At some point after your brain injury, you will be leaving the hospital. This is an incredible milestone, and it’s very exciting! However, it’s important to make sure that you have what you need to leave the hospital. Brain injury changes your daily life, and that includes how you interact with your living space. Before you leave, you will need a discharge plan.
Let’s talk about:
Before you keep reading
A lot of people with brain injury will be going home at some point, either directly from the hospital or from a rehabilitation centre. But we know that’s not true for everyone. So while we talk a lot about going home on this page, we want to make sure you know that if home is a complicated topic for you, this information can still be used to help you understand your next steps. And if you have any questions or concerns, speak with your health care provider about them. They’re a part of your support system and want to help you as much as possible.
What’s a discharge plan?
You’ll probably hear this term a lot, but you might not know what it is at first. A discharge plan is a roadmap (or a checklist) you use to move from the hospital to wherever you’re going next (usually a rehabilitation centre or home). It’s meant to make it easier for you and your family.
Your discharge plan can (and should) include information about:
- Any follow-up appointments
- Medication and prescriptions
- Rehabilitation recommendations
- Special equipment that you might need to move or complete activities
- Specific care instructions – for example, steps for exercises or hygiene practices
- Things to avoid during recovery/recuperation
By creating a thorough plan, you’ll have all the information you need to make the transition smoother.
How to make a discharge plan
Many hospitals and rehabilitation centres have a discharge planning team that will give you as much notice and help as possible when you’re getting ready to leave. It’s important to note that depending on where you live, the hospital may have different resources. The doctor(s) or nurses will speak with you and your family/loved ones about when they expect you to be ready to leave. This is generally done a few days before you’re actually released.
Remember
You should be involved as much as possible in your discharge planning, so you feel comfortable with every stage. It might be that the doctors and health care professionals are talking to your parents/guardians a bit more than you because they’re going to be the ones helping you out the most after you leave the hospital. It’s normal for parents/caregivers to need that information. But if you feel like you’re not getting the information you need or being included in important decisions, don’t hesitate to speak up for yourself. And if something isn’t clear, ask for help!
Start planning as early as possible for your discharge. Include your parents, siblings, and/or caregivers in the plan—they need to know what to expect as well. You should also have honest discussions about your needs, wants, and the realities of post-hospital life. You (and your parents/guardians) need the facts about what the next stage of recovery may look like for you (even if it may not be what you want to hear).
Once you’ve established who and what will be involved in the discharge planning process, you’re ready to make your plan.
Here are some tips that can help when you build your discharge plan.
Write everything down
Any instructions for care, rehabilitation information, and general notes should either be written down by you or given to you in writing (this could be on paper or digitally) so you don’t forget. You should also write down questions you have for the health care team to make sure you get the answers you need. Keep all the papers or digital files somewhere you can easily access them.
Identify all your needs as much as possible
Brain injury comes with lifestyle changes. This could include:
- Needing help with bathing and hygiene
- Needing emotional and mental health care
- Ongoing rehabilitation appointments
- Needing help with moving
- Needing different aids to help with homework or other activities
- Medications
At first, your needs will probably be identified by the health care team based on their assessment of you. Your parents may also be able to help with that because they know you really well. While there may be additional changes as recovery progresses, ongoing check-ins can help determine what you need. And if there’s something you feel you need that isn’t being talked about, say so—don’t be afraid to advocate for yourself.
It’s important to be honest about how you’re feeling and understand that accepting help is essential for both you and your family. Everyone wants to make sure you are safe and give you the support you need to help you throughout your stages of recovery/ rehabilitation.
Keep in mind
A lot of these changes or your new needs may be ones that are frustrating or uncomfortable for you. For example, you might need help bathing—something you’re used to doing on your own. Your instinct might be to reject help or resist suggestions from your doctors because you don’t like what you’re hearing. That’s understandable—this is all new, scary and frustrating. But these suggestions are being made to help you as much as possible. It’s important to be open to them. If you try a support tip or tool and it’s really not working for you, then go back to your parents and health care team and have another discussion about alternatives.
Figure out where you’re going to live
Sometimes, people go from a hospital to an inpatient rehabilitation centre. We talk about that more on our rehabilitation page. This page will focus on returning home.
This can be a tough part of the discharge planning process depending on your needs after a brain injury. Most likely, you’ll be going home with your parents/guardians. But depending on the effects of your brain injury, your parent’s home may not be appropriate or safe for you right now. For example, you may not be able to use stairs right now: if your bedroom is on a second floor, it’s not accessible to you.
Before you leave the hospital, you’ll have to work with the discharge team and your family to answer questions like these:
- What challenges – physical, cognitive, emotional, or behavioural – will you have after the hospital? These are commonly identified in earlier steps of the discharge planning process.
- Are you able to live with your parents?
- Is your goal to eventually live on your own? Depending on your age, this might be a goal for you, and it may go hand-in-hand with secondary education goals. If you’re a little younger, this may be something that isn’t an immediate goal for you.
- Do you need regular medical care? If so, is home care an option?
- How much and what type of rehabilitation do you need, and how are you going to get it?
