Family Care Complications
There is no greater refuge than family. Family members are on the front lines of care. In times of need, family is who we turn to first, and usually, they are the people who remain with us throughout. Our desire and willingness to provide care for the people we know and love, however, doesn’t mean family care isn’t complicated.
Here are three common reasons why providing and receiving family care can be complicated even though caring for and receiving care from someone we love is something many of us would never forego.
(1) “Of course I will, we’re family.”
Family caring for family is seemingly natural. Expected. It’s what love is all about. It’s what we do for people we love. Rarely, if ever, do we explicitly state these responsibilities, rather we internalize them and they become the very reason for our care.
“This is my father-in-law, of course I am going to care for him.”
“They’re my parents, of course I’m going to care for them.”
“I love my sister. She and I shared a life together growing up. I’m going to be there for her.”
We love, therefore, we care, but that doesn’t mean we don’t experience frustrations and challenges typical of all relationships. All relationships involve expectations, and familial care means that we oftentimes care without the expectation (or hope) of reciprocity.
As we accommodate our life to care for an ill family member, the burdens of care can become more pronounced—financial stressors, time demands, changed living arrangements, and work-care conflicts. Because we are family, we care despite these stressors. Over time, however, it is difficult not to experience frustration, burnout, and exhaustion simply because we must re-imagine our relationship with our ill loved one without the expected relational markers that once defined our relationship–shared hobbies, fellow traveler, confidant, cheerleader, admirer, financial provider, early-morning walker, lover, late-night television watcher, conversationalist….
In the midst of the unending needs of care, we must simultaneously rethink our relationship in ways that defy our past experiences without the explicit relational benefits we once received.
(2) “I know you, you know me . . .”
We know the person we care for and they know us. We grew up with them. They were our mothers or fathers or siblings. Relational intimacy is an overwhelming motive for care. A shared family history can also complicate care.
The very person we care for may feel trapped by not feeling comfortable sharing what is happening to their bodies, dreams, and anxieties because of how such disclosures might affect us. What if your mother told you of her desire to stop treatment for her illness? Of course, you’d appreciate her honest disclosure, but at the same time, would you be able to unlearn that knowledge amidst the backdrop of daily car rides to chemotherapy treatment?
Unlike acquaintances that don’t share a family bond, we must negotiate the uneven terrain of caring for a loved ones’ needs while also seeking to maintain a relationship. This relational journey can be very challenging when our care is impacted by our knowledge of the past and our expectations about what our relationship seemingly requires:
“Moms are supposed to be positive. Why is she telling me she’s done with experimental treatments?”
“Dad used to be so financially savvy. Why doesn’t he understand how caring for him is changing my own financial future?”
“I knew my brother’s body would eventually have to pay for his lifestyle. But why am I the one who has to pay for his bad choices?”
The people we care for are vulnerable. They need us. They love us. But can they always authentically and openly share frustrations with us, their primary lifeline to the world? Can they always realistically disclose doubt or helplessness or disappointment in light of everything we are providing them? Similarly, can we always authentically and openly share our frustrations with our vulnerable loved ones? Can we always realistically disclose our doubt or helplessness or disappointment when we know they depend on us for almost everything?
Frustration and disappointment are inevitable experiences of relationships, but these experiences may be even more pronounced for family caregivers and loved ones needing care. The irony is that because we know each other so well, some topics and conversations and feelings will remain silenced because of our desire to maintain our relationships with those we care about most.
(3) “What do you mean I may not understand?”
When we are our loved one’s life line, it’s hard to know (let alone admit) that our care alone may not be enough. Acknowledging that our loved ones may need outlets beyond us may be difficult to accept. Sometimes, despite our willingness to help, our loved ones may need to access and talk to others who are unlike us so they can receive support from…
Someone who has first-hand experience with a particular illness.
Someone who shares a similar diagnosis.
Someone who will not flinch or become embarrassed by what is happening to their body. Someone who will not make judgments about them and their condition.
Someone who will not hold them hostage to their past.
Someone who will not hold them hostage to their loved one’s hopes for the future.
Caregiving is something we do out of love. And it is our very love for the people we care for that can sometimes make family care deeply moving, but also complicated.
My wife and I are members of the sinwdach generation in a sense. Our 54 year old disabled (from birth) daughter was under out personal care at home until 2010. She is mentally and physically impaired, partially paralyzed, confined to a wheelchair, is incontinent, has ESRD requiring dialysis three times a week and currently lives in a retirement facility where we struggle to get the kind of care she must have to survive. She resists any personal care from almost anyone but me (father). My wife’s memory is fading, she has periods of confusion, has vision problems and has lost her sense of taste. We are 78 and are working on plans to provide for our daughter’s future. For now, I provide the minimal care required for my wife. I have been diagnosed with leukemia but currently do not require treatments.In spite of our daughter living in an excellent retirement facility, we are still required to help with her care, manage her personal affairs and shepherd her through multiple hospital events every year. Our costs are high our income is limited. We have excellent legal and professional advisers. In spite of all the excellent help, we feel alone in our daily struggles. We worry that we are making the right decisions
We are thinking of you and your wife. We hope you find some solace in the Unprepared Caregiver community.