Coping and Caregiving for Someone With Chronic GVHD

September 27, 2024
This page was reviewed under our medical and editorial policy by Leslie Popplewell, M.D., Hematologist and Medical Director of Hematology and Blood and Bone Marrow Transplant, City of Hope^® Atlanta

Living with chronic graft versus host disease (GVHD) can increase emotional distress, which may impact many aspects of life, including home life, work life and relationships. But GVHD does not only affect the patient; it also affects their partner, family and friends.

Caregivers can be as distressed as the person diagnosed with GVHD. Even the most supportive caregivers can have a difficult time knowing what to say, what kind of comfort to provide and where to find help. For these reasons, it is essential for patients and caregivers to learn how to work together to manage the stressors inherent to illness.

Men and Women May Cope Differently

Although every individual is unique, men and women often respond differently during times of stress. Women more typically reach out to others to share their concerns and fears, while men are less likely to discuss emotions and may try to immediately solve the “problem.”

Men may even make jokes about the situation as a way to cope with their partner’s and their own fears. This is where men and women can learn from and build upon the strengths of their partner and work together as a team. For many couples, dealing with an illness may be an opportunity to grow closer to one another. Specific and practical behaviors that can help identify each person's unique contributions to coping and make emotional connections during times of stress include:

• Communicating with each other in a way that each person will be proud of in the future
• Actively encouraging the sharing of emotional concerns and fears
• Listening to concerns without trying to “fix,” minimize or give advice (unless asked)  
• Being honest and direct about all feelings, especially about fears
• Avoiding testing people and instead being specific about what is expected or needed of others
• If facing confusion about a behavior, ask the patient what he or she is trying to accomplish with his or her actions
• Solving problems together as a team (work issues, communicating with children and, treatment decisions)
• Respecting that the patient and his or her loved one might cope with things differently
• Requesting support from professionals, as needed

Men can learn that instead of trying to solve problems, it’s OK to simply sit quietly and listen, even if the person they love is crying or upset. Women can learn that they should avoid bringing up past grievances and focus on what they need from their male caregiver today. By better understanding each other’s needs, men and women can ensure that those needs are met throughout the cancer experience.

Communicating About Difficult Topics

It is natural to want to protect those we love. Caregivers may not want to share their thoughts and feelings, if they think it will add burden to their loved one during their illness. Although honesty can be difficult at first, it will create an open environment for communication. This means that all efforts can then go into being emotionally connected with each other during a difficult time.

It is hard to hide thoughts and feelings, especially from close friends and relatives. Not sharing thoughts and feelings will only add to their concerns. It may also increase their fear and sense of being alone. Being deeply honest with loved ones about all innermost concerns demonstrates courage and commitment. It also gives loved ones the opportunity to talk with the patient in a way that may not be possible to do with anyone else.

• Be brave. It takes courage to be honest with others, especially loved ones.
• Be present. Staying physically and emotionally present is the best thing that can be done for loved ones.
• Don’t try to hide these feelings. Pulling away can be damaging.
• Plan some dedicated time to talk about any concerns.
• Seek help. Find support from a professional.

Solving Problems

Solving problems with a loved one can take patience and practice. However, good problem-solving skills can have a positive impact on managing a serious illness. Building problem-solving skills may also allow those involved to feel less stress. One of the most important ways to solve problems is to not do it alone. Solve problems together with a partner and other loved ones.

There are different models to develop problem-solving skills. One such model is COPE (Creativity, Optimism, Planning and Expert Information). COPE was created by experts for families coping with a serious illness. Some practical tips include:

• Write down or discuss the general situation.
• Identify target problems.
• Get the expert information needed to solve the problem.
• Identify a goal.
• Brainstorm a list of creative solutions.
• Choose one or more solutions.
• Weigh the pros and cons of each solution selected.
• Make a plan of small, manageable steps.
• Follow the plan.
• Evaluate progress after a reasonable time period (usually five to seven days).