#4: What is it like to lose your memory?

We’re big believers that life is about the stories you create along the way. If someone took those stories from your memory what would you have left? Alzheimer’s sounds terrifying. Estimates suggest that 28 million baby boomers will have the disease by 2050. Instead of getting ahead of the problem with rigorous scientific studies and trials, the American public is spending much more money on treatment of Alzheimer’s patients. This paradigm needs to change. We offer you two stories on the disease this week. One is a video looking at the funding imbalances and the impact on those left behind. The other is a rare first person account of what it’s like to have lost a mother to Alzheimer’s and then to learn at age 38, you also have the disease. This story, out of Canada, offers us a glimpse into how it feels to lose your memory and have no control over your mind’s deterioration.

In Remembering Ken, we see the sadness and feel Brenda Bouchard’s frustration. Here’s a clip of that video:

Watch the entire video tribute and plea for better funding and research.

“Once you start down this path, to Alzheimer’s,” says Brenda Bouchard, whose husband, Ken, has Early-Onset Alzheimer’s Disease, “there’s no coming back. There’s no cure, there’s nothing that can prevent it, there’s nothing that can really slow it down.” Her story, and how she is fighting for more research into a cure, can be found on YouTube: “Honoring Ken.”

“What you’re seeing is many leading researchers leaving the [U.S.],” says Bernie Sanders, the U.S. Senator from Vermont, and 2016 presidential candidate. “They can’t get the grants they need to do their work. I believe in prevention. I believe it makes sense to invest in trying to understand the causation of disease. In the long run, it saves us money, and it certainly eases human suffering.”

Bouchard states we’re currently spending under $600 million on research for Alzheimer’s, while Medicare and Medicaid are spending $153 billion to care for people with Alzheimer’s Disease. “So, the only way to reduce the cost of Medicare and Medicaid is to put more money into research to find a cure for this disease,” says Bouchard.

The Alzheimer’s Association reports: The National Institutes of Health spends over $6 billion a year on cancer research, over $4 billion on heart disease research and over $3 billion on HIV/AIDS research. But it spends only $480 million on Alzheimer’s research.

“By 2050, it’s projected that 28 million baby-boomers will have Alzheimer’s,” says Bouchard. “We need a commitment of $2 billion a year in funding to cure this disease.”

A recent profile on Jo Aubin (Shannon Proudfoot, Maclean’s), a person suffering from Early-Onset Alzheimer’s –he’s 38 –illuminates the disease, decline in cognition, and life in chaos that people with Alzheimer’s, their families and friends experience:

Here’s a clip of Aubin and his doctors: http://bcove.me/4g6kd6oz

One evening late in the fall, Jo planned to meet Robin [Jo’s wife] at Beal for a dance show. He was going to take a bus he’d been on countless times, but he got on the wrong one, then forgot where he was going. He hadn’t taken his phone with him, and Robin spent frantic hours trying to find him while he rode the bus to the opposite side of London [Ontario] and back. Finally, after midnight, Jo walked in the door of their apartment. That was the end of him taking the bus on his own.

Shawn and Jo met in Grade 9; Shawn named his oldest son Luke Joél, after Jo

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One night at the end of April, things fell apart anew. Jo and Robin were in bed reading when Jo began flailing one arm and staggering around the bedroom. Robin was terrified. She managed to calm him down, and he said he’d thought there was something after him. Once he fell asleep, she spent the rest of the night online, researching Alzheimer’s and hallucinations. The next day, Jo seemed a little foggy, but otherwise normal, and they went out to run errands. While they were in line at a store, Jo suddenly stepped in close to Robin, threw a wild-eyed look over his shoulder, and launched into the same defensive motions. This episode lasted much longer; two men nearby helped Robin guide Jo to the floor and someone called the paramedics. “I was a total, total mess,” Robin says. “It was terrifying thinking, ‘Is this what it’s going to be now? Is this what life is going to be?’ ” After several hours in emergency, the doctors diagnosed Jo with seizures, which are not uncommon with Alzheimer’s disease.

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The next day, he and Robin were in the car when he had another seizure. “His entire face blanked out,” Robin says. “It was like somebody else was there.” She asked if he was okay, and he couldn’t answer. She pulled the car over. “Do you know who I am?” she asked. No. “Do you know who you are?” she asked. No. “I’m Robin,” she said, horrified. “I’m Robin?” Jo asked. “No, you’re Jo. I’m Robin, I’m your wife,” she explained. “Okay, you’re my wife,” Jo replied.

“That was the worst,” Robin says. “All of a sudden, it was like we went off a cliff.”

***

Alzheimer’s has taken so many choices away from Jo. He didn’t get to decide when his career ended, or when the plots of his favourite books slipped away, or how this disease affected his wife and the other people who love them. So here is what Jo wants now: He wants to decide how much suffering is too much, and when his life should end with dignity, and he wants to be able to communicate so he can say goodbye. What he does not want is to linger in a care facility. “Thinking of my mother and how she suffered for so many years, it’s not right,” he says, weeping. Robin talks, ever so gingerly, about why Jo wants to draw his own line in the sand, and he reaches out to touch her for the first time, tentatively stroking her leg. “It’s a disease where there isn’t a whole lot of hope. There is zero chance of a happy ending,” she says. “That’s just the reality of the treatment of the disease right now. The only thing in front of us at the end of the disease, and Jo’s life, is a very, very horrible way to die.”

Here’s the full tribute to Ken: