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Handle with care
Planning and patience prove essential as adults take care of their aging parents
By Alandra Johnson / The Bulletin
Published: March 27. 2009 4:00AM PST
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Aging parents have long relied on their adult children to care for them. But something has shifted. Baby boomers are caring for their parents in staggering numbers.
Our society is experiencing a dramatic shift. That’s what Terry Hargrave, a professor and author of “Boomers on the Edge,” says. He says 70 to 80 percent of baby boomers will end up caring for an aging parent. Even if the parents aren’t living with their children, the children still often end up managing their parents’ affairs, doctors’ appointments, housing, bills and more. Forty-one percent of Oregonians are caring for an aging loved one or plan to do so within the next 10 years, according to a recent report from Davis, Hibbitts and Midghall.
Hargrave attributes this growing arrangement to two things that have changed in recent years: People are living longer, and they are able to stay alive longer despite debilitating illnesses. The percentage of Americans who are 65 and older has tripled since 1900, from 4.1 percent of the population to 12.4 percent in 2006, according to the Administration on Aging.
That trend is only going to continue. According to the AARP’s Across the States 2009 study, the population of those 85 and older is expected to increase by 74 percent by the year 2030.
In the past, someone with dementia might live six months to two years, but now, Hargrave says, they can live five to 10 years.
“That’s what really changed. It’s one of those changes in progress,” said Hargrave.
Instead of retiring and being able to relax, many adults are retiring and finding themselves with caregiving responsibilities well into their 70s.
Also, in past generations, older parents might have automatically come to live with their children. Geographical distance as well as changing values mean that living together is no longer the primary option. Also, many women, who would have served as caregivers for the older relatives in the past, are now working outside of the home, making such an arrangement more difficult. Further, even if individuals are in good health when they hit their late 80s or 90s, they may have outlived their financial resources.
It all adds up to put great strain on many families.
These issues can be complicated and emotional for all parties involved, and the problems can be exacerbated when families don’t make long-term plans.
“It’s a subject people don’t want to talk about,” said David Hamilton, the executive director of the Central Oregon Council on Aging.
Lisa Bertalan, a Bend attorney who specializes in the field of elder law, believes planning ahead for when an older parent may have diminished capacity is essential. Bertalan, who teaches classes to help people plan care for their older parents, helps families create powers of attorney, health care directives and other long-term planning options. She will be part of a panel discussion at an upcoming event sponsored by the AARP called “Thinking & Preparing Ahead: Long-Term Care and Caregiving Forum” on April 18 (see “If you go” on Page E6).
She thinks people are becoming more aware that they need to plan in some way. She teaches a class three times a year called “Your Aging Parent” through Central Oregon Community College to help adult children learn about long-term planning options.
Bertalan has seen the alternative to planning, and it’s not good.
“If you don’t plan, then you’re in court.”
This kind of court case often results in a lot of emotional grief on all sides.
Challenges for aging parents
“The emotions are enormous,” said Marion Somers, geriatric care manager and author of “Elder Care Made Easier.”
A family’s history and old issues all come back to the surface when children have to step in and care for their parents. “To say that it’s emotional is an understatement,” said Somers.
Most older individuals are “living longer than they ever expected to,” said Hargrave.
Often this means they need more care than they anticipated and have to give up more independence. Many older individuals connect independence with happiness. It’s tough to accept a transfer of power to a child.
Another issue is the perception many older individuals have about care facilities.
“People have a very strong bias against nursing homes,” said Dr. Martin Gorbien, director of geriatric medicine and palliative care at Rush Medical Center in Chicago. He has worked in nursing homes since age 15 and in geriatric medicine since entering medical practice.
Gorbien believes much of this bias is unfounded and not based on the reality of the care facilities. Another misconception is that Americans don’t care for their older relatives, instead choosing to place them in nursing homes. In fact, he says, only 13 to 16 percent of Americans will spend some time in a nursing home.
Many older individuals want to continue to live in their own homes. This is a place where they feel comfortable and where they have their things around them. Hargrave believes this is tough because they don’t want to let go.
“It’s a harsh thing to realize, it’s about letting go of life,” said Hargrave. Moving out of their homes and into a care facility can force people to confront issues they want to avoid, such as “How am I going to start handling my own deterioration and death?” said Hargrave.
The challenge for older parents is to find a way to continue to live constructively and feel that they are contributing without falling into depression. Older individuals can tend to isolate themselves, says Hargrave. And because they require more care, sometimes they feel “like dead weight for the family.” In addition, they often experience chronic pain and have seen their loved ones die. The older generation is the most vulnerable population in the U.S. when it comes to depression.
Hargrave would like to see them take a different approach. He thinks they would do better if they thought “I have wisdom. I have things I can contribute.”
Challenges for adult children
Adult children are often referred to as the “sandwich generation,” because these individuals are sandwiched between their obligations to care for their children and to care for their aging parents. The stresses of such obligations were apparent in a 2008 National Association of Social Workers survey of sandwich-generation women. Some key findings include:
• Twenty percent of women reported being very happy (compared with 34 percent of the general population). Many social workers attribute this to the women feeling overwhelmed with too many responsibilities.
