Tag: Returning home

Returning home after brain injury

When you are ready to leave the hospital or rehabilitation centre, you will need to make a plan for your return home or to new housing. This is called a discharge plan and will help you as you transition to a home environment. It is important to ask questions and collect all the information available to you.

Topics in this section include:

What is a discharge plan?

A discharge plan is a roadmap you can use to prepare. Its purpose is to ease the transition to your next destination. It includes information regarding:

  • Any follow up appointments
  • Medication and prescriptions
  • Special equipment that might be needed
  • Specific care instructions
  • Therapies that may be required post-discharge
  • Things to avoid during recovery/recuperation

By creating a comprehensive plan, you’ll have all the information you need in advance of the discharge day.

Making a discharge plan

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 in advance of the actual date. This may change as physical healing progresses. Many hospitals and rehabilitation centres have a discharge planning team that will give you as much notice and assistance as possible when coordinating your departure. It’s important to note that depending on your area and the hospital, there may be different resources available.

Start planning as early as possible for your discharge. Include caregivers and family members, and have honest discussions about your needs, wants, and capabilities. Request a team meeting at the hospital: it’s the best way to get everyone 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 have a pen and paper with you at every appointment. Any instructions for care, rehabilitation information, and general notes should be either written down by you or 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 get the answers you need. Keep all these papers in a binder or folder that is clearly labeled and secure.
Identify all your care needs
You may have lifestyle changes that will affect your needs related to your health and overall well-being after your injury. This could include but is not limited to:

  • Bathing and hygiene
  • Emotional and mental health care
  • Ongoing rehabilitation appointments
  • Other forms of personal care like cooking, cleaning, etc.
  • Physical care
  • Medications

These needs will be initially identified by the healthcare team based on their assessment of you. While there may be additional changes as recovery progresses, ongoing assessments can help determine what kinds of supports are needed.

It’s important to be honest about how you’re feeling and understand that accepting help is essential for both you and caregivers/family. They want to make sure you are safe and give you the support you need to help throughout your stages of recovery/ rehabilitation.​​​​​

Determine where you are going to live
There are a few different places you could go after leaving the hospital:

  • Your home
  • A relative’s home
  • A rehabilitation centre
  • A long-term care home

Before you 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 you have after the hospital? These will be identified in the previous step
  • Are you able to live alone?
  • Are you able to live with a family member or caregiver? If so, is there someone that can provide the care you need (i.e. a professional caregiver or family member)?
  • How much and what type of rehabilitation do you need, and how are you going to get it?
  • Could there be any risk to others (i.e. kids or spouse) if you do return home?
  • If a long-term care home is the best option, when are you able to move in?
  • If your bed isn’t ready in long-term care, where will you go in the meantime?

The answers will help decide where you will go 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 to a home, it is important that the house/apartment is suited for your 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 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 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 you 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

Transportation
Many individuals suffer mobility issues or are unable to drive 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 an existing vehicle or purchasing an accessible vehicle.

Once you begin to consider returning to driving, you will need to undergo assessment and training. More information about returning to driving

Public transportation is an option if available in your area. You may want to take into consideration some of the cognitive changes you are experiencing before venturing out on your own.  Some people have new challenges with orientation, depth perception, and short-term memory which can make buses, subways, and trains dangerous without proper supports. You can prepare yourself by carrying a bus schedule or asking someone to go with you.

Find out who to contact if you need something after discharge
If you require information or assistance after you are 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 call. Your family doctor will also play a key role in monitoring recovery after discharge and will be able to help as you navigate rehabilitation.

What should I expect after returning home?

You need to prepare yourself for the fact that things will not go back to the way they were prior to the injury. You may experience many symptoms and changes connected to your brain injury that will affect how you interact with your family, community, and environment. A few examples include:

  • Being unable to make choices when it comes to things like food or activities
  • Changes in personality and behaviours
  • Forgetting where things are located
  • Needing help to navigate from room to room

You may be more focused on physical healing and getting back to how things were: but it’s important to understand that brain injury recovery can take a long time. Medications may help with symptoms, but they aren’t ‘cures. While some effects of brain injury get better over time, in many cases there is a permanent change. Recovery will be life-long and managing the effects of brain injury will become part of your ‘new normal’. Learn more about finding your new normal

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 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.

There are some actions you and family members can take to make the transition home easier.

