We asked our online community of military spouses, family members, and other caregivers to share the things they wished someone had told them when they began their caregiving journey.
We heard many 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, and YouTube.
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Educate yourself on TBI, treatments, and resources. Go to the appointments, ask questions, and keep a notebook because you can't remember it all and your service member probably won't either. Don't be afraid to ask for help and remember to take care of yourself!
It's not the end of the world just because your veteran has been diagnosed with TBI. Every day is different and some days are better than others. Your veteran has suffered this because of the war they have fought in. It's not their fault that they are in this predicament, and you will need to remind yourself of this. Don't be hard on them and don't be hard on yourself...you will get through it.
Be patient. It will get better. Just work through one day at a time.
Make sure you are getting the compensation due from the Veteran's Benefits Administration. Claims are only paid to the date of the claim, so once you get a diagnosis it is important to get it done right away. Use an accredited service officer to help you navigate the system. For the caregivers- Make sure you get in the VA caregiver program to get help for yourself. Learn the signs of caregiver burnout/compassion fatigue and make sure you schedule time for yourself. Use the respite care available to you on a regular basis so that you don't become exhausted without ever getting a break.
Try not to take things that might be said out of frustration and fear personally. It’s a big adjustment for everyone.
Always report behavior changes to the doctor and be their best advocate (our doctor calls me his memory and expects me to be a major part of his care). Keep a date book with things that happen over time and give it to the doctor to see.
There is a new day every day.
Don't take NO for an answer if you think something is wrong and everyone else does not agree with you. You are the only voice for the person with TBI and they will need you to fight for them.
Keep a family calendar in a central location in our home, as well as a dry erase board for communicating. We also keep a relatively rigid routine when it comes to bedtime/waking up; weekends are not much different than work days.
We have a small dry erase board mounted on the cupboard where my husband keeps his meds. There's a column on there for each medication and a column for each day of the week. He marks off each med as he takes it and each OTC item he takes as well. It helps him (and me) keep track of what he's taken and when each one needs to be refilled. My husband processes information in writing better than verbally now so we use written communication whenever possible. Dry erase boards are everywhere in our house. Also I repainted his desk with chalkboard paint and bought chalk pens so he can make notes right on his desk or I can leave him notes on his desk.
Not everyone ends up with the same outcome. Everyone has their own recovery time — some faster than others. Some do better in some areas then other areas of recovery.
Start a journal immediately and be dedicated to taking a few min. a day to write in it. Include notes about meds, behavior changes, therapies, sleep, and headaches. You think you will remember, but too much happens and it snowballs so much you forget the details. Don't rely on medical records thinking doctors and nurses will have all the information at their fingertips. They will ask YOU for information.
Pace yourself and do stop to notice the little things in the relationship. It is easy to get so focused on the symptoms and behaviors and forget who the person is. Give yourself permission to ask for your own support system.