• Ninety-one percent of social workers believe that sandwich-generation women underestimate the toll of caring for an aging relative will take on their own health.
• Seventy-four percent of social workers believe these women are not prepared for the cost of caring for an older relative.
Further, most women reported they do not ask for help when they need it.
One of the challenges adult children face is how their parents feel about the shift in power. Aging parents can have a difficult time accepting directions or instructions from someone they raised. Hargrave says many times caregivers “kind of have to let the older person experience some kind of failure” before they are ready to relinquish some of their independence. This may mean getting sick or just not being able to care for themselves. It can be tricky to convince parents that they need help when medical issues aren’t involved.
Bertalan works with some families in which older parents are “clearly unsafe,” yet unwilling to leave their homes. Despite the fact that the older parents are leaving the stove on, have cat feces on the carpet or rotting food on the counters, they feel they are fine and don’t need help.
“I’ve seen that a lot,” said Bertalan.
She believes the reason for this is that “most people do not want to leave their homes; it’s that basic.”
She calls these cases sad, emotional and tough on both parties.
“It’s such a role reversal for children. It’s really difficult.”
Gorbien agrees that many older individuals end up overestimating their own capacity. They think, “I’m fine; I’m safe,” when in fact they are not.
He recalls being confused as a young doctor by older patients who chose to stay in unsafe inner-city apartments, risking theft and abuse. Now that he is older, Gorbien understands that willingness to take a risk in order to remain with what you know.
A big challenge for both caregivers and their parents is to sort out the right living arrangements when living alone isn’t feasible. While some aging parents may prefer to move in with their children, some adult children may not feel that’s the best option. Hargrave thinks it’s important for the caregivers to figure out what is best for them and follow that, while still respecting their parents’ wishes.
Saying, “‘I love you and I want to care for you, but you can’t live with me’ is a hard conversation to have,” said Hargrave.
On the other hand, having a multigenerational household can work for many families. The older relatives can add something to the house. That arrangement can also be much more cost-effective than other options.
Somers reminds adult children that their parents have a right to be part of the decision-making process.
“You do not have a right to just take over.”
Options
Talk early, talk often.
That is Hargrave’s biggest message. Adult children shouldn’t expect their parents to bring up this topic; they need to be the ones to ask the hard questions. And it is best to do this well before an adult needs any care. It is sometimes referred to as the 40/70 rule. Families should start making long-term plans when the child reaches age 40 or the parent age 70. This is often a challenge because parents can resist the discussion and push it off, but Hargrave encourages children to be insistent. Aging parents need to discuss who they want to take the lead responsibility and where they want to live.
Gorbien also encourages families to talk about these issues, particularly where finances are concerned. It can be difficult for adult children to know what to expect when they do not know what kind of resources their parents have. Older parents may be eligible for certain programs, but they might not know if they are unwilling to share their financial information.
“It’s a very delicate topic,” said Gorbien.
Hargrave believes one child should be placed as the primary caregiver and should be responsible for both the finances and caring for his or her parent. Then, other siblings and relatives can focus on trying to support and help the caregiver. Without this method, separating the duties can lead to separating the power from the responsibility, according to Hargrave.
In Somers’ experience, sometimes caregivers are short on time and have their own families to take care of, so they don’t take time to explore all of the options.
“They just want an answer; they want a solution,” said Somers.
She suggests people examine ways to allow older relatives to remain in their homes, perhaps through installing adaptive equipment or hiring part-time private caregivers. Moving in with a child is a possibility, but Somers thinks families need to make sure that the older relative has his or her own room and they have to all get along. After that comes retirement homes, assisted-living facilities, then nursing homes.
“The last move is always a nursing facility,” said Somers.
Bertalan thinks people often avoid going to an attorney because they assume it will cost a great deal or because they think they don’t need to because the children will be able to handle everything. Bertalan says going to court costs $3,000-$5,000 and estate planning costs just a fraction of that. If parents resist the idea of doing any planning, Bertalan suggests children can offer to pay for it, make an appointment to see an attorney or contact a local lawyer who will make house calls, such as the local Wills on Wheels business.
Rewards
Caregivers may not always feel positive about having to take care of their aging parents. And it is a tough job. But Hargrave believes it can also become a positive.
“It’s an opportunity for me to learn how to be a giving person, a loving person,” said Hargrave. “It’s one thing to love a kid and give to them unselfishly” because they are growing and flourishing.
“It’s different loving someone who continues to deteriorate. It’s more unselfish giving.”
He knows from experience, having helped care for his mother-in-law.
“It made us better people; it taught us things about living.”
Hargrave would like to see adult children ask their parents questions like, “What is it you want to be remembered for?” and he thinks older parents need to take this opportunity to tell stories and share their feelings with their children and grandchildren.
“Take some time to sit down and emotionally connect.”
Alandra Johnson can be reached at 541-617-7860 or at ajohnson@bendbulletin.com.
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