Over the past several decades, I’ve been a care provider for many people. Most of my care receivers were elderly, including one neighbor, an aunt, an uncle, two in-laws and two parents. Each one needed varying amounts of care across different settings. Through it all, though, I’ve had a hard time accepting the label of “caregiver.”
My experiences growing up in a multi-generational household may be one reason why I struggled with this concept. My paternal grandmother lived with rheumatoid arthritis for most of her life, and as she got older, it caused her pain and seriously limited her mobility. She eventually moved in with our family and lived with us for seven years. However, during those years, I never heard the term “caregiver” used to refer to my mother, who stayed at home to look after Grandma. She simply did what family is meant to do.
Looking back, I may have benefited from labeling myself a caregiver earlier on in my journey. But deep down, I felt that doing so might take away some of my elders’ dignity. I still struggle to reconcile this terminology with our loved ones’ desires for independence and normalcy. Nevertheless, defining our role as caregivers is important, because it opens up vital sources of information, support and services that we may otherwise overlook.
Caring for a Spouse
In my experience, spousal caregivers especially struggle with how to characterize their relationships. By referring to oneself as a caregiver for a spouse, some may feel the marriage is diminished. When a marriage changes from a partnership to a perceived dependent relationship, both sides must work to accept the new dynamic.
It’s not what either of you would have chosen, but such is life. Many spousal caregivers take their vows to one another very seriously. However, promising to love someone in sickness and in health does not mean that a spouse must be the be the sole provider of their significant other’s care. This train of thought often leads to isolation, stress, depression and caregiver burnout. Only by accepting these changes can the caregiving spouse begin to see the importance of self-care for all involved.
Those spouses who work through the painful feelings and eventually accept the role of caregiver are more likely to seek out help. Added support and services, such as in-home care, benefit both spouses and can actually enable them to focus on strengthening their relationship, since the hands-on caregiving duties fall to a professional. It often takes more work to adapt one’s expectations and maintain respect for the partnership, but becoming a caregiver for a spouse needn’t diminish the relationship.
Adult Children As Caregivers
Even as adults, many of us look to our parents as protectors and sources of wisdom and support. Yet, as Mom and Dad get older and require assistance, we offer more and more aid to them. Some may feel like caregivers the first time that a parent requests help, while others may never accept the label at all. Although the relationships involved are very different, the consequences of ignoring one’s caregiving role are similar for adult children and spouses. If we don’t accept the fact that the dynamic has changed, we are less likely to seek out the help and support we need to provide quality care. This, in turn, is more likely to endanger our own health, complicate our family relationships and lead to burnout.
Caregiving Covers a Vast Spectrum
Just as different relationships change how caregiving is perceived, different care settings affect perceptions as well. Some families, like mine when I was growing up, live with their care recipient. Some of these caregivers bring in professionals for respite and hands-on help. Others opt to place their loved ones in independent living, assisted living, memory care or skilled nursing facilities to ensure all of their needs are met. Regardless of the living arrangement, the care schedule and the relationship, any person who is genuinely interested in another’s wellbeing and involved in managing their care is a caregiver. Ensuring their wellbeing entails some level of emotional, physical and financial strain. Because of this, all caregivers need and deserve adequate, ongoing support.
Whether we embrace or deny the label, we are providing care. Accepting the label of caregiver does not demean the person we care for or our relationship with them. Being honest with ourselves about this role will help us adapt to new relationship dynamics, seek out support everywhere we can, and enable us to accept outside assistance. In this way, both caregivers and care receivers can be supported and respected.