Many individuals struggle to accept the label of “family caregiver,” but fully embracing this role increases our chances of succeeding in it.
What Is a Caregiver?
Over the past several decades, I’ve been a care provider for many people. Most of my care recipients were elderly, including one neighbor, an aunt, an uncle, two in-laws and two parents. Each one needed varying amounts of care across many different settings. Through it all, though, I’ve had a hard time embracing being labeled as a “caregiver.”
My experiences growing up in a multi-generational household may be one factor in why I struggled with this concept. My paternal grandmother lived with rheumatoid arthritis for most of her life, and it caused her pain and seriously limited her mobility as she got older. 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 expected to do.
The National Library of Medicine’s resource, MedlinePlus, defines a caregiver as a person who “gives care to someone who needs help taking care of themselves.” A care recipient could need help because of an injury, a disability, a chronic illness or advancing age. This simple definition makes sense when it’s spelled out, but for so many, “caregiver” is a loaded word that evokes a wide variety of connotations and consequences in people’s minds. I have often heard family caregivers reject this label with statements like, “I’m not his caregiver; I’m his wife!” and equivalent protests from adult children who are clearly caring for their aging parents or in-laws.
Looking back, I may have benefited from acknowledging that “I am 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 family caregivers is important, because it opens up vital sources of information, support and services that we may otherwise overlook.
Types of Family Caregiver Roles
There are many different kinds of relationships and situations that can evolve into a care-based dynamic. Each caregiving role comes with its own unique joys, challenges, expectations and duties. Understanding some of the more common issues associated with these roles can help family members prepare for them and continue providing care with compassion, self-awareness and tact.
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 what is often perceived as a dependent relationship, both sides must work to accept the new dynamic and make it their own.
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 sole provider of their significant other’s care. This train of thought often leads to isolation, stress, depression, resentment and caregiver burnout, which can seriously damage the relationship. Only by accepting these changes can a spousal caregiver begin to see the importance of self-care for all involved.
Those spouses who work through the painful feelings and eventually embrace the caregiving role are more likely to seek out help. Added support and services benefit both the caregiver and the care recipient. For example, in-home care can actually enable a couple to focus on maintaining and/or strengthening their relationship, since many of the delicate hands-on caregiving duties are delegated 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 a parent (or in-law) 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 the care recipient. Some caregivers bring professionals into their own homes for respite and hands-on help. Others opt to place their loved ones in long-term care settings like assisted living communities, memory care units or nursing homes to ensure all their needs are met.
Regardless of the living arrangement, the care plan and the relationship, I believe that any person who is genuinely interested in another’s well-being and involved in managing their care is considered a caregiver. We can get drawn into our own version of the “mommy wars” if we start comparing caregiving situations and critiquing others’ care decisions. Rather than nit picking, we should be supporting each other as caregivers no matter how different our choices and circumstances may be.
In my experience, every aspect of my involvement, from providing the most intimate personal care to being a part of a caregiving team was important. But, I know that one of my most difficult and vital roles was that of an advocate throughout the many changes my loved ones endured. Advocacy is at the heart of what all family caregivers do. Striving to ensure a loved one’s health and happiness is not easy and comes with some degree of emotional, physical and financial strain. Because of this, all caregivers need and deserve adequate, ongoing support.
Regardless of how you view the situation, you are providing care and you are an advocate. Accepting this label does not demean the person you care for or your relationship with them. Being honest with ourselves about this role helps us adapt to new relationship dynamics, seek out support everywhere we can, and welcome outside assistance. In many ways, delegating some caregiving duties frees up time and energy and allows us to focus once more on being a loved one’s child, spouse, sibling, friend or other relation instead of their sole caregiver. With this realistic approach, both caregivers and care receivers can be supported and respected while maintaining as much of the integrity of their relationship as possible.
So, are you a caregiver? If the title fits, wear it proudly, my friends. Whether or not you are providing hands-on care, if you are doing your best to be an advocate for the vulnerable person or people in your life, you are a caregiver.