Create a daily schedule and routine
Having a daily routine and schedule gives you a sense of order and takes the guesswork out what’s going to happen each day. This reduces stress and anxiety, which can make activities of daily living (ADLs) harder. This schedule can be written down each day (or made a week in advance) and posted in a place that you can easily see.
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 increments – if you set a goal that is too big or too far away, you may get discouraged. You can consult your rehabilitation and medical team about identifying and setting goals. They can also help you work step by step towards those goals.
Focus on healthy living
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 – specifically, living as healthy a lifestyle as possible. This includes:

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 right away. While this is stressful and frustrating, try to give yourself a break. Find little wins 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 for individuals to 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 a 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. 

Renovation funding

After release from the hospital or rehabilitation to a house there may need to be renovations to make it more accessible. There are financial grants that can be applied for to make those renovations more affordable.

Canada
Alberta
British Columbia
Manitoba
No available programs at the provincial level. For more local information, reach out to your local brain injury association.
New Brunswick
Newfoundland and Labrador
Northwest Territories
Nova Scotia
Nunavut
Ontario
Prince Edward Island
Québec
Saskatchewan
Yukon

Housing

After your initial medical recovery, there’s a big question facing you and your family: where are you going to live? Depending on the severity of your injury and the extent of your needs determined in consultation with your medical team and family, there are a few options available to you.

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Living at home

If you’re able to complete activities of daily living (ADLs) on your own, you may be able to live in a house or apartment. Before or upon returning home, your doctor may recommend that you work with an occupational therapist. Occupational therapists help survivors redevelop skills needed to complete activities of daily living. They also do home evaluations and recommend changes that will make the home environment more functional for you. They will start with a functional assessment of your needs and the environment, identifying impairments, barriers, and solutions to those problems. This could include lower counter heights, labelling items, or organizing areas of your home to create a more fluid routine.

Having a caregiver

If you require assistance with activities of daily living (ADLs) you may need a caregiver. This could be a personal support worker from a home-care provider or a family member. The doctor may recommend that you have someone with you for longer periods of time when you first return home, even if you are able to live alone. Caregivers will help you get used to being home, identify areas where you may need changes/adjustments to your environment, and monitor symptoms.

Living at home is familiar and comfortable and helps build/maintain independence. Costs for home care depend on where you live, the services you need, and how often you need them.

Group communities with assisted care

Communities with assistive care are single or multiple buildings with communal space. This is also sometimes called supported living. Residents are provided with their own room, apartment, or living space. They allow you to be independent but have access to assistance when needed. This includes assistance with medical needs, mobility, and activities of daily living.

Wait times and costs for assisted living communities will vary from place to place. There are both public and private assisted living communities. Public means the facilities are subsidized by the government, while private means you take on all the monthly costs.

Your local brain injury association will have more information on services in your area.

Short-term care

You might need full-time care for a short period of time before you’re able to return home or before you’re able to move into a long-term care room. Short-term care beds are commonly located in long-term care facilities but are specifically used for short stays.

The length of time you can stay in short-term care ranges from a few days to a few months depending on your facility.  If there are no facilities close to you, home care providers are also available for short periods of time. Short-term care is also used as a respite (short break) for caregivers who look after someone at home.

Long-term care facilities are for people who need care and aren’t able to live at home. There are specialized long-term care homes for people living with brain injury, but they have limited beds/rooms. This means long wait lists. In some cases, a person on the waitlist may never get a room since residents may live there for decades.

The majority of long-term care facilities are designed for seniors with reduced abilities and persons with disabilities. There are both public and private long-term care homes in Canada.

Public vs. private long-term care

Government-subsidized long-term care is the most affordable option for many people. The provincial and federal governments pay for personal and medical care, while residents are responsible for accommodation costs (room and board). Publicly-funded homes have long waitlists due to the limited number of beds/rooms. Waitlists can also depend on where you live. Accommodation rates are set by the province/territory, so they’ll be different depending on where you live.

Private long-term care facilities have no subsidies, which means all monthly costs are taken on by you or your family. These costs will vary depending on the medical services offered at the facility, where it’s located, the type of room you want, and other factors. Private long-term care is more expensive but may have more availability and shorter waitlists.

How do I choose a long-term care home?

There are several factors to take into consideration when choosing a long-term care home.

