A PH Diagnosis Affects You Both: Helping Your Significant Other Transition Into the Caregiver Role

JenJen and her husband

Whether you are dating, engaged or newly married, having your significant other transition into a caregiving role can be difficult and overwhelming. You may feel guilty for placing a “burden” on your significant other. You may even feel unsure about how to initiate the conversation about PH. You can tell your significant other has a lot of questions, too. We spoke to PH patients who have been through this challenging time, and now we share their advice with you.

Build your relationship. Especially if you are in a new relationship, you may feel reluctant to reveal the realities of living with PH, and that’s okay. Diagnosed at age 5, Hannah spent her dating years with PH and says she “never made a big deal about [her] disease.” Instead, she notes it is important to get to know each other first. Regardless of your disease state, all relationships are based on mutual trust, care and respect. Once your relationship has a solid foundation, feel free to share as much or as little as you want about your life with PH.

Be honest. When you do decide to talk to your significant other about taking on a caregiving role, it is important to be honest. You want to make sure he or she is prepared for living a life with PH. Consider these tips when preparing to talk to your significant other about PH:

  • Encourage your partner to visit www.PHAssociation.org/AboutPH to learn more about PH.
  • Take your significant other to a doctor appointment with you. Give your significant other a chance to ask the doctor or nurses any questions.
  • Do not hide or exaggerate any part of your diagnosis or medical needs.
  • You and your significant other may also want to discuss finances, especially if you are engaged or considering marriage. As you already know, treating PH can be very expensive, and your loved one may be unaware of the full costs. Talk openly and honestly about budget and health insurance concerns. If the two of you have a tight budget, meet with a financial advisor or visit www.PHAssociation.org/FinancialAssistance to find ways to cut drug costs and other expenses.

Split up responsibilities. As Kevin, a newly diagnosed patient, says, “Daily chores can be doubled, as the caregiver is doing for themselves as well as for us.” Still, you can help ease the workload of your significant other. If it is difficult for you to go grocery shopping, consider creating the grocery list and planning meals for the week instead. If he or she provides the income for both of you, make the budget and find ways to cut costs. On good days, try to wash clothes or straighten up around the house. Even if you cannot do as much as you’d like, your significant other will appreciate your efforts.

Care for your significant other. Kevin reminds us that your significant other chooses to live with PH and care for you. Don’t forget your significant other has needs and feelings, too!

Jen was diagnosed in 2005, and her husband did not hesitate to take on a caregiving role. She admits she feels her husband “gets the bad end of the deal” from the ups and downs of PH and works very hard to take care of her. However, Jen does what she can to stay connected with her husband and ensure he remains healthy.

Jen recommends making sure your significant other has time for self-care. Encourage him or her to take a few hours or a day to spend time with friends and other family members. Look for a fun class such as art or fitness for your loved one to take. If your finances allow it, surprise your significant other with a massage or spa day. Also, your significant other may want to connect with a PHA Caregiver Mentor or join a PHA support group.

This article first appeared in Pathlight, Summer 2013.

 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.