Tag: Coping with changes

Assistive devices & technology

Assistive devices and technology are anything that helps make activities of daily living (ADLs) easier and increase quality of life. This is a small sample of the assistive technologies available to help after brain injury. If you are looking for more options, check with healthcare providers, other survivors and your local brain injury association for ideas and recommendations.

Financial aid for assistive technology/devices

DISCLAIMER: the following are examples of commonly used assistive technologies and devices. Your healthcare provider will be the one to make recommendations for your specific needs, and they should be consulted if you have any questions about assistive technology. Using these devices and technology can be very helpful, but only when targeted for your abilities.

For mobility

Walking poles
Walking poles are sometimes used for active walking. They can also be used for people who want extra support and safety when walking outside on uneven ground. These walking poles can be ordered online, or in some cases can be found in sports equipment or medical stores. Make sure to find ones that are good for rehabilitation: there is a difference between sport poles and support poles. It is also important to follow instructions and use them correctly.
Canes
Canes are a walking aid, generally used by people who have some unsteadiness and need extra support. Canes can be single point or four-point.
Walkers
Walkers are an excellent assistive aid for people who are able to walk but may be experiencing muscle weakness or unsteadiness/balance issues. Compared to canes and walking poles, walkers provide more support. While most walkers have wheels for easy movement, some do not. Your doctor will be able to provide recommendations.
Wheelchairs
Wheelchairs can be manual or motorized operation and come with a variety of features designed to make mobility easier. If you do need a wheelchair, you may have to adjust your home environment in order to accommodate the change. Wheelchairs should be fitted by an occupational or physical therapist who can make sure wheel types, seating and other parts of the wheelchair are suited for the user.

At night

Bed rails
For people who toss, turn and are at risk of falling out of bed, bed rails are an easy way to increase safety while asleep.
Low beds and bed steps
Getting in and out of bed can be challenging. Lower beds and bed steps can help. They are also easy to find and add to a bedroom.
Sleep mask
For many people, they need peace, quiet and darkness to fall asleep, meditate, or just take a few minutes for themselves. One way to do this is to use a sleep mask. A sleep mask restricts light and can help someone if they are feeling overly visually stimulated.
Special adjustable beds
Adjustable beds can make it easier to find a comfortable sleeping position, improve circulation, and turn a bed into a chair for day use.
Supportive pillows
There are different kinds of pillows that can be used to help people when the sleep. Pillows can be used to help with neck, hip positioning, between the knees, and more.

In the kitchen

There are all kinds of kitchen items that can make cooking enjoyable and more accessible. An occupational therapist may have recommendations specific to your needs.

Automatic turn-off switches for stoves
There are several automatic stove turn-off devices that can be used by people who experience challenges with memory. Some even have timers. These automatic turn-off devices can be an important safety tool.
Grips for silverware
There are grips you can get to add to silverware. This makes it easier to hold a fork or spoon and eat independently. They can also be used for other utensils such as pens.
Kitchen tools developed for people with one hand ability
There are plenty of kitchen tools such as knives, cutting boards and pots/pans that are designed for people who can only use one hand. This means that people who find traditional kitchen equipment impossible to use can still enjoy cooking.
A pot watcher
There are different names for it, but a pot watcher is essentially a heat-resistant disc that goes into a pot or kettle. It rattles when liquid starts to boil as a reminder for the person cooking. This is a great tool for people who like to cook but may get distracted.

In the bathroom

Shower chairs/benches
Shower chairs or shower benches allow people to bathe safely while sitting down to help minimize risks of falls.
Grab bars
Grab bars can be installed in various places in the bathroom to help a person in an out of a shower or bathtub or up and down on the toilet. These grab bars are installed specifically to support a person’s weight. Towel bars and hooks should not be used as grab bars.
Handheld shower sprayers
For people who sit down in the shower, a handheld shower head allows for easier cleaning and more maneuverability.
Raised toilet seats
Raised toilet seats can be incredibly helpful for people who find sitting far down challenging.

Technology

Learn more about Tech for Good a digital accessibility program 

Computer programs that change screen colour & contrast
For some people with visual challenges, regular screen settings (colour, contrast and brightness for example) don’t work. There are computer settings and additional programs (free or for purchase) that can be used to alter screens to make them more comfortable for users.
Journaling applications
For people who don’t want to keep a physical/paper journal, there are free and paid smartphone/tablet applications that allow you to keep a journal. This is also an excellent option if you struggle with writing by hand.
Photo shortcuts
Some applications for smartphones are available to create photo shortcuts for actions you perform all the time. For example, a photo of a family member could be a shortcut to their phone number. This can make calling loved ones or visiting frequently used websites quick and easy. Please note: these applications are not free.
Screen readers
Computers, tablets and smartphones can be equipped with screen reader software that will read out text and image descriptions on your screen. Some computer operating systems even have screen readers (or narrators) built in. This assistive technology is helpful for people who have difficulty using screens or vision problems.