- Could there be any risk to yourself or others (i.e. parents or siblings) if you do return home?
The answers to these questions (and other ones your health care team guides you through) will help you decide where you can live immediately after the hospital or rehabilitation centre. This is an essential part of long-term care planning.
Changes to the home environment
If you’re returning home, it needs to be a safe, appropriate place for you to live. Chances are your parents may have to make adjustments to the space (or how the space is used). This could mean something as simple as adding labels to things to help with memory to more complex renovations to help you move around safely (like a stair lift or wider doorways).
It can be difficult to know what changes to make right away. It might be recommended that you talk to an occupational therapist. An occupational therapist can help set up the home environment for you using what’s called a Home Safety Assessment and continue to work with you on activities of daily living (ADLs). An occupational therapist will perform a functional assessment of you, your family and the environment. They identify environmental barriers and can create a plan designed specifically for you. Not only can an occupational therapist improve the home environment, but they can continue to work with you on setting personal goals, improving skills, and increasing independence. We talk more about occupational therapy in the rehabilitation section of the website.
Transportation
A big part of discharge planning is how you’re getting home. Many individuals have trouble with mobility or are unable to drive after a brain injury (at least at first). It’s pretty likely that your parents will be able to get you home, but most provinces/territories have accessible taxis or public transit options if you need extra room/assistance. This is information the hospital should be able to provide to you.
Find out who to contact if you need something after discharge
If you need information or help after being discharged, ask the hospital team who you would speak with. Keep their contact information with the rest of your discharge planning materials.
Not every medical centre has a designated person to handle these calls, but they may be able to help you find a contact who can answer questions. Your family doctor will also play a key role in monitoring recovery after discharge and will be able to help as you navigate rehabilitation. And of course, your parents will be able to help you with that information too.
What should I expect after returning home?
You may experience many symptoms and changes connected to your brain injury that will affect how you interact with your family, community, and environment. You need to prepare yourself for the fact that things will not go back to the way they were. A few examples include:
- Being unable to participate in some activities (at least not the same way)
- Changes in personality and behaviours
- Forgetting where things are located
- Needing help moving from room to room
- Being unable to use technology or read the same way you did before your injury
While in the hospital, you were probably focused on recovering physically as much as possible. That’s important and necessary healing—but brain injury also has cognitive, behavioural, and emotional effects. Brain injury recovery is often life-long—there are no ‘cures’ and no shortcuts. While some effects of brain injury get better over time, there may be permanent changes. As part of your discharge planning, take some time and ask yourself: “What is my life going to look like at home?” If you have concerns or need help talking through some of those changes, ask your parents or the hospital team about what support is available to you. You can also reach out to local brain injury associations—they will be able to offer you more local resources and information.
Here are some actions you and your family members can take to make the transition at home easier.
Create a daily routine
Having a daily routine and a simple, predictable schedule gives you a sense of order and takes the guesswork out of what’s going to happen next. This gives you some control (which is incredibly valuable when so much is outside of your control), reducing stress and anxiety. All of this can help make activities of daily living (ADLs) easier.
This schedule can be written down each day (or made a week in advance) and posted in a place that you can easily see. If you prefer to use a phone, you can use a schedule or reminder app to help you as well.
Set goals
Goals are designed to help people stay motivated and focused, and they will do the same for you. You can set goals for your home activities and for your rehabilitation. Remember to break your goals into small steps — if you set a goal that is too big or too far away, you may get discouraged.
You can talk to your parents and rehabilitation/medical team about identifying and setting goals. And when you reach a goal, don’t forget to celebrate your hard work.
Focus on treating yourself well
One of the most frustrating things about brain injury is that a lot of the effects are outside a person’s control. But there are things you can control. This includes:
- Eating well
- Practicing good sleep hygiene
- Exercising and doing rehabilitation activities
Treat yourself as well as you can so you can feel as good as possible.
Be patient with yourself
The most important part of returning home is to be patient with yourself. You are going to be facing a lot of new challenges, and there will be things you won’t be able to do—at least not right away. While this is stressful and frustrating, try to give yourself a break. Find little wins so you can celebrate and practice positive thinking.
Disclaimer: There is no shortage of web-based online medical diagnostic tools, self-help or support groups, or sites that make unsubstantiated claims around diagnosis, treatment and recovery. Please note these sources may not be evidence-based, regulated or moderated properly and it is encouraged individuals seek advice and recommendations regarding diagnosis, treatment and symptom management from a regulated healthcare professional such as a physician or nurse practitioner. Individuals should be cautioned about sites that make any of the following statements or claims that:
- The product or service promises a quick fix
- Sound too good to be true
- Are dramatic or sweeping and are not supported by reputable medical and scientific organizations.
- Use of terminology such as “research is currently underway” or “preliminary research results” which indicate there is no current research.
- The results or recommendations of product or treatment are based on a single or small number of case studies and has not been peer-reviewed by external experts
- Use of testimonials from celebrities or previous clients/patients that are anecdotal and not evidence-based
Always proceed with caution and with the advice of your medical team.
