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Caring for Aging Parents: A Second Career by Karen West

Christine Mower’s 85-year-old mother was on her way home after attending a birthday celebration recently when she noticed her driver missed her street and headed toward the freeway. She began to scream and cry: “Wrong, wrong, wrong...way.” Her driver tried to reassure her, saying he was taking her to her skilled nursing home in downtown Seattle. “No, no, no,” she demanded, her arms beating the air vigorously.

The experience — detailed on Mower’s blog www.alifewithmom.com — broke her heart. “I can’t imagine how this must have felt for Mom — to be so close to where she lived, to recognize the neighborhood, the street, and yet to be powerless to effect her desire, to be back once again in her home without need for medical oversight or 24-hour care.”

Mower’s experience is one that, in some form or another, baby boomers all over the country are — or soon will be — encountering.

A recent study showed that 30 percent of all Americans — 66 million people — provide care for an elderly parent, family member or a disabled child, and that caregiving has become an unpaid, part-time job. On average, caregivers provide 20 hours of help a week, causing them to miss work or quit work altogether, according to the report by the AARP and the National Alliance for Caregiving.

The Caregiving in the U.S. report showed that elder care is still mostly a woman’s job and that many women put their careers and financial futures on hold as they juggle part-time caregiving and full-time job requirements. They do everything from balancing checkbooks to housecleaning to bathing and dressing their elderly parents, according to the study released in December.

This new responsibility comes at a time when most of us have established careers and formed families of our own. We have managed to get through sleepless nights, toddler tantrums and adolescent angst with our children. But just when we are getting our lives back as our children gain maturity and independence, we find ourselves in caregiving mode all over again — this time focusing on our aging parents or inlaws.

We can be immersed in our lives when suddenly Dad falls and breaks a hip or Mom finds out she has cancer or a father-in-law suffers from Alzheimer’s. Whether our parents are faced with an unexpected debilitating disease, a physical disability or a cognitive one, they will eventually need to transition into an assisted living facility, move to a smaller, safer home or find an in-home caregiver to assist them.

Helping the elderly maintain their dignity and independence in their homes and communities is falling more and more on the aging baby boomers, like Mower. It’s an expensive and complicated job that comes with huge emotional and physical tolls — especially when aging parents think they don’t need help.

“It’s like having another job,” says Mower, 49, who has been caring for her mother since she was diagnosed with Alzheimer’s two years ago. “This has been the hardest thing to go through.”

Mower had settled into a comfortable life with her husband and was established in her career as a writer teaching women’s studies and English at Seattle University when her mother became ill. Although she has two brothers, the caregiving job fell to her and it has taken over her life.

She had watched her mother decline for several years but hired a geriatric care manager when her mother became a danger to herself: She started leaving the oven and burners on and stopped paying her bills, so utilities were cut off.

“The hardest thing has been the internal struggle of how to balance my mom’s wishes with what is best for her daily,” says Mower. “Mom is a proud, independent woman and had trouble acknowledging she needed help.”

The situation worsened last summer when her mother suffered a stroke. Now, Mower is learning to let go of her mother.

Our world is aging more rapidly and, unlike Mower’s mother, seniors today have fewer adult children to take care of them than their grandparents had. For those who do have children, many live farther away. “Your kid is no longer living on the farm next door,” says elder care expert Liz Taylor.

One in every eight Americans is over the age of 65, according to the government’s Administration on Aging. By 2030, there will be about 71.5 million older persons, more than twice their number in 2000.

“As the baby-boom generation ages over the next 25 years, the numbers of people needing care will swell,” according to the Caregiving in the U.S. report. “The numbers of younger people available to provide care are likely to dwindle. This suggests that in the future, caregivers will be older, on average, than today’s caregivers and may have greater infirmity of their own.”

The good news is that “80 is the new 60” with more and more seniors staying active, alert and living longer, healthier lives.

Carlye Teel, executive director of the Ballard Northwest Senior Center, says the worst part for many older people is that they want to stay independent as long as possible.

But she says many of the seniors at her center know when the time is right to move into a safer environment. “It’s usually when the house is too big and the kids are all gone,” Teel says. “Most of them go when they’re ready.”

Soo Borson, a professor in the department of psychiatry and behavior sciences at the UW Medical School and director of the school’s geropsychiatry services, says there is no shortage of detailed information regarding elder care. The problem is identifying what it is you are going through and knowing what information to look for.

Baby boomers are known as a generation moving “ever forward, ever onward and ever upward...the world is supposed to be our oyster,” Borson says. “Then all of a sudden there comes a tug from someone who needs you in ways they haven’t before.”

That is the point where adult children often divide up — at the very time their parent needs their help the most. Some have trouble recognizing that a parent needs help while others know there’s a problem but may not know what to do.

In Mower’s case, she viewed her caregiving role as a blessing; a way to reconnect with her mother and spend precious time together.

“This is not what I thought I’d be doing right now,” Mower says of her life as a caregiver. “Why are we not told about this part of our lives? That we will lose days, years helping our parents die. This is time lost...but it’s also a gift.”

She divides her time between teaching, writing (she has three books in the works, including a novel about daughters and their aging mothers) and spending hours every day being her mother’s advocate.

Borson of the UW says, “It’s threatening when a parent becomes ill or disabled. We have very few guiding principles that tell us what we are supposed to do.”

Complicating matters is the parent who often resists help because they don’t want to be a burden on their children.

“The older parent wants to protect their child...they think they can handle it,” Borson says. “This is the tangle that really stands between that dawning awareness and the actual taking of steps to make arrangements so things can be handled in a practical way.”

