“Nana, you already asked me that. Don’t you remember?”

I was snarky and impatient.

She’d ask me the same questions over and over again. It was frustrating having to repeat myself, and at only 10 years old, I couldn’t comprehend the severity of the disease that was bleeding into her mind.

From this point, she wouldn’t only occasionally forget what time it was or my name; she would forget how to talk, walk, and feed herself. Her dementia diagnosis dropped a ticking time bomb into my family’s lap and sent us into a new normal that was anything but. We’re now forced to deal with the loss of someone who is still alive.

Stage 1 – Red wine and ice cream

There are four stages of dementia: the early, middle, late, and end-of-life.

One of the more light-hearted memories from the early stage is when Nana would get tipsy at family dinners because she forgot she’d already drank six glasses of wine and kept asking me to refill her glass.

“How many has she had?” my mom would ask. “She’s drinking it like it’s juice. I don’t think she even likes red wine.”

Nana would get chatty when she got drunk. I’d sit beside her and hold her hand while she told me about her day ­— which was entirely made up of course, because she’d forgotten. I’d learned it was best to nod along with her story.

In the early stage, Nana still had enough awareness to know we were acting differently around her. She didn’t enjoy being taken care of, and she especially didn’t like to feel as though she was forgetting.

“Did they send you over here to babysit me, my girl?” she would ask me.

“No, I just wanted to hang out with you,” I’d assure her.

She’d roll her eyes and wave her hand as if to dismiss me from my duties.

“They think I’m crazy,” she’d say to me under her breath, raising her eyebrows in an annoyed sort of way. All I could do in these moments was give her a shy smile and squeeze her hand.

“Well, maybe I am,” she’d sigh.  

Nana loved ice cream. Actually, she more like lived for it. Imagine being a 10 year old with a Nana who would take you for ice cream, forgot she took you, and then ask if you wanted to go again. Pretty cool, right? My grandpa (Papa) never had the heart to tell her no, so often, we’d go twice.

“Better she’s forgetting she ate and eating more than forgetting and not eating at all,” Papa would say. I figured this was true. She’s old, let her have the ice cream, dammit.

In 2015, Nana was diagnosed with vascular dementia. My family explained this to me as mini-strokes inside the brain that wear down your memory over time. A quick Google search and Alzheimer.ca — run by the Alzheimer Society of Canada — will tell you vascular dementia is when the vascular system, which supplies your brain with oxygen, is blocked, diseased or bleeding. This prevents oxygen and nutrients from reaching the brain, killing brain cells and leading to dementia. The symptoms of a stroke and vascular dementia are essentially the same — loss of speech, effects on the ability to walk, changes in behaviour, and an impact on cognitive thinking like memory and the ability to hold a conversation. We watched these symptoms slowly weave their way into Nana’s everyday life for seven years.

Stage 2 – Like hitting the reset button

The middle stage brings a “greater decline in a person’s cognitive and functional abilities,” Alzheimer.ca says. They also say this stage is the one that feels the longest. It lingers. It wasn’t just giving Nana an extra glass of wine or getting to go for ice cream twice. I could physically see the confusion in her now. She wasn’t as chatty and didn’t insert herself into conversations with confidence. Nana sort of sat in the room and stared into space. She was always in a hurry to leave, and you could never get her to sit still. Nana started telling me about how she would visit her parents on the weekends. They’d been dead for almost 15 years. She often called me by my mom’s name and my mom by her sister’s name.

“Nana, you already asked me that. Don’t you remember?”

This time I wasn’t snarky or impatient. I was scared and pleading.

There are two memories from this stage that have impacted my life. The first is embarrassing to admit. It was the first time I experienced shame associated with Nana’s disease. Shame and anger — not toward her, but toward the people in my life who had little understanding of her condition.

We were driving in my mom’s car. I was sitting in the backseat with one of my best friends. I was maybe 15 and had no license, so my mom and Nana had to pick us up from the mall. At this point, my mom would take Nana out with her during the day when she could to give Papa a break. It was all hands on deck for my family in this stage. My mom says she remembers Nana had a coffee with her that day and kept forgetting how hot it was. She’d try to take big sips and then burn her mouth. My mom says she nearly crashed the car trying to stop her from picking it up every couple of minutes. It’s little things like this that take a toll on us as caregivers. The disease takes away an element of common sense any healthy adult would have — like not drinking your coffee when it’s too hot.

