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by Bill Gaventa
Dealing with aging, death, grief, and end of life issues with people with intellectual disabilities is a growing challenge in services and supports. It is a challenge brought on, in some ways, by success in terms of effective health supports in that people with intellectual disabilities are living longer into old age. But the challenges are many:
Those same challenges can present opportunities to do the following:
In a resource manual called, The Challenges of Aging: Retrieving Spiritual Traditions in the Long-Term Care of the Elderly, the Park Ridge Center in Chicago identified five tasks of aging common to all major spiritual traditions (Park Ridge Center, 1999):
Of what communities has someone been a part? What has been important to them about those communities? What might they want to do in those communities? So, for example, would people like to revisit places they have lived in their lives? Would they find it meaningful to make a photo album of places and people that have been important to them? Would they like to volunteer somewhere? If they have never had the chance to join a desired faith community, could this now happen? For example, there are powerful stories in the state where I live, New Jersey, of people with intellectual disabilities being able to have the bar or bat mitzvah they never had, or having the chance to be confirmed or baptized. Those relationships also need to be built to avoid the crisis of "who to call?" when someone in residential services is suddenly hospitalized with life-threatening illnesses or dies. Clergy and spiritual communities can respond, but that response is so much better if a person is known to a given faith community.
Service providers have gotten better at identifying the key strengths and gifts of individuals with intellectual disabilities as well as their needs or deficits. This is a time to focus on those gifts and strengths. How can we celebrate and honor them for those gifts? Could they give them to others, such as by writing or telling their life stories to younger professionals or others? Could we help individuals think about what they want others to have when they die (i.e., make a will, and think about who would like valued possessions as a keepsake, something to remember them by)? One chaplain at a small residential facility started a practice of identifying key strengths in each person, and then developing a "Certificate of Appreciation" for that person and their gifts that was presented to each individual and their family at the annual plan review. Not only did those certificates start ending up in frames and on their walls, but also they changed the ways that others saw the people with whom they worked.
Many cultures see the elderly as those to be honored, in stark contrast to some modern culture that sees aging as curse. As people with intellectual disabilities age, how might professionals and caregivers honor them? We could ask for their blessing, in a variety of ways. We can help turn records and charts into life stories. One agency is doing just that with Power Point presentations and scrapbooks that are turning a team of consumers into speakers and presenters at workshops. We can re-vision "consumers" as "survivors and veterans" of endlessly changing service systems, and honor them as we would any veterans. We can also do so by restoring mutuality to the relationship between professional and "client" by finding ways to tell and thank them for what "they" have meant to us, and how they have helped us. Professionals all know people with intellectual disabilities who touch deep parts of their own lives and values, and have provided part of their own sense of calling and vocation. We need to share that appreciation with others as they age, as we would with other elders who have been our teachers or mentors.
How do we help people prepare for and deal with the losses they have -- losses of relationships and losses of their own health or vitality? Can we help people participate in rituals of loss and mourning, or develop new ones in service systems where grief and loss have often been unacknowledged and unrecognized? Many elderly people get more involved with religious communities. Can we help that happen, and build supports that will be there at the end of life? And, can we find new and creative ways to help people express their own grief and develop their own form of understanding; for example, the book Am I Going to Die? in the Books Beyond Words series (www.rcpsych.ac.uk/bbw) is one creative way to help people understand facts and feelings, loss and mourning.
Are there old relationships that need to be renewed as people get older? Or connections with families, old friends, or former staff that need to be "re-membered?" For the rest of us, "reunions" become more important in old age. Can we work with people with intellectual disabilities to see if there are people they want to see, or need to see? Many old institutions where people lived were terrible places and times; so is war. But people who have survived and gone their separate ways to better lives often choose and seek the opportunity to have reunions, or to revisit those places and relationships that shaped their lives.
Support and service agencies, families and other caregivers, and individuals can develop their own creative ways to address these tasks of aging and end of life planning with people who have intellectual disabilities. The challenges can indeed become opportunities.
Park Ridge Center. (1999). The challenges of aging: Retrieving spiritual traditions in the long-term care of the elderly. Chicago: Park Ridge Center for the Study of Health, Faith and Ethics.
Bill Gaventa is Director of Community and Congregational Supports at The Elizabeth M. Boggs Center on Developmental Disabilities, University of Medicine and Dentistry of New Jersey, New Brunswick. He may be reached at email@example.com or 732/235-9304.
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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/231). Citation: Heller, T., Stafford, P., Davis, L.A., Sedlezky, L., & Gaylord, V. (Eds.). (Winter 2010). Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities, 23(1). [Minneapolis: University of Minnesota, Institute on Community Integration].
The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/231/231.pdf.
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