Caregiver to Caregiver: Words of Advice and Hope

BrainLine is committed to providing information and support not only to individuals who have sustained traumatic brain injuries, but also to their caregivers and loved ones. There may be no one more qualified to offer caregivers advice and encouragement than others who have walked in their shoes. We asked our online community to share the things they wished someone had told them when they began their caregiving journey as well as other tips and suggestions.

There were several recommendations we heard many times:

• Be patient with your loved one and with yourself.
• Take time for yourself.
• Ask for help and accept it when it is offered.
• Take one day at a time.
• It’s a marathon, not a sprint.

But we also heard other messages of strength, encouragement, and resilience and we share some of them below. We encourage you to add your own advice and encouragement in the comments section below and to join the BrainLine community on Facebook, Twitter, YouTube, and Pinterest.

Try not to take things that might be said out of frustration and fear personally.
—Shelly

Always report behavior changes to the doctor.
—Marcia

There is a new day every day.
—Daniel

Keep a journal. At the end of the day, when you think you can handle no more, write down at least one positive. An improvement, a word, a hug. The little things really do add up to something huge!
—Elaine

One of the problems is it’s never about YOU after your loved one has a brain injury. Sometimes it’s okay to have it be about YOU. Caregivers are always putting the survivors first, and you become a shell if you aren’t able to have your own life, joys, and triumphs.
—Karen

Patience for whom you’re caring, empathy, forgiveness and patience with yourself. Always let love overrule any other emotion.
—Betsy

They told me to start slow and not burn out soon into our journey. I was overwhelmed and determined, so I didn’t take that advice. Now I see clearly. Take time and enjoy the present. Recovery will come at its own pace.
—Yvette

Live for the day, don’t give too much thought to tomorrow, next week, next month or next year (you will only drive yourself crazy). You may have a “different” kind of life than what you are used to, but by understanding how to care for yourself and your loved one, it can be a wonderful life.
—Cory

It helps when you repeat yourself for the 10^th time that you act like it’s the 1^st. And when you can laugh about stuff, together especially, it will make your day better.  
—Ami

Never worry about anything that didn’t happen or hasn’t happened yet.
—Arturo

The expectations in the community for me and my family don’t have to be MY expectations. It is okay for my life to be simpler or messier or barely afloat; it doesn’t make me a failure or a loser.
—Ami

Allow others to comfort you. Have someone with a clear mind and not as emotionally exhausted to be present to be a second ear for what the doctors and therapists tell you.
—Sherry

Get some outside help…physical therapists, home  health aides, etc. to help with bathing, feeding, and getting dressed in the mornings…at least a few times a week just to give yourself a break.
—Charmaine

Forgive yourself for impatience and frustration. Take care to keep your own mind in shape by staying current and reading, crosswords, whatever keeps you thinking.
—Mary

Keep up to date on research, alternative medicine, find an expert on brain injury and see them, and always be your survivor’s advocate.
—Karen

It’s okay to cry when you’re by yourself. It helps your soul.
—Jeannette

Remember that you have suffered a loss too, but the person for whom you care has truly suffered the most — and will continue to do so. I don’t diminish the caregiver effort, but I do ask that it is done with focus on the person who has the TBI —  the one who struggles each day to maintain and make sense, who knows that he is not the same but yet he is the same. 
—Jody