Building Community Bonds as a Caregiver

Page Melton Ivie, Chair of the Brain Injury Association of America Board of Directors, has been a caregiver for more than 20 years. This National Family Caregivers Month, she reflects on how caregivers can alleviate feelings of loneliness or isolation and find community among other caregivers. “Meeting another caregiver is like meeting a friend – someone to whom you can instantly relate because no matter your backgrounds, you are on a similar life path,” she says. Read on to learn more about her experience as a caregiver and the support system she has found among friends, loved ones, and fellow caregivers.

Q. Can you start by providing a little bit of background on your experience as a caregiver?

A. In 2003, my brilliant political reporter husband, Robert Melton, had a serious anoxic brain injury from loss of oxygen. He was left with very little memory and other cognitive challenges but has progressed to the point that he can live near us in a supported living environment. I’m his guardian and provide for his medical care, help with his activities of daily living, and we’re best friends! Our daughters Nell and Hopie were 18 months and 3 years old when his injury happened, so caregiving is all our girls have ever known.

Q. How does your life change when you become a caregiver?

A. For a long time, I thought of our lives as “before the brain injury” and “after the brain injury.” It’s been so long since Robert’s injury, and our girls went from being toddlers to grown women, that it really is just our lives now. We’ve got it down for the most part, but caregivers navigate heavy financial, physical, and emotional challenges while keeping their primary focus on the survivor. That’s a constant theme with the many caregivers I meet: before you think about spending money, scheduling a holiday or a business trip, or even figuring out what you’re doing on a Saturday, you need a caregiving plan. One benefit, though, is learning to tap a deep well of patience. I’ve never been a patient person, but when I’m with Robert there’s no rushing. I need to slow down and listen and pay attention to everything around us, and I can see now that’s been a great gift.

Q. What are some of the challenges that come with caring for someone with a chronic illness?

A. We probably all spend a lot of time worrying about things we can’t control – it’s one of my flaws – and it’s critical to understand that there truly is no controlling a chronic condition. The best we can do is try to manage it and learn as much as possible along the way. I focus on ensuring Robert’s safety and health a day at a time and thinking through his care as we get older. A challenge is the unknown: we’re still learning that brain injuries can have varying and long-ranging effects on health. If you’re a caregiver for a long stretch – maybe even the rest of your life – you’re thinking about the wild card that brain injuries can be: how else can it impact a person’s physical and cognitive health and will there be resources to help with that?

It took me a long time to grasp that caregivers need to stay healthy. Here’s my confession: I didn’t see a primary care doctor for years because Robert had so many appointments and I rationalized that I couldn’t miss any more work than I already had. I found a primary care doc – he actually sees Robert as well – who insists I follow through with blood work and appointments because if I wasn’t healthy, then Robert couldn’t stay healthy. My sister Pem gently reminds me too! I still haven’t figured out the middle-of-the-night worrying, though, and I meet so many caregivers who look exhausted. Easier said than done, I know, but that’s part of the responsibility: holding on to your sanity and well-being so you can go the distance as a caregiver.

Q. A report from the National Family Caregivers Alliance reports that between 40 and 70 percent of caregivers have clinically significant symptoms of depression. What are some steps that caregivers can take to mitigate or alleviate these symptoms?

A. After Robert stabilized from his injury, I went to a counselor to figure out how to keep going for Robert and my girls. I was too proud to ask for help, but talking to her was a great outlet and she encouraged me to ask for specific kinds of help when I needed it. Early on, my dad saw I was overwhelmed and would take Robert to therapy or to breakfast – just enough to give me a break or more time with the girls. Robert’s brother Will lived two hours away, but would come down and help around the house, visit with the girls, and check on Robert. It took a lot for me to “allow” that help, but it ended up being good for Robert too. Now that we live in St. Louis, my husband Allan sometimes does the Target run with Robert or we’ll meet our friends Susan or Lisa for lunch or to celebrate a holiday. Those little breaks help Robert maintain relationships beyond just me and gives our friends a window into our lives, and there is always some life-saving laughter involved.

People want to help and they often don’t know what to suggest, so it’s OK to have some small manageable ideas for them.

Q. Caregiving responsibilities can have an effect on the caregiver’s social life and friendships, leading to feelings of isolation and loneliness. What resources are there for caregivers who are looking for connection and social interaction?

A. I’m a huge fan of support groups. Talking to other caregivers and survivors can put your own path into perspective and I always come away being very grateful for all the love and support we’ve had.