She remembers several years ago when her father called from California to say her mother had a “mass on her chest.” Both her parents downplayed the fact that her mother had lung cancer and said they didn’t need her to come down from Seattle, especially because she had her hands full with a busy career and young children to raise.

“I respected her stated wish and that was a huge mistake,” Borson says. “Of course she needed me for emotional reasons.”

Borson’s dilemma happens to people all the time. The most common thing she sees in the UW dementia clinic are conflicts between an aging parent and a baby-boom generation adult child trying to determine what’s right for the parent.

The best way to work through those conflicts is through communication. She says there’s no 12-step plan to care for your aging parent but one good place to start is by identifying the problem, then talking about it.

“There’s no one answer that works for everyone, but there is a right process that does: a willingness to start the conversation about issues that are painful and have never been addressed before. And to have the conversation again as circumstances evolve.”

Making informed decisions about existing health and long-term care options is becoming increasingly difficult with the plethora of Internet sites and companies claiming to have all the answers. And protecting Mom and Dad from telemarketing and mail scams can be frustrating.
The biggest mistake many of us make is not planning ahead, says Taylor, a 35-year veteran in the aging field and founder of Aging Well Consortium in Seattle. (www.agingwellconsortium.com)

Taylor, who lectures across the country on the subject, says aging successfully or, as she puts it, “aging deliberately,” takes due diligence and planning. “Most people think they’ll never get old,” she says. “People don’t want to think about their aging and they don’t take action.”

As a result, they are forced into caregiving by a crisis: Mom falls in the bathtub and can’t get up or Dad steps through a loose board on the deck. When that happens, often hasty decisions are made and parents sometimes end up in questionable facilities.

“We live in a country that gives us the right to self-destruct,” Taylor wrote in a recent newsletter. “As long as we’re basically competent we’re able to revel in our denial, ignore pleas to accept help and fall to the bottom of the aging abyss.” She sites some recent examples:

• A 77-year-old client who could barely walk because of a stroke went to renew his driver's license. “He thought he could drive. Thankfully, the Department of Licensing turned him down.”
• A friend's mother insisted she was perfectly capable of cooking and caring for herself — until her bathrobe caught fire on the stove and she died.
• A 95-year-old man and his 97-year-old wife insisted they were fine in their home of 65 years, despite lots of stairs and levels in the home.

“For many families with older parents, knowing what to do next can quickly get lost among the guilt and the discord,'' Taylor says.

She urges adult children or caregivers to do early due diligence when it comes to long-term care. Research all options, find out what home services are available, investigate assisted living facilities and ask for their most recent inspection reports.

Communication is key but not always possible, especially when Dad refuses to discuss his future or siblings don't agree on long-term care. “Personalities drive almost everything in elder care,'' Taylor says. “Everything depends on how open the parents and children are.''

One of the most effective ways to approach the subject of long-term care with your parents is to have a family conference, including all siblings. If possible, have a professional, such as a geriatric care manager or a neutral third party (a neighbor or friend) at the meeting to offer an impartial viewpoint.

For example, if Mom is 75 years old and has lost her eyesight because of macular degeneration, it would be prudent for the family to discuss how her everyday function will be affected in years to come. By making a list of ways to help her and assigning jobs to siblings, accidents often are avoided.

“When you plan, you figure out ways to gain control,'' Taylor says.

Nancy Silk learned first-hand how difficult family meetings can be. Her mother was diagnosed with Alzheimer's disease several years ago and Silk was faced with either moving her from her home in California to Seattle or finding a suitable facility in her community.

She says she could not have gotten through the transition without the help of trained health-care professionals.

After meeting with a doctor specializing in Alzheimer’s, Silk and her sister were given advice on how they were going to transition their mother to a safer living environment. They also contacted the Alzheimer’s Association for guidance, finding it another valuable resource. “In the end, it was an intervening medical condition and the support of a hospital social worker that enabled us to effectively discuss with my mother her need to move.”

The social worker met with Silk’s family outside of her mother’s presence to discuss her living options and how to tell her about them. “He was a godsend because after hearing all of our concerns and sensing our relationship with her and her personality, when we all met together with my mother, he basically took over and told her himself the importance of her going into a facility that could give her the care she needed. She accepted it much better hearing it from him, with all of us in the same room, than she would have from us alone.”

She subsequently moved into an assisted living facility where she adjusted well for several years in her own apartment. She moved last year into the Alzheimer’s wing of her building.

Lisa Mayfield, a licensed mental health specialist, certified care manager and founder of Aging Wisdom in Seattle (www.agingwisdom.com), predicts that the adult children of aging parents won’t make the same mistakes of denying or refusing to make timely arrangements for their long-term care. “Baby boomers will plan ahead because they are seeing what their parents didn’t do,” says Mayfield.

Karen West is a Bainbridge Island-based freelance writer who had the privilege of caring for her mother during the last two years of her life and is now enjoying time with her 81-year-old father who lives nearby.

SUGGESTIONS FOR MANAGING LIFE TRANSITIONS

• Allow yourself plenty of time to emotionally adapt to the change.
• Be as prepared as possible prior to the transition.
• Be open to meeting new people and doing new things.
• Remember change is hard and this is normal.
• Know that anxiety and worry is common when working through a transition.
• Surround yourself with positive people.
• Give yourself permission to cry.
• Count on the unexpected. The unexpected is one thing you can count on with change.
• Consider joining a support group to build new connections.

List is courtesy of Lisa Mayfield’s Aging Wisdom web site at www.agingwisdom.com.

©Copyright 2010, Caliope Publishing Company