My father’s motorcycle accident in 1987 changed our lives permanently. He survived a severe traumatic brain injury, spent 5 weeks in a coma, went through rehabilitation for 18 months, and then lived with my mother who cared for him for over 25 years. He did not survive a brain tumor in 2015.

Things we struggled with included: extended hospital stays, searching for the right rehabilitation and long-term care facilities, navigating social service and benefit systems, and wading through insurance and legal issues. I always sought to protect his autonomy while realizing that as his guardian the final decisions were mine to make.

We fumbled along and did the best we could. Determined that there was a better way, I completed an 18-month patient advocacy program at the Center for Patient Partnerships, a patient advocacy center located within the University of Wisconsin Law School.

My family’s experience was unique, as is yours. If my training can help you navigate the complexities of the health care system or other challenges you face, I am glad to help. No question is silly. No topic is off limits.

I believe:

1. A patient is more than a disease or condition.
2. Care improves when providers know a person and not just a patient.
3. Better care starts with better conversations.
4. Recovery is a marathon — not a sprint.
5. Caregivers must also take care of themselves.

What you can do:

1. Personalize your hospital room with cards, music, etc.
2. Talk about what is important to you, and your preferences and values.
3. Plan your conversations with your doctors.

Talking to your doctor:

1. Write down questions you have for your doctors.
2. Prioritize your 3 most important questions.
3. Realize you may only have a few minutes to ask questions.
4. Ask for clarification if answers are unclear.
5. Follow up with a nurse or physician assistant with additional concerns.

Kind regards,
Brent Schmaling