wanted to write Dad a touching message. Something that would show how much I admired and respected the way he was looking after Mum and staying strong for us all. I figured the best way to do that would be to treat him the same.
“Happy birthday you old fart, ❤ Jake” was written on one side in hieroglyphics, and on the other side in beautiful penmanship was written; “Happy birthday Dad, Hope you have a great day! Love you lots. Zoe xox”
Seemed pretty accurate.
“Your turn Mum,” Zoe said as she handed Mum the pen.
Mum sat at the desk, pen to paper.
‘J’ she wrote, printing each letter rather than writing her signature.
‘C’ she continued.
She paused. And then paused some more.
“I don’t know what’s next,” she said sorrowfully, putting the pen down on my desk.
“Don’t worry, Mum. I’ll show you,” replied Zoe, as she put the pen back in Mum’s hand and put her hand around hers. “The next letter is ‘Q’. Like this, see?” Zoe traced the letter with Mum’s hand. “And then ‘U’, ‘I’, ‘E’.” Mum was able to pick up the last two letters by herself.
“That’s ok, Mum.”
It was not ok. Nothing about this was ok.
That weekend we had a BBQ at our place for Dad’s birthday. We had already celebrated with family, so the BBQ was just The Nameless and me, Zoe and Other Tim, and Other Tim’s parents and brothers.
I always enjoyed family BBQs, but they were especially good these days now that I’m an adult and can drink beer. It was a great opportunity to show how much of a well-adjusted young man I had become.
Other Tim’s parents were very friendly and highly religious. But they certainly weren’t holier than thou, and I liked them for that.
Dad had been getting very creative behind the BBQ recently. Now that cooking was mostly his responsibility, he had been learning new recipes and experimenting on us kids. Most of the time it turned out very well. One time it didn’t, but we don’t speak of that anymore.
Dad cooked while I offered drinks and passed around a cheese platter. Other Tim’s Mum, Lynne, was speaking to Mum, and they seemed to be getting along quite well. Of course, Lynne had been briefed on what to expect, so was very positive, and carried the conversation. Though, even if she hadn’t been briefed, that was just the type of lady she was anyway.
I went to the edge of the backyard to have a smoke. As I did, I observed Mum talking to Lynne while The Nameless spoke to Zoe. Mum looked over at me and instantly her entire face changed. She went from pleasant to angry in half a second while staring at me.
I finished my smoke and walked over to her with a big, heartwarming smile.
“Hello Mum! Are you having fun?”
Lynne was smiling at me while Mum continued her death stare.
“Oh, we’re having a great time, aren’t we Jacquie?” Lynne directed at her.
Mum looked at Lynne and let out an angry scoff. Then she looked back at me. Lynne put her arm around Mum’s shoulder and she shrugged it off.
“I don’t want you here. You’re evil. You disgust me,” she hissed, her eyes penetrating my soul with loathing.
Lynne looked at me. She still held a smile to try and keep the mood positive, but Mum took no notice. I let out a small smile at Lynne to try and show her that the situation was under control.
“It’s me, Mum.”
“I don’t care who you are. You’re evil. You can’t trick me. Get away.”
“Ok, Mum. I’ll go away. I love you though.”
I walked over to Dad at the BBQ. He and Other Tim’s Dad, Mike, were discussing Dad’s clever way of cooking vegetables on the barbecue, now that Dad was an expert.
“Hey Dad,” I interrupted, “Mum’s looking at me funny and thinks I’m evil. It might get bad.”
Dad turned around and looked at her. Mum was ignoring Lynne and was completely focused on me. The outdoor spotlight behind her gave her the appearance of a menacing silhouette. It was downright creepy.
Dad held out the tongs to me. “Shit, ok. Take over the BBQ. I’ll go distract her a bit. Sorry Mike, shouldn’t be long.”
“No worries, Tim. You do what you need to do,” Mike said as he pulled out his tongs next to me.
Mike and I flipped the corn and spiced capsicums and engaged in idle chit chat to cover up the awkwardness while Dad walked over to Mum and put his arm around her. I could hear him trying his uplifting questions and distractions on her over the sizzling. For a few moments, she continued to stare at me with hatred, and then her gaze slowly went away. She seemed to be laughing, but looked on the edge of murder still.
