Care Partnering, Life & Living, Memories

in the dead of the night


November 11, 2011: “Punkie?” Mom doesn’t wake me when she calls out. A woodpecker beat her to it an hour ago. I get up, put something on, pad across the hall. It’s November 11, 2011; I’ve been back 11 days.

“Are you okay Mom?” I say from her bedroom door.

“Yeah, but I want to get going, or do something, I’m getting sort of tired,” she says.

“Uh huh,” I agree.

“What about you?” She’s worried, anxious, confused.

“I’m okay,” I lie.

“It’s so dark, and I don’t seem to know where I am,” she says as I crawl into bed with her.

“Well, you’re in your house.” I try to make her feel safe amidst the confusion.

“I know, but it doesn’t seem to be bright out or anything.” She doesn’t understand. Not understanding is scary. So is the darkness.

“Because it’s nighttime,” I say.

She considers this. “Anyway, I…. Anyway…” She searches for something to hang on to. Her world is upside down. It’s dark outside when it should be bright and sunny. She doesn’t know where she is. She wants to do something, but has no idea what. She’s afraid. I would be afraid too, if I were her. I remain calm. So far I’m still able to.

“Do you think you can go back to sleep?” I ask.

“I don’t know, I’ll try.” She will. Give her a few minutes.

“Do you want me to get you some milk or something?” A stab at being helpful.

“No, no…I’ll just…I’ll just wait…I don’t know what we’re going to do.” She looks up at the ceiling, the back of her left hand lying against her forehead, palm up, fingers slight curled. Her right hand clutches the duvet.

I don’t know what we’re going to do either.

“I can’t sleep too well you know,” she says in a whisper.

That’s one of the reasons I came back to live with her. She’s been up several times every night since, and I’ve begun to suffer the ill effects of too little rest.

“Did you sleep?” She checks in with me.

“Yeah, except there’s a woodpecker outside.” I try to take us somewhere real and concrete that’s also not dark and scary, and then I half laugh at the irony of a bird keeping me awake.

“What’s he doing?” Her fear evaporates for a moment.

“He’s tapping on the tree. Tap tap tap tap tap. And then he stops. Maybe that’s what woke you up Mom,” I posit. “The woodpecker tapping.”

“I don’t know,” she says.“Where is he? In this area?”

“Over by my room, in a tree.”

“Maybe you’d better stay in here,” she suggests. She’s not concerned about the woodpecker keeping me awake. She’s nervous when she’s alone. Never used to be though; lived in this big red brick house with a cat or two for close to forty years. “It’s hard to know what time it is or anything.”

“It’s almost 6 o’clock in the morning,” I say.

“It should be lighter. It should be brighter out, don’t you think?”

“It must be cloudy. That’s why it’s dark outside. It’s dark outside, because it’s cloudy.” I repeat in reverse for good measure. “Because you’re right, it should be lighter.”

“I would think so.”

“It’s because it’s cloudy.” I repeat again, hoping it might stick. It doesn’t.

“It’s pitch black outside. I don’t know why it’s so dark.” Her mind mirrors the state of the pre-dawn sky.

“I put some night lights in here so you could see better. But they don’t shine outside.”

A few moments of silence.

“It seems as though we’ve been in bed for a long time,” she ventures.

“Does it?” I query.

“That’s the way I feel. I don’t know why it’s so black out. Why is it like that?”

“It could be because it’s cloudy today, and it’s early in the morning. It’s not even 6 o’clock yet. Do you want me to turn a light on?” I ask.

“No. I’ve got the light here.” She motions to her left. The table lamp my brother gave my ex-husband and I as a wedding present sits on an antique pine table. The shade is creamy white and decorated with tiny cutouts; the bottom is fashioned from an old glass oil lamp. It’s half full of dried potpourri: red, mauve and pink petals. The light is off.

“Do you think you can go back to sleep Mom?”

“Well, I’m gonna try. I’ve gotta’ do something.”

“Okay. I’m going downstairs to do some work.”

“Oh shucks,” she says, the worry has crept back in, like the dawn soon will to the day.

“It’s time for me to get up.”  I yawn. “If you need anything, just call me, okay Mom?”

