Joanne Cohen, vice president of the Brain Injury Hope Foundation, says caregivers also face grief. For more information on grief and brain injuries, please see our two blogs on the subject. Gaining Your Power Back with Counseling after Brain Injury and The Benefits of Counseling after Brain Injury.

By Eliza Marie Somers

A familiar phrase – Put on your oxygen mask first before assisting others – symbolizes the approach caregivers must take in order to maintain a proper balance in their lives as they take care for their loved ones. And it’s a motto to take seriously or face burnout.   

“Early on, I did it all,” said Charlene Hayward, who was a panelist for the Brain Injury Hope Foundation’s September 2020 Survivor Series on caregivers. “One day our daughter said, ‘Mom, if something happened to you, what is going to happen to Dad? You have to take care of yourself because we can’t take care of him.’”

This was a wakeup call for Hayward, whose husband suffered a stroke five years ago. “At first I thought taking care of myself was taking time away from caring for my husband, but it’s not. I now keep a journal. I work out. I do puzzles. I read the paper or a book. It doesn’t have to be a lot, but it has to be something.”

Charlene Hayward says she first thought that taking care of herself was taking away from caring for her husband.

Joining Hayward via Zoom for the “Caregiver Panel: Strategies to Support Brain Injury Survivors and Yourself” were Len Finegold (husband of a BI survivor), Andrea Isaacs (dated a BI survivor) and Kristina Martinez (oversaw caregiver groups for military families).

“When we were first faced with this, I thought I had to take care of my wife nonstop and make all the decisions,” Finegold said. “But I learned that I needed to include her and give her options. Imagine asking her to go see a Rambo movie with her being sensitive to sound. … It was OK for me to go to the theater by myself. It was OK for me to go on a bike ride by myself. I had to remember to ask.”

Isaacs recognized she had to maintain her other relationships while dating a BI survivor. “We both love being in the mountains, eating good food and cooking, but I realized that I needed MY friends,” she said. “I was giving a lot of my free time to this new relationship and found that I had to maintain my other friendships.”

Andrea Isaacs says that maintaining her relationships with others was necessary for her well-being.

Martinez praised the panelists for taking time to fulfill their needs. “It’s great that Len honored his wife when she said no, and he still engaged in those activities. Early on, caregivers tend to turn down those opportunities.”

Martinez pointed to research that revealed the health risks caregivers face.  “A caregiver’s health actually deteriorates overtime,” she said. “They spend so much time being there for their loved ones that they delay going to the doctor to take care of that pain in their knee or back or chest. You have to make sure that you are filling up your cup. You can’t pour from an empty cup.” 

Turning to counseling or finding caregiver groups to help process the burdens of taking care of someone who is disabled is another great way of fulfilling self-care.

“A support system is critical for caregivers,” Martinez explained. “You can feel shame and guilt, and counseling can help you process those changes. Counseling can be very beneficial. Also know that sometimes you have to try several therapists to find the right fit.”

For more on counseling as a mTBI survivor, please read our blogs:

Hayward and her husband belong to a stroke support group at St. Anthony Hospital in Lakewood, Colorado. “We will split up into groups of caregivers and survivors for an hour,” she explained. “We get to talk to other caregivers, and it gives us a chance to vent. It’s very open. And if we ever need to talk to someone, we can call one another. It’s nice to have a support group in the background.” 

The time immediately after an accident or a stroke tends to be a whirlwind of doctors, nurses, therapists and emotions.

“I don’t remember when I realized this new opportunity as a caregiver or when it sunk in,” Hayward said. “I was kind of sad. This was not what we planned, but death do us part for better or worse, sickness and in health.”

As a facilitator for military caregivers, Martinez has seen many marriages end in divorce after injuries, leaving family members to take care of the returning soldiers. So staying with your partner and taking on the role of caregiver is no easy task. 

“Our relationship is fueled by love,” Finegold said. “There are days I don’t think about her TBI, and then I see the nuances, and I have to do something special for her. It sounds like I’m a superhero, but I’m not. There are times I’m insensitive. But you are in for a penny; you are in for a pound. … There are roadblocks, but you overcome them by doing them together. … Take a deep breath and try to understand their perspective; see it from their point of view.”

Len Finegold says facing roadblocks together has helped him and his wife.

It was only two dates into their relationship before Isaacs’ boyfriend was in a car accident and suffered a mTBI. She said her first thoughts were, “Do I care enough about this person to be in this relationship? It was hard to know what this looked like. I couldn’t define where the relationship would go. I let love radiate, and I didn’t have an expectations. 

“It was a lot of self-processing. Not having expectations in the relationship was a spiritual lesson for me. It helped me let go of expectations, so people can be who they really are.” 

Having patience with yourself and your loved one is a key component in the course of taking care of a loved one. 

“One of the challenges I had was slowing down,” Isaacs said. “That was a big lesson I had to learn, especially when I talk. He could not take in all the data or the sound level. By slowing down it gave me time to be more introspective for a change. And when I changed the subject I learned it was useful for me to say ‘new topic.’ Now I value slowing down and being in the present. It was beautiful. I got to be the person who benefited from his many gifts, to access those parts of him and myself. It made it more precious.” 

Another element of caregiving is asking questions instead of assuming someone’s wants and needs.

Isaacs described a time when she encouraged her boyfriend to play guitar with some friends to help him become engaged, however, the experience was too challenging, and it took him two weeks to recover from the experience.

Finding the right balance of taking care of yourself and your loved one is an ongoing lesson, Finegold said.

“There’s something to be said for having balance,” he said. “If I spend too much time on you and not on me, I can burn out. And there will be those days when your partner really needs your support that day. It’s a balancing act. Sure there will be good days and bad days, but don’t take it personally. That’s when you go for that extra walk.”  

Being a caregiver is stressful, but it does have its rewards, and as Martinez said there are lessons to learn and blessing in the struggles. 

“The reward I get is that I get to help someone,” Hayward said. “This gives me a chance to do something good. It makes me feel good at the end of the day.”

Some helpful resources