I lost my Grandma Joan in July of last year. The loss was hard on my whole family but particularly difficult for my Grandfather. He met Joan when they were still teenagers. It was the first time in over 70 years he’d be without his partner.
The family was together the night that Grandma died. Crammed around an undersized bed in the emergency ward we sat and said our goodbyes, the muffled sound of sobs blending with the quiet hum of fluorescent lights and the Darth Vader breathing of a respirator. As we waited for things to wrap up, Grandpa held Joan’s hand. Occasionally he’d mutter to himself. The process took longer than expected—Joan had a stubborn streak that lasted until the very end—but when Grandma had passed and we were packing up to leave something strange happened. Grandpa looked at us and asked: where’s my wife?
We gently explained to him that she had passed away. He nodded and didn’t say anything. But on the car ride home, Gramps asked again: where’s my wife? And those were the first two times we told my grandfather his wife was dead.
According to the Alzheimer’s Society of Canada there are over half a million people in the country living with dementia. Over the next decade that number will rise with an aging population. Cases are expected to grow by a staggering 66 percent. Canada currently spends $10.4 billion dollars each year to care for people with Alzheimer’s but aside from the financial impact, it’s the personal toll on caregivers—often immediate family and partners—that is the most devastating. Cognitive decline requires a level of attention that is full-time. At best, it's a lot of work. That work is compounded by watching permanent changes in the people you care about.
Several years before Grandma Joan passed I noticed Grandpa’s memory declining. At birthdays or holiday dinners he’d have trouble remembering exactly why the family had gathered. He’d call cousins by the wrong name. If I brought home a new girlfriend, I’d have to introduce Gramps dozens of times. But these small fumbles were usually eclipsed by Grandpa’s natural charisma. He'd smile with teeth and turn his mistakes into jokes ( I have the memory of a wooly mammoth! It's like an elephant's, but a little fuzzy!). Anytime things got too confusing his wife would step in to walk him through the situation. That was normal for their relationship. Even before Grandpa got sick Joan was always stepping into help: adding flair to his stories with colourful anecdotes or adding a few extra pinches of necessary seasoning to his famous spaghetti recipe.
What I hadn't realized—what none of us had really realized—was just how reliant Grandpa had become on Joan. She was a tether for Gramps as his cognitive ability started to decline. Their relationship—their love, really—kept things grounded. Without her his reality started to drift.
The seventh time we told Grandpa that his wife died was actually at her funeral. As the family stood shaking hands with the mourners, my Grandfather was confused. He kept telling everyone he was getting an award. Best Golfer, third year running. The golf narrative gave him context, but people weren't content to let him drift in such an important situation. After being corrected for the seventh or eighth time about his location, Grandpa grew frustrated. He wanted to leave immediately. He asked one of the funeral directors if his wife could come get him. Calmly we explained she was gone. He'd have to stay a little longer.
The ninth time we told my Grandpa that his wife died he got angry. He said he was sick of us. He just wanted to see Joan.
The anger was new. All my life I had never known my grandfather to be angry. Stern, sure, but never mad. Watching him like that I wondered if the disease had started to pick away at his pleasant demeanor, or if the inherent awfulness of being kept from his partner—being kept from his partner by these awful people—had just pushed the limits of his patience.
I often think about the way my Grandpa interprets the world now. What does it feel like in his day-to-day? What does it mean to lose years of your life? I've tried to ask him some variation on these questions, but the answers are never satisfying. Mostly he just kind of smiles and shakes his head. It’s beyond his ability to explain and my ability to understand. Lately when I visit I have to introduce myself. I tell him that I’m his grandson. He grips my hand hard. Is that right? My grandson! Is that right?
Sometimes Grandpa and I will play cards. When I was little we’d spend hours on epic games of War where he’d win my allowance money. Now we opt for something simpler like Go Fish. Even that has its limitations. Recently I’ve started to take my camera with me. Grandpa comes alive in front of the camera. He happily hams it up, laughing while I tell him tales of his youth. I snap pictures and let him know that the city gave him a plaque for public service, that he was once a published author.
The 22nd time we told my grandfather his wife died I honestly thought it had sunk in. We were watching Jeopardy. He asked where she was and we explained she had passed. Gramps said yes, I know that. There was hopeful a pause then we all continued to play along with the game. By the time Wheel of Fortune had started he wanted to see Joan.
The 35th time we told my Grandpa his wife died I felt defeated. I was so angry we had to relay this horrible information over and over. It was a shock for him every time. I didn't know how we were supposed to keep this up.
I thought about telling my grandfather his wife had been recruited by the CIA. She was off defeating ISIS using only her preternatural baking ability and her unparalleled knowledge of comedian Dame Edna.
I thought about picking at his memories until, somehow, he could tell me stories like he used to: how he and Joan got lost in Greenwich Village during a honeymoon trip to New York, how the two of them met picking fruit in a strawberry patch, about the community theater show they wrote together… a musical retelling of the Chicago fire where Grandpa starred as Mrs. O'Leary's cow.
But I didn't do either of those things. I said Joan—my Grandma, his wife—was gone. Then I got us each a Diet Coke and we sat and drank in silence.
When you ask experts about helping a person with dementia accept death the responses are mixed. They always suggest being honest about the situation, using short, clear, sentences to describe the situation. Being dishonest about what happened can cause further stress to the person you're telling: if they're told someone is going to come back and they don't, it can lead to worry and agitation. But in my family's case the advice didn't seem as applicable. The best tactics seemed to be avoidance and distraction. It seems kinder somehow even if it isn't what you're supposed to do.
The 56th time we told Grandpa that his wife had died...we decided not to tell him at all. He asked where is Joan. We said she was at the hospital. Gramps asked if he could go see her. We said not now. But maybe later. He said oh...OK, good.
So now—unless he really pushes—that's what we tell him.
With dementia you lose things by attrition. Small things at first. Birthdays. Phone numbers. Then bigger stuff. Your ability to drive. Cooking, cleaning. Your independence. But watching my Grandfather it is the loss of time seems to be the hardest. Without the ability to measure things chronologically the context for his day-to-day gets hazy. Anything new is forgotten fairly quickly. The things he knows from before seem to be going too. So now most days Gramps just sits in his chair and waits for a time when he can see his wife again. Sometimes I sit with him. I tell him who I am and the two of us play cards.
Graham Isador is a writer in Toronto. @presgang