Eventually the meal was ready and we all grabbed our plates while Dad served out the meat and veggies. Everyone grabbed a seat and a fresh drink and sat down. In the middle of the table were a few bottles of wine and a couple of salads. One of the salads had been made by Zoe, and she was happily boasting about all the exciting and fresh ingredients she had used. Quinoa! In a salad? Daring! And is that watermelon? Jesus Fucking Christ, pinch my nipples! I looked up from the salad to the opposite end of the table where Mum was sitting. And Staring. Again. I took my plate and went inside to eat with The Nameless following closely behind.
“God, that was horrible,” I told her.
“What was that? I’ve never seen her so angry.”
“I guess it’s just a continuation of the paranoia.”
“Are you ok?”
“Yeah, I’m fine.” I exhaled and took a large sip of my beer. I wasn’t fine. I wanted to smash my plate, push over the TV, pick up my computer and throw it through the window. But I couldn’t let it get the best of me. “I know she doesn’t mean it,” I continued. “I know that’s not her.”
The Nameless pulled me into her for a long hug. “It’s not her. I know you know your Mum loves you very much.”
The rest of the evening I stayed hidden away from Mum. While I hung around the side of the house drinking and smoking, others would come up and talk to me. I could tell it was awkward for everyone, but I appreciated that they understood why I was hiding.
Also, that salad was really delicious.
The next morning I woke up and went to the kitchen to make myself a coffee. As I was stirring it Mum came into the kitchen, bringing with her a large amount of tension.
“Morning Mum,” I said, as happily as possible.
She scoffed at me. There’s something about those scoffs that tears through the fabric of my very being. The only other time I had heard her scoff like that before she was ill was when I had disappointed her. The kind of scoff to indicate she could see through my bullshit and knew I was trying to get away with something. It had only ever been used very rarely. I was an angel.
I decided to head back to my room and play on my computer. As I loaded up, I could hear a fair amount of shuffling in the kitchen, which I could see from my desk. I looked over to see Mum staring at me again, but this time I could tell she was going for the knife drawer.
In a panic I grabbed my keys, a few t-shirts, socks and undies. I had to walk near her to get out the backdoor. She held her stare as I got closer, and I could see that she had a large knife in her hand.
“Come here, I want to talk to you,” she said softly as I slammed the backdoor behind me.
I snuck around the house and got in my car and drove a short distance down the street. I pulled out my phone and called Dad.
“Hey, it’s me.” Dammit. “I’ve just had to leave. When I was sitting in my room I could see Mum going through the knife drawer and staring at me. I’m going to go stay with The Nameless for a few days.”
“Oh, shit. Ok. She just walked back in the rumpus room. She doesn’t have a knife. Did you want to come back?”
“No. That was hideously disturbing. I’ll be back in a few days.”
“Ok,” he sighed. “I’m sorry, son. I’m sure that’s very hard.”
“Yeah,” I almost choked. “It is. I’ll talk to you later.”
I hung up and called The Nameless.
“Squee!” she answered.
“Heya! It’s me.” God fucking dammit! “I just had Mum pull a knife on me. Do you think it’s ok if I come stay at your house for a few days? Would your parents be ok with that? Otherwise, I can stay at The Nana’s.”
“Oh, wow. No, of course that’s ok. They’re both at work. I’ll let them know.”
“Ok, I’ll see you in about half an hour. Love you,” I hung up.
On my drive over there I put on some heavy metal and turned the wicked awesome 4-speaker cassette stereo up to as loud as it would go before distorting. Would I still be able to live at home? What if I had to move out for several months until she got past the paranoia stage? Where would I live? What if this sort of violence means that we have to put Mum in a home?
Of course, I had no answers to these questions. I didn’t want to imagine defending myself from her. I shouldn’t have to. I’m 26 for fuck’s sake. Mum’s supposed to be around to see me start my life. To offer motherly advice that I ignore and then share with my own children many years down the track. She’s supposed to be a source of love and comfort, not fear; certainly not when I’m much bigger and stronger than her.
And yet, she needed me there. Not only as a support to her, but to support Dad and Zoe through this. Why was she picking on me? What fucked up shit was going on at the molecular level in her brain to make her think that I was evil and intent on killing her.
Dad had said he wouldn’t ever put her in a home and he would look after her until the day she died. As noble as that was, none of us had expected this kind of behaviour.
I imagined visiting in her in a home. Bored out of her mind, sitting in a chair surrounded by geriatrics twenty years her senior. Feeling lost every day, wondering why we weren’t there. Trying to escape to go home. To our empty home.
I pulled over the car and bawled my eyes out.
Originally published at medium.com