The person with a brain injury is ready to leave the hospital. It’s an exciting day, but it can also be overwhelming. The transition from acute care to rehabilitation (or home) can be stressful, especially on the part of the caregiver. A discharge plan will help make this process as smooth as possible and reduce both your stress and the stress on the person with a brain injury.
Topics in this section include:
- What is a discharge plan?
- What is my role in the discharge planning process?
- How do I make a discharge plan?
- What should I expect from my friend or family member when they're discharged?
- What if they aren't ready to be discharged?
A discharge plan is a roadmap for your friend or family member leaving the hospital. Its purpose is to ease the transition to their next destination. It includes information regarding:
- Any follow up appointments
- How to move the individual from the hospital
- Medication and prescriptions
- Special equipment that might be needed and will these be long-term needs. This will determine if the equipment is rented or purchased.
- Specific care instructions
- Therapies that may be required post discharge
- Things to avoid during recovery/recuperation
- What you can expect from your friend or family member
By creating a comprehensive plan, you’ll have all the information you need in advance of discharge day.
Your role is to help collect all the information necessary for leaving the hospital. Choose a designated folder or binder with a label to help keep track of paperwork. You will also help the medical staff involved in your friend or family member’s care by providing insight into the person’s daily life, medical history, and more.
If you are going to be the primary caregiver, the discharge planning process will involve looking at what the person with a brain injury needs in terms of care and what you are able to provide. This includes physical assistance, help with activities of daily living, and even financial aid. You may need to be trained in special care methods – for example, cleaning and using a feeding tube.
You will also need to consider other aspects of your life that may affect your position as a caregiver for the person with a brain injury. For example, you may not be able to be a primary caregiver if you have a newborn or young child.
The doctor(s) or nurses will speak with you and the person with the brain injury about when they expect them to be ready to leave. This is generally done a few days in advance of the actual date. This may change as physical healing progresses. Many hospitals have a discharge planning team that will give you as much notice and assistance as possible when coordinating their departure. It’s important to note that depending on your area and the hospital, they may not have the same resources.
If possible, start planning as early as possible and involve the individual in the discharge process. Discuss their needs, wants, and capabilities. Request a team meeting at the hospital. It is the best way to get the individual’s hospital team in the same room to discuss progress and discharge plans. During a lengthy hospital stay these meetings can occur more than once. Once you’ve established who will be a part of the discharge planning process, you’re ready to make your plan. Write everything down
The first thing you should do is bring a pen and paper with you to every appointment. Any instructions for care, rehabilitation information, and general notes should be either written down by you or printed out and provided to you in writing. Having this written transcript of instructions and notes will ensure you don’t forget or miss anything. You should also write down questions you have for the healthcare team to make sure you have all the information you need from them. Keep all these papers in a binder or folder that is clearly labelled and secure.
- Identify all their care needs
The person with the brain injury is going to have a lot of needs related to their health and overall well-being. This includes:
- Bathing and hygiene
- Emotional and mental health care
- Learning how to resume life roles like returning to work, providing childcare, driving or sexuality
- Physical care, including medications
- Ongoing rehabilitation appointments
- Other forms of personal care like cooking, cleaning, etc.
These needs will be initially identified by the healthcare team based on their assessment of the person with the brain injury. While there may be additional changes as recovery progresses, ongoing assessments can help determine what kinds of support are needed.
Care after a brain injury can be complicated and take a toll on family and caregivers. It’s important to speak honestly with the discharge team, the person with the brain injury, and the rest of your family about your abilities and your needs as well as theirs. If you are the primary caregiver, make sure to review our tips on caring for yourself.
- Determine where the individual is going to live
There are a few different places your friend or family member could go after leaving the hospital:
- Their home
- A relative’s home
- A rehabilitation centre
- A long-term care home
Before they leave the hospital, you’ll have to work with the discharge team and your family to answer these questions:
- What challenges - physical, cognitive, emotional or behavioural - will the individual have after the hospital? These will be identified in the previous step.
- Are they able to live alone?
