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Hear a national radio documentary done about Susan Bosak's family story



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by Susan V. Bosak, MA
Chair, Legacy Project

For me,
it's both professional and personal

After my father suffered a debilitating stroke and my mother was diagnosed with Alzheimer's, my professional work in life course and aging issues suddenly became a very immediate and personal family matter. That family experience is now nurturing my work, giving me rich insights I might not otherwise have had.

Ted and Nadia Bosak

I'm excited to be working on the YOU 177 initiative with goals that include supporting aging with meaning and dignity. The systemic changes that need to be made around where frail elders, in particular, live and how they are cared for will take time.

I'm lucky to have a strong family caregiving team that includes my husband and brother. I'm the first to admit that I can't do it alone; I admire those who try. If it takes a village to raise a child, it certainly takes a village to care for a frail elder. I don't think any individual, an adult child or a spouse, should be feeling as alone as many do as they care for someone they love. And I don't think so many elders should have to face the lack of choices that they do.

In my personal experience, I've come across individuals trying to do the right thing – the family doctor who makes house calls, the personal support worker who stays a little longer than the allotted time because we're desperate for the additional help. There are people out there doing the right thing. But the system has to do the right thing. The system has to do the right thing, so that more people in the system can do the right thing.

Here are some broad strokes for taking action on improving eldercare, particularly for frail elders:

  • Research tells us that most older adults want to remain in their home, with family. The place we live becomes part of who we are, and when we lose our sense of place, we lose a huge part of ourselves. Also, elders want and need to be connected to the real world and other generations, not isolated and marginalized in a traditional care facility. Governments and community organizations need to be more responsive to the needs of an aging society. Properly supported homecare, for example, may actually work out to be more economical over the long run.

  • Programs should have stable funding so that families have security. And programs shouldn't be so constraining and bureaucratic that they push people away. They should be designed flexibly so that different families can use them in different ways to meet their needs.

  • We need more creative approaches to in-home community support, including roving doctors and specialists who will deal with complex, frail elders in the community (listen to a 5-minute radio interview with Susan Bosak about doctors making house calls). Right now, bureaucracy, rigidity, and liability issues are a barrier to these elders receiving the best possible care.

  • Hospitals need to be more responsive and creative in addressing the needs of frail elders. At one point, my very ill father was in Emergency on a horribly uncomfortable gurney for 22 hours without even a pillow. My mother, who has Alzheimer's, spent two days in a bed in the Emergency ward. The lights and noise prevented her from sleeping, and she was surrounded by disorienting, frightening faces and activity. I pulled her out of the hospital after signing a waiver taking full responsibility for her care – because one more day in that ward could have reduced her remaining function irreversibly. Hospitals are set up for younger adults who often face single, more easily-diagnosed conditions; the hospital environment can hasten the death of a frail elder or prompt such a severe loss in functioning that returning home ceases to be a viable option. Some hospitals are starting to experiment with different ways to manage frail elders.

  • We need more living options for elders. Some elders simply cannot stay in their home or with family. We need better alternatives to traditional institutional living, creating communal living variations instead. Right now, we can all spot most "nursing homes" blocks away, and we generally prefer to drive past rather than in. A communal home for elders should be in the community, and should look and feel no different than any of the other residences around it.

  • Intergenerational contact shouldn't be isolated to a "nice" program here or there. It should be woven into the fabric of our society. It should be "just the way we do things." An elder doing crafts alone can often be demeaning and meaningless. Add a child and the whole dynamic changes – for both the elder and the child.

  • As families and as a culture, we have to rethink how we view getting old. My parents worked hard, paid their taxes, raised two children, and were good citizens. Why shouldn't an elder who is sick, confused, and scared have the right to be in familiar surroundings and have the comforts of their own home? We have to organize the necessary supports to make these simple things the basic human rights of old age.

  • Elders can teach us about the end of life, which informs the whole of our lives. As communities, we should think about ways we can create sanctuaries for older adults, particularly the oldest old, that honor their elderhood and connect them to the community in a meaningful way. These "legacy centers" could include living options for older adults mixed with a public park and library to ensure families become part of the circle of care. It could also involve having a local history museum integrated into the site to capture and preserve the stories and life lessons of elders. There is value there that shouldn't be underestimated.

  • As families, we have to structure our lives to respect and accommodate elders. We plan for children – decorating the nursery, signing up even before the baby is born for the best local daycare, taking maternity/paternity leave. We recognize the challenges and needs of a baby, and figure it out. Why don't we figure it out for elders? We do little planning, most people generally don't understand the physical and emotional needs of a frail elder, and society doesn't give us much flexibility when we're caring for an elder.

  • We need to design better homes. Right now, we design and build Peter Pan homes, for people who will never grow old. But we do grow old. And then we're stuck in a home we want to stay in, but that won't work for us. We need both transgenerational and multigenerational home design – homes that allow for something as simple as a wheelchair to fit through the bathroom door, and in which one generation can help another while still maintaining a degree of privacy and independence.

  • We need to understand more about the whole of our lives from the start. Life course education at the elementary level would encourage children to start thinking about the whole of their lives, and even their old age. Children must be supported in their natural inclination to make meaning, and should be taught the skills they need to develop a meaningful life story for themselves. Without a meaningful life story in their head, they see little relevance between what they're learning and their life. They struggle and lose interest. When they have meaning, including knowledge about the whole of the lifecourse, this creates a natural forward momentum and keeps them motivated. They see more of the big picture and the world makes more sense.

  • We also need to challenge the aging stereotypes we encounter every day, from ads to birthday cards. We fear getting old and deny death. If as a society we don't value growing older, caring for elders will never be a priority and we set ourselves up for a dismal future.

These are some of the broad strokes, as I see them. Start thinking about what you can do in your community.

© SV Bosak, www.legacyproject.org


One of the Legacy Project's goals is working toward aging with meaning and dignity. Check out our YOU 177 aging innovation initiative.

Read Susan Bosak's companion articles Rethinking Eldercare and Getting Older in Community. Four books we would highly recommend: A Bitter Pill: How the Medical System is Failing the Elderly by John Sloan, MD; It Shouldn't Be This Way: The Failure of Long-Term Care by Robert L. Kane, MD and Joan C. West; Caring For Our Parents by Howard Gleckman; and Passages in Caregiving by Gail Sheehy.

Listen to a national radio documentary done about Susan Bosak's family story and a short interview about the importance of doctors making house calls.

We have workshops for caregivers at the Legacy Center.

E-mail us with your comments and experiences with eldercare and caregiving, aging, and intergenerational connections.

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Questions? Call the Legacy Project at 1-800-772-7765.

Susan V. Bosak

Susan V. Bosak