In a recent conversation with my fellow TBI survivors, we were discussing ways that people can reach out and help us. The first few months after a concussion or traumatic brain injury (TBI) are critical. I know for myself personally, when I look back at the first six months I can see how completely dazed and confused I was.
However, the recovery from a TBI can last months to years. Every single brain injury is unique, and will not only take different recovery times, but will also present different symptoms depending on where the brain was injured. There is no "magic formula" and I know of those with severe TBI who fully recovered in a few years, while others with a mild TBI are still recovering many years later.
A TBI is much like a fingerprint or snowflake, no two are alike.
In addition, many "outsiders" have no idea what kind of hell we are going through. They hear the word "concussion" and think it's not big deal. Or they hear the term "traumatic brain injury" and can only imagine the most severe (think coma, bed ridden, not able to speak or walk) and figure if we're walking and talking then we must be doing "OK." Neither of these scenarios are correct, and I beg of you to try to understand what we're going through. At the very least, I offer you some suggestions on how to help us cope with this stressful and frustrating time of our life.
- Don't ask them what they need. We may not actually know "what" we need. Or we may feel embarrassed and don't want to be a burden or seem needy. Don't ask us if we'd like you to come over. We'll likely say no, but really mean yes. Just show up at our door with open arms.
Bring over a meal (or three). We are likely suffering from a great deal of fatigue, headaches, and cognitive problems. We might not have the ability to cook for ourselves, or even go to the grocery store to buy the bare necessities. For myself personally, I couldn't figure out how to use my microwave or oven for several days. A warm, home cooked meal would have been greatly appreciated! Bring them groceries or basic household supplies. As much as we won't admit it, our finances are going to be really, really tight. Going to the grocery store may actually be a financial burden as much as it is a physical one. No one wants to admit when they're struggling, and just showing up with some milk, toilet paper, and chocolate chip cookies will definitely bring joy and relief. Offer to clean their house. Many of us suffer with vertigo, fatigue, and likely physical injuries from our accident. Simple tasks like taking out the garbage, doing laundry, and vacuuming can be daunting. Don't judge the condition of their home, and don't make them feel like they are doing a poor job of housekeeping, simply enter their home and start doing it for them. Take it a step further, and make them a class of ice water, tuck them into bed for a nap, and clean away while they rest! Offer to drive them to their doctor appointments. I was fortunate that I was able to drive after my accident, but many are not. I also encourage you to go one step further, and ask if they'd like you to sit in on the appointment. I went to all my appointments alone, and as I look back, I realize how little I remember. It would have been nice to have someone along to help advocate for my health, and to be able to explain to the doctor what they are observing of my daily behavior and how it may be altered from my "normal." Get them out of the house. Before you kidnap your loved one and take them on an adventure, make sure you ask them if they're feeling up to it. If it is an adventure that comes with some monetary costs, make it clear that you are buying (remember how I mentioned that finances may be really, really tight). Keep in mind that they may be sensitive to light, sounds, crowds, etc. and plan something accordingly. A trip to a flower garden (remind them to bring their sunglasses), or to a spa for a pedicure might be lovely options. You can ask them what they'd like to do, but be prepared for them to not be able to articulate a clear plan. Be prepared to plan it all out. Bring them flowers. I know that's totally cliche, but flowers really are beautiful and can brighten up anyones day! Send a card or care package. If you don't live nearby, sending a card stating that you're thinking of them will mean so very much. Just knowing that someone has their thoughts on you can go a long way in recovery. If you're feeling generous, you may also include a gift card to a local grocery or Target store. Show up with a movie and a book. Ask them if they would prefer to watch a movie, or have you read to them. Everyone's TBI is going to be different. Some can't handle to watch a movie or hear the sounds, and many can't read well. So offering to read a book to them might really make their day. If neither seem appealing to them at the time, snuggle up with them on the couch under a comfy blanket, and just be there for them. Sometimes sitting in silence with a loved one can really make a person's day.Watch their kids for a few hours. Or better yet, take them overnight. Being a parent with TBI has got to be overwhelming and exhausting. Knowing that their child(ren) is in good hands will give them comfort and allow them to rest and recharge for a few hours. Rest is SO important in the recovery process.
Also know that we are in this for the long haul. We will still be struggling with the lasting effects of our injury for months, if not years, after the accident. Don't put pressure on your loved one that they "should" be feeling better. I am 18 months out and still suffer a great deal of fatigue and cognitive deficits, as well as regular headaches.
Also know that we tend to be incredibly emotional after a head injury, or possibly even aggressive. Be prepared that your generosity will elicit many emotions, some will cry, some will laugh, and some might possibly get angry with you. Don't take any of it personally, we are dealing with a very difficult injury, not to mention a complete change in our personality. Just know that you are doing the best you can for them and that they appreciate you no matter how they may react.
You may also like to listen to my recent radio interview on Rose City Forum out of Portland, OR. We spend an hour talking about what it's like to have a TBI.
If you are a survivor or caregiver, I invite you to join our closed Facebook group, The TBI Tribe.