Brainwaves

Brain Injury Alliance of Arizona Blog

From Their Perspective: Interview with my Caregiver

Noggin contributor Connor LaPlant sits down with his mom in an interview that explores the realities of becoming a caregiver to a loved one with a brain injury.

What is your personal experience/background with brain injury?

My 13-year-old son suffered a traumatic brain injury in April of 2006 in a dirt bike accident.

In what ways did becoming a caregiver change your life? How did the TBI affect the family in general?

The short answer would be that becoming a caregiver is a totally different life. The long answer would be that I think becoming a caregiver in a brain injury situation changes most aspects of everyone’s life who is closely involved. The survivor of course, friends, relatives, etc., are all affected. But as a caregiver, you feel the weight and enormity of the responsibility you have acquired immediately. It is the result of a life change that simply stops you in your tracks and turns your world upside down in an instant.

 

And, to make matters more stressful, we find ourselves dealing with medical information that many of us are very unfamiliar with while trying to make major life decisions for our loved ones as best we can. In addition, as every brain injury is so different, you never know quite what to expect next. In the beginning, everything is coming at you fast and furious. Then, it often slows to a snail’s pace. And sometimes improvements you prayed for are more bittersweet than joyous. For instance, knowing that my son was becoming more and more aware of what had happened also meant he was also more aware of how his young life had changed and what his challenges were going to be. I hated when I kept hearing we would find a “new normal.” I didn’t want a new normal. I wanted the old normal.

From Their Perspective: Interview with my Caregiver

Noggin contributor Connor LaPlant sits down with his mom in an interview that explores the realities of becoming a caregiver to a loved one with a brain injury.

What is your personal experience/background with brain injury?

My 13-year-old son suffered a traumatic brain injury in April of 2006 in a dirt bike accident.

In what ways did becoming a caregiver change your life? How did the TBI affect the family in general?

The short answer would be that becoming a caregiver is a totally different life. The long answer would be that I think becoming a caregiver in a brain injury situation changes most aspects of everyone’s life who is closely involved. The survivor of course, friends, relatives, etc., are all affected. But as a caregiver, you feel the weight and enormity of the responsibility you have acquired immediately. It is the result of a life change that simply stops you in your tracks and turns your world upside down in an instant.

 

And, to make matters more stressful, we find ourselves dealing with medical information that many of us are very unfamiliar with while trying to make major life decisions for our loved ones as best we can. In addition, as every brain injury is so different, you never know quite what to expect next. In the beginning, everything is coming at you fast and furious. Then, it often slows to a snail’s pace. And sometimes improvements you prayed for are more bittersweet than joyous. For instance, knowing that my son was becoming more and more aware of what had happened also meant he was also more aware of how his young life had changed and what his challenges were going to be. I hated when I kept hearing we would find a “new normal.” I didn’t want a new normal. I wanted the old normal.

What has been the most challenging part of being a caregiver?

For me it was the mental exhaustion. The constant worrying and overthinking everything. The anxiety that comes with anticipation of what needs to be done next and/or what might go wrong. Second guessing just about every decision that needed to be made was daunting. The pressure of trying to do everything right while dealing with the overwhelming feelings of being inept and in over your head was consuming.

How have you kept yourself from experiencing caregiver burnout? What you do for self-care?

I’ve had my meltdowns. Thankfully I had people that held me up at those times. Nobody can do it all on their own. It helps immensely to have someone you trust that steps in and helps, not only with the day-to-day issues, but also to just listen. I can’t stress how important it is for you to take time to care for yourself, clear your head, and just breath. When you get to the point where you have someone you can feel better about leaving your survivor with – even if just for a short walk – take it! You won’t be doing anyone any good if you aren’t rested both physically and mentally.

What do you wish you had known at the start of your caregiver journey that you know now?

It is so important to learn when to let go a little. Sometimes you simply aren’t helping your survivor by helping too much. Let them do things themselves the best they can. Let them try new things. Let them learn. It’s the only way they are going to feel a sense of accomplishment. It’s not your accomplishment that matters. It’s about your survivor’s accomplishments.

Who do you recommend asking for help from when you’re overwhelmed?

Sometimes it is hard to find the right people. Some see your survivor after getting up and about and think they are “all better!” Finding support from family members that truly understand what is involved is a plus but not always a reality. Friends to just listen and not judge. Professional help to do the tough stuff if you can manage/afford to get good help. But for myself, I think it has been other caregivers I’ve met along the way that have been the most helpful. They just immediately “get it” in ways others take much longer to understand.

Any tips for brand-new caregivers?

Don’t look too far back and don’t look too far ahead. At least not at first. Try to stay in the moment as much as possible. It helps to stay focused rather than worrying (too much) over things that might never happen. It’s good to understand the possible hurdles but don’t dwell in a bad place too long. Stay positive. Become aware of when you need to rest (because it can be exhausting) and be gentle with yourself. There are some things you can change, some things you can set limits on, and still some things you just have to roll with. The best we can do is all we can do.

What are some hobbies and personal interests you like to utilize for self-care?

Reading, listening to music, photography, hiking/walking, and I think maybe taking up meditation might be a good thing!

Anything else you would like to share?

I’ve adjusted somewhat to that “new normal” idea. Mostly because life is always changing and I find all kinds of new things that need “normalizing” most days. More than anything, as a caregiver, what I’d really like to see is the pre-conception of a brain injury survivor along with the stigma of having a brain injury change for the better. Survivors have just as much–if not more–to contribute positively to society if given the chance.

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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