“Okay dear. Or I’ll go downstairs or something. I don’t know what’s the matter around here. Anyway, I’ll try to sleep a bit. I don’t know how you can do anything when it’s so dark,” she says as she pulls the duvet up to her chin, eyes wide open.

I leave her alone in bed, and head downstairs to the den, which is underneath her room. I’ll hear the floorboards creak if she gets up. With any luck she’ll fall back to sleep for a couple of hours, and I’ll have some time to myself before she awakens for good.

Click play to hear the first part of the conversation:

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Challenges & Solutions, Life & Living, Love, Videos

what confusion felt like to my mom in the later stage alzheimer


October 23, 2014: Today I had reason to revisit a video I’d made in which Mom talks about how she feels about her state of mind I don’t have words for the way in which I’m inspired by her courage and determination, particularly in view of the daily challenges she faces. She is one amazing woman walking one daunting path home one step at a time. I’m in awe of her courage every single day, and grateful for the time we spend together. The clip below is also part of a longer conversation we had on August 19, 2014, which included how to keep the faith when you are going through a rust patch.

Living with dementia is a roller coaster, just like the rest of life. Mom and I have many moments of joy and happiness to balance these more difficult ones. Here are three examples to lift your spirit and put a smile on your face:

  1. tiptoe through the tulips
  2. ain’t she sweet
  3. mcnamara’s band

To better understand what it feels like to live with dementia of the Alzheimer’s type in a long-term care facility, see this series of stories told in the voice of Alzheimer’s Annie.

Mom died on August 17, 2016.

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Care Partnering, Challenges & Solutions, Life & Living, Memories

goodbye Dubai is as good a place to start as any

Sometimes it’s hard to say with precision where a story begins. So it is with this one. Was it September 27, 1928, the day Mom was born? Or November 21, 1951, when she was married? Was it 06:00 on January 28, 1956, when I inhaled my first breath? Or April 23, 1990, when my grandmother exhaled her last? Perhaps it was April 6, 2000? Or August 21, 2006? Or some other milestone of which I’m not aware. Maybe it began generations ago on a dark and stormy night. It’s hard to know. This part of this tale takes place in early October 2011.


Dubai Marina nightscape from my flat, October 2011
Dubai Marina nightscape from my flat, October 2011

October 2011: I look out at the Dubai Marina nightscape and pedal furiously as I Skype with my friend Kate.*

I rarely do one thing at a time. Exercise is no exception. The road bike I bought when I took up triathlon a few years ago is fixed to an indoor trainer that allows me to spin inside. That’s what I’m doing in the bedroom of my twentieth-floor flat. It’s still too hot to ride “au plein air” in the UAE at the beginning of October. After 18 years I’ve gotten used to it. Even grown to love it. There’s a whole other story about that.

“I have to give up everything.” My voice cracks, and the tears start to flow.

“Think of it as a new beginning,” Kate tries her best to comfort me from the other side of the world. “Once you get the right care in place you can reboot your business here. There are lots of opportunities.”

It’s funny how people think they know how you should run your life and that it’s up to them to tell you what you should do whether you like it or not. They give you advice when what you really want and need them to do is listen. It’s even worse when it’s unsolicited advice from random strangers, which thankfully Kate is not. Listening takes patience, practice and compassion. We all say we do it, but mostly we don’t.

“Kate. There are no opportunities for me there. I can’t do what I do here in Quebec, in French,” I’m in full-on waterworks mode now. “But I can’t leave Mom on her own either. I just can’t. She’s all alone in that big house with the cat, and she’s scared. She’s terrified. Oh god.” I stop because my throat seizes. Kate picks up the slack.

“You’re doing the right thing. The universe is going to help you. Things will fall into place. It may not happen overnight, but it will happen,” she says.

Her words begin to sound blah blah blah. My laptop threatens to lose its balance on the “tri-bars” in front of me, and my earbuds keep falling out. I’m overheating despite the air conditioning. Everything has suddenly become slippery. Sweat trickles down the back of my neck; tears slide down my cheeks and drop onto the tiled floor. I’ll mop them up later. Then I imagine the bike and I breaking free from the trainer, crashing through the floor-to-ceiling window and plunging into the black waters below.

And in a way, that’s exactly what happens.

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