 

Not all screen readers are the same and some may cost money. You can find the right screen reader for you by asking specialists on the rehabilitation team for their recommendations. You can then begin looking at free vs. paid programs and reviews from other users to determine which recommendation would be best for you.

Scheduling applications
There are plenty of smartphone and computer applications available for free or for purchase that make keeping a digital calendar or setting reminders easy.
Smart-pen and paper
Smart pens (along with the appropriate smart paper) can turn handwritten notes into digital notes and audio recordings. Some can even store pages or audio notes directly on the pen.
Speech to text software
For people who are unable to write, speech to text software can take what you say and turn it into text on a computer, smartphone or tablet. This is helpful for emails, text messages, reports, and more.
Talking clock/calendar
There are digital clocks and calendars that go one step further. They not only show the date/time: they say it. Depending on the model of clock/calendar, they may also show other relevant information such as temperature and weather.
Use smart technology to send alerts, change settings
Smart technology is becoming more and more integrated into homes. Using smart technology and applications, it’s possible to do things like send alerts to a caregiver when a person leaves their bedroom (ideal for people with memory or balance issues), set up automatic reminders, and more.

 

Smart technology does cost money and will need professional installers. Healthcare professionals may have some recommendations for smart technology that other patients have found helpful.

Voice recorders
Taking notes in any form may be difficult for some. Audio recorders can be used to record conversations, important meetings, doctors’ appointments, and journal entries. The recordings can be saved on a computer or compatible device.
Wearable timers & smart watches
Smart technology watches and timers can be worn and used by people with brain injury to remember the date and time, set timers for activities, and set reminders to complete tasks. Some can even take voice memos.

Additional aids

Hearing aids
Hearing aids are for people who have hearing problems and need technology to help them with communication. If you have hearing problems, you should consult with an ear, nose and throat (ENT) specialist or your doctor about whether a hearing aid would help you.
Large print calendars and schedules
Standard print size may not be suitable for some people. There are large print calendars and schedules that can be ordered. These make it easier for people to read, especially from a distance.
Prism glasses
Prism lenses are designed for people with double vision. The prisms help align the two images into one. Eye doctors prescribe prism eyeglasses based on specific tests.
Medical bracelet
A medical bracelet isn’t a tool or device, but it’s a valuable way to convey information about brain injury to medical professionals (such as emergency personnel), caregivers, and even the person with a brain injury if they are experiencing memory issues.

 

Brain Injury Canada has partnered with MedicAlert to provide a special rate on their services and a free medical bracelet.

An alternative to a medical bracelet is an emergency identification card or storing the information on your smartphone. Many smartphones now have a feature that enables you to make someone your emergency contact, which can be accessed by first responders.

Financial aid for assistive technology/devices

There are several different funding programs available to provide assistance to those with disabilities. They can be run by provincial/territorial governments, local nonprofits, or community organizations. Funding programs for assistive devices will have different eligibility requirements, so not all programs may be available to you. Check with your local brain injury association to see if they have information on funding programs.

March of Dimes Canada’s Tech for Impact Fund is providing funding towards purchasing technology to support Canadians living with a disability.

There are grants available at the federal and provincial/territorial levels that can assist with home environment accessibility renovations. You can find the list of current renovation grants on this page.

Tips for exploring the new normal

Self-identity after a brain injury is fluid. While things have changed and that’s hard, with time, patience and support you have the opportunity to explore your new identity and shape your new normal.

Ask for positive reinforcement

Positive reinforcement from others is helpful – everyone needs encouragement, especially during recovery. You can also give yourself positive reinforcement by writing down encouraging statements or recording the positive parts of your day on an audio device (like a smartphone).

Attend therapy

Therapy is an excellent way to explore your feelings and your self-identity after brain injury. A psychologist or psychiatrist will help you work through what you’re feeling, focus on positive progress, and adjust to your new normal.

Be patient with yourself and others

Finding a new normal and re-forming a self-identity doesn’t happen overnight. You’re going to have a lot of ups and downs. Reflect on what can you do now that you couldn’t do a month or year ago, rather than always compare your current self to your pre-injury self. It’s difficult but being patient with yourself is one of the most important things you can do for your mental/emotional health and well-being.

It’s also important to be patient with others, especially families and caregivers. Everyone is adjusting to the changes in relationships and responsibilities. It’s normal to feel frustrated with others – you’re going through a lot. But try to remember that their whole world has changed as well, and they need your support and love too.

Celebrate your wins

It’s important to recognize your accomplishments, even the smaller ones: they are worth recognizing. For example, can you sometimes remember things without looking at your notes? Or control a strong emotion? Or feel a little more stable on your feet? Celebrating your wins will not only improve your mood, but it will reinforce how far you have come.

