When a loved one has a brain injury, doctors and nurses share a great deal of information, often quickly, and often when you are least able to take it in. It can be hard to know what to ask, or to remember the questions when the moment comes.
This is a plain-language set of questions for each stage, from the early hospital days through rehabilitation and going home. You do not need to ask them all, and you do not need to ask them now.
Think of it as a menu to draw from, something you can keep in your notebook and return to as things unfold. For anything specific, the care team is always the right source.
Key takeaways
- No question is too small. A good team wants you to understand what is happening.
- Write questions down as they come to you, and jot the answers. Stress makes memory unreliable.
- You do not have to ask everything at once. Different stages call for different questions.
- It is always fair to ask for plain language, or for something to be repeated.
A few gentle reminders first
Before the lists, a few things that make asking easier.
Keep a notebook, and write questions the moment they occur to you, along with the answers, names, and dates. Bring it to every conversation.
If you can, bring another person to important talks, so two of you hear what is said. And never worry that a question is too basic. The team would far rather explain than leave you in the dark.
Questions in the early hospital days
In the first days, you are mostly trying to understand what is happening right now.
- ›What is my loved one’s condition at the moment, and what are you most focused on?
- ›What do the scans and tests show, in plain language?
- ›Why is my loved one being kept sedated, and what happens next?
- ›What are the next steps you are considering, and what are you watching for?
- ›Who is the best person to speak with for updates, and when?
- ›Is there anything I can do that would help right now?
Our guides on the first days after a brain injury and the ICU go further into this stage.
Questions about the injury and recovery
As things settle a little, you may want to understand the injury itself and what may lie ahead.
- ›What kind of brain injury is this, and which parts of the brain are affected?
- ›What effects might we expect to see, and how might they change over time?
- ›What does the recovery process usually look like from here?
- ›What signs of progress, or of problems, should we be aware of?
- ›How will we know when my loved one is ready to move out of intensive care?
It is worth remembering that early on, honest answers often include uncertainty. A team that avoids firm predictions is usually being careful, not evasive.
Questions when rehabilitation begins
As your loved one stabilizes, attention turns to rehabilitation, and a new set of questions comes into view.
- ›What are the goals of rehabilitation for my loved one right now?
- ›Who is on the rehab team, and what does each person do?
- ›How much therapy will they have, and of what kind?
- ›How will you measure and share progress with us?
- ›How can the family take part in therapy and support recovery?
Our guide on moderate and severe brain injury explains the rehabilitation team and the wider arc of recovery.
Questions when choosing a rehab program
If you have a choice of rehabilitation facilities, it helps to ask each one a similar set of questions so you can compare.
- ›Is the program accredited, and does it specialize in brain injury?
- ›Are there staff with brain injury credentials, such as Certified Brain Injury Specialists?
- ›How much therapy will my loved one receive each day?
- ›What is the staff-to-patient ratio, and how often does the team meet about each patient?
- ›How are families involved, and what training and support do you offer us?
- ›How do you plan for the move home, and what follow-up is there after discharge?
Questions about going home
As discharge approaches, the focus shifts to safety and support at home.
- ›What will my loved one need at home, and is the home suitable, or does it need changes?
- ›What medications are they taking, what are they for, and what should we watch for?
- ›What therapy or follow-up appointments will continue, and who arranges them?
- ›What should we do, and who should we call, if there is a problem or a question at home?
- ›How will you teach us to support recovery and continue therapy at home?
- ›What support is there for me, as the person caring for them?
Questions about support and money
The practical and financial side is real, and it is fair to ask about it plainly.
- ›What will this stage of care cost, and how much will insurance cover?
- ›Are there costs we should expect to pay ourselves?
- ›Is there a social worker or case manager who can help us navigate this?
- ›What benefits, support services, or community resources might we be entitled to?
- ›Are there local support groups for families and survivors? Our resources page lists national organizations that can connect you with local groups.
Questions to ask yourself
Not every important question is for the doctors. Some are for you, and they matter just as much.
- ›Am I eating, resting, and getting outside, even a little?
- ›Who can I lean on, and have I let them help?
- ›What can I hand off to someone else right now?
- ›Do I have someone to talk to about how I am feeling? If not, our resources page lists free, confidential support you can reach any time.
Looking after yourself is part of caring for your loved one. Our guides for families and for caregivers go further into this.
Common questions
What if I forget what the team said?
This is extremely common under stress. Write things down as you go, or ask if you can record the conversation or have a summary. Bringing another person to important talks helps too, so two of you hear it.
What if I do not understand the answer?
Say so, and ask them to explain it more simply. It is never a nuisance. A good team would much rather take another minute than have you leave confused.
Is it okay to ask for a second opinion or to disagree?
Yes. It is reasonable to ask questions about the care being given, to seek another opinion, or to raise a concern. A good team will not take it personally, and a social worker or patient advocate can help if you are unsure how to raise something.
What if I think of a question after the doctor has gone?
Write it down and ask it later. The bedside nurse can often answer or pass it on, and you can raise bigger questions at the next rounds or family meeting. No question is lost just because the moment passed.