- Are they able to live with you? If so, is there someone that is able to provide the care they need (i.e. a professional caregiver or family member)?
- How much rehabilitation do they need, and how are they going to get it?
- What kind of support will they need in a home environment?
- Could there be any risk to others (i.e. kids or spouse) if the person did return home?
- Is everyone aware of ways to help the individual with activities of daily living (ADLs) and other remaining challenges?
- If a long-term care home is the best option, when are they able to move in?
- If their bed isn’t ready in long-term care, where will they go in the meantime?
The answers will help decide where your friend or family member will go immediately after the hospital. This is an essential part of long-term care planning.
- Changes to the home environment
If your friend/family member is returning to a home, you need to make sure the house is suited for their needs. This could mean something as simple as adding labels to things to help with memory to more complex renovations to accommodate for mobility.
It can be difficult to know what changes to make and which changes will be beneficial. An occupational therapist can help set up the home environment for the individual with the brain injury - often called a Home Safety Assessment - and continue to work with them on activities of daily living. An occupational therapist will perform a functional assessment of the individual, you and your family and the environment. They identify impairments and environmental barriers and create a treatment plan designed specifically for the individual with the brain injury. Not only can an occupational therapist improve the home environment, but they can continue to work with individuals on setting personal goals, improving skills, and increasing independence.
Local brain injury associations have support and services in place to help people with brain injury and their caregivers through these transitions. Find your local brain injury association.
Many individuals suffer mobility issues after a brain injury. Most provinces/territories have accessible taxis or public transit options if the person with the brain injury needs extra room/assistance. This is information the hospital should be able to provide to you. You can also look into conversions to your existing vehicle or purchasing an accessible vehicle.
Once the person with a brain injury is ready to talk about returning to driving, they will need to undergo assessment and training.
If you’re concerned that your friend or family member isn’t ready to be discharged, you are able to bring those concerns to the doctors and ask for more information. You can also engage the services of a patient advocate. This is an out of pocket expense, but in some cases, they can be helpful in navigating the process. It is also possible to speak with patient relations at the hospital. Every hospital has someone that you can speak with about any concerns you may have.
Remember that the hospital and staff have the best interests of the person with the brain injury at heart and will do their best to make sure everyone feels comfortable and fully understands all the information.
While the individual is ready to leave the hospital, you should prepare yourself for the fact that things will not go back to the way they were prior to the injury. They may experience many symptoms and changes connected to their brain injury. This means they will interact with you and their environment differently. A few examples include:
- Forgetting where things are located
- Needing help navigating from room to room
- Being unable to make choices when it comes to things like food or activities
- Changes in personality and behaviours, resulting in an altered home environment
Many caregivers are focused on the physical and mental healing process: there is also a lot of changes that will happen once outside the hospital.
Brain injury recovery can take a long time. Medications may help with symptoms, but they aren’t ‘cures’. For many individuals, recovery will be life-long. As part of your discharge planning, make sure to take some time and ask yourself: “what is our life going to look like at home?” If you have concerns or need help talking through some of those changes, ask the hospital team about supports 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.
You also need to be mindful of how these changes are going to affect you mentally, physically, and emotionally. After discharge, you may take on additional roles (e.g., supporting the individual at home, advocating for them to have access to services, trying to coordinate services and appointments, etc.). This is something for which you should prepare. You will also experience a lot of worry about the person’s safety. It can be a struggle between wanting to protect them from harm and letting them do the things they want/need to do even if there is some risk involved.
All aspects of caregiving can be incredibly draining. You need support too. It’s important to talk/share with others – family, support groups, professional psychiatrists/psychologists, and friends. Create a list of resources/supports that are available to you in your community and how to use them.
If you require information or assistance after the person with the brain injury is discharged, ask the hospital team who you would speak with while you’re making your plan. Not every medical centre has a designated person to handle these calls, but they may be able to help you find a contact that can answer questions if you need something after discharge. Make sure to write down the name and contact information for the person the hospital says you can contact. Their family doctor will also play a key role in monitoring recovery after discharge and will be able to help as you navigate rehabilitation.