Community, Technology Can Alleviate Loneliness, Invisibility of Elders and Their Caretakers

For the near term, the adult sons and daughters of aging parents hold an important key that will determine whether any new model of eldercare is embraced widely in the United States. Having been raised in a more permissive and self-indulgent era than their parents, many adult children possess the proper empathy for their aging parents but have been reluctant to assume a responsive and responsible role in their decision-making process. Like many strug­gling with other common social problems, they often see the issue only as their own personal problem. Adult children, therefore, are also isolated, alone, and invisible as they confront their parents' situation.

There are many factors that contribute to this current state of poor family communication. Let's start with the aging parents. Having been raised in the shadow of the Great Depression, they have low expectations for any extras in their lives. Having been taught to be self-reliant, they are loath to ask for or accept any help. They were often imbued with a mind-set of sacrificing their lives for the next generation. After a lifetime of giving all of their resources to make their children's success possible, they cannot conceive of asking their children to support them financially. They refuse to complicate their children's lives by asking them to deal with their declining years. While these same elders may have seen their own parents' genera­tion willingly accept taking an aging family member or in-law into their own homes for the rest of their lives, such a course is anathema to them. “They have their own lives,” my older patients regularly remark when talking about their children. In many instances, they have seen firsthand the profound alteration of family life that ensued. They do not wish to replicate that chain of events. Throughout their careers, they have often planned for their future, lived with greater financial opportunity than previous generations, and never expected to outlive their savings. They also never expected to have to rely on their own children later in life.

Yet they have not noticed that family options can now be quite different. Our homes and our communities have the potential to more easily accommodate a variety of scenarios. The technology, conveniences, and services of the twenty-first century make it possi­ble to envision and then implement a solution that does not need to replicate the difficulties that the older generation fears.

From the point of view of the adults in the sandwich generation, the elder landscape is hazy. The path is not yet blazed. Solutions require problem solving and social engineering in a major way. Elder services require commitment of time and financial resources at a time when both are already in short supply. Frankly, many adult children are too busy, too greedy or too oblivious to attend to what is going on. Others are far too easily falsely reassured by their frail, failing parents that everything is okay.

Family Stories

Many parent-adult child relationships remain almost irreparably strained from earlier family conflict. If that parent was too stern a disciplinarian, vehemently disapproved of a marriage or a divorce, disagreed about moves, job choices, or child-rearing approaches, relationships became strained, ties severed, or broad gulfs formed. The wounds may not have healed, and that kindly, engaging 90-year-old before us is not the individual that those out-of-state children remember. Many members of that generation gave you what they thought you needed to launch you and then let go. They did not know “that nurturing thing” that is now a customary part of child rearing and that now promotes “keeping in touch” with adult chil­dren once they leave the nest.

Kim's dad drove a truck and Jill's worked for the railroad. They were absent from the home and from their children's lives for extended periods of time. Now as they contemplate helping their older fathers cope with major decisions, they realize they don't know them very well. The same holds true for children separated from one parent or the other by divorce. The emotional bonds that many families take for granted are by no means universal.

We can't expect a dysfunctional family all of a sudden to come together, heal their old wounds, be gracious and caring, and work together to solve issues in uncharted territory. This is very tall order that demands that there be other advocates for elders in the discussion.

As Francine Russo pointed out in Time magazine, caring for an aging parent can reignite sibling tensions. “When my mother's health was failing, I was the 'bad' sister who lived far away and wasn't involved,” wrote Russo.

“I was widowed, raising kids and working, but that wasn't really why I kept to weekly calls and short, infrequent visits. I was stuck in my adolescent role as the aloof achiever, defending myself from my judg­mental mother and other family craziness. As always, I deflected my sister's digs about not being around more – and I didn't hear her rising desperation….”

“It's like being put down with your siblings in the center of a nuclear reactor and being told, 'Figure it out,'” says University of Colorado geropsychologist Sara Honn Qualls.

Eldercare and end-of-life debates often hit families after decades of negotiating nothing more serious than where to spend Thanksgiving. We can be grown-ups with successful careers and kids of our own, yet all the old stuff ambushes us: sibling rivalry, entrenched roles and resentments, the way our family talked or didn't talk about important things.[1]

Still others are deeply committed to a parent's welfare and are exhausted trying to help. One of the most poignant portrayals of this side of the coin is the article by Jonathan Rausch in the Atlantic enti­tled “Letting Go of My Father.” Rausch's 80-year-old father insisted he could live independently on the other side of the country. A proud man, a retired, highly respected lawyer, he struggled mightily with the activities of daily living due to his medical problems stemming from an aggressive form of Parkinson's disease. But he refused help. Eventually Rausch moved his father to an apartment near him on the East Coast. His father's multiple-system atrophy progressed rapidly and motor control worsened. He writes, “I came to dread the ring of the telephone: it might be my father on the floor, asking me to come over and pick him up, or it might be emergency medical services, summoned by a neighbor or the call button. Once, when I arrived amid a commotion of paramedics and flashing lights, a neighbor, her face flushed with fear, yelling to me, 'He can't live here! You've got to move him!' In the midst of it all, my father would be entreating everyone to leave him be. My professional work all but stopped.”

