When a spouse is diagnosed with a serious health condition, what can you say? What should you do? A Johns Hopkins expert shares strategies to help you both feel strong.

Every year, millions of couples come face-to-face with a serious illness. A new diagnosis—whether it’s Alzheimer’s disease, cancer, heart failure, kidney dysfunction or another major medical condition—is life-changing for both of you. Yet research reveals that the needs of the well spouse are often overlooked, just when he or she needs the strength to support a partner in new ways.  

If you have suddenly been put into the role of caregiver, what should you do—and how can you stay strong while you do it? Psychiatrist and caregiver health researcher Peter Rabins, M.D., M.P.H., co-director of the geriatric psychiatry and neuropsychiatry division at The Johns Hopkins Hospital, recommends these strategies.  

Listen and share time.

Not sure what to say? That’s OK. Assure your spouse that you love and support him or her. Listen if your spouse wants to talk, or just spend quiet time together. If possible, keep sharing routines that have been part of your life together—a TV movie and popcorn on Friday night, morning coffee and the daily newspaper, walking the dog. After a serious diagnosis, you both may cherish these everyday traditions more than ever.  

Get informed.

Well spouses cope better when they, like their partners, have accurate, firsthand information about their mate’s condition, treatment and needs. “The more you know, the better,” Rabins says. “It’s OK to start with the Internet, but make sure you find reliable websites that provide accurate, up-to-date medical information. Be sure to ask health care providers questions too.”   

Talk to practitioners together.

Don’t sit in the waiting room or stay silent during medical appointments. “Work together, beforehand, to create a list of questions,” Rabins suggests. “This gets the two of you talking about your concerns, your worries and areas where you need more information.”

Prioritize your questions—putting the most important ones first—to be sure you receive the info you need most at your spouse’s next appointment. “If there’s not time to discuss all of your questions, ask if a nurse or physician’s assistant can help, if you can meet at another time, or if you can discuss your concerns by phone or email,” Rabins suggests.

Sidestep nagging.

A major medical diagnosis can lead to doctor-recommended changes in your spouse’s diet, physical activity level, medication routine and need for rest. A well spouse’s support and encouragement can help a partner stay on track, but this new role can also trigger frustration on both sides. The well spouse may feel stressed; the ill spouse might not appreciate nagging.

“For some people, it’s useful to put some of the burden for deciding what’s most important back in the hands of health care practitioners. Otherwise, this can add extra strain to your relationship,” Rabins says. “Ask about diet, medications and other daily needs. That way, instead of saying to your partner, ‘You must take all of your pills,’ you can say, ‘I asked the doctor and she said it’s most important to take these medications on a strict schedule, but it’s OK to take this one a little later.’”

Accept help.

Are offers of casseroles and housecleaning pouring in? Let well-wishers lighten your load so you can focus on your ill spouse and get needed rest and support for yourself.

“If you’re feeling exhausted or overwhelmed, tell the doctor, nurse or hospital social worker,” Rabins says. “Sometimes well spouses are surprised by the home services covered by insurance. You might get help bathing and dressing your spouse, or your spouse may qualify for occupational or physical therapy that will show him or her and you how to make things easier in your home.” 

Definitions

Caregiving: The assistance family, friends and professionals provide to those who are old, sick or otherwise unable to care for themselves. Caregiving can include buying groceries, cooking meals, cleaning, assistance with bathing or personal care, making and driving someone to medical appointments, dispensing medicine, helping someone get in or out of bed, and more.Heart failure: When the heart cannot supply as much blood as the body needs, because it cannot fill completely or cannot pump with enough force. Diabetes, high blood pressure, heart disease and heart valve problems can cause heart failure. Heart failure does not mean the heart is about to stop. Medications and lifestyle changes can reduce symptoms.