Remember ME - You Me and Dementia

June 14, 2011

CANADA: When Mom Needs A Hand

ST. JOHN'S, Newfoundland / The Telegram / Life / June 14, 2011

Women shoulder greater responsibility when elderly parents fall ill

VANCOUVER - Six years ago, Carol Lange was having a peak experience: after 16 years with a large company she had reached the level of senior executive, and she was jetting around North America.

She was in a happy relationship and, in her late 30s, was thrilled to be pregnant with her first child.

When Carol Lange’s mother Janet Siebert developed dementia, her life turned upside down. — Photo by Postmedia News

Then the phone calls started coming. “My mom had left a few messages, increasingly frantic. She was in her late 70s, and had always been eccentric, but this was over the top.”


Lange wasn’t too concerned — until her mother ended up in Vancouver’s Lions Gate Hospital. Doctors called Lange in to tell her that her mother had been diagnosed with dementia.

“The doctors said, ‘We won’t send her home unless you put 24-hour care in place. She won’t be safe.’”

Suddenly, Lange’s world was turned upside down.

Her only sibling, a brother, lived and worked in the United States.

Like so many daughters, Lange would have to shoulder this burden alone.

Statistics show that 60 per cent of female caregivers are responsible for regular care of dependent elders inside the house, including meal preparation, cleaning and laundry.

A new poll commissioned by a U.S. eldercare provider, Senior Helpers, shows the gender roles are so entrenched that 70 per cent of mothers with both a son and a daughter would overwhelmingly choose to move in with their daughter rather than their son if they could not take care of themselves.

For working women at the peak of their earning years, taking on the role of caregiver often means cutting short their hours, earnings and careers, turning down promotions and, ultimately, making financial as well as personal sacrifices.

Lange had nothing in place that could have helped her: no power of attorney, no guardianship.

“You’re the daughter, you’re trying to figure out how to do what’s right, but you can’t get a copy of anything from anybody. You’re completely stuck.”

She couldn’t just make decisions and sign off on them.

She would have to apply to the court to get permission to act on her mother’s behalf.

There were myriad decisions to be made: how long could she realistically keep her mother in her own home? How would they pay for in-home support?

If they couldn’t afford round-the-clock in-home care, how could Lange manage her own life and career, and manage her mother’s daily affairs, from meals to laundry to bathing?

“All of a sudden it was like I had a part-time job. On top of my 55 hours a week as an executive I was working 25 hours a week managing my mother’s affairs.”

She called on her brother for support, and because he lived in another city, even tried to delegate simple tasks that could be done by phone, but the help was minimal.

“I love my brother dearly, he’s a beautiful man, but for some reason, he didn’t help.”

Clarissa Green, a Vancouver family therapist, has been working with elderly parents and grown children for 30 years. Gender socialization, she said, is part of the reason daughters may be more likely than sons to step up. “You don’t see movies about men taking personal care of their parents, you don’t see it on television,” she said.

But men, she said, are being “stirred in” more and more.

“I’m extremely encouraged about how siblings are working together on this,” she said.

“There are many different kinds of caring, from practical things like housework, meals, laundry, then there is cheering and validation and encouragement, legal and financial advice, yardwork.”

Lange was overwhelmed with a new baby and the responsibility of caring for her mother, sorting out and selling the family home and managing her mother’s financial affairs.

Parents of young children caring for elders is an increasingly common picture among the post-boomer generation.

In 2007, 43 per cent of caregivers were between the ages of 45 and 54, the age at which many Canadians are in the workforce and have children living at home.

“I would burst into tears. I was exhausted. I felt like no one was helping me. I started to get resentful. I just lost it a few times. It was stress. It was overload.”

There were pages and pages of things to do — “running lists,” said Lange. The process, from the sudden shocking diagnosis of dementia to legal issues, to finding an appropriate care facility, took two years.

“The hardest point was that moment when I realized I was going to have to handle all of this by myself.”

Even though Lange believes her brother could have done more, she considers herself lucky because he was supportive, validated her choices and didn’t throw roadblocks up over decisions.

“There are many, many circumstances where that doesn’t happen, where families question every move,” said Lange.

A situation where an elder parent requires care or has dementia and the family has no plan in place is “a nightmare,” said Green.

“To get caught without power of attorney, or a representation agreement and to need them, that’s a mess.”

She urges families to open the conversation, but to start building communication early, “long before the crisis.”

Once parents do need care, people like Green can help untangle the knots that come up between siblings.

“These challenges can grow people’s relationships magnificently because they are about authenticity, and hope and doing better for each other. People can mature enormously.”

Thinking out of the box, and letting go of stories like “I live in another province, so I can’t help” are important, said Green.

“In my experience there is more in this whole thing than one person can safely do. They will often find it difficult, if not impossible, to do alone.”

Said Lange: “My brother could have made phone calls, got estimates on the costs of things.” But she’s not holding on to any bad feelings; she’s just grateful that her mother is in a safe place, and is well cared for.

Part of Lange’s journey of maturation as she went through the process was a total lifestyle change.

Overwhelmed with gratitude toward the nurses and professionals who offered her guidance and support during her mother’s difficult transition, Lange discovered a passion for caring for others.

She now runs a franchise of Nurse Next Door, which specializes in providing in-home care.

“My brother jokes that now I’m one of those people I depended on for help,” she said.

“I just love it.”

- Vancouver Sun

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