Writing in the NY Times on September 3rd, Paula Span described the emergence of online support and caregiving "communities." One such site -- Lotsa Helping Hands -- has succeeded in facilitating the creation of almost 30,000 of these "communities." They are all local, and they exist to recruit and coordinate volunteer services for members of the community who are in need. For example, a single mother who must undergo chemotherapy and needs help with child care, shopping, etc.
The ongoing development of powerful and sophisticated medical diagnostic and treatment technologies has led to what Dr. Barbara Okun and I have termed "the new grief." It is "new" not in the sense that mourning has fundamentally changed, but in the sense that while sudden and unexpected death still occurs, much more common is a lengthy process that begins with a terminal diagnosis. This process may go on for months or, increasingly, years. It represents a crisis that may ebb and flow in intensity over time. It usually means that not only the terminally ill patient, but his or her entire family will become engaged for a protracted period of time.
While most families will initially band together to provide whatever support is needed, competing commitments and priorities inevitably come into play. This is the point at which support can wane. Too often it then falls on one, or maybe two family members or close friends. It is often (though not always) a thankless job. In time it can inflict a great deal of wear and tear on even the most loyal and committed family or friends. Many terminally ill patients have expressed feeling bad about burdening a small support group; not a few then hesitate or ask for help.
As much as we may wish it otherwise, the realities of current lifestyles cannot be ignored. Most families today are far-flung, and the great majority of nuclear families must rely on two incomes to stay afloat financially. Americans work significantly more hours per year, on average, than they did 30 years ago. And to makes matters worse most people today worry about job security and therefore are reluctant to ask for extra time off. The issue that needs to be faced, therefore, is not that families are uncaring, but that they most likely have limited resources to bring to bear on the ongoing crisis posed by terminal illness. That is where online communities such as Lotsa Helping Hands may be able to make a real contribution.
Some families tend to be rather resistant when it comes to reaching out to others for help. If the family is large enough, and depending on individuals' availability, this may work. If the family is small, however, or if these responsibilities will have to be borne by adult children who have many other responsibilities (which is typical), the added stress can be considerable. For that reason we advocate reaching out to collateral sources, be it for actual, physical services (transportation, child care), or emotional support.
Mary Reaches Out
Whereas Ed, 56, was not interested in discussing his diagnosis of tertiary pancreatic cancer with anyone outside of his family, his wife Mary, 49, felt overwhelmed by this sudden and frightening turn of events in her life. Their college-age children wanted to know if they should immediately return home. Mary suggested they wait until further information was available. Ed did not want them to come home at all; he wanted everything to go on exactly as it had before his diagnosis. He told Mary he wanted to take life one day at a time and he did not want to burden anyone.
Ed had always been a stoic and private individual and Mary understood and respected this. Theirs was a family that had always kept largely to itself, remaining on the fringes of their community without any significant involvement. They had a few close friends who they saw occasionally. Up until Ed got ill they found this lifestyle completely satisfying as they enjoyed each other's company very much.
About a month after Ed was diagnosed, Mary went online to learn more about pancreatic cancer. When she did, she discovered websites that offered not only information but also support, in the form of forums and chat rooms, for people with terminal illness as well as their families.
While Ed did not feel the need for online support, Mary decided she did, and she joined two of these groups. She felt that they met her needs, and she actually looked forward to reconnecting, at least briefly, with each of her online support groups at the end of each day. Mary said that she initially found it easier to talk to strangers online than to, say, members of her church. Also, Ed was less bothered for some reason by the idea of Mary chatting with her "online friends" than with people he knew. She felt she learned a great deal from their experiences -- that this information helped inform the decisions that she and Ed had to make at different times -- and that it was also helpful to share her emotions as they changed from day to day. "It was nice to know that others were having similar experiences, and that I was not going crazy," she said.
A year into Ed's illness, his health was visibly failing, though he remained resolutely upbeat. As Mary found her care-taking responsibilities increasing, she talked with her pastor and together they helped start a support group for caretakers -- like herself -- of terminally ill family members. Aside from providing emotional support, one purpose of this group was similar to what Lotsa Helping Hands seeks to do: it became a clearinghouse through which local agencies and volunteer organizations could be tapped for help.
When Ed died, six months later, Mary continued to attend the group, assuming the unofficial role of coordinator of community resources. She would tell you today that this experience changed her life profoundly. It enabled her to engage socially through these activities and find new meaning for her own life.
As Mary's story shows, it can be vital to pursue sources of support both inside and outside of the family. In fact, we have come to believe that families that allow others to be of support -- emotionally and/or physically -- are apt to be more resilient in the long run than families who try to deal with all the stress and do all the things that have to be done by themselves. That's why we recommend that, in addition to availing themselves of the support that individual members can offer, families facing the challenge of terminal illness check out the growing number of online resources that offer information, support and even services.
Do you have a story you can share about reaching out online?