Growing up, I loved visiting the Holtons. Tara was one of my best friends, and she had two great sisters, Diana and Laura. But another huge draw was her parents Jim and Mary Lynne, who fed me. “Hey, you ate that third burger pretty fast, would you like a fourth? Can you manage a fifth?”

Yes. Yes I can.

There was something natural, familiar, and comfortable about the whole family. And I looked forward to seeing them all – especially at the cottage. The Holtons LOVED the cottage life. They embraced it throughout every summer, and I loved our visits – we’d spend our days in the water, jumping off a low bridge nearby into the lake, and almost every day Jim would take us waterskiing. It was a small slice of heaven just an hour away from home.

I went to visit the Holtons last weekend, and it felt like nothing had changed. We were in Tara’s backyard and right away there was food, and beer, and easy conversation. We talked about old times, and our families, and the cottage. Jim and Mary Lynne always loved to travel, and they had just come back from a trip through Florida, and Winnipeg where they stayed with my mom. But of course, one big thing has changed.

Jim has dementia. Specifically, he has Posterior Cortical Atrophy (PCA), a condition that has a significant effect on the way Jim processes visual information. He was diagnosed in 2015, but it took a full year afterward to discover exactly what kind of dementia it was.

Both Jim and Mary Lynne speak very highly of Dr. Andrew Frank. Dr. Frank is the medical director of the Bruyere medical program and the neurologist who, in 2016, made the diagnosis of PCA. I contacted Dr. Frank who told me:

“Posterior Cortical Atrophy (PCA) is caused by the same protein build-up as Alzheimer’s disease (i.e. amyloid and tau).  However, instead of these proteins building up in the short-term memory regions of the brain (i.e. hippocampus), these proteins build up in the occipital lobes (back part) of the brain which interpret visual information provided by the eyes.  Therefore, PCA leads to progressive deterioration in vision, involving difficulty with depth perception, navigation, and object recognition.  These symptoms can become severely disabling.”

The symptoms have become disabling for Jim. One thing he hates is that he can no longer drive. Driving was one of the things that first caused the rest of the family to worry. Always a good driver, Jim started following cars way too closely. And for some reason no one could fathom, he could no longer park straight. Within a year things were worse. Jim would see people, or sometimes creatures, sitting on his rear view mirror and playing games while he drove.

Garbage day was the worst. He would see garbage bags as he approached them, but as he passed them they would change – become something else, something curious or even sinister. It was time to stop driving and find out what was wrong. Jim says now that he can no longer drive he has a renewed appreciation for the freedom it afforded, even if that was only a quick trip to the store or to a lunch with friends.

And then there was the cottage. It was such a home-away-from-home for the Holtons that Jim had spent years as the President of the Lake Association, but suddenly there were problems. He wasn’t performing his duties. He seemed to be neglecting his position and ignoring the concerns of fellow association members. Mary Lynne began to cover for him, becoming more and more frustrated with his behaviour. Soon though, there was no denying it and they had to tell everyone that there was a medical issue with Jim. The thing was – they still weren’t sure what that issue was. It took a long time, and many tests and appointments, before they arrived at Dr. Frank’s diagnosis of PCA.

Mary Lynne remembers a day at the cottage, where Jim headed off to teach a neighbour how to turn on water systems in the area. Phil was going to be taking on this task for one of the cottages. The previous year, 2013, Jim had turned on and shut off three of these water systems for others. This time though, Phil came back to see Mary Lynne and told her gently, “Jim doesn’t know what he’s doing. He seems pretty confused.”

PCA causes apathy and affects organization, judgement, and initiative. It does not affect memory in the same way other dementias do, and Jim still remembers a few incidents. One day after attending a funeral, Mary Lynne received a phone call from a friend asking if she had found her boots. Jim had called to say that she had left her boots in the funeral parlour. Mary Lynne had not worn boots to the funeral.

Growing up, I loved visiting the Holtons. Tara was one of my best friends, and she had two great sisters, Diana and Laura. But another huge draw was her parents Jim and Mary Lynne, who fed me. “Hey, you ate that third burger pretty fast, would you like a fourth? Can you manage a fifth?”

Yes. Yes I can.

There was something natural, familiar, and comfortable about the whole family. And I looked forward to seeing them all – especially at the cottage. The Holtons LOVED the cottage life. They embraced it throughout every summer, and I loved our visits – we’d spend our days in the water, jumping off a low bridge nearby into the lake, and almost every day Jim would take us waterskiing. It was a small slice of heaven just an hour away from home.

I went to visit the Holtons last weekend, and it felt like nothing had changed. We were in Tara’s backyard and right away there was food, and beer, and easy conversation. We talked about old times, and our families, and the cottage. Jim and Mary Lynne always loved to travel, and they had just come back from a trip through Florida, and Winnipeg where they stayed with my mom. But of course, one big thing has changed.

Jim has dementia. Specifically, he has Posterior Cortical Atrophy (PCA), a condition that has a significant effect on the way Jim processes visual information. He was diagnosed in 2015, but it took a full year afterward to discover exactly what kind of dementia it was.

Both Jim and Mary Lynne speak very highly of Dr. Andrew Frank. Dr. Frank is the medical director of the Bruyere medical program and the neurologist who, in 2016, made the diagnosis of PCA. I contacted Dr. Frank who told me:

“Posterior Cortical Atrophy (PCA) is caused by the same protein build-up as Alzheimer’s disease (i.e. amyloid and tau).  However, instead of these proteins building up in the short-term memory regions of the brain (i.e. hippocampus), these proteins build up in the occipital lobes (back part) of the brain which interpret visual information provided by the eyes.  Therefore, PCA leads to progressive deterioration in vision, involving difficulty with depth perception, navigation, and object recognition.  These symptoms can become severely disabling.”

