Caregiving and the changing rhythm of life

Forums in Chicago, Seattle address issues of elder care

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As Americans age, and living well into the 90s or even past 100 is increasingly common, the nation is facing a crisis in caring for the elderly.

It can be particularly hard on the middle class — those not poor enough to qualify for federal benefits for long-term care and not wealthy enough to afford the high cost of assisted-living facilities or in-home helpers. In fact, much of the daily care for aging parents is done by family members — typically a middle-aged daughter who also is juggling a job and raising children.

It's not always older relatives who need help. Severely injured veterans and children with special needs require constant care, too. Neighbors and friends also are a growing part of this quiet army of caregivers whom President Barack Obama has described as "humble heroes." Many of them, he said, "have put their own lives on hold to lift up someone close to them."

To spotlight an issue that is changing the rhythm of daily life formany families, The Washington Post recently held "Caregiving in America" forums in Chicago and Seattle. Excerpts from speakers at those events are included in this special report.

"Budgets reflect our values," Illinois Gov. Pat Quinn (D) told the crowd in Chicago. He said more resources should be directed toward supporting caregivers. Without them, he said, the financial toll on our health-care system would be astronomical.

It's a job with a high burnout rate, many speakers said. Former first lady Rosalynn Carter said caregivers need to take breaks and talk to others facing similar circumstances. It's critical not to be isolated, she said. "The chances are that we will all become a caregiver at some point in our lives," she said.

With demographic shifts and growing worries about who will care for the aging in years to come, there was talk of government incentives for in-home caregivers and turning to the "young old," those in their late 60s and 70s, for help.

Excerpts from the forums:

When you are in a situation where you're dealing with a loved one with Alzheimer's, which is my story, take them out in public with no apologies and let the public see how you're enjoying your life together. I think it's important to take (older people) out and let them make a noise in the middle of a concert. We made a point to do that and I always felt support from people. It saddens me to think that a lot of people never venture out. They're so self-aware or so shy about it. It's amazing to me how many things can be closeted in this great nation of ours because we have so many hang-ups and concerns that way.

— Rick Steves, travel writer and television host

Caregivers are not sick. They don't want sick time. They don't want unpaid sick leave. Caregivers are active members of society who are doing an important job at home and they're also doing an important job at work. (The challenge) is to get employers to understand that. We all have to work from inside. We all have to talk about it.

I manage various people who are caregivers. They can telecommute; they have the flexibility. We just have to show it and talk about it and just act and walk that walk. I think that's how it starts. Legislation makes people do what they have to do. But I really believe that when corporations can start before it's required, that builds incredible loyalty and you want to work there.

— Jack Watters, vice president for external medical affairs, Pfizer

The main thing for a caregiver to know is you're not in this alone. Don't let yourself become isolated. Reach out to the resources and share what you know, because you have so much to offer. You can help other people in the same situation and you'll find you have a lot of friends in the same boat. I'd like to see support groups (for caregivers) just like book clubs everywhere.

— Trudi Inslee, first lady, Washington state

Right now, we see the elderly as a problem. Why don't we look at the elderly as a resource? We want to help. We don't want to just be trying to keep ourselves busy. I hate that. There are important things to do in life, and we need to be able to continue being useful. I'm a great believer in being useful.

We've got all these healthy, "young old," people who go into retirement from 60 to 75 (years old) — and what do they do with themselves? They want something meaningful to do. I think we need to look at ways in which they go into caregiving. They understand it. They're close to it. They see it. They know that they're going to be there.

— Alene Moris, women's rights leader

From the health-care-provider perspective, when a patient comes to me with their family, it is not only about addressing the patient, but their support structure as well. I'll often spend just as much time talking with the patient as I will with the family as a whole, addressing their needs and making sure that they are also well taken care of. If they're not taken care of, they can't take care of the patient.

We are often taking care of our friends. I am seeing that more and more as a health-care provider — individuals come in and it is not necessarily their children who are there caregiving for them. It's their best friend or their neighbor who they've known for 20 or 30 years.

— Shilpen Patel, oncologist, University of Washington Medical Center

I was interviewing employees of a large company that had a really good package of benefits. One employee was telling me that he needed to take his father to his chemotherapy or he wouldn't go. His supervisor had told him that if he missed any more time from work, he was going to be fired. So he stopped taking his father to chemotherapy. A lot of the issue is that managers are not 100 percent on board with this culture change that needs to take place. In 10 years, I hope that everyone in America will have an employer who actually cares about employees' ability to manage their multiple roles. Whether it's a small employer just giving some informal flexibility or a large employer saying, "You have a right to take this time off. You have a right to sit in the office of the geriatric care manager down the hall and solve your problems."

— Donna Wagner, associate dean, academic affairs, College of Health and Social Services, New Mexico State University