Find the familiar

While you shouldn’t compare where you are now to where you were before the injury, it’s okay to take comfort in the aspects of yourself you recognize or are familiar after your brain injury. It’s reassuring, and it’s helpful when building your new normal.

Try new things

Part of living in the new normal is trying new things and learning what works for you and what doesn’t. This can be done through rehabilitation or simply getting out there through community classes, social groups, or trying new hobbies. Recovery does not have to mean get your old life back as much as possible. It can also mean bringing new valued activities into your life.

Adjusting to the new normal

After a brain injury, things may never go back to the way they were. It will take some time to cope with that fact and adjust to what many people call the ‘new normal’. The new normal may include your routines and abilities.

The term ‘new normal’ may not be the one you want to use. Brain injury recovery is challenging and full of ups and downs: normal may not be the word you would use to describe new routines or realities. We are using the term ‘new normal’ because it is widely used by healthcare professionals, caregivers, and individuals living with brain injury. 

Factors impacting the new normal

Recovery is different for everyone – that’s also something that doesn’t have a sense of normal. Recovery and establishing the new normal will be impacted by several factors, including:

  • Habits from before you were injured. Our habits – good or bad – are the building blocks of our daily life. Habits that you carry forward into your recovery or that you pick up after your injury will mold your day-to-day routines
  • Location and severity of injury. The location and severity of the brain injury will play a large part in determining what routines will become a part of your new normal
  • Rehabilitation. Rehabilitation is an important part of brain injury recovery and can have an impact on your new normal depending on the kinds of rehabilitation you’re doing, how much rehabilitation you’re doing, and your commitment to putting rehabilitation techniques into practice outside of appointments

It took a long time to figure out what I needed…

The new normal will not happen right away

When you first sustain your injury, you may feel like you’re getting too much attention from your healthcare team, family, and friends. But eventually you won’t have as many tests or appointments, and you might feel a little invisible. Many people feel stuck in place and become more physically and socially isolated. But socialization and interacting with others is not only important to your mental health, but in establishing your new routines and finding out how your life looks moving forward.

The new normal isn’t something that will happen when you leave the hospital or rehabilitation centre. Chances are your new normal will change several times, and that’s okay. It’s a long process often lasting years that involves rehabilitation, support from family and friends, and coping with the changes you’re experiencing. It’s important to be patient with yourself and the people involved in your recovery as you all discover it together.

I was told things would get better over time

If you’re having some trouble coping with recovery and the changes you’re experiencing, you may want to consider finding support groups or a therapist. Support groups and local brain injury associations are an incredible resource. Other people who have gone through similar experiences can share what they’ve learned and offer advice. Therapists can offer the same kind of support. The important thing to remember is that there is no right or wrong way to move through recovery and establish new routines. Everything you’re feeling is valid, and you only need to focus on doing what works for you.

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. 

How family & friends are impacted

Brain injury impacts a family and community, not just the injured person. This includes their routines and their emotions.

Shock
Brain injury is unexpected for everyone, including family members. They may experience a period of shock when they find out about the injury. They may also be shocked when they see the impact to your behaviours, emotions, and abilities. Shock may make it hard for them to see how significantly the brain injury has affected you. Friends and family members are trying to understand what’s happened, may have trouble processing their thoughts, and could even feel physical fatigue. But shock is temporary: it will vary for different people, but it will go away. Make sure to talk with your family about what’s happening – it’s good for all of you to be open and communicate about brain injury.
Frustration
Frustration often is in a cycle with guilt, hope, and helplessness. Friends and family may experience frustration with themselves, with the situation, or even with you. It’s important to remember not to take this frustration personally; they are doing their best to be patient and to adapt, but nobody’s perfect.

If either you or a friend/family member are experiencing frustration, take a few deep breaths and try to share why there’s frustration. Talking about and understanding the cause of frustration is a great step towards diffusing it.

Grief
A brain injury is life-altering, and it is normal for both you and your friends/family to experience grief surrounding the changes in your abilities and your identity. Not everyone will experience all the common stages of grief, and they may not experience them in order.

Guilt
A family member or a friend will most likely feel a lot of guilt connected to your brain injury. It’s a stressful and sometimes confusing emotion that goes hand in hand with frustration and helplessness. They may feel guilt that they get frustrated with you, that they feel they don’t spend enough time with you, even that the injury happened to you and not them. Grappling with guilt is complicated, and it may benefit all of you to speak with a professional therapist.
Helplessness
Family and friends often want to help, but don’t know how. This leads to them feeling helpless. Those feelings of helplessness can become hopelessness quickly. After a brain injury, chances are you will need some help – so let your friends and family members know what you need. Not only will you be supported, but you’ll show friends and family how best to support you.
Hope
As you move through recovery, it’s important to focus on the positives. Your friends and family members will feel hopeful when they see your progress. While celebrating progress is fantastic and well-deserved, it’s important that you all understand that things may not go back to the way they were before the injury. Instead of comparing the then and now, focus on how you’re doing in the moment.
Role reversal & changes in responsibilities
After a brain injury, your partner, children, or other family members may have to take on more responsibilities around the house and for your continuing care. This may be a huge change for both you and your family members. You will be coping with changes in your independence, and your family will most likely feel stress as you all adjust. It’s confusing for everyone, but with time and thoughtful, positive communication, you will all adjust to this new relationship dynamic.

