Learn how to navigate the rough waters spousal caregivers may encounter

Imagine your spouse has just been diagnosed with a new health condition that requires immediate medical treatment and possible ongoing recovery at home. The news may come as a shock to you, or perhaps you’ve been suspecting something for a while. If you’re faced with this new reality, you probably feel overwhelmed with questions:

  • What treatment options do we have?
  • Will my spouse be OK?
  • How long will the recovery take?

The initial days and weeks following a new diagnosis often are filled with confusion. They’re described by couples as a haze — obscure, tough to navigate and leaving them unable to accurately predict what lies ahead.

The Good News

Spousal caregivers can make a significant contribution to a successful treatment outcome. Here are a few common and effective ways for caregivers to manage, practically and emotionally, a loved one’s illness:

Medical decision-making

Challenge: The pressure to make quick medical decisions right after a diagnosis can be a daunting task. Patients may be too emotionally distracted to think analytically during initial consultations. Also, if you’re considering second opinions and alternative treatment options, the amount of information presented to you and your spouse may seem overwhelming and too technical to grasp in one appointment.

Advice: In most non-emergency situations, couples don’t have to make definitive, on-the-spot treatment decisions while meeting and consulting with medical staff. Instead, gather as much information as you can, ask doctors all of your pressing questions and take good notes. With your help, your spouse and you can process the pertinent information and make important medical decisions later, at home.

Coping with anxiety

Challenge: It may be difficult to handle the waiting period before treatment starts. As patients undergo scans and other diagnostic tests, the sense of uncertainty can magnify your spouse’s worst fears and complicate healthy coping. “Scanxiety” is by far one of the most common and emotionally challenging experiences for patients and their spouses.

Advice: There are effective behavioral remedies that you and your spouse can try at home. First, acknowledge that it’s natural to feel anxious in this situation. Accept that feeling uneasy and nervous while waiting for critical health information is a normal reaction. Your goal is to lower the anxiety in that moment, not necessarily to get rid of it completely. You can de-escalate the intensity of anxiety by helping your spouse talk it through: Recognize what’s going on, validate their feelings and reiterate all the steps you already have taken to deal with the diagnosis and the next steps you are prepared to take.

Everyday life

Challenge: The emotional rollercoaster of making medical decisions and waiting for scan results is not just psychologically difficult. It also can inhibit your ability to deal with more practical concerns: navigating insurance coverage for procedures and medications; maintaining financial stability and job security; and handling the shifting roles and responsibilities within the family.

Advice: Ask for help and accept support from family and friends to ease everyday worries. Online tools like Caregiver.org, CaringBridge.org, and LotsaHelpingHands.com offer diagnosis-specific education, peer support, electronic platforms for coordinating meal trains and school drop-offs, and keeping loved ones up-to-date. Dealing with a serious or chronic illness is one of life’s most humbling lessons. Allowing yourself to be imperfect and to approach your new role with humility and humor can help strengthen spirits and the capacity to recover.

 Respecting autonomy and self-determination

Challenge: Watching your spouse go through difficult medical treatments can be heart-wrenching. Your desire to alleviate their pain and suffering, however well-intended, might inadvertently undermine their sense of autonomy. This power struggle is especially pronounced when it comes to food choices, eating habits and weight management.

Advice: Remember that changes in appetite might have a physical basis, the result of treatment. Alternatively, food might be the only area where patients can still exercise control and independence. Consult with your spouse’s medical staff and dieticians to learn more about nutritional goals and treatment side effects.

Caregiver burnout

Challenge: While the range of specific issues faced by couples in a medical crisis varies, the risk of spousal caregiver burnout is real and can catch even the strongest person off guard.

Advice: If your spouse relies on you as the first-line defense, create a second ring of support reserved exclusively for you. Find out if your spouse’s treatment center is staffed with therapists and chaplains who offer a confidential space to process your reaction to your spouse’s diagnosis and treatment. Whether it’s professional counseling, spiritual care, confiding in friends or enjoying hobbies, the need for a self-care routine should not be neglected. It’s essential for your sense of resilience.

Ziva Naghiyeva, LCSW, OSW-C, is a clinical social worker at the Samuel Oschin Comprehensive Cancer Institute and the Saul and Joyce Brandman Breast Center at Cedars-Sinai. She is a board-certified specialist in oncology counseling and psycho-social care. Her clinical practice focuses on providing psychotherapeutic support to women undergoing treatment for breast cancer and their families.