“There is research out there but what we’re not seeing is interventions to help. We know the implications of the negative impacts we’re seeing, but what do we do with it then?”

Conversations with a Caregiver

Meet Regan Irion

By Christina Eichelkraut

Eight years ago, Regan Irion’s mother, Shari, became a traumatic brain injury, or TBI, survivor when she was hit by a truck. The accident was so severe Shari lost the vast majority of her basic living skills. In an instant, she was unable to move, speak or care for herself.

Like so many loved ones of a TBI survivor, Irion – along with her dad and four older siblings – found themselves unexpectedly thrust into the role of caregivers. Though Shari was hospitalized and in assisted care nursing facilities for quite some time after the accident, her eventual release home did not change the fact she required essentially full-time assistance.

“At the time of the accident, it was very involved, twenty-four seven,” Irion said. “Up every two hours to turn her in the bed, trying to keep up with her skin integrity, all of it.”

The tight-knit family members learned to clothe Shari, feed her, communicate with her, and transport her to and from physician and therapist appointments. A constant background hum of the daily care was the unrelenting need to manage the byzantine bureaucratic morass of insurers, doctors, and therapists.

Fortunately, the Irion family were able to handle the challenges as a team.

“My family is just naturally very close and very involved, so we were all pretty intensely involved with her care,” said Irion. “Myself and my siblings all got together and got certified and worked together as her caregivers, and still do.”

Though Shari spent over a year in hospitals full time and in a skilled nursing facility, the accident was nevertheless a jarring disruption on everyone’s lives.

Shari’s accident happened when Irion was 18 years old and preparing to head off to Northern Arizona University for her bachelor’s degree in psychology. Caring for her mom became a second focal point of Irion’s college years as she drove home every weekend to help with caregiving. Two of her siblings were living out of state when the accident occurred but immediately moved back home to help. Her father, a teacher, took a year off of work. And once Irion did graduate, she moved back home to be a full-time caregiver for the next two years before starting her doctoral degree.

“It took us eight years as a family to hire outside help because we were able to be there for her,” Irion said. “But then after a while it just gets to a point where it’s like, ‘OK, I need some semblance of self still; I need to return to some aspect of my life that is separate from my life as a caregiver.'”

Another reason for the family’s hesitancy in hiring outside help was the fact they were each uniquely situated to care for Shari. Irion’s oldest sister is an occupational therapist, her brother is a physical therapist and Irion’s other sister is a speech therapist. Their collective skills and knowledge were a huge advantage for Shari since her family had a lot of understanding most caregivers may not have.

“We had the underlying knowledge that we had to advocate for this, or that she should be getting speech [therapy] every week,” Irion said. “We knew what questions to ask and I think that really helped with her recovery, honestly.”

There was a sharp irony to Shari’s disabled state. She had spent her life as an adaptive physical education teacher working with children with disabilities. Growing up and seeing Shari do that work is what inspired her children to choose their own respective careers.

“We all got into integrated health care fields because of her,” Irion said.

Now, it was Shari who needed support adapting to a new life.

Despite their useful professional skill sets, as Shari’s condition improved and the years progressed, everyone in the family began to feel the collective wear and strain of being a caregiver. Their lives were all, to one degree or another, put on hold. Decisions such as having children or, in Irion’s case, attending graduate school and building a career, were delayed.

At first, the family took turns between caregiving for Shari and living their own lives. One sibling and their father would agree to be a primary caregiver for two years while the other siblings focused on their own personal goals and dreams, having children or focusing on careers or other life ambitions.

Finally, however, they got some help. Today, Shari is much improved, in an ambulatory wheelchair and able to communicate to a degree. She has regained some mobility. But Shari still requires assistance, and likely always will.

The Emotional and Practical Complexities of Being a Loving Caregiver

As a caregiver, one is forced to grapple with two competing truths: usually, the caregiver does the work by choice, but it is simultaneously true the caregiver is still in a situation that no one – either the caregiver or the care recipient – would ever choose to be in at all.

“As a family caregiver we do it because we want to, and sometimes we do it because we have to,” Irion said. “But a lot of times it’s because we want to be there for our family member, but you’re really putting your personal life on the backburner, and you’re showing up in all the ways that you would show up for yourself for this other person.”

Adding to the complexity of caregiving are the emotional and financial fallouts of caregiving. There is both a purely practical aspect, such as finding accommodating work (since one’s own bills and obligations do not cease to exist upon becoming a caregiver), and the emotional and psychological aspect due to the constant, low-level stress.

Not to mention, as Irion points out, the drastic personality or capability changes brain injury has on the survivor. Frequently, a brain injury survivor seems like a totally different person than they were prior to the injury, creating a circumstance that Irion described as “actively grieving the person that is in front of you.”

Adding to the strain, a caregiver’s schedule frequently isolates them from many of the very activities that would address the resulting negative feelings, such as socializing with friends or deeply engaging with a hobby or class for self-growth.

“There can be this sense of, ‘When am I going to get back to or have the ability to pour back into myself?'” Irion said. “A lot of those days, at the end of the day, you’re just so tired, you’ve given everything and there’s nothing left to have for yourself.”