The symptoms have become disabling for Jim. One thing he hates is that he can no longer drive. Driving was one of the things that first caused the rest of the family to worry. Always a good driver, Jim started following cars way too closely. And for some reason no one could fathom, he could no longer park straight. Within a year things were worse. Jim would see people, or sometimes creatures, sitting on his rear view mirror and playing games while he drove.

Garbage day was the worst. He would see garbage bags as he approached them, but as he passed them they would change – become something else, something curious or even sinister. It was time to stop driving and find out what was wrong. Jim says now that he can no longer drive he has a renewed appreciation for the freedom it afforded, even if that was only a quick trip to the store or to a lunch with friends.

And then there was the cottage. It was such a home-away-from-home for the Holtons that Jim had spent years as the President of the Lake Association, but suddenly there were problems. He wasn’t performing his duties. He seemed to be neglecting his position and ignoring the concerns of fellow association members. Mary Lynne began to cover for him, becoming more and more frustrated with his behaviour. Soon though, there was no denying it and they had to tell everyone that there was a medical issue with Jim. The thing was – they still weren’t sure what that issue was. It took a long time, and many tests and appointments, before they arrived at Dr. Frank’s diagnosis of PCA.

Mary Lynne remembers a day at the cottage, where Jim headed off to teach a neighbour how to turn on water systems in the area. Phil was going to be taking on this task for one of the cottages. The previous year, 2013, Jim had turned on and shut off three of these water systems for others. This time though, Phil came back to see Mary Lynne and told her gently, “Jim doesn’t know what he’s doing. He seems pretty confused.”

PCA causes apathy and affects organization, judgement, and initiative. It does not affect memory in the same way other dementias do, and Jim still remembers a few incidents. One day after attending a funeral, Mary Lynne received a phone call from a friend asking if she had found her boots. Jim had called to say that she had left her boots in the funeral parlour. Mary Lynne had not worn boots to the funeral.

Laura, the Holtons’ youngest daughter, was still living at home at the time of Jim’s diagnosis. Tara was married, Diana was in BC, and it was now just Jim, Mary Lynne, and Laura. She remembers vividly the time Jim couldn’t figure out how to use the phone. He had picked it up to make a phone call, but suddenly it became a mystery. How did it work? How does a phone call get made? Jim, who had retired as the vice-principal of Featherstone Public school less than a decade before, could not understand the phone.

While attending school in the medical field, Laura became an important co-caregiver to Jim with her mom. Mary Lynne describes Laura as “her rock” during this time. Being a caregiver to a person with dementia is a tall task, and a very stressful one, and Mary Lynne was grateful to be able to embark on the journey with her daughter by her side.

But life goes on, and Laura recently moved to Toronto with her boyfriend to work as an RN in the Neonatal Intensive Care Unit at St. Michael’s Hospital. She still feels a tremendous amount of guilt for having left, but Jim will have it no other way. A lifelong educator, he insisted that Laura finish her schooling and become all she can be. He’s proud of Laura, and her success is one of the things that fills his life with joy.

In Laura’s absence, Mary Lynne and Jim lean on The Dementia Society, and the friends they have made through the Between Us support group. It’s a group specifically meant for people with younger onset dementia and their care partners, so the Holtons don’t really qualify – Jim is the oldest in the group by a fair margin. But the Dementia Care Coaches at The Dementia Society felt that the Holtons would fit better with this group, in part because of their relatively youthful and otherwise healthy lifestyle.

It also works because Jim’s rare type of dementia means that he can better relate to others in the younger onset group. During a session, after an introductory greeting, the couples split up – Mary Lynne goes with the group of caregivers while Jim stays with the group with dementia. Here, he carries the conversation. He drives the group forward with his insights and his perspective. He’s an important and intrinsic catalyst for the coping process in this group, through his sharing of his own coping mechanisms.

Jim talks about coming to terms with his condition – he sometimes loses his train of thought during a conversation, but he knows that if he stops, and waits, either that train will come back or he’ll be able to pick up the conversation once again. He explains that while he initially felt frustration and anger when he couldn’t understand something, he now pauses. While he feels sad that this once familiar thing is no longer accessible to him, he realizes that becoming angry only makes the confusion and noise in his brain worse.

In my entire life, I don’t think I’ve ever heard Jim speak more than he does at the Between Us support group. My childhood was filled with the sound of Mary Lynne’s voice. Mary Lynne talks a lot. She has always talked a lot. And it has always been one of the most charming things about her – even hearing her voice now brings me back to a familiar and happy place in my childhood. But Jim was quiet. Not reserved, not shy, and not meek – just a man of few words.

The words that he speaks now are, like all the others he’s spoken in his life, carefully chosen. We’re sitting in Tara’s backyard, just three doors away from Jim and Mary Lynne’s house on a quiet and friendly street in a South Keys neighbourhood. Tara’s husband is grilling burgers and hot dogs, and her daughter is taking the dog through an elaborate obstacle course she’s set up in the backyard. Tara’s kids will never know their grandfather the way Tara knew him, or even the way I knew him. I’m digging into my second burger when Jim says,

“I’m worried about the future. Of course I’m worried. But at least this – I like this.”

The rest of us, mouths full, nod in agreement. We like this too.