Coping and Caregiving for GVHD

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 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 the cancer experience can be an opportunity to grow closer to one another. Specific and practical behaviors that can help identify each of your unique contributions to coping and make emotional connections during times of stress include:

  • Communicating with each other in a way that you 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 how you feel, especially about your fears
  • Avoiding testing people - be specific about what you want from others
  • If confused about a behavior, asking your loved one what they are trying to accomplish with how they are acting
  • Solving problems together as a team (work issues, communicating with children and, treatment decisions)
  • Respecting that you and your 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 those closest to you. Not sharing your thoughts and feelings will only add to their concerns. It may also increase their fear and sense of being alone. Being deeply honest with your loved one about your innermost concerns demonstrates your courage and commitment. It also gives them the opportunity to talk with you in a way that may not be possible to do with anyone else.

  • Be brave. It takes courage to be honest with others, especially those whom you love.
  • Be present. Staying physically and emotionally present is the best thing you can do for your loved one.
  • Don’t try to hide your feelings. Pulling away is probably the worst thing you can do to yourself and the person you love.
  • Plan some dedicated time to talk about your concerns.
  • Seek help. Find support from a professional.

 

Solving Problems

Solving problems with your loved one can take patience and practice. However, good problem solving skills can have a positive impact on managing a serious illness. When you build problem solving skills, you can also feel less stress. One of the most important ways to solve problems is to not do it alone. Solve problems together with your partner.

There are different models you can use 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 included in this model are:

  • Write down or discuss the general situation.
  • Identify the problem you want to target.
  • Get the expert info that you’ll need to solve the problem.
  • Identify your goal.
  • Brainstorm a list of creative solutions.
  • Choose one or more solutions.
  • Choose your favorite solution from the list and weigh the pros and cons of each.
  • Make a plan of small, manageable steps.
  • Follow your plan.
  • Evaluate your progress after a reasonable time period (usually five to seven days).

 

Couples coping with cancer program

Relationships are hard, even without the complications of illness. However, using open communication and problem solving tools may reduce the stress between couples dealing with cancer.

Our Couples Coping with Cancer Program emphasizes the concept that you always have the opportunity to start living the relationship you want. Even if you feel like you are not the partner you have always wanted to be, every day is an opportunity to move forward … start being the partner you want to be and living the relationship that you want. Even in illness, there is an opportunity that we all have every day to be our best selves, to act in ways we can be proud of and to find, and even create, joy.

We encourage you to be curious about yourself and your loved one. Allow your curiosity to help you increase your understanding of your own needs when it comes to coping with stress, as well as the needs of your loved one.

Contact the Couples Coping with Cancer Together Program for a wide range of services focused on the unique needs of partners at (626) 218-2125.