Location
Many people entering long-term care ideally want to stay as close to home or family as possible – but if other factors, like proximity to services or availability, are more important, you may be in a facility further away. You have to determine your priorities. Once you do, you’ll have a geographical radius within which you can make your decisions.
Eligibility
Eligibility requirements for long-term care facilities differ depending on the people to whom they provide services. Facilities determine if you’re eligible based on things like age, your medical needs, and their capabilities.

Availability
There’s a strong possibility that a room/bed won’t be available right away – particularly in public long-term care facilities. When that’s the case, you will be put on a wait list.

Wait times for public facilities by province/territory

Wait times are specific to individual homes and may not be collected by area or province/territory. If there is a wait time, you will be kept in the hospital or in short-term care until the bed in long-term care is available or alternate arrangements are made. Temporary home care may be necessary if the wait times are months-long.

Some provinces and territories do share the wait times for public long-term care.

Cost
Another big consideration when choosing a long-term care home is cost. Public long-term care facilities receive government funding that covers most of the costs associated with the medical and personal support part of care. Residents are responsible for accommodation costs. Accommodation costs commonly cover room and board.

For average long-term care costs per month per province, please find your province or territory on this resource list.

Make a budget

Long-term care costs a certain amount each month, so you need to figure out how much you can afford. Things to factor into your budgeting include:

  • Savings
  • Whether or not your family members will be contributing
  • Existing assets. For example, do you own a house you plan to sell? This money could go towards your long-term care
  • Other costs. Some things aren’t included in your long-term care – for example, hair cuts or shopping

If you want extra assistance with planning, contact a financial planner or advisor. You can ask a family member or friend for support in the process.

What will insurance cover?

General insurance plans do not cover long-term care. You should speak with your insurance provider about the coverage you do have. Long-term care insurance policies are available in Canada but cannot be purchased and used after the brain injury has occurred.

Subsidies

In some areas, if you cannot afford basic accommodation costs, you may be eligible for subsidies from the government.

Are there additional costs?

Long term care facilities may have optional or additional products and services that are not covered by the accommodation fees. These will differ from home to home, but some examples include:

  • Personal hygiene services like haircuts
  • Personal products you want outside of the ones offered by the home – i.e. a particular brand of shampoo or toothpaste
  • Extra entertainment options outside ones provided by home – private telephone, television, etc.

When speaking with a potential long-term care home, make sure to ask about exclusions when you discuss the accommodation rate.

Reputation
It’s important to collect information about the long-term care facilities you’re interested in so you can feel confident in your decision. You can ask professionals in the health community about long-term care facilities. You can also ask to speak with current residents with brain injury. Ask about their happiness, health, and overall well-being in the home.

There is some available licensing, accreditation and reputation information for provinces/territories.

Staff
The staff at the long-term care home will be a big part of your life. As such, you should feel comfortable and safe with all the staff. Ask to meet with staff who would be involved in your care. This includes nighttime staff. Have a list of questions ready that covers the following areas:

  • Their work experience and education
  • How they would handle certain behaviours
  • How they would make sure you feel respected and valued
  • How they and the home provide a positive environment
Environment
You want to make sure that the long-term care home is a safe and positive environment for you. Ask for a tour of the long-term care home for yourself or a friend/family member who is acting on your behalf. We’ve created a comprehensive list of questions to ask when selecting a long-term care home.

  • Do they have everything needed to address the individual’s medical needs? Make sure to check if they have access to each therapy
  • What physicians work with the home?
  • Can rehabilitation therapists that work outside the facility come to continue treatment?
  • Is there a safe outdoor area?
  • How are emergency paths and exits identified?
  • Is there a policy for physical restraints?
  • What are the rules surrounding family visits?
  • Are family members able to stay overnight in extenuating circumstances?
  • What supports are in place for family members?
  • How are meals served?
  • Are there assistive programs for those who need help eating?
  • Can we bring in our own food?
  • What kinds of activities are there?
  • Are there people who can help with appropriate social interaction?
  • Are there any scheduled outings?
  • If a person isn’t easily able to leave their room, are activities brought to them?
  • What is the cleaning schedule?
  • Are there washrooms in every room?
  • Are any bathrooms shared?
  • What furniture is provided by the home?
  • What is allowed to be brought in?
  • Is there a TV, phone, Internet, etc.?
  • How is room temperature controlled?
  • Are there hair cutting services available on-site?
  • Are there any additional charges?
  • Are accommodations made for religion?