Withdrawal of social network
After a brain injury, you may notice that friends or distant family you saw often at the beginning of your recovery don’t visit as much as time goes on. Some may disappear entirely. This can be due to the changes in your relationship with them, coping challenges, lack of understanding of brain injury, and even stigma. Sometimes people stay away because they don’t know what to say or how they “should” interact with you, even though they would like to connect with you. While this is hard to face, it’s important to be patient with your social network and communicate how you are feeling to them. Talk to them about the changes in your relationship and what you need from them. In turn, listen to what they need and be patient: they’re also coping with changes.

You may also avoid people you know because you are tired of answering the “how are you?” question. Or you may put off seeing people until you are “better.” Or you may not feel like being around others, even if you can recognize that time with family and friends may be good for you. Losing interest in socializing may be a sign of depression.

Tips for coping with stroke

Use assistive devices

Assistive devices are meant to make rehabilitation and daily tasks easier. These devices could be:

  • Walking poles
  • Walkers
  • Canes
  • Wheelchairs
  • Software applications on computers or phones
  • Smart technology
  • Hand bars in the bathrooms
  • Railings

Arrange your environment

After a stroke and subsequent brain injury, your home environment may not be set up for you to act independently (at least at first). This can be hard on self-esteem and mean that you rely on caregivers for more things. Following an occupational therapist’s suggestions or advice on minor home environment adjustments can create a safe, practical living space that lets you be as independent as possible. Labelling drawers, getting special adaptive tools, or adding safety railings are all examples of home environment improvements that could be helpful.

Be patient

Stroke and brain injury rehabilitation will take a lot of time and commitment. You won’t see progress right away, and it’s easy to get discouraged. But by working with the rehabilitation therapists, breaking down big goals, and with time you will move forward.

Focus on one task at a time

Multitasking requires a lot of focus, and it can be overwhelming – particularly if you’re struggling with attention at this time. When you try to do too many things at once, something could be missed or done incorrectly. By focusing on one task at a time, you ensure that you are completing that task safely and correctly. This is much more effective, particularly if the task is a rehabilitation exercise.

Get appropriate rest

Stroke and brain injury recovery requires a lot of energy. This energy often fades as the day goes on. It’s easy to get fatigued. By taking breaks and devoting some time to creating a good sleep routine, you can make sure you’re well-rested for the day.

Keep schedules and lists

Schedules and lists help keep you organized and track appointments. A schedule or list can also reduce stress because you won’t be worried about forgetting something. You can also use journaling as a useful way to track your progress, activities, and feelings.

Take care of your mental health

Mental health is an essential part of overall well-being, and an important aspect of brain injury recovery. It is a difficult, emotional and mentally stressful process, and there is a risk that you may experience anxiety, anger, or depression.

Plan for the long-term

After a stroke and brain injury, you may need help to complete activities of daily living (ADLs). It’s important to make plans for the long-term. You could have a caregiver, a personal support worker, move into short-term care or find a long-term care home. There are several options you can choose, and several factors you should take into consideration to make the decision.

Exercise and nutrition

Proper exercise and nutrition are important parts of health. After a stroke, you may have specific restrictions on what you can do and eat. Working with a dietitian and physical therapists will ensure you are getting the right nutrients and exercising safely.

For more focused tips on stroke and brain injury recovery, check out the Heart and Stroke Foundation website

Brain aneurysm

A cerebral aneurysm is when there is a bulge in a weak area in a wall of an artery that may leak or rupture. A bulging artery puts pressure on the brain tissue or nerves depending on where it is located. If it bursts – or hemorrhages – blood will spill onto the tissue between the brain and the skull. This can lead to hemorrhagic stroke, brain damage or in rare cases, death.

Brain aneurysm causes

Causes and risk factors of a brain aneurysm include:

  • Age – older individuals are more likely to develop aneurysms
  • Excessive alcohol or drug use
  • Family history/genetics
  • Gender – specifically, females are more likely to develop aneurysms
  • High blood pressure
  • Past aneurysms
  • Smoking

Aneurysms can develop after head trauma or infection – but these causes aren’t as common.

