BRAIN WAVES

Brain Injury Alliance of Arizona Blog

Caring for the Caregiver

Several years ago, author and caregiver Abby Maslin and her family adopted the Icelandic tradition of exchanging books on Christmas Eve, a gesture that goes beyond filling bookshelves and nostalgic hearts. “It’s a wonderful reflection to see what people are thinking about you and what they choose for you,” says Maslin.

Caring for the Caregiver

by Ellen Fortini*

Several years ago, author and caregiver Abby Maslin and her family adopted the Icelandic tradition of exchanging books on Christmas Eve, a gesture that goes beyond filling bookshelves and nostalgic hearts. “It’s a wonderful reflection to see what people are thinking about you and what they choose for you,” says Maslin. “But it is also important for people taking care of a loved one with a brain injury, because the feelings of being misunderstood are so prevalent and so strong. So to have yourself reflected in a book like that means something. It’s such an act of caring, for the caregiver or the brain injury survivor.”

When Abby’s husband TC was assaulted and robbed near the couple’s home in Washington, DC, in August 2012, he suffered injuries that left him fighting for his life, including a brain injury resulting in aphasia. The couple’s story of their love, marriage, and the journey to TC’s recovery was documented in Abby’s 2019 memoir Love You Hard. In it, she shares the story of her husband’s health and progress with an honest perspective of caregiving — its triumphs, trials, and tribulations.

“It’s my duty, my ambitious wish, to return [TC’s former life] to him – in whatever small and modest form I can,” writes Abby as she sets up what she calls Brain School, designed help TC get the most from his therapy sessions, but also to give Abby herself the chance to contribute to his recovery in a way that felt productive to her. 

“It’s my duty, my ambitious wish, to return [TC’s former life] to him – in whatever small and modest form I can,” writes Abby as she sets up what she calls Brain School, designed help TC get the most from his therapy sessions, but also to give Abby herself the chance to contribute to his recovery in a way that felt productive to her.   

Now eight years later, TC and Abby and their children, Jack 10, and Rosalie, 4, are still living in Capitol Hill, where Abby teaches third grade and TC is back at work an energy analyst. And it is from their historic red-brick home that Abby and TC will host holiday meals this season for their family, including Abby’s mother, Kate, and sister, Bethany. “Hosting is a symbol and a gesture that we have arrived in a place where we can begin to take care of others again.”

The couple’s first Thanksgiving after TC was released from the hospital was spent at the couple’s rented beach home in southern Maryland, a decision Abby felt confident in making along with the choice to move out of the city for those early months of TC’s rehabilitation. “I was determined to make everybody think I had a handle on everything,” said Abby in an interview with the Brain Injury Alliance of Arizona prior to the couple’s talk Lightening the Load – Self-Care and Wellness Survival Tools for the Holidays, scheduled for Saturday, November 21. “I really wanted to control the holidays and I think it’s very natural for caregivers because there is so much that is not within our control.”

“It was appealing to do Thanksgiving and Christmas on our terms, even if it meant more work,” says Abby, who was born and raised in Phoenix before her family relocated to Maryland. She says that her extended family didn’t really understand at first why she would want the burden of hosting, but for Abby, being in a place where she could manage the environment and where TC had access to things he may need was an easy trade-off for shouldering the additional responsibility of the meal.

In Love You Hard, Abby, a vegetarian, recollects plucking remnant feathers from the turkey’s skin before TC brined it. With Thanksgiving being her husband’s favorite holiday, Abby found it essential to maintain traditions not only for TC, but also for their then-two-year-old son Jack to be able to develop a familiarity of routines associated with the holiday season.

But she says it’s also important for caregivers to recognize that others want to assist, and for caregivers to allow themselves to let others manage certain aspects of the day. “I was so grateful for the people who showed up to do the things I could have counted on TC to do, like the family friend who came to assemble a bicycle for Jack the day before Christmas.” These small gestures, Abby insists, helped satisfy her longing to be cared for herself. “It meant a lot when people could see those moments clearly and then seamlessly step into them without a sense of judgment about how I was doing things or how they thought it should go.”

As time went on, Abby became more adept in identifying in others the skills and abilities they had to help her with certain tasks and responsibilities. As it turned out, these friends and family members were more than happy to contribute their talents and time. But it wasn’t always easy for Abby to ask, especially early on in her caregiving journey. “Most caregivers are resistant to accepting the help. But as I began to look at people’s strengths and what they could offer – and they couldn’t offer everything that I might want from them – but I realized that if we can figure out how the people in our lives can be helpful, we can use them to our advantage in our healing.”

Abby notes that even survivors want to be involved in the caregiving and participate in ways that they can. She initially resisted allowing TC to help prepare the turkey until she realized that his small way of taking part – brining, but also just being present – contributed to the experience of maintaining the tradition. “There were moments when I needed to surrender to the help and just allow people to step in and that was hard and it’s still hard. It’s easier said than done for a lot of caregivers and survivors, too.”

Accepting help also enabled Abby to accept what had happened. “I think when we’re fighting help, we’re in denial of the thing that has impacted us. So, the more I came to terms with the event itself and TC’s injury, the easier it got to accept help, too.”

