Dementia was a dirty word for Pat Mutch and her husband, Don, never to be spoken. On the day he was officially diagnosed in 2003, he told her angrily, "Don't you ever take me back to the doctor's office again. I know I don't have Alzheimer's."
No matter how gently his wife raised it, the former farmer and executive with the Canadian Pork Council, then 73, refused to discuss his disease, or the complications it was creating in their lives. Even after he lost his driver's licence, he still tried to get behind the wheel, or insisted he drive the last little bit to church so no one would see her behind the wheel. She struggled to get him bathed, and put up with his daily flare-ups.
"You've really hit rock bottom," says Mrs. Mutch, 78, who lives outside Charlottetown. "You've lost the love of your life, and you don't know where to turn."
And what if your family, despite good intentions, can't see how hard and lonely your life has become? That's how Mrs. Mutch felt - that her children were failing to fully acknowledge the toll that caring for their dad was having on her own health and emotions. Her extended family was little help: Her husband's brother, for instance, refused to visit, "wanting to remember Don as he was."
Her four children knew their dad was sick, but they didn't accept or recognize the severity of his symptoms, and she felt guilty complaining. But at he same time, she couldn't keep going - after all, as his disease progressed, her caregiving duties would only get heavier.
"Any child can come and visit for a couple hours," she says. "They don't see the true picture."
A sick parent raises all kind of difficult questions that can tear families and siblings apart: Who will provide care? Who will control the money? Who will make the tough call about taking away the driver's licence or putting a parent in a nursing home? Second marriages and stepchildren add to the already complicated situation. Money - how it's spent, and who spends it - is a big cause of tension. And often, experts say, families fail to consider how old squabbles and sibling rivalries may shape today's conflict.
"They'll talk about things that are fun and good," says Judy McCann-Beranger, who as an elder mediator works with families to settle caregiving issues involving dementia and other health problems.
"But things that are tough, that may create conflict, sometimes people are slow to go there."
Elder mediation is still a fairly new concept, although more families are seeking out this kind of help. Often care-giving decisions are made in the doctor's or lawyer's office with only the primary caregivers presence. But in elder mediation, everyone packs into a room - from the grandkids and in-laws, to neighbours and best friends. The largest group Ms. McCann has mediated include 21 members of one family.
The role of the elder mediators is to getting the best care for the patients, relieving the burden of the primary caregiver, and making sure family members, who may not otherwise be vocal with their opinions, have a chance to be heard. Often they will refer families for legal advice or counselling. Sessions can cost $100 to $400 an hour. Some government programs are beginning to offer a form of family mediation, but most employee-assistance plans still don't cover it.
In an office set up like a living room, Pat Mutch, her four adult children and their spouses sat down together over coffee and muffins for a reality check. (By then, Don was too ill to participate, though the patient often does.) Over two hours in this neutral space, the mediator laid out the details of Alzheimer's, their dad's progression, their mom's struggle to cope. Then, she put the question to them: What are you prepared to do to help?
"It opened their eyes," Mrs. Mutch says.
Her children quickly stepped in: One son would drive him to appointments. Her daughter would bring him more to her place on a Saturday. Or they would come and spend afternoons at the house, so Pat could have some time to herself. Even her son, Andrew, a music therapist who was living with his mom and helping with his dad, realized the two of them needed to communicate more about how to work together.
"There were things that she wished I was doing," he says. "It was great for my brothers who were in denial about what was going on." And elder mediation, he points out, also saves the health care system money by making it possible for families to work together more effectively to keep the patient home longer.
Mrs. Mutch estimated that the support of her children allowed their dad to stay home for an extra year. He's now in a locked ward in a psychiatric hospital where Pat goes almost every day to feed him his supper. When it came time for that decision, in the spring of 2007, Pat felt she had the support and encouragement of her children.
"It took away the loneliness," she says. "We became a team."
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