This is where another hidden complication of caregiving lies. Many well-intentioned social workers, friends, family members and others make seemingly plausible recommendations. Just meditate for 10 minutes while the care recipient is asleep. Stretch. Do five minutes of yoga each morning. Keep a gratitude journal. And of course, make healthy food choices.

The fact is most caregivers are focused on the next smallest increment of their day to get through it. And, during moments of respite, the only thing many caregivers can do – whether mentally, physically, or both – is quite literally nothing. Many caregivers speak of just having a good cry, sometimes voluntary, other times not, for emotional release when they do unexpectedly find themselves with free time. The truth is the very idea of a five-minute yoga session within the context of a full caregiving day can feel like a totally Herculean task and, even worse, squandering precious rest.

“They say take it one day at a time but, as a caregiver, it can really be one minute at a time,” Irion said. “And I think the emotional aspect for non-family members and family member caregivers is you are showing up emotionally and physically for this person and it’s almost like you’re left drained at the end of the day.”

Over a sustained period of time, that can take a toll on even the most compassionate, empathetic and resilient caregiver, even if the caregiver is family. Eventually, being in this state for a prolonged period can lead to a sense of helplessness that Irion said she noticed was particularly pervasive amongst long-term caregivers.

From Impacts to Interventions

When Irion decided to return to NAU to earn her doctoral degree in clinical psychology, she found a way to meld her personal insights and experience with her love of research.

“I’ve seen the impacts on caregivers through myself, through my siblings, my dad and through support groups we’ve been a part of,” Irion said. “It just all amalgamated into where I am at this moment.”

Irion’s doctoral dissertation is a deep exploration of the impact caregiving for someone with a chronic condition has on the caregiver but, perhaps more importantly, is also a search for what practices and interventions can make the lives of caregivers better.

“There is research out there but what we’re not seeing is interventions to help,” Irion said. “We know the implications of the negative impacts we’re seeing, but what do we do with it then?”

Irion’s focus began to crystallize on finding an answer to that question, completing a thought so much research had started but left unfinished.

“So, I was really intrigued that we’re talking about it, about the impact of caregivers and how valuable it is as a role, but from what I could find there’s not much that’s actively working on improving the lives of our caregivers,” said Irion.

Irion wants to go beyond the traditional external support structures – state advocacy organizations like BIAAZ, caregiver resource groups like The Family Caregiver Alliance, various support groups, social workers and safety net programs – and create solutions for the daily physical and emotional lives of caregivers.

“There’s amazing on-the-ground resources,” Irion said. “But my research is looking specifically at the underlying mechanisms of everyday behaviors, everyday characteristics, intrinsic values, intrinsic personality characteristics that we can help develop to get ourselves through this role,” Irion said.

Her research is quantitative, not qualitative, meaning it focuses on very specific and measurable metrics and information. Irion is examining symptoms of depression, hopelessness, and a few factors that indicate physical issues of stress such as an increase in getting a cold or migraines.

Irion remains focused on the potential positive impacts of her research.

“Ultimately it would just result in a better quality of life for caregivers,” Irion said.

She hopes to see caregivers with “less stress, less negative outcomes in the long term so that they’re easier able to show up in their sometimes non-negotiable roles, and show up for themselves and actually use self-care in a way that’s not put on a face mask.”

Her ideal scenario would be an accessible workshop or similar environment in which she can teach long-term caregivers emotional and psychological tools to protect themselves, with real-life examples and practical ways to implement protective measures.

However, Irion is not naive that some of the issues caregivers face will require far more than a workshop to address.

“There are systemic barriers that are beyond my control, beyond the control of anyone in this system,” Irion said. “At the end of the day we all have to continue to navigate the red tape of insurance policies, of trying to receive government assistance and financial assistance.”

Caregivers know the constant shuffle of having multiple, often competing, priorities, of choosing between the type or frequency of medical appointments because of funding or coverage limitations. A care recipient may need two different types of therapy or a weekly appointment, but ultimately that doesn’t mean its what’s actually available to them. When possible, it’s frequently caregivers who step in to fill the gaps.

For example, it may be medically recommended that a care recipient get physical therapy three times a week, but an insurer only covers one session per week. Often, it’s the caregiver that learns how to coach and guide and is left to fill in the session gaps.

Though Irion’s research has impacted her own caregiving and attitude, she is still, after all, an imperfect human just like everyone else. She still struggles at times with adopting behaviors and methods that could potentially mitigate the negative impacts of caregiving.

“I need to practice what I preach,” Irion said, laughing.

Still, she is more aware of how the energy she expends will impact her own critical thinking skills and emotional well being. Talking about her research with her family has helped there to be a small shift in them prioritizing themselves a bit more, at least to the extent they are able to.

It’s Still a Loving Sacrifice

That said, there are of course pockets of joy, too.

“There are so many moments of joy in being a caregiver I don’t want to neglect that,” Irion said.

Caregiving is, ultimately, an act of loving sacrifice, after all. It can be beautiful and deeply inspiring to witness how the human body and spirit can heal and recover. Often, as recovery journeys progress, the caregiving load lightens, and caregivers can begin to regain their own life to some degree.

It is a challenging part of life but doesn’t have to be as hard on the caregivers as it is. Irion’s research sets out to prove that.

ABOUT BRAIN INJURY ASSOCIATION OF ARIZONA

The Brain Injury Association of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.