Symptoms of aneurysm

In many cases, there will be no visible symptoms of an aneurysm. When symptoms do appear, it is because the brain aneurysm has burst. The symptoms will appear suddenly. Emergency services should be called at 9-1-1 immediately. First-responders are necessary because they may have to use life-saving measures quickly. Symptoms of an aneurysm include:

  • Sudden, severe headaches
  • Blurred vision
  • Changes in speech
  • Neck pain
  • Nausea
  • Sensitivity to light
  • Fainting
  • Seizures

Brain aneurysm treatment and recovery

An unruptured brain aneurysm is normally found during unrelated tests/screenings. A ruptured brain aneurysm will be diagnosed using computerized scans and dye tests. Once a ruptured brain injury is diagnosed, there are a few different treatment options. Doctors will recommend the one(s) best suited to your situation based on factors such as age, location and severity of the aneurysm. These treatment options include:

  • Open surgery which enables the surgeon to place a clip around the base of the aneurysm, preventing blood from entering it
  • Endovascular surgery which happens within the blood vessels. It’s a smaller, less-invasive surgery to implant shunts or coils

Alternatively, doctors may recommend observation and spend more time monitoring the aneurysm.

Coping with changes after a brain aneurysm

A brain aneurysm can have a variety of effects depending on how much blood there is and the damage it does to the brain tissue or other arteries. There can be changes to cognitive and physical abilities, vision, balance, and more. It’s important to keep in mind that treating the brain aneurysm will not reverse the effects it has caused.

That means that once you’re in recovery, you may have to learn new ways to complete activities of daily living (ADLs).

See sources

Brain tumour

A brain tumour is an abnormal growth of cells within or around the structure of the brain. They can impact all areas of the brain and change how a person thinks, feels, and reacts. There are over 120 types of brain tumours, ranging from non-malignant (non-cancerous) to malignant (harmful or cancerous). In some cases, brain tumours can put pressure on surrounding tissue, leading to long-term effects.

It is unknown what causes brain tumours, yet family history, age, environmental exposure may be risk factors.

Signs and symptoms of brain tumour

Brain tumour symptoms vary from person to person and may appear overtime or all at once. Not every type of brain tumour will generate the same symptoms. The symptoms may also occur with other conditions, so may not indicate a brain tumour.

Common symptoms of a brain tumour include:

  • Behavioural changes
  • Cognitive changes
  • Dizziness or unsteadiness
  • Double or blurred vision
  • Frequent headaches
  • Hearing impairment
  • Morning nausea and vomiting
  • Seizures
  • Weakness or paralysis

Symptoms of a brain tumour will depend on the size and location of the tumour, and not everyone will experience all the symptoms listed.

A brain tumour is diagnosed by using a combination of neurological exams, magnetic resonance imaging (MRI) and computed tomography (CT) scans.

Treatment for brain tumour

Doctors will determine the best treatment for a brain tumour based on factors like:

  • Age
  • Overall health
  • Tumour location
  • Tumour size
  • Tumour type

For malignant tumours (such as cancer), surgery, radiation, chemotherapy, and immunotherapy are the most recommended treatments. For more information about cancerous tumours, including metastatic cancer, visit the Brain Tumour Foundation of Canada website.

In cases where surgery is not possible or the brain tumour is not doing any harm or causing any major symptoms, , doctors may recommend monitoring the tumour before making additional treatment decisions; this is called a “wait and see approach”. It’s important to discuss your available treatment options with the healthcare professionals about treatment.

Brain tumour recurrence

Sometimes a brain tumour can become ‘active’ again. This could indicate growth or change in the tumour. Normally this is discovered during routine checkups. If your tumour does come back or become active again, your healthcare team will determine the best course of treatment.

Tips for living with brain tumour

Ask for help & access support
You may need help from family, friends, or caregivers to complete activities of daily living (ADLs), get to appointments, or to run errands. But unless you ask, your circle of supporters may not know how best to help you. If there is something you need, you should always ask.

There are many ways to access support, whether that is one-on-one support, or attend a virtual brain tumour support group. Gain peer support in a safe, relaxed atmosphere from the comfort of your home.

Ask questions of your healthcare team
Your healthcare team has a wealth of knowledge about brain tumours, and they can help you learn all you can about yours. They can also keep you informed of treatment options and clinical trials for which you may be eligible.
Find ways to cope with cognitive, behavioural, and physical effects
The brain tumour may be altering your cognitive, behavioural, and physical abilities. This affects your activities of daily living (ADLs) and can mean that you can’t do things the same way you used to before your brain tumour.

There are ways to cope with those changes. For example, if you are experiencing memory problems, writing things down can help you keep track of tasks.

Learn about finding your new normal
With a brain tumour diagnosis comes a lot of change in your life. Nothing may ever be quite the same again. It will take time to adjust to your new normal, and you will experience strong emotions – even grief.

Learning what to expect when things are changing for you is a good way to pick up coping methods that can make transitions easier.

Take care of your physical health
A brain tumour is a health condition that can have many effects on mind and body. Eating a healthy balanced diet, exercising safely, and getting appropriate rest are great ways to take care of yourself.

