Mastering the debrief: Handling dialogue after tough appointments

This piece is part of a series about how caregivers can nurture emotional wellness in their loved ones with hemophilia. Read more here.

I can feel and smell the quilts my grandmother made. As a child, one of my favorite quilts was a green one with a yellow border. The ties that bound the layers of the quilt together were scattered across the quilt in various colors. The coldness of the green material would envelop me, and I would make a tent out of the quilt and read with a flashlight until late at night.

When I turned off the flashlight, I would let the quilt fall over me, covering me from head to toe and giving me a sense of security and comfort as I drifted off to sleep. I want my son to feel that kind of security.

As a caregiver, I know what it is like to see my son, who has hemophilia, defeated. With numerous complications from an inhibitor, including two damaged joints, I have been in appointments with him, and he walks out defeated. Wanting to have a fix for his pain and limited mobility, the answers are not what he hopes.

I will never understand what it feels like to have a bleed or damaged joints. But what I have learned is that I will not always have the answers, and neither will the doctors. In those moments, I must meet my son where he is and offer the emotional support he needs.

As caregivers, we not only meet the logistical needs of our loved ones, but we are also here to help build their resilience, strength, and emotional well-being.

How do you know when to approach a conversation?

Pausing before speaking is a good practice, especially when a delicate matter is at hand. Processing a difficult appointment or receiving bad news takes time. While you may want to process and talk quickly, others may need time. Being overwhelmed and scared can get in the way of them communicating.

Provide margin for internal processing

Instead of trying to talk through the issue, offer a hug, go for ice cream, or sit and listen to music together. Take some time to be present in the silence. Your presence is often more valuable than words can express.

Listening for an opening

How do we know when to approach a difficult conversation? Often, the answer lies in how well we’ve listened. Listening is easy, but listening without distraction takes effort.

As caregivers, we notice excitement in our loved one’s tone and inflection. But it’s the quiet moments, the anger, or the withdrawn voice that signals a need to listen more closely. The moments of silence are essential as they allow time to process.

When we give our full attention by putting down our phones, making eye contact, and quieting our thoughts, we create a safe space. In that space, both words and silence guide us to the right moment.

Pay attention to nonverbal communication

When listening to your loved one, pay attention to their nonverbal communication. Are they fidgeting? Biting their nails? Looking away? The more time you offer them to express their needs, the better chance they have to relax and be comfortable in their sharing.

How can I navigate a difficult conversation in a healthy way?

When the time is right to begin dialogue, seek to understand and affirm their perspective about how the appointment went, not forcing your perception on them or discouraging them from being honest about their feelings.

Use open-ended questions

When your loved one is ready to talk, start the conversation with questions such as:

• “What’s on your mind?”
• “How are you feeling?”
• “What was that appointment like for you?”

Questions like these avoid simple yes-or-no responses and give space to reveal the depth of a person’s feelings.

Understand their perception

Try to understand the situation in their own words: “Can you tell me in your own words what the doctor said?” This question gives you the chance to hear how the information was interpreted from their perspective. The same information given to two people may have two entirely different understandings.

Validate their feelings

Respond with empathy:

• “That seemed like a lot to take in.”
• “It’s understandable to feel overwhelmed.”

Teaching others to mourn destigmatizes complicated feelings. Even a simple “I’m sorry” is comforting. Reassure them it is OK to feel sad, angry, and scared. It’s a normal response and valid to struggle. These realizations build strength and resilience.

Envision the next steps together

Help your loved one find ways to move forward. Instead of sitting in despair and grief, what are ways to take action toward what is controllable?

Provide ongoing support in the days to come

The emotional impact of a single appointment can last for days and weeks. Caregivers may have moved on while the patient has not. Be aware of the patient’s feelings and acknowledge the depth of their struggle.

Continue to check in and offer support. Providing ongoing emotional support can enhance a patient’s mental well-being. If your loved one needs more help than you can provide, seek professional help.

Caring for a loved one has moments of joy and despair. Being present in the joy is thrilling. However, being present in the moments when grief and sadness are overwhelming can be equally fulfilling. Caregivers have the privilege of helping their loved ones thrive in both joy and sorrow.

The act of caregiving encompasses not only the logistical aspects of care but also the emotional support required. Just as my grandmother’s quilt once wrapped me in warmth and security, caregiving for my sons with hemophilia has become my way of offering that same comfort, transforming the weight of grief and helplessness into steadfast emotional support.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.