Organizing for Illness
My grandmother once told me, “Getting older is not for sissies.” As the health of her friends declined, she found it sad and painful not to be able to help in meaningful ways. Now in my fifties, I know what she meant. My friends and I are supporting each other (and our partners and, sometimes, our children) through emergencies like heart attacks and surgeries and through bouts with chronic illness, including MS, AIDS, and fibromyalgia. Along the way, we’ve learned some tough lessons about how to make it through. In fact, we’ve got it down!
It’s all in getting organized. When we find out that someone is so ill that they can’t function or that someone is about to be laid up for a time, we get together to plan. We list everything that the sick person usually does in her or his family. We divide the tasks into logical categories and assign a leader to each one. The leaders then start calling for volunteers to create a schedule of helpers. When people call to ask what they can do, they get added to the list.
We’ve found that it is critical to ask people to do only what they feel comfortable guaranteeing they can do. There is room for whatever contribution a person can make. Some people feel fine about cooking a whole meal for a family. Others really can only fit in a trip to the pharmacy to pick up a prescription. Tasks large and small, taken together, add up to major support for a family. I’ve included examples from my own life and lives of some friends below:
Recovery from Illness: When my friend learned that she would need extended bed rest to recover from pneumonia, she started to organize. Like the rest of us, she had learned that it is foolish, if not dangerous, to try to manage alone. She started the ball rolling by setting up what she needed for the first week, and then turned the problem over to her friends. Her children got after-school play dates and rides to lessons. Meals got delivered. The kitchen got cleaned up every day. The cats got fed.
Recovery from Surgery: When I found out I needed brain surgery, my closest friends set up a committee. Each took a category: meals, kid rides, household tasks, visitor control. They then put out the word for volunteers. My family received a hot meal every night for six weeks. Every child (I have four) got to every lesson, sports event, and play date thanks to the ride committee. My husband and the older children got help with cleaning and errands for weeks. And the visitor “chairperson” fielded phone calls and visits so that my husband didn’t have to answer the phone constantly and so that I got extended periods of rest every day.
Terminal Illness: When a friend was diagnosed with terminal cancer, she and her partner decided to arrange for her to die at home. The couple’s closest friends organized a coordinating committee. Task groups were set up for meals, dog walks, help with appointments, household tasks, and overnight shifts (to give the caregiving partner some uninterrupted sleep). Volunteers poured in from her community, her softball team, and her workplace. Every slot was filled for the three months she was ill and dying.
Our friend got to die in the comfort of her own home, her partner by her side, surrounded by loving friends. Her partner got the support and love of a community while the couple went through a very, very difficult time. Friends got to help in a meaningful way and to say goodbye.
I have also seen what happens to a couple or a family when they don’t get the help they need during a traumatic time. Twelve lasagnas arrive in the two days after surgery, and then nothing happens for the weeks that follow. Well-meaning visitors come when it is convenient for them to do so, not necessarily at the times when it is most helpful. Family members, already taxed emotionally, find themselves having to manage and thank people when they would really prefer to be left alone. Important tasks fall through the cracks, sometimes creating yet another crisis. The sick person feels guilty for being sick and often tries to rush recovery (almost guaranteeing a relapse). It can be a mess!
Organizing for illness is a bit of work but it is work well worth doing. Planning gives the sick person enormous peace of mind so she or he can relax and recover or, in cases of terminal illness, move through the dying process. When the family doesn’t have to worry about the basics of daily life, they are freed up to deal with the new emotional demands of having a sick family member. When people are given concrete helping tasks, they feel less at a loss for what to do. When people participate in a community of helping, they are more able to accept help when their turn comes. And when everyone is working together to ease someone’s suffering and to help a family, the bond of love and community is strengthened.
Hartwell-Walker, M. (2013). Organizing for Illness. Psych Central. Retrieved on April 21, 2015, from http://psychcentral.com/lib/organizing-for-illness/000494