Resources

Brain Tumour Foundation of Canada offers many programs, services, and support for anyone affected by a brain tumour. Their handbooks provide information about treatment options, long-term effects, and an overview of brain tumours. These handbooks are available in English and French (print copy shipped free in Canada or available electronically)

Adult Brain Tumour Handbook
Adult Brain Tumour Patient Handbook cover image

Order handbook

Non-Malignant Brain Tumour
Non-Malignant Brain Tumour Patient Handbook cover image

Order handbook

Pediatric Brain Tumour
Pediatric Brain Tumour Patient Handbook cover image

Order handbook

Brain Tumour Caregiver Handbook
Caregiver Brain Tumour Handbook cover image

Order handbook

See sources

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. 

Language & brain injury

After a brain injury, a person may find communicating more challenging. This includes speaking, listening, reading, writing, and understanding language.

Topics in this section include:

Aphasia

Aphasia is the term used to describe a language disorder. It is a common language problem that occurs after a stroke (which is a non-traumatic brain injury), but can occur from other causes such as traumatic brain injury and tumours [1].  Aphasia can impact your ability to talk, understand conversation, and read and write, which are all important aspects of communication. Someone with aphasia is often able to understand others or know what they want to say, but has difficulty putting thoughts into words or grammatical sentences. Difficulty communicating because of aphasia can lead to social isolation and be associated with lower quality of life [2].

Aphasia can range from mild to severe and can be categorized into several types. Working with a speech-language pathologist to understand your specific pattern of impairments and areas of strength is important. This can help to create your therapy goals and find the most effective ways to communicate with others.

This chart from the National Aphasia Association demonstrates common types of aphasia based on patterns of impairments.

Red and white chart of the different types of aphasia. Type of aphasia is broadly identified by answering yes or no to whether a person can speak, understand speech, and repeat what they hear. Created by the Aphasia Institute.

Please note that this diagram only shows a selection of types of aphasia. Since there are so many different combinations of language impairments, it’s important to work with a speech-language pathologist to address your specific needs. Speech-language pathologists are experts in the assessment and treatment of all different types of aphasia [3].

Tips for improving and supporting communication

No matter the severity of aphasia, communication challenges can be incredibly frustrating. Communication and social interaction are important parts of maintaining relationships and supporting mental health and well-being. Finding support, participating in therapy with a speech-language pathologist (SLP), and learning strategies to communicate with aphasia can help reduce the risk of social isolation and improve communication between family members, friends, caregivers, and health professionals.

Work with a speech-language pathologist (SLP)
A speech-language pathologist (SLP) specializes in helping people with language, speech, cognitive-communication, and swallowing difficulties. A speech-language pathologist can be consulted during the acute stage of recovery or at a later point in rehabilitation. Some people have even benefitted from working with a speech-language pathologist many years after their injury. Speech-language pathologists complete a comprehensive assessment, work with you to create a therapy plan, and help you work towards specific communication goals. It’s important to remember that recovery is different for everyone: while communication skills can improve over time, long-term difficulty communicating may persist [4].
Augmentative and alternative communication (AAC)
Augmentative and alternative communication (AAC) devices and technology are potentially a great way to communicate more effectively. There are both low-tech (e.g. paper or communication boards) and high-tech (e.g. electronic devices) options. There are several applications for computers, tablets and smartphones that generate sentences, translate text to speech, and more. Speech-language pathologists and occupational therapists on the recovery team will be able to determine if an AAC device is appropriate for you (taking into consideration any physical impairments, such as reduced movement of one arm) and make recommendations that best suit your needs.
Be patient
It’s incredibly frustrating to struggle with communication, especially if you haven’t had communication problems in the past. Communication often improves over time and you can also learn adaptive strategies to make communication easier and more natural, but it takes time and effort. Give yourself a break and be patient.
Focus on one task at a time
Multi-tasking can be tiring, and it can divide a person’s concentration. Divided attention can make it harder to find the right words. When you want to read, write, or speak with someone, try to reduce distractions and focus on one task at a time.
Join a conversation group, participate in activities and volunteer to practice
The more you practice a skill, the stronger it gets. Communication is a big part of recreational activities and volunteering. There are conversation groups offered by different community centres, hospitals, and programs to help you practice communicating. Often times these groups can be facilitated by an SLP, or a trained volunteer. By engaging in those activities, you get an opportunity to practice your communication skills. You also get a chance to socialize with others and may have the opportunity to connect over a shared experience, which can support your mental and emotional wellbeing.
Use notecards or picture cards
Someone who has difficulty communicating may benefit from using notecards or picture cards to help communicate. They can be used to let a communication partner know your specific communication strengths and communication challenges. Written aids or pictures can also be used to communicate important information (such as your phone number and address), answer yes/no questions, communicate frequently used phrases, and help identify what you need.

