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Holiday Planning and Terminal Illness

How can families facing terminal illness cope with the holidays?

As we approach the holiday season, I've frequently been asked to share some advice for those who are mourning the loss of a loved one at this emotionally-charged and spiritually significant time of year. Today, there is also another large and growing population who find themselves facing a different challenge: celebrating holidays while simultaneously fighting a terminal or potentially terminal illness. Though not outwardly acknowledged, we know that the families of people like Elizabeth Edwards and Steve Jobs found themselves having to navigate these emotionally difficult waters. It's families like these who Dr. Barbara Okun and I interviewed when working on our book, Saying Goodbye: How Families Can Find Renewal through Loss.

Modern medicine has literally transformed the nature of death and dying (and consequently of mourning) as we have understood these concepts for centuries. What as little as 50 years ago was a relatively quick process -- from terminal diagnosis to death -- has increasingly been replaced by a lengthy process that may lead to remission, or at the very least to an extended life. However, this process, which has been described to me by more than one person as "learning to live with death" differs from traditional mourning in two ways: It can go on for years, and it involves the patient and his or her family and loved ones.

Facing the Holidays and Terminal Illness

Many treatments have been developed and are being developed to combat what were once surely terminal illnesses. That said, between 20 and 30 percent of those diagnosed with metastatic breast cancer will at some point experience a recurrence (" target="_hplink"). In other words, the idea of "surviving" cancer effectively means "surviving so far." Of course, cancer survivors and those who are in treatment do not walk around consciously thinking this every minute of every day. On the other hand, many acknowledge that they are aware, as a result of their treatment experience, that they must live with a degree of uncertainty.

Treatments for potentially terminal illness -- chemotherapy, radiation therapy, surgery -- often have pernicious and possibly debilitating side effects. Patients and families who find themselves combating terminal illness need to make some decisions as to how they will celebrate the holidays ahead given these realities.

Here are some suggestions, based on what families and patients have shared with me, for ways that caregivers and loved ones alike can help make the holidays a meaningful experience.

• Don't put off the planning too long. Many people have told me that the idea of celebrating Thanksgiving, Christmas or other holidays while also embroiled in treatment for cancer or dealing with a loved one diagnosed with Alzheimers seemed overwhelming. So they avoided it. In the end, they say this will likely only make the holidays a more stressful and unhappy experience. Better to think about how you want to approach the holidays.

• Convene a meeting of those family members who want to play a role in celebrating the holidays, including the family member who is in treatment. Keep in mind that if that family member played a central role in celebrating one or more holidays, there will be that much more for other family members who are willing to pick up some slack to do.

• Delegate (or volunteer) to step up and take responsibility for some aspect of what will now be a new family tradition. Issues that may need to be addressed include where the new tradition will take place, what kinds of food might be served and who will prepare them, and how gift-giving will be handled (for example, will the patient in treatment need assistance picking out or getting gifts).

• Allow the family member in treatment to have some say in how much or a role he or she is able to take, given his or her stamina, in the new family tradition.

Family traditions are the glue that keep a family connected over time. They are also a way that families traditionally have weathered crises, including terminal illness in a loved one. Moving forward with a new family tradition is one way for families to build their resilience and potentially emerge even stronger from such a crisis.

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Copyright 2011 by Dr. Joe Nowinski

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