By Emma Smith, MPH
Years ago, my father fell ill, eventually losing the ability to walk. My mother suddenly found herself in the role of caregiver, for which she was unprepared. I wouldn’t learn of the toll caregiving had on her mental health until much later (admittedly, mental wellbeing was not on my radar at the time, as it was not discussed in my family or social circle).
A 2020 report by the National Alliance for Caregiving and AARP, documented that 12 percent of caregivers of adults are a spouse or partner, up from 10 percent in 2015. The report also found that compared to 2015, more adults are not only assuming the role of caregiving, but they are also doing so for individuals with more complex medical and/or support needs.[i] One survey found that almost all spousal caregivers live with the care recipient, taking on a 24/7 responsibility. Compared to other types of caregivers, they receive less professional and/or familial help as well.[ii] Spousal caregivers may also experience high rates of depression, even more so than the care recipient.[iii]
Spousal or partner caregivers face unique challenges. With the new and often complicated role of caregiver, the marital relationship dynamic changes. They may no longer be able to engage in their favorite social activities together. The care recipient may feel embarrassed, ashamed, or angry at suddenly being dependent on others, specifically on his or her spouse. The caregiver may feel resentment about taking on new responsibilities or guilt for taking personal time. These feelings may lead to frustration with one another and added stress.
So what are some ways that the spousal/partner caregiver and care recipient can cope with the shift in their relationship?
Embrace the change. It’s OK to grieve the loss of the way things were and consider opportunities for strengthening your relationship. Perhaps there are new hobbies or interests you can both take up.
Talk it out. Feelings of anger, frustration, and overwhelm are entirely normal. Rather than bottle up these feelings and let them brew until they explode, consider friends and/or family members who may be outlets for venting. Online forums, such as the Caregiving.com chat rooms, are another option.
Know that you are not alone. There are resources to help you. For example, the Well Spouse Association offers peer mentors and support groups. Sites like CaringBridge allow you to develop an online space to connect friends and family and to coordinate help when needed.
Explore options with employers. The Family Medical Leave Act (FMLA) has provisions for both an employee and a spouse experiencing a serious health condition. Many employers have programs in place where donated leave can be extended to an employee. Using these programs may allow the breathing room necessary to get needed care.
Recognize the impact to caregivers. The effect on caregivers is known as “caregiver burden” and it represents the significant amount of strain and difficulties experienced by the caregiver or family member of mentally or physically ill people, including a range of psychological, emotional, social, physical and financial problems4. Especially when dealing with difficult conditions, the caregiver’s burden is complex and complicated by multiple competing priorities. Because caregivers are often faced with multiple concurrent stressful events and extended, unrelenting stress, they may also experience negative health effects5. Make sure to take care of your own physical and mental health.
And if you have a parent caring for a spouse or partner, check in regularly. My parents did an excellent job at concealing the extent of their struggles from my siblings and me, all in the name of “protecting us.” Do not assume everything is fine. Offer ways to pitch in to reduce the burden. You can also tell people what you need; there are often people who want to help, they just don’t know the best way to contribute.