Reading

Reading skills are a component of language. People with aphasia may have difficulty understanding words they are trying to read. Reading plays a large role in activities of daily living (ADLs), and aphasia-related reading challenges can impact a person’s abilities to enjoy hobbies, understand medical forms, and more. A speech-language pathologist (SLP) can assess reading skills and make recommendations for therapy to improve your reading ability. Some people find that increasing text size, reading slowly, reviewing what you’ve read, and using a line guide can help with reading. Following a stroke, visual deficits or impaired physical movement of the hand can also impact your ability to read and write; for these concerns, you can also work with an occupational therapist [5].

Writing

People with aphasia may have difficulty with written language, which could include: spelling words incorrectly, making grammar mistakes, or writing the wrong word. These impairments can make communication, hobbies, and other activities challenging. A speech-language pathologist (SLP) can help by assessing writing skills, focusing on various evidence-based therapy activities  to target these skills [6].

Dysarthria

Dysarthria is the term used to describe a speech impairment where the nerves controlling muscles for speech are damaged. Just like aphasia, there are many different types of dysarthrias. One of the most common ways used to describe dysarthria is “slurred speech”. People with dysarthria may have muscular weakness, a smaller range of motion with their lips and tongues, difficulty controlling volume and tone, and problems controlling airflow. While dysarthria can happen on its own, it is common for people with dysarthria to also have some form of aphasia.

Apraxia of speech

Apraxia of speech is another motor speech impairment that can occur following an acquired brain injury (or may be related to another neurological condition). Apraxia of speech is related to problems with motor planning or organizing speech. People with apraxia of speech make errors in the sounds of the words they say and can have difficulty with their rate and rhythm of speech. Apraxia of speech commonly occurs along with aphasia [7].

A speech-language pathologist (SLP) can help you with your speech by creating an individualized therapy program specific to your impairments. An example of what this could include is: learning specific strategies, completing speech drill-based activities, or completing strength-based exercises. Your speech may not be exactly the way it was before you had your brain injury, but with time and practice, many people see improvements.

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Cognitive effects

Individuals with acquired brain injuries experience cognitive impairments that can impact them for the rest of their lives.

Topics in this section include:

Changes in cognitive abilities

Attention & concentration
Attention is being able to focus on something. There are several different types of attention, including:

  • Selective (focused) attention: This is being able to ignore distractions. Examples of challenges with selective focused attention may include being unable to focus when there are multiple people talking or being easily distracted while driving. Other examples include forgetting what you were going to get from the bedroom, or trouble preparing a meal.
  • Sustained attention: This is how long you can concentrate on an activity or task. Sustained attention depends on factors such as the task, how tired you are, and environmental distractions.
  • Spatial attention: This is your ability to be aware of specific locations in the environment.
  • Alternating (divided) attention: This lets you switch from one task to another without losing track of what you’re doing, and to keep track of several things at once. This may be difficult to do after a brain injury.
  • Attentional capacity (‘working memory’): This is how much information you can take in at once without getting overloaded and your ability to use that information. For example, the average adult can hear and repeat a 7-digit phone number but usually won’t remember it 5 minutes later. After a brain injury, you may not be able to take in as much information.
  • Prospective memory: This is the ability to plan, retain and retrieve an idea as planned. For example, if you need to run an errand, you need to plan to stop at the store, remember to stop at the store, and complete your errand. This memory can be challenging for someone with an acquired brain injury because planning can be difficult.

The changes in attention that can happen after a brain injury can make it hard to follow a conversation, hard to work, or make it unsafe to cook a meal or drive. In the early stages of recovery, you might not be alert enough to communicate or be fully aware of your environment. If you can focus on something, it may only be for a short amount of time.

At times, one small detail or focus on the wrong information may cause you to be distracted. These distractions could be internal: for example, you might be distracted because you need to go to the bathroom. The distraction could be external: for example, while talking, your attention may be on someone’s tone of voice or clothing rather than what they are saying. You could be trying to pay attention to words, how you look, noise from the street, and other activity in the room all at the same time.

If you can’t concentrate, it’s hard to finish a task. You might know what you need to do, but have trouble keeping track. We all have problems concentrating, especially when we’re tired or don’t feel well. For individuals with a brain injury, it can be so difficult to pay attention or concentrate that it’s hard to do even the simplest task like washing your hands or dressing.

Tips to help with concentration and attention

  • Ask people to repeat the things they say to you and break it up into small bits of conversation. This will help you absorb the information.
  • Break tasks into small steps.
  • Engage in hobbies or activities that you enjoy and can do. Card games, puzzles, and reading help develop concentration and are entertaining at the same time.
  • People who have trouble focusing may get tired quickly. Make sure you take short breaks to give your brain a rest.
  • Reduce distractions; have only one person in the room, turn off the TV or radio, and try to limit the number of things you’re doing at the same time.
  • Take away time pressures. Don’t rush through a task or expect it to be done perfectly.
Judgement and problem-solving
Problem-solving and judgment may be impaired after a brain injury. You might have trouble judging a situation, figuring out what the right response should be, or act on your first impulse. Your thinking style may not be flexible – in other words, once you make up your mind, it can be hard to change it.

