When a child is diagnosed with pulmonary hypertension, parents must learn to juggle a whole new set of priorities. Such changes can make it difficult to focus on the two of you, as a couple.  But a healthy relationship can be a source of energy and renewal. When life is the most hectic and stressful is when you are in the greatest need of your partner’s affection and support, so take the time to nourish the relationship you have with your “other half.”

We hope you’ll find the following advice helpful. It was offered by parents on the PHA_Parents email group and adapted from “My Child Has PH: A Guide for Parents,” produced by the National Spanish Association of Pulmonary Hypertension (ANHP).

Share the responsibilities

  • While one parent often takes the lead in the caregiving role, try to share tasks so one parent doesn’t feel overwhelmed. Make sure that you both know how to do all relevant medical tasks so you can provide back-up for one another. One mom, for instance, told us that she and her husband took turns mixing their daughter’s medication.
  • Encourage your child to approach both parents for emotional support. Sometimes children lean on one parent more than the other, but this can prove stressful in the long-term. Encouraging open communication with both parents lets the child know that they can talk freely to either one whenever the need arises.
  • Both parents should “be present” to the disease. Often a parent will, as one of our caregivers put it, “deny things that are not pleasant.” The other parent must then deal with the realities of a situation: from going to doctors’ appointments to accepting and acting on bad news.
    Another caregiver noted that it took her husband “more than a year to really wrap his head around this … he doesn’t like to deal with PH, but now I don’t let him sidestep it too much.” If your partner needs some help adjusting to these new circumstances encourage him/her to speak with other PH parents, to your child’s PH specialist, or to a social worker or counselor.

Talk, talk, talk … and listen

  • “We now have to talk about issues a lot more than we used to and I think we are both a bit more sensitive than we used to be,” revealed one parent. Share your feelings and your worries: don’t be afraid to ask for what you need from the other. Remember that your partner can’t read minds, you need to ask! Don’t forget that you are both looking for the same thing: the best for your child.
  • Questions you might both periodically reflect on are:
    How does the illness affect us as a couple? What can we do to improve our relationship? What do we need as couple under our present circumstances?
  • When conflict arises try to use “I” messages rather than “you” messages. During an argument “you” may seem judging or accusatory. “I” expresses your sentiment without judgment.
  • In difficult times, it is quite normal for your physical relationship to be affected. It is important to respect your partner’s pace. Sexual relations are an expression of intimacy. Take time to nourish your intimate relationship.
  • If you find it is becoming hard to find common ground with your partner, consider professional counseling.

Reserve private time for you as a couple

  • Frequently parents devote all their time to their child’s illness, leaving no time for themselves and allow this to become “the new normal.” As one mom put it, the marriage “begins to sit far in the background.” When the focus eventually shifts back to the relationship, she warns, the couple “might be faced with a marriage that is in bad repair or else they feel they no longer know the other person.”
  • To avoid this scenario, make time for the kind of activities that you used to do before your child’s illness. Having your child, occasionally, looked after by others is an opportunity to strengthen the bond with your partner. Don’t feel guilty: enjoy this time as a couple. Two of our caregivers try “to have a date at least every couple of months, just the two of us.”
  • Leaving your child in the care of a trusted friend or family member can help you and your partner relax during your time alone. Educate this person on the everyday aspects of caring for your child, as well as potential emergency care. Specialty pharmacies can also send nurse representatives out to train family members and friends.

Put the illness in its place

  • Don’t give it more time than is necessary, nor less. Find the balance. Try not to center all your conversations and activities on your child. Your lives are made up of other elements apart from the illness: friends, relatives, hobbies, dreams, etc.
  • It is particularly important that other children do not feel left out. Make sure there is always a focus on the “family” as a unit, rather than just the sick child. Enjoy shared experiences such as games, vacations, etc. In doing so you will refocus your roles back to that of “parents” and not only “caregivers” to a sick child.
  • Your relationship with your partner is not defined by the introduction of PH into your family. And like any challenge in life, pulmonary hypertension can strengthen the family bond. In fact, in a recent PHA survey the vast majority of caregivers said it had done just that. One caregiver noted, “I think we have both become better people because of everything we’ve been through” while another said, “Pulmonary hypertension has strengthened our marriage.”