Accepting the Caregiving Label Is Often a Challenging Process


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.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

Minding Our Elders

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Carol, thank you. This is the best explanation and description of caregiving I've ever seen, and it's the first time I've seen the discomfort regarding a perceived loss of dignity on the receiver's part addressed. It's real. As my mother's caregiver, I often feeling uncomfortable with the term, even though it applies. I appreciate your thoughts and the reminder that respect remains.

Thanks again. I'm passing this on to others.
Well said, and beautifully written. We should look at caregiving in a new light, and see it as a service to our loved ones, not as a chore or some guilt-driven sacrifice. Too many caregivers morph into martyrdom, and as a person with low self-esteem, I see this slippery slope beneath my toes! I'm caregiving for both my parents, but after six months I'm ready to call in some assistance. We should make caregivers comfortable with asking for help, because so many of us are used to giving and not taking... also, I love that you addressed the issue of "demeaning"; there is nothing demeaning about helping someone you love. All cherished relationships deserve to be "in sickness and in health, till death do us part."
Dear Carol. Thanks for writing your article. I guess this situation is how you look at it. I love my mom and dad but am seeing me go down hill
I always thought I was strong. But now questioning life. I will use your article as a tool to help guide me through this and try and find a balance.