Finally, when his partner tried to take his dad shopping, and his dad became stiff and incoherent in the grocery aisle and then didn't remember anything about the incident, Jonathan snapped. “That was the day I realized that he could not cope and I could not cope and, emotionally, he could take me down with him. And I discov­ered in myself an awful determination not to let that happen.” It was at that point that Rausch entered the difficult terrain that many chil­dren find themselves in: of trying to make a parent do something the parent adamantly opposes – such as moving into a facility – in order to preserve his own sanity, or lifestyle, or even his livelihood.

He then eloquently catalogs his discovery of all the practical wisdom he collected on the street from coworkers, acquaintances, and other professionals. Finally, Rausch appealed to his father as a father – admitting that being his de facto caretaker was simply too much for him, and his father, being a good father, agreed to make the move that would make his son's life more manageable.

“How can it be that so many people like me are so completely unprepared for what is, after all, one of life's near certainties?” asked Rausch. “I am now convinced that millions of middle-aged Americans need more help than they are getting, and that the criti­cal step toward solving the problem is a cultural change akin to the one demanded by the feminists in the 1960s…. [T]oday's invisible caregivers … are being asked to do alone and out of sight what in fact requires not just private sympathy and toleration but public acknowledgment and proactive assistance.”[2]

Amen. There are so many important feelings and themes presented in that article. I encourage everyone to read it. Rausch accurately depicts how all-absorbing it can be to manage a significant portion of an aging parent's life. Then the lack of cooperation, lack of appreciation, and lack of support in the rest of one's life pushes the caregiving adult child to the brink of despair.

There are other important issues that stand in the way of adult children being a better advocate for a parent. Money heads that list. Anthony and Ellen, like so many other older couples, incorrectly assume that Medicare or Medicaid or some other state or federal agency will pay for the services that they need. They do not under­stand that elder-care is so costly that no one wants to tackle it. They do not grasp that state assistance only comes into play after all one's private funds have been spent and they are destitute. And even then, though they may be eligible for services or even residential care, finding people or facilities to provide such care at the paltry reim­bursements offered by Medicaid is difficult, and waiting lists grow longer.

Some adult children encourage their parents to spend their savings and their home equity to provide the things they need and want later in life. Others have arranged to have the financial assets of the parents turned over to them, and are quick to plan to have the aging parent placed in a state-supported facility even against the parent's stated wishes. Our society must encourage the creation of other recognized advocates for many elders. Whether this func­tion is performed by community-based church leaders or social workers functioning as mediators, there should be a venue within the community for such difficult dynamics to be hammered out. Expecting dysfunctional families to come together to serve the elders' best interests is unrealistic.

Creative Solutions

Other workable advocates may occasionally appear. In my own community, Charlie started out as an energetic retiree helping a neighbor, 88-year-old Dorothy, with some projects around her home. She had lost one son to cancer and burned the bridge to the other child. Charlie grew very fond of her. Little by little, as Dorothy's health worsened, it became apparent that Charlie's special combina­tion of coaxing, complimenting, and teasing produced results that no other caregiver could duplicate. He and his wife now devote a major part of their lives to caring for Dorothy. They have overcome many legal and familial obstacles to see that Dorothy's needs are well met. They bring a renewed richness into her life, and she recip­rocates with her appreciation. It is not always formal training that is necessary. Such care requires commitment and heart. Sometimes that can emanate more easily from those without blood relationship to a particular elder.

Many elders in various communities across the United States are turning to each other for support, jointly contracting for services, and creating new support systems. Beacon Hill Village in Boston and its imitators are virtual communities that are connecting neigh­bors in various ways for group benefit. Some friends are even step­ping up to challenge decisions made by well-meaning adult children to move their friends out of their own homes and into residential care. At times it takes such advocacy to stop a sequence of events unpalatable to an aging parent because that parent is reluctant to express her true feelings to her own children.

Where can we look for guidance to navigate this apparently uncharted territory? In 1997, Edwin J. Pittock founded an organi­zation called the Society of Certified Senior Advisors to promote in-depth, standardized education for ethical, honest, and princi­pled professionals who work with seniors. They have developed a dynamic organization with a comprehensive course curriculum. Their mission is to train professionals from all walks of life to under­stand the special needs of aging individuals and commit to serving them well in their particular line of work.

Other organizations like the Family Caregiver Alliance, the National Alliance for Caregiving and a bulletin board sponsored by Johnson and Johnson provide other starting points.

And, of course, the Full Circle America solu­tion, which we hope to replicate in 10,000 American communities over the next decade, is driven by the notion that each community possesses an army of potential partners to address the wide array of needs and aspirations of an aging population. This approach is heavily dependent upon the participation of family and volunteers to share the load and in doing so help to relieve the financial and time commitment required of any one family member or volunteer.

In the process we can all rediscover the joys of multigenerational connections – whether with our own parents, or with other elders. In fact, it may be through the eyes, and hearts, and minds of other elders that we come to know our own parents better. As a commu­nity, we can find the support that we desire to meet our own needs. In the process, we just might learn that the solutions for our elders also provide a cure for our own loneliness and invisibility.

Sources:
1. Francine Russo, “When Elder Care Brings Back Sibling Tensions,” TIME February 1, 2010. www.time.com

2. Jonathan Rausch, “Letting Go of My Father,” The Atlantic, April 2010. www.theatlantic.com.