In an already difficult pandemic year and with Covid-19 cases on the rise again across the country, caregivers are balancing more than just their loved ones’ needs. Abby’s concern for fellow carers this year lies in the layer of complexity that decreased networks of support add, when people’s varying comfort levels with the virus may prevent them from reaching out and participating.

But for those who are new to caregiving and may be in a place where they can ask for help, Abby advises self-care in the form of honoring the sense of control they might be feeling. “We tend to think of control as a negative thing but it is a very natural reaction to post-traumatic stress. So if we allow that to be the foundation of a dialogue we have with family members, we can find the words for it, such as: ‘It’s really important for me that we do it this way, right now, because this is how I am feeling. My experience is that this is something that is within my control.’ When we can phrase our emotions in a way that directly aligns with the cause of those emotions it is easier for people to understand and make sacrifices or compromises around what they want, too.”

She also encourages family members to defer to their loved ones with a brain injury. “That’s a small thing you can do for someone who’s on a difficult life path or journey to healing. This time of the year is so emotionally charged with people trying to feel a certain way, whether it’s connecting with a feeling we had as a child or in our adult life, we’re all just trying to get to one emotional place.” An objective, she says, that is a metaphor for the brain-injury journey itself.

“It’s the challenge of getting to those feelings of joy and peace and happiness you knew in your former life, but in a new way,” says Abby. “It’s directly indicative of what’s happening in the brain as the brain rewires itself, for the survivor and the caregiver. So the holidays are like the microcosm of that experience.” 

“It’s the challenge of getting to those feelings of joy and peace and happiness you knew in your former life, but in a new way,” says Abby. “It’s directly indicative of what’s happening in the brain as the brain rewires itself, for the survivor and the caregiver. So the holidays are like the microcosm of that experience.” 

“It’s the challenge of getting to those feelings of joy and peace and happiness you knew in your former life, but in a new way,” says Abby. “It’s directly indicative of what’s happening in the brain as the brain rewires itself, for the survivor and the caregiver. So the holidays are like the microcosm of that experience.” 

Neuroplasticity, the ability of the brain to change and form new neural pathways, has been at the root of the Maslins’ success in TC’s recovery and Abby says it is a topic that seems to come up daily in their lives. “It gives me the greatest hope, because in this moment of us being divided as a country and how we’re going to go forward, the idea that we can change – our minds and beliefs and habits – there’s nothing more inspiring than the fact that change is not only possible but that we have the control to make it happen.”

For Abby herself, reconnecting to her yoga community was a significant step in her own recovery from the traumatic effects of the event, not just for the enjoyment of the practice, but also for the physiological benefits that she had previously been unaware of. She says that when a person is in a state of fight or flight, with cortisol rushing through their body, the internal systems are disrupted, and caregivers often end up in that state for a really long time – if not forever – due to unrelenting stress.

In fact, during TC’s recovery, Abby experienced a state of depression that led to all her sensory experiences feeling deadened. Taking part in a yoga-teaching program in Greece enabled her to “breathe again” and she learned to control her emotional response to events. While she and her fellow trainees learned about the benefits, Abby was experiencing and applying them in real time: restoring her internal systems and re-activating her senses of feeling, tasting, smelling, and touching. “I was truly alive and that is something caregivers need so badly – they need to be attuned to their own senses,” she says.

Abby is also motivated to encourage other caregivers shed the antiquated idea of their role. “This old, tired narrative of nobility and selflessness, I almost drowned in that. I want to continue speaking to these communities and saying the words that will allow people to be kind to themselves and forgive themselves of whatever they think they might be guilty of. There is so much shame that gets dumped on women and caregivers and we have to put our hands out and say no. Writing the book was a huge step in that I chose to share difficult, awkward, personal things because I knew it would be a liberation to other people.”

That level of grace and goodwill also shows itself in Abby’s personal work in antiracism and social justice, which she says is her second phase of healing from the event. “In order to do that, I feel like my responsibility is to help improve the lives of people who don’t look like me.”

And Abby isn’t wasting any time making that happen. “One of the gifts of life from this difficult chapter is being able to see more clearly what I do have, and I have a voice, a body, and the opportunity to speak with people and I don’t want to waste any of that. As difficult as our chapter has been, I am an incredibly privileged person, and I don’t want to waste that. I want to use every ounce of it for what I can.”

The Maslins will share a dual perspective on navigating the holidays for survivors and caregivers in a special Zoom talk on Saturday, November 21, presented by BIAAZ. In a preview, Abby tells us, “The duality of that will be helpful because oftentimes, as in my book, where it was from my perspective, you don’t always get what it’s like for the other person. So I hope that people who attend will get a sense of what kind of communication it takes in a relationship – a marriage or partnership or friendship – to navigate the holidays as a team.”

*Ellen Fortini is a globetrotting writer, editor, and public relations professional. She currently resides in Las Vegas, Nevada.

ABOUT BRAIN INJURY ALLIANCE OF ARIZONA

The Brain Injury Alliance 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.

The Brain Injury Alliance of Arizona:

  • Works with Congressional Brain Injury Task Force
  • Houses Arizona Brain Health Resource Center
  • Hosts Statewide Opioid Use Disorder & Cognitive Impairment Workgroup
  • Has Statewide Opioid Use Disorder & Cognitive Impairment Response team with peer support, training, and family wraparound services
  • Facilitates Brain Health Advisory Council
  • Manages statewide Neuro Info-Line: 888-500-9165

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