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Week of 4 December 1998

Vol. II, No. 16

Feature Article


Making Life Work

The impact of life-threatening illness at work and at home

By Amy E. Dean

Imagine you are stranded on a desert island. You must rely upon available natural resources and exert tremendous energy just to stay alive.

Now imagine you are stranded on the same island with someone who is gravely ill. Surviving the ordeal becomes secondary to helping him survive. Yet without medical supplies and treatment and with the inevitable passage of time, the hope of saving him diminishes.

It's natural that you would feel helpless in such a situation, and this sense of helplessness is by far the most common emotion described by those going through the life-threatening illness of a family member or coworker. Any family experiencing this -- even a workplace family -- is often transformed into a group in crisis. You and others in the group become stranded on your own island, separated from the normal flow of daily life, surrounded by a sea of pain, grief, and anger.

Too often the life-threatening illness experienced by one becomes a crisis for all. When someone who is seriously ill continues to work, it can be a double-edged sword. On the one hand, maintaining a normal daily life can be quite beneficial for the sick person; on the other hand, it can create an uncomfortable workplace for others. Not only can the person's work suffer because of fatigue or the need for time off, but the emotional and psychological stress of being around someone who is ill can create strained working relationships and feelings of anger or resentment. At such times, BU staff and faculty can benefit from individual as well as group counseling provided by the Faculty/Staff Assistance Program. The BU Medical Center's Office of Occupational Health also can assist. Director Dr. Cheryl Barbanel says, "We can, in a confidential manner, work with an employee and the employee's doctor" when it's necessary to determine whether someone should continue to work.

Assessing limited resources
When an illness strikes your family, you have to know your own limits as well as set limits with the ailing person. You also have to balance your home and workplace responsibilities in a way that avoids placing an unfair burden on coworkers.

Nikki Sibley, director of the Office of Family Resources and Boston University Children's Center, knows firsthand about this delicate balancing act. In late September 1997, prior to her daughter's wedding, her brother told her that he had about six months to live. "The wedding was wonderful . . . beautiful," Sibley recalls. "But it was also the last time everyone saw him healthy." After the wedding, Sibley needed to involve the rest of the family -- adults as well as children. She wanted to be there for her brother as much as possible and yet not create a burden on her coworkers.

"There is time when you can give, and time you need to take for yourself," Sibley says. Her time of giving involved spending weekends with her brother, helping him with his will, paying his bills on time, making sure he ate, running errands, and in general, helping out whenever he was exhausted. But Sibley also had to find ways to juggle her work schedule at the University without creating too much strain on her colleagues.

"BU has been incredibly supportive," Sibley says. "Both the people who work for me and the ones I report to have picked up much of the slack in my absence. I told my coworkers about the situation and that there would be times I might not be able to come through for them as I had in the past. Once I told them, it was not only a great relief for me, but I received a great deal of understanding and help."

Anyone going through the experience knows that life-threatening illness is simply hard on everyone.

For Sibley, understanding her brother's illness helped. She used the Internet to find out everything she could about cancer as well as to locate wellness community programs in the area. The Wellness Community-Greater Boston, part of a nationwide wellness community network, located at 1320 Centre St. in Newton Centre, opened in September 1993, and since then monthly visits average more than 600. TWC-GB offers free programs such as weekly support groups led by licensed psychotherapists, orientation meetings, monthly networking groups, and educational workshops in a homelike setting for adults with cancer and their families.

Since her brother's death, Sibley has felt deep gratitude for the support of her colleagues and the BU community. "Even though nothing and nobody can really make it all right for you," she says, "you just have to take it one day at a time."

How to handle serious illness

  • Recognize that you may feel anger and resentment along with sadness because of the person's need for company, emotional support, physical care, or assistance in maintaining a normal daily life -- all of which can have an impact on your own life. Try to remember it's the situation, not the person, that's causing you to feel this way.
  • The sooner everyone knows about the seriousness of the illness the better. Involving everyone from the outset helps the group pull together and provides a valuable base of connection and support throughout the illness as well as after the person dies.
  • When children are told about a family member's illness, prepare them gently but realistically. Tell them that everybody dies -- that it is a natural part of living -- and let them know what physical changes to expect, such as weight loss, hair loss, and so on. Reassure children that this is not happening because the person was mean or bad, and that it is no one's fault. Prepare children beforehand for a visit to a hospital, and keep in mind that children often feel the loss of a loved one, such as a parent, long before the parent dies, because they are the ones most affected by the disruption in their routine.

Make connections
No age is too young to talk about illness and death with children. Maria Trozzi, MED assistant professor of pediatrics and director of the Good Grief Program at Boston Medical Center, is available for assistance.

  • Find out everything you can about the illness -- symptoms, treatment, support groups -- for your knowledge and in order to assist you in giving care.
  • Enlist the help of a sympathetic person (therapist, friend, member of the clergy, employee counselor) who can give you and members of your group assistance in discussing personal or professional concerns. Or if possible, gather the group together for discussion.
  • Develop your own support network both at work and in your personal life to maintain a sense of control, to assist you in handling things you find overwhelming, and to provide you with ways to address your own needs.
  • "I never know what to say" is a common refrain of those who spend time with someone who is ill. When talk is appropriate, try not to be overly cheerful. Take your cues from the person who is sick. If he wants to talk about serious matters, then be a good listener. You can demonstrate your care and concern about what he is going through with a reassuring hug or even attentive silence.
  • Try to anticipate needs so the person isn't placed in the awkward position of asking for even more help. Keep a refrigerator stocked without being asked, clear up clutter, tend to a neglected garden, or water office plants.
  • Understand that some drugs and treatments may have side effects that cause irritability, unresponsiveness, or even combativeness. Discuss such effects with your family member's health-care practitioner, and seek advice on how to respond. In the workplace, keep track of irrational behavior to assist supervisors seeking the most appropriate course of action.
  • Even in the midst of a crisis, take care of yourself. Set aside at least 30 minutes each day for yourself. Maintain an exercise schedule. Prepare nutritious meals. Get enough sleep. Journey off your isolated island of crisis from time to time to be with friends, to go to a movie, or to attend a special event.

-- Bonnie Teitleman, director of the Faculty/Staff Assistance Program, and Nikki Sibley, director of the Office of Family Resources and Boston University Children's Center

Numbers to Call
Dr. Cheryl Barbanel, MED Occupational Health, 638-8057
Nikki Sibley, Office of Family Resources, 353-5954
Bonnie Teitleman, Faculty/Staff Assistance Program, 353-5381
Maria Trozzi, Good Grief Program, 534-4005
Wellness Community-Greater Boston, 332-1919