I recently attended the Brain Injury Association of Missouri’s Survivor and Family Seminar, one of my favorite events each fall. People were making connections everywhere, laughing about specific challenges and sharing ideas for how to secure benefits or navigate health care. Most states have a brain injury association or chapter, many of them connected to BIAA, that can provide advice on support groups, educational and social outings. You can look for those groups, check www.biausa.org, or call BIAA’s National Brain Injury Information Center at 800-444-6443 for resources in your state and connect instantly with a community.

BIAA offers the Carolyn Rocchio Caregivers Series, which is free to caregivers. Carolyn’s story of caring for her son with a brain injury is inspirational that continued with her support for a caregiver series at BIAA. I had a long talk with her in 2020 and it reminded me again that our caregiving community bonds by sharing the same challenges, opportunities, highs, and lows.

Q. What has your experience been with meeting other caregivers through BIAA? What sort of relationships have you built?

A. Meeting another caregiver is like meeting a friend – someone to whom you can instantly relate because no matter your backgrounds, you are on a similar life path. I called the Brain Injury Association of Virginia early on and found not only support and help with Robert’s care, but a great outlet for meeting other caregivers. When we moved to St. Louis, the Brain Injury Association of Missouri was one of my first calls. Both of our girls have helped raise money for those state groups and have met other children thrust in caregiving roles, all of which revealed a great compassion that Hopie and Nell have from loving their dad.

In Missouri, we met caregiver Kelly, who also fosters dogs and connected us with our beloved first dog Sandy. Ellen and I worked on a Missouri BIA golf tournament together and became fast friends: with her husband and Robert, we created a “Robert’s Rascals” bowling team one year for another fundraiser, though we laughed so hard we didn’t do so well on the bowling! At the Family and Survivor event in St. Louis, I met Colin’s mother and sister, who had “ColinStrong” bracelets and t-shirts, which was a cool way of showing their pride.

Participating in BIAA’s Awareness Days on Capitol Hill creates more connections with families from all over. I love working with caregivers and survivors who want to help with advocacy, as their powerful stories and experiences can educate legislators and policy makers. And I have made some wonderful connections meeting with, and speaking to, families who support BIAA’s work. These are some selfless people: they have challenges in their lives as caregivers but are generous enough to share what they have to help others. That’s a hero, to me.

Q. What strategies have worked well for you when you’ve felt lonely or isolated since becoming a caregiver?

A. Remembering that we are not alone. The Rosalyn Carter Institute for Caregivers estimates that some 105 million Americans are caregivers for aging, ill or disabled children, spouses, siblings, and friends. Caregivers for brain injury survivors are in that group, but there are lots of folk providing care all around us. It’s good we have November as a month to reflect on caregiving but it’s a daily condition for so many people that we need to talk about it all year long and be creative in ways we can support each other.

So many caregivers are pure inspiration. My niece Kate and her husband Ned are caring for a young son with an acquired brain injury. I’m staggered by the optimism, humor, and love they bring to their care and pull strength from them. Recently I saw a mom with her 23-year-old daughter, also with an acquired brain injury. I’ll never forget the way Pam cradled her daughter’s face to calm her down. Caregivers really shine with the pure love they show in the big and small moments, and I think about that whenever I feel isolated.

Q. What advice would you share with someone who is maybe new to being a caregiver, or struggling with feeling isolated or disconnected while caring for a loved one?

A. Ask for help and walk toward people who will allow you to express your fear and grief. Every single time I’ve been vulnerable with a friend or family member, I’ve felt better, less alone, and oftentimes, laughing by the end. Love can really come through when you share a struggle with someone. So many people have empathy and want to help, but they may feel like they don’t know what to offer. As I said, the support groups are amazing and in fact, I just joined a new one because I needed a refresher. BIAA can help and these are wonderful opportunities to share resources and ideas or to remind yourself you are not alone.

A few years into Robert’s injury, I got involved in advocacy for brain injury in the Virgina legislature, again through the state affiliate. The girls and I met with legislators and helped put a face on Robert’s injury for policy makers and that work led to my eventual position on the national BIAA board. It really helped me personally to channel my fear and grief into something constructive that I could control and to learn about changes in policy that could help families and survivors. Anyone can send an email or a text to a state legislator or member of Congress to remind them of the great challenges we face in the brain injury community. It helps to feel part of a larger cause and our brain injury community is stronger because of the committed caregivers and survivors who motivate us every day.