“I could just run him over.”
The thought crossed Tembi Locke’s mind as she was watching her husband shuffle to the car so she could take him to chemotherapy. He was taking forever, she told Brené Brown on a recent episode of the podcast “Unlocking Us.”
“He got into the car and … he could see it on my face that I had the thought. And he said, ‘Yes, you could run me over, but there’d be no insurance money. So, let’s go to chemotherapy.’”
Though she never said it aloud, in their conversation, Brown shared that many caregivers confess that while caregiving can often be the “greatest honor,” it also takes a great toll. A new study published in JAMA Network Open confirmed that cost, finding that partners of cancer patients have a greater risk for psychiatric disorders, including depression, anxiety and substance abuse.
The study followed millions of caregivers, focusing on more than a half million spouses of cancer patients. It revealed that over the course of the first year after diagnosis, risk for developing a psychiatric disorder increased by 30% for spouses 40 to 79 years old. When patients were diagnosed at an advanced stage or with a poor prognosis, the effect was even more pronounced.
Putting on the oxygen mask
Just as airline attendants explain where to find the oxygen mask before a flight ever takes off – and then stress to attend to yourself first – so, too, should caregivers be aware of the realities of caregiving and the resources they have after a partner’s cancer diagnosis
While many caregivers turn to helpful resources, such as the ASCO Answers guide for caregiving at the time of diagnosis, others remain in the dark, as the researchers wrote in their study:
“Efforts on interventions to assist caregivers’ mental well-being are still in their infancy.”
A helpful guide will help you identify who can help, what tasks to delegate and which kinds of resources you can request. It provides a framework for managing care for your loved one as well as a checklist of questions to monitor your well-being. For instance, it might be helpful to talk with a doctor or a counselor if a caregiver checks any of these boxes below:
- I feel exhausted all of the time.
- I don’t enjoy things I used to enjoy.
- I eat too little or too much.
- I’m withdrawing from people.
- I get sick more often than usual.
- I cry a lot.
- I’m not able to sleep well.
- I have headaches and/or unexplained pains.
- I feel impatient, irritated or forgetful.
- I have trouble focusing or making decisions.
- I’m drinking more alcohol than usual.
- I can’t find any time for myself.
Self-care ultimately builds a caregiver’s resiliency and endurance. The most effective self-care is multi-faceted and begins with the basics, like diet, exercise, rest, connection and self-awareness. Choosing mostly plant-based meals low in salt and sugar, for example, reduces blood pressure and blood sugar, improves mood and buttresses the immune system. Going for short walks throughout the day offers the same benefits.
A healthy diet and regular exercise affect sleep, and that rest will also help your mental health. Limiting caffeine and alcohol, avoiding blue screens in the hour before bed, and ensuring your sleep space is free from distractions can also help with high-quality rest.
The value-added benefit of asking for help
Asking for help takes many forms and may be difficult for those most at-risk, according to the study, including males and those with lower incomes. When a partner is first diagnosed, it may help to set up a network of friends and family. Tell those who offer to help that you will need to ask in the future—and find out what they’ll be willing to do.
It’s acceptable to trust friends and relatives to take a spouse to chemotherapy or some appointments; just ask them to take notes for you. Look for trusted friends and relatives who can also help with household duties like cleaning, cooking and laundry. After all, a shorter to-do list gives you margin to “be off the hook” mentally and physically. You need time to go out with friends or confidants and to exercise as a way to prioritize your own self-care. Be sure to also ask your spouse’s provider about family wellness options, such as social workers, mental health specialists, home health aides or insurance advocates to free you up.
Cancer.net offers some additional tried-and-true advice:
- Set an intention to manage stress including recognizing personal limits.
- Concentrate on what you can control, and let go of what you can’t.
- Explore financial assistance, even fundraising.
- Ask about FMLA for paid and unpaid leave options.
- Contact your human resources department about EAP benefits, which cover six to eight sessions with a licensed therapist.
It’s helpful to remind yourself that nobody else can be “you” to your spouse. You can’t be or do all the things, which is why your greatest gift is being the healthiest version of yourself.