Michael and Family


A Disappearing Dad
Matt Hartley

The Globe and Mail
November 16, 2007
Reproduced with permission of The Globe and Mail

Michael Shin sat in the living room of his Scarborough, Ont., home while his daughter, Erica, opened her presents for her eighth birthday. Leaning awkwardly on a metal folding chair near the dining room, he watched as she tore off brightly coloured paper, while his two other children began setting up Erica's new hand-held video game. Once the presents were opened, Mr. Shin stood up and walked into the kitchen, where his wife, June, was spreading chocolate and vanilla icing on a fresh batch of cupcakes. Although the warm August night was full of the din of his daughter's party, Mr. Shin just sat silently staring as his family and friends bustled around the kitchen.

The next morning, Mrs. Shin put her husband's belongings into the car and drove him to his new home - a long-term-care facility. Michael Shin suffers from frontotemporal dementia, a "reverse Alzheimer's" that first takes away behavioural and social skills, with memory fading only later. Already, he is unable to interact meaningfully with his children. Soon, he won't be able to walk or speak. In a few years, it will kill him. Mr. Shin is 49 years old.

  • Researchers now believe that 5 per cent of all dementia patients have some form of frontotemporal dementia (FTD).
  • There are about 300,000 Canadians who suffer from dementia. Over the age of 70, FTD accounts for only about 2 per cent of cases.
  • However, among people under 65, FTD is the second-most-common form of dementia, making up about 20 per cent of cases. As many as 15,000 Canadians could have FTD; much of the time, it goes undiagnosed.
  • Unlike Alzheimer's, which is more likely to strike older patients, FTD tends to hit people in their 40s, 50s and 60s, although patients can be diagnosed as early as their late 20s. Many people suffering from FTD are still caring for elderly parents, or, as in Mr. Shin's case, have young children.
  • From 25 to 50 per cent of FTD cases are believed to be hereditary, with the rest occurring sporadically in the population with no apparent genetic link. It is incurable.
  • FTD attacks specific areas of the brain - the frontal and temporal lobes - causing nerve cells in those areas to shrink and die.
  • The frontal lobe of the brain houses cells that affect a person's judgment, impulse control, social skills and language abilities.
  • As the cells in those areas atrophy and die, patients lose their ability to interact with others.
  • They begin to act erratically, can develop compulsions, become indifferent to their families and withdraw from the world around them.
  • In some cases, other areas of the brain are also affected, resulting in additional symptoms.

More than depression
Three years ago, Mr. Shin lost his job as the manager of a dress-manufacturing company. The company said it was a result of cost-cutting layoffs, but, thinking back, his wife isn't so sure. Mr. Shin had worked there for more than 20 years and his late father had been a pillar of the company for more than 30. She now believes her husband was let go because of the early symptoms of his condition. It was the first sign that something was wrong.

"About six months after he lost his job, he didn't seem to be too motivated in trying to determine what his next steps were going to be," she says. "Because his dad had died the year before and then he lost his job, I thought it was depression."

Mrs. Shin tried to give her husband space, despite his growing moodiness and apathy, but he didn't initiate conversation with her any more and when they did speak, they argued. He would scream at the kids over things that never upset him before.

He signed up for a real-estate-training course, twice, but dropped out. A bartending course brought the same result. Money got tight, and Mr. Shin didn't seem to care. Soon, the couple were sleeping in different beds and on the verge of divorce.

"He was emotionally flat," she recalls. "He was unable to see anything beyond himself and became very focused on just his little world. I just couldn't understand why Michael was like this."

As the months went by, the family's situation grew more dire. Mr. Shin had no concept of time, began taking his kids to the wrong hockey rinks for games and even though he was eating junk food all the time - something he never did before - he was still losing weight. He looked weak. He started to shake. His spine started to curve. He didn't walk so much as stumble around the house.

Ms. Shin feared he might be developing Lou Gehrig's disease (amyotrophic lateral sclerosis or ALS), which had killed his father.

Mrs. Shin nearly had to drag her husband to see the family doctor, who recommended that he see a therapist. But after a few sessions, it became clear the problem wasn't psychological. It was something much worse.

Mr. Shin had always been an excellent driver, but in February of 2006 he started getting into strange car accidents. In one frightening incident, he reversed into a car on Highway 7 in Markham after missing the driveway he was looking for. That July, he hit a parked car on the street outside his house. He told his wife that it was a small accident, but in reality the family van was totalled. The police were called and Mr. Shin was nearly charged with dangerous driving.

The accidents alone cost the family more than $10,000 and Mr. Shin, who always had been organized about money, seemed to have lost all concept of finances.

He was talked into spending $8,000 on personal training, nutritional counselling and a personal trainer at a local gym.

Three different companies were fertilizing the family's lawn at one point because they would cold-call the house and Mr. Shin would agree to have them come by. After a salesman came to the door one day, he switched the family's Internet and phone service to a new company at a higher price.

It wasn't long before Mrs. Shin had to start pulling money out of the family's RRSPs to cover basic costs. Now, she's not sure how she's going to be able to afford to send her kids to university.

"He would make Internet purchases until bill paying became an issue, because it wasn't even happening," she says. "He'd just spend and then he didn't ever pay anything so the notices would come and we were in danger of having the credit card cut off."

Mr. Shin started developing uncontrollable eating habits. He would use half a bottle of salad dressing at a single meal. He nearly caused a fire when he left a bag of popcorn in the microwave for more than 10 minutes. He became incontinent, stopped bathing and once soiled himself at a family picnic. The kids stopped bringing their friends around. Mrs. Shin wondered how much more she could take.

In December of 2006, Mr. Shin was finally diagnosed with FTD by doctors at Sunnybrook Hospital in Toronto.

Mrs. Shin feels like she has lost almost everything. She started dating her husband when she was just 16, when they met at an event at a Japanese cultural centre 33 years ago, and the pair have been together ever since.

"We never talked a lot about the future," she says. "I just figured we'd continue the way we were. We were very comfortable in the relationship that we had."

A terrible loss
Sandra Black, who officially diagnosed Mr. Shin, has been treating FTD patients for close to a decade and has seen the devastating results.

"It's an extremely difficult disease on the families," says Dr. Black, who is the head of neurology at Sunnybrook Health Sciences Centre in Toronto.

"I think it's just about the worst imaginable, because the person starts to lose their sense of others and the needs of others. So for a spouse, you lose the person in a whole different way."

When the diagnosis came, "I knew already," Ms. Shin says. "I had read everything I could get my hands on already. … I said I needed to know what kind of variant it was. I said I was prepared. But you're not really prepared.

"There was almost a sense of relief, knowing that somebody is actually telling me now as opposed to me trying to guess what it was. Because this is such an uncommon disease, trying to figure out exactly what it was, was pretty stressful," she says.

Like Alzheimer's, an FTD diagnosis is a death sentence. Although some patients live as long as eight years after symptoms first occur, most don't make it that far. "Sadly there are [no treatments]," Dr. Black says. "There are some things that we're trying out. It's so much rarer than Alzheimer's, so it hasn't had the same attention."

Alzheimer's patients retain many of their social skills for some time after symptoms begin. They can be affectionate, even clingy, but family members generally don't initially get the feeling that they are unwanted or unappreciated.

As Mr. Shin became more withdrawn and detached, Mrs. Shin had to explain to her children that their father didn't mean to laugh when they fell down, but just didn't know how to react any more.

"With frontotemporal dementia, you get someone who no longer gives a d**n about you or anyone else. They no longer feel. They no longer care," Dr. Black says. "They're not happy when a child graduates or something good happens. They don't feel bad when a mother dies. It's really hard and usually it has a big effect on the marital relationship."

She says FTD often causes people to do things they never would have done before. They have lost the ability to see themselves through the eyes of others, so they don't understand why people are shocked or appalled.

"I remember one case of a grandfather, a very respectable man, who started molesting children in his neighbourhood," Dr. Black says. "He actually got arrested and we had to do everything we could to prevent him from going to jail."

One of the first patients Dr. Black ever diagnosed with FTD was a school principal who began to behave in ways that were upsetting his family. They suspected something was amiss with him, but couldn't put their finger on it.

During a dinner party one night, the principal got up from his chair, walked to the corner of the dining room and urinated on the floor. He was diagnosed with FTD a short time later.

"I remember my patients with this condition very vividly, because each person is so unique and the suffering that went on somehow strikes you because there aren't that many," Dr. Black says.

"I've learned about and lived through these diseases with patients in a way that gives you a lot of respect for how it can destroy lives, often young lives."

What happened to my dad?
While the past two years have been hard on Mrs. Shin and her husband, they have been especially difficult for the couple's three children - 14-year-old Thomas, 12-year-old Jaclyn and Erica, 8 - who have been losing their dad slowly. Mrs. Shin did her best to maintain some semblance of normalcy: Thomas and Jaclyn play hockey, while Erica has moved from gymnastics to cheerleading, and all three still take swimming lessons.

Now, she had to explain her situation to her friends and family. Her husband's increasingly erratic behaviour had resulted in many awkward social situations. So she sat down at her computer and typed up a few pages about what was going on with her children's father and sent it out via e-mail. She called it, "Where's my dad?"

Thomas Shin is a fairly typical kid in his second year of high school. He is a skillful Guitar Hero player and a right-winger on his hockey team. He lets his long black hair dangle in front his eyes. But, unlike his peers, for the past two years Thomas has had to play caregiver to his father alongside his mother. He would change the bed sheets after his father had an accident and help him get into the car. When his father wandered out of the room, his mother would send Thomas to check on him.

"It's been hard the last couple of years," he says the night before his father moved out. "Because at first he got mad really easily and then he got into car crashes a lot and now he can't drive or walk or whatever."

The final indicator that Mr. Shin could no longer care for himself came a few weeks earlier, when Ms. Shin came home to find a puddle of blood at the bottom of the stairs near the front door. Panicked, she ran through the house in search of her husband. He said he had fallen down but he was fine. But when he turned around June noticed a gash on the back of his head; his shirt was matted with blood. She rushed him to the hospital - the wound required 17 stitches.

Meanwhile, Thomas had come home from school and had seen the blood stain on the carpet. He was upset, he told his mother: What if he had been the one to come home and find his father lying in a pool of blood at the bottom of the stairs?

That's when Mrs. Shin started to consider a long-term-care facility seriously. "I don't want the kids to have to deal with that," she says. "That would be very frightening for kids - and it could have been Jaclyn."

Thomas says he's relieved his father is now in a place with elevators. "I know it's going to be better for all of us. Because he'll be better taken care of and we won't have to clean up his messes and stuff. But I guess I'm sad, because he's been my dad for, like, all my life."

Mr. Shin's brother, Stephen, lives in Florida and usually comes north to Toronto to visit his family several times a year. However, in the past 36 months, with each passing visit, he was shocked at the rapid decline in his brother's health.

"He's a different person, it's like he took an aging pill," Stephen says. "I see he's so different than he was before. I think that's really what strikes me. I find myself overcompensating when we talk. You look at this shell, and you wonder if maybe there just isn't anything going on up there. It's just not the way it should be."

When he looks at his gaunt, unsteady and confused brother, Stephen remembers the devoted father and husband who "did laundry like it was the army" and drove the kids everywhere.

"I was so impressed with the way they worked as a team, as a marriage," he says. "Because June had to get up early, Michael used to get the kids up, feed them and he'd have all their books and their bags lined up at the front door with the shoes they were going to wear beside their jackets."

Because Michael suffers from FTD and his father died of ALS, Stephen has started to worry about his own health. "I look at Michael now, and I hate to say this, but I think, 'Oh my gosh, I really do need to go and see if it is genetic,'" he says. "It scares me. It scares me a great deal."

Canadians lead the way
"Although FTD isn't as common as Alzheimer's, the fact that it affects slightly younger people maybe makes it a little bit more important relatively speaking from a socioeconomic point of view," says Ian MacKenzie, one of Canada's foremost FTD researchers.

"It's still affecting people who are employed and who are the breadwinners of the family. Whereas Alzheimer's tends to affect people who are past those stages of their lives."

In July of last year, Dr. Mackenzie, alongside Dr. Howard Feldman and a team of researchers at UBC Hospital Clinic for Alzheimer's Disease and Related Disorders, pinpointed the cause of an inherited form of FTD, paving the way for potential future treatments. Experts in the field call it one of the most exciting discoveries of the past 15 years.

Working with colleagues at the Mayo Clinic in Jacksonville, Fla., the team found that mutations in the progranulin gene accounted for about one of every four inherited cases of FTD. The mutations result in an underproduction of the progranulin protein, which assists in nerve-cell survival.

This mutation has now been discovered in more than 80 families worldwide, Dr. MacKenzie says. Researchers are now focusing on understanding what causes the genetic mutation.

Just a few months later, the Canadian pair were involved in another major discovery. Researchers knew that nearly 50 per cent of all patients suffering from Lou Gehrig's disease are found to be suffering from some form of frontotemporal dysfunction unrelated to their motor problems.

Last year, Dr. Feldman and Dr. Mackenzie, working alongside doctors at the University of Pennsylvania, discovered that both conditions are characterized by abnormal accumulation in neurons of a protein known as TDP-43.

However, researchers have not figured out the connection between reduced progranulin levels and abnormal TDP-43 accumulation. "The specific link ... is not yet known, but both of these important discoveries are crucial to better diagnosis and treatment," Dr. Mackenzie says.

Others, meanwhile, are trying to help the families of those giving care to patients. Tiffany Chow is a behavioural neurologist at Baycrest in Toronto whose research involves finding meaningful non-pharmacological interventions for FTD.

Last September, her department received a grant from the provincial Health Ministry to set up a specialized day program for patients at the hospital's memory clinic. Caregivers can drop patients off in the morning and pick them up in the afternoon, secure that their special needs will be attended to.

"Although they have a dementia, they are not the same as Alzheimer's patients," Dr. Chow says. "They're not the same age and they don't have the same kind of frail, elderly health problems, so they don't fit in a typical day program for seniors. Their behavioural changes can cause them to be a little bit grabby or compulsive or insistent and in many situations that is not compatible with frail and elderly people who would be in a day program."

There has been a great deal of difficulty in mounting convincing drug trials because FTD often goes undiagnosed for years, she says.

"It's not as prevalent in the population as Alzheimer's and it's happening at times when people might be seen to be having a midlife crisis," Dr. Chow says.

"It's often delayed an accurate diagnosis - people are misdiagnosed with a psychiatric disorder such as stress, depression or alcoholism."

The only drug that has been proven to have any consistent success treating FTD patients in scientific testing is tazodone, an antidepressant and sedative, which helps to alleviate some of the behavioural symptoms.

"Then we hit another phase of the illness which is where they start to shut down, they speak less, they move around less, they become very apathetic, they may actually stop eating as much," Dr. Chow says. "And then the tail end of that phase is when they just want to lie in bed. And that's when they look pretty much the same as an end-stage Alzheimer's patient."

As with other patients who suffer from dementia, the bedridden are prone to urinary-tract infections and pneumonias. They are in danger of having weakened immune systems due to malnutrition.

In the end, it's a disease that everyone involved struggles to understand, Dr. Black says. "Suppose you're an intelligent person and this is happening to you and you know that it's happening to you. How do you deal with that? How do you get your head around the fact that you're going to stop being able to feel for your children?"

Moving on
For Mrs. Shin, there are mountains of paperwork and loose ends to tie up, lunches to be made, laundry to do and kids to be driven to hockey practice.

But one of the most difficult things is trying to explain her husband's behaviour to businesses and institutions that just don't understand her situation.

For months, she was paying car-insurance fees that worked out to about $11,000 a year because of Mr. Shin's car accidents, even though she has no infractions against her own licence. To reduce her rates, the insurance company forced her to get her husband to sign a document stating he would never drive again.

At the gym where Mr. Shin spent thousands on unused personal training, she had to argue profusely with management in order to recoup some of the costs. She still didn't get all the money back.

But not everyone has been callous. In September, she had to appear in front of a judge to answer to a dangerous-driving charge her husband incurred last year after one of his many accidents.

"I had no idea what I was going to say," she says.

Armed with medical reports, letters from her insurance company and forms detailing her power of attorney, she arrived at the courthouse prepared for the worst and on the verge of crying. But it was the kindness of the judge that brought her to tears.

"He said, 'Oh dear, you're having a rough time aren't you?'" she says. "He said, 'Well, we don't want to make things any more difficult for you, so we're just going to drop all charges.' "

When a spot opened up at the nursing home, she had to move her husband in as soon as she could and wait until later to figure out a way to pay the $1,500 monthly fee. After months of back-and-forth communications with the Canada Pension Plan - including some helpful pressure from her local MP - the government finally let her know that she was entitled to $900 per month to help pay for his care, as well as some money to help her save for the children's educations.

"I was so relieved," she says. "My credit cards were basically maxed out, and there are still so many things to pay for that I've just been putting off."

Things are different now around the family's two-storey Scarborough house. Although Mrs. Shin's parents live nearby and help out when they can, she has become a single mother who works full-time and still tries to find time to visit the man she loves as he deteriorates before her eyes.

One night, she is sitting at her kitchen table near a stack of school permission forms. Erica is watching High School Musical in the adjoining room and Thomas is on the phone with one of his friends while Jaclyn sits nearby playing with crafts at the table.

Mrs. Shin dabs her eyes with a tissue as she thinks about how her husband won't be there to see their kids learn to drive, go off to university or get married.

"It's very sad to think that he will never be able to share in those times," she says. "I mean, there have been a lot of special times already that he hasn't been a part of.

"And trying to explain to the kids that he still loves them, but that he can't ever show it again, is one of the most difficult things."

She appears tired. But she's gentle and caring with the kids. They seem happy. The scene is almost normal.

"As much as I'm Michael's wife, I feel more like his caregiver than a spouse now," she says. "I certainly love him still and would do anything for him, but it's kind of an empty feeling."

She mentions that she's going to visit Michael again the next day and the kids ask if they can go too.

After all, he's still their dad.

Matt Hartley is a writer for the Report on Business section of The Globe and Mail.


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