For Quintin, an officer with the Royal Canadian Air Force (RCAF), the story begins in 1966 at his base camp in France. He and his wife, Willow, were used to upset stomachs (the food, the water and the hygiene facilities were different from Canada), but in this case, the flu-like symptoms persisted for many months. Quintin lost vitality and grew pale. Later, on a posting to Washington, DC, he experienced recurrent bouts of malaise, and found, to his chagrin, that the military doctors thought he was an alcoholic.
Then, Quintin began to lose weight. At one point, he lost five kilograms in one month, and had recurrent bouts of diarrhea. By 1981, he had lost 10 kilograms and looked gaunt and tired. Finally, the base doctor called him. “You have target cells in your blood,” he said, “Come see me.”

Pricked, poked and prodded
After seeing the doctor, Quintin saw a hematologist, who referred him to the National Defence Medical Centre where he was pricked, poked, prodded, and scoped. The following week, Quintin had 12 biopsies: eight liver biopsies and four bone marrow samples. His liver was fine, but there was no iron in the bone marrow. One test left, an endoscopic biopsy, in which tissue samples are taken from the small intestine.

Finally, a diagnosis
The day after the endoscopic biopsy, Quintin finally learned what was ailing him: celiac disease or gluten sensitive enteropathy, in which gluten, a protein in wheat, rye, barley, and triticale destroys the villi, the little velvety fingers that line the small intestine. It is an incurable disease of the immune system.
Fortunately, a rigid gluten-free diet helps control the effects of the disease. After being put on this diet, Quintin recovered quickly. Within three weeks, the anemia was gone, and within six weeks, he gained five kilograms and his energy returned.

All in the family
As Quintin recovered, Willow was diagnosed with osteoporosis and developed hypothyroidism. She was tired, weak, and thin. Drug therapy helped the hypothyroid problem but not even the newest medications aided the osteoporosis. With her new knowledge, she finally said to herself, “Hypothyroidism is an autoimmune disease. Wouldn’t it be ironic if I had the same condition?”

So, Willow visited her doctor and asked for a tissue transglutaminase (tTG) test. To her surprise, it came back positive! Three months later, her endoscopic biopsy confirmed celiac disease.

Now, after a year on her own gluten-free diet, her migraines have gone, her osteoporosis has stabilized, and she has gained eight kilograms. Her energy has doubled, and, like Quintin, she feels much better.

Carol Foote just can’t seem to make plans and keep them. Friends have stopped asking the woman from Miramichi, New Brunswick, to go for a coffee, get together for lunch or take in a movie. Carol’s not irresponsible. It’s just that, for more than a decade, most of her energy has been focused on her ailing, 73-year-old mother, Alice Richardson, who requires full-time care.

Against the odds
When Alice suffered her third stroke in 1993 at age 62, doctors advised the family that she would probably live for just a few days. Against the odds, Alice survived, but she faced the prospect of being placed in a nursing home. Carol and her husband, Leonard, who were six months into their new lives after relocating to Lacombe, Alberta, made the decision that they would provide the care Alice needed. The couple had previously lived in Fredericton, but they willingly moved to Alice’s home in Miramichi.

Constant caregiving
The more than 11 years since then have not been easy. Alice is completely paralyzed on her left side and is unable to speak, although she often “acts out” in anger or frustration. She can feed herself but is completely reliant upon Carol for everything else. Alice’s short attention span means the family’s TV needs to be tuned to action-packed programs and played at a louder than average level to hold her attention. While her mother is TV watching, Carol uses the opportunity to take care of her normal household chores.“Caregiving is constant,” says Carol. She notes that a caregiver can end up losing friends, because you can never make solid plans when you’re always on call. “I love my mother dearly,” stresses Carol. “I’m not complaining. In fact, I feel blessed to be able to look after her.”
With birthdays, Christmas, and other holidays being big family events with us, it’s important that our mom, Vivienne, is with us. This is particularly important now
that we have young children.

While it requires a bit of effort—we’ve been long distance caregivers ever since mom had a stroke—we’ve managed to bring mom out of the nursing home quite regularly to celebrate together.

The drill goes like this: we’ve installed a wheelchair ramp that allows us to get the wheelchair into the house. Each time mom visits, we rent a home care bed and commode that are delivered the day before she arrives. We then hire a nurse from the local home care agency to help with personal care, grooming and dressing each morning for two hours and then again at bedtime.

Mom maintains her dignity and privacy, and we’re not stressed by not providing adequate care. Overall, our plan is stress-free and certainly works well to keep mom involved with the entire family.