Problem-solving skills are incredibly important for living independently and safely. You may need to work with specialists or caregivers to develop these skills.

Tips for judgment and problem-solving

  • Ask for feedback on your behaviour. You can ask your psychologist, occupational, or speech therapist for ideas on how to do this
  • Consider the possible reactions of people that would be affected by your decision
  • Make a list of choices – or ask your caregiver to give you choices – when it comes time to decide. For example, have your caregiver ask if you want to go for a walk, practice exercises or watch TV instead of asking what you want to do
  • Reduce distractions that could affect your decision-making process
  • Take extra time to clearly think about your decision
  • Try planning and reasoning out loud so you can more clearly think about your decisions. You can also have a caregiver listen to you and make suggestions
  • Work with a caregiver, friend, or family member on decisions whenever possible
  • Write down the important things to think about when making a decision. This gives you a guide to refer to during the process
  • Write down problems or situations from the past – they can help with decision-making in the future.
Language & communication
After a brain injury, it’s common to have trouble with speaking, understanding language, writing and reading. This includes:

  • Difficulty expressing yourself
  • Difficulty finding words
  • Difficulty understanding others
  • Trouble with conversation
  • Trouble with facial expressions or tone
  • Difficulty organizing your speech
  • Not being able to respond appropriately

These challenges can come from physical issues with control over your tongue, mouth and throat muscles. They can also arise from damage to the parts of the brain that control and understand language (this is called aphasia).

Tips to improve communication skills

A speech-language pathologist can help identify the best strategies for successful communication when a person has a brain injury, but there are a few general guidelines that can help you communicate:

  • Find a place where you feel comfortable talking and listening, where you don’t feel pressured or distracted
  • Don’t turn on a TV, radio, or other noisy items when you want to communicate with someone
  • Talk and listen to one person at a time. Group conversations can be overwhelming and hard to follow
  • If you don’t understand someone, ask them to repeat themselves or use different wording
  • Take your time to think and speak – there’s no rush

It is also important to show patience and understanding. This is an adjustment for everyone and tempers and frustration can run high. It’s normal to experience those feelings, but it’s important to make sure you are doing what you can to address those feelings appropriately.

Memory
Memory is generally divided into two categories: declarative and non-declarative. Declarative memory is things that can be clearly remembered such as specific past events (episodic memory) or knowledge and facts (semantic memory). Non-declarative procedural memory is memory that is retained as a skill or a motor response.

How memory is affected depends on the brain injury. Some individuals lose their memories of time before or immediately after the injury. Others are unable to make new memories, while still others forget skills or motor responses that used to be second-nature, although this is less common.

The most common types of memory loss after a brain injury are:

  • Short-term memory loss: This means you can’t remember things that just happened and are often influenced by problems with attention.
  • Amnesia: This most commonly refers to loss of declarative (episodic) memory after damage to specific areas of your brain’s memory system. Amnesia can be divided into anterograde and retrograde.
    • Anterograde amnesia: This means the inability to form new memories, after the time of injury, and is often the result of short-term memory loss.
    • Retrograde amnesia: This means you’ve forgotten what happened before your brain injury.

On rare occasions, a person with memory loss may remember things that did not happen or twist events. This is called confabulation, and it’s done automatically without the person realizing it: they don’t know that they are making up information and tend to not fully recognize the impact of their brain injury.

Problems with memory can affect progress in all areas. If memories fade quickly, you won’t be able to learn from new experiences, remember that you’re making changes or remember that you’re improving. This can have a huge impact on rehabilitation. In therapy, you’re learning mobility skills, how to use assistive devices, how to communicate and how to process information. If you have trouble remembering what you learned from one day to the next, progress may be slower.

During the assessment stage of therapy, therapists will test memory for events that happened:

  • Before the accident (remote or retrograde memory)
  • In the past few minutes (immediate memory)
  • In the past few minutes, hours, or days (recent or anterograde memory)

Immediate and recent memory tends to be more affected by a brain injury than remote memory.

Memory recovery is often slow, and in some cases a person may never fully recover. This can be incredibly frustrating and upsetting for both you and family/friends. It’s important to be gentle with yourself, and as you cope with the changes surrounding your brain injury that you do what you can to take care of your mental and emotional health.

There are steps you can take to help with any memory changes you may be experiencing.

Tips to help with memory

  • Be patient with yourself. It’s frustrating to not be able to remember things, but you’re working hard. Take the time you need, ask people to repeat themselves if needed, and be kind to yourself when you’re working on your memory
  • Choose activities that are familiar to you – this will help you form memories, and create