As we were driving, my dad called and my mom answered on the Bluetooth so we could all hear. Whatever the conversation was about lead me to say something like, “Where are we going?” and without any warning, Nana piped up: “We’re going to the moon!” This wasn’t abnormal for this stage in her disease. She was less talkative but the woman loved to be the centre of attention. Every so often she would try her best to be a part of whatever was going on, which usually meant blurting out the first thing that came to mind.

This set my friend off. You would have thought we had a comedian in the car. She was laughing hysterically, clearly not understanding it wasn’t Nana making a joke, it was her brain not knowing what was going on. I laughed a little so my friend wouldn’t feel weird. My mom and I exchanged looks through the rear-view mirror as if to say, ‘Well, this is awkward.’ My mom ended the call and we went on with the drive. For the next few weeks, that was the only story my friend could talk about. Or at least it felt that way.

“Emily’s grandma is so funny. The other day we were in the car and …”

I’d sit and listen and laugh along. I didn’t have it in me to explain and honestly thought it might make my friend feel bad, so I let it slide. I remember feeling isolated in this moment. Alz.org says 747, 000 Canadians are living with Alzheimer’s or some type of dementia. As I grew older I realised so many families have gone through the same experiences as mine. It’s nothing to be ashamed of, but in that moment I thought my friends would never understand. 

My second memory has stuck with me for a different reason: fear. I played hockey until my senior year of high school. Nana and Papa were my biggest fans. They showed up to every game, even when we played the country teams and had to drive an hour away. They never cowered in the warm viewing areas encased in glass. They sat in the stands bundled up and ready to cheer me on. Nana’s enthusiasm diminished as her disease took over more of her brain. Gradually, my mom would take her to the warm viewing area during games because she couldn’t pay attention anyway. Papa says he remembers her sitting beside him and asking where they were or when they were going home.

“Em’s out there,” he would say.

“Well, I know that,” she would bark back, trying her best to cover up her confusion.

One time, while I was on the bench and scanning the crowd for my family, I noticed I could spot everyone except for Nana. “Weird,” I thought, but I had a game to focus on so it only held my attention for a second. My whole family was there anyway. Someone must know where she was. It turns out Nana had said she needed to go to the bathroom. My mom says she’d asked her multiple times if she knew where it was, which probably pissed off Nana because she hated being treated like a child. She must’ve been convincing because my mom let her leave the stands on her own. Nana didn’t come back after 10 minutes or so and my family started to freak out. My mom found her down near the change rooms. Nana had no idea where she was or why she was there.

This wasn’t the only time Nana ended up in the wrong place. While eating out at a restaurant with Papa, she had gotten up to go to the bathroom. On her way back she must have thought he was outside waiting for her in the car, so she left the building. When she didn’t come back, staff helped Papa search for her. They found her outside, walking down Pembina Highway in the opposite direction of the restaurant.

Our biggest fear was her leaving without the proper outdoor clothing and getting lost somewhere in the cold and where she wasn’t clearly visible. Luckily, she couldn’t drive and she couldn’t move very fast, so she never got far.

It was probably at this stage Papa should have hired in-home help like an aide or nurse who could at least give him the time to shower without worrying she’d leave the apartment. He never did hire any. It bears repeating: Nana was not accepting of her disease. She didn’t want help, she didn’t want us to treat her like a child, and she really didn’t like hearing she was wrong. Papa was not accepting of her disease at this stage either, and hiring help would have been admitting he needed it.

I think about this stage now and can guess how Papa was feeling. MentalHelp.net says more than 60 per cent of Alzheimer’s and dementia caregivers would say their emotional stress is very high, and more than one-third of them report symptoms of depression. A dementia diagnosis not only affects the person who has it, but the whole family — especially their spouse. You are not only a husband or wife but a full-time caregiver. You’re forced to watch them deteriorate. They forget the little things, and you have to help them with day-to-day activities. Reminding them to brush their teeth, brush their hair, telling them to eat, breaking it to them they can’t go visit their parents because they’ve been dead for 15 years.

Day after day, it’s like hitting the reset button.

Stage 3 – Peas, dusty furniture, and Lysol

It was night time and my grandparents were getting ready for bed as usual when something strange happened. Nana sat down on the floor. When Papa realized, he asked her what she was doing and to stand up so they could get into bed.

“Ok, I will, I will,” she said.

But she wasn’t getting up. It seemed as though she had forgotten how to stand. Maybe she forgot why she had sat down, or perhaps she forgot Papa had asked her to get up, so she stayed put. Papa wasn’t able to pick her up without any support on her end without risking injuring himself. I’m not sure how long he waited but eventually he called my uncle. When they both couldn’t convince her to stand they called an ambulance.

The transition between middle and late stage of Nana’s disease happened in the same amount of time it took her to sit down on that floor. Nothing would be the same from here.

Collectively, as a family, we’re not sure what happened. It might have been one of those mini-strokes became a bigger one, it could be a blood vessel was completely blocked in the brain, or maybe it was the medication the doctor had given her a few days before that was supposed to help her sleep. Whatever it was, it put her in the hospital. The doctors ran tests and told us she was deteriorating fast. They told Papa he should have been getting at least 40 hours of in-home care as she was deemed extremely difficult to take care of.

I remember visiting her there. She had to share a room with a woman who sang to herself all day and probably all night. Nana didn’t seem to mind, but then again, I’m not sure if she had the capacity to notice. I sat at her bedside and held her hand. She would look at me with what I think was still a sliver of recognition. She tried hard to form sentences and spoke when the rest of us were speaking. It never made any sense, but I nodded my head along with her words, just like I always did.

The first personal care home (PCH) she was put into was an old building that smelt like peas, dusty furniture, and Lysol. When you entered it, the first door wouldn’t open unless the second door was completely closed and vice versa. You had to buzz in and write your name in a visitors’ book. I remember thinking it was bizarre, and at the same time wondering if anyone had managed to escape.  

At this point, Nana had begun to start walking again, so they had her on the third floor. This is where they put people with dementia who might try to make a run for it. You have to buzz in and the door locks behind you. She would have hated it here if she knew any better.

After a year or so, Papa was able to get her into a new PCH closer to his apartment called Golden Links Lodge (GLL). She still lives there now. I like GLL a lot better and feel as though she would too. It smells fresh with only the light scent of Lysol and sometimes like chicken noodle soup. It’s a spacious building, and Nana gets her own room. The health care aides and nurses are always lovely and smiling. There is a double door system here too, but I’m used to it now. My mom and I once almost let out a very convincing resident who said she was “just a visitor.” So, I see why they need it.

Nana being in a PCH is somewhat of a relief for my family. She isn’t herself anymore and can no longer walk, talk, or feed herself. She doesn’t look at me with recognition, and I know if she was able to understand her circumstances she wouldn’t have wanted to live like this.

Nana can no longer make any of her own decisions. Not how short the home hairstylist cuts her silver locks, which sweater she puts on in the morning, or when to swipe on her go-to shade of pink lipstick she always carried.

But the most important thing is she’s being well taken care of.

Living in a PCH has recently come with its own set of challenges. In the beginning months of the pandemic, my family watched the news in horror as the anchor told us residents of Revera Maples Long Term Care Home were found in their rooms unfed, unchanged, dehydrated, or dead during a COVID-19 outbreak.

In November 2020, GLL faced their own coronavirus outbreak. My family’s biggest fears came to life when 68 out of 83 residents and 42 GLL staff members contracted the virus. Nana was one of 15 residents who were lucky enough to test negative. Still, we waited anxiously every day of that outbreak hoping she would stay healthy. Staff levels depleted and the PCH had to call on paramedics, the Winnipeg Regional Health Authority, the Canadian Red Cross, and family members to make sure residents were being cared for. My mom volunteered to visit Nana during the outbreak to make sure she was fed and to check on her overall well-being.

“All the residents were kept isolated in their rooms and I couldn’t even hold her hand. The whole place felt lifeless, nothing like a home,” my mom said.

We are lucky the CEO of GLL took every measure to keep everyone as safe as possible and the PCH is now COVID-19 free.

Nana has lived in a PCH for about three years now, and I’m almost 22 years old. I haven’t seen her in over a year because of the pandemic. Before the COVID-19 outbreak, Papa visited every single day and fed her lunch. He says it’s hard for him and he feels guilty because he can’t be there to see her. She isn’t herself, which makes it a lot harder for him, he said. They can’t talk on the phone, video chat, or even wave through a window.

Stage 4 – Wishing for a sliver of recognition

Nana isn’t quite at the end-of-life stage yet. Papa jokes about her outliving him because physically, she’s completely healthy. I wish she could meet the friends I have made, sit in the (virtual) crowd at my upcoming graduation, or adjust my veil and fluff my dress on my wedding day.

I might have been embarrassed when I was 15, but now I think about her saying “we’re going to the moon!” with a big smile on her face and feel pride. I miss Nana every day.

My heart goes out to all the families who lost loved ones at Golden Links Lodge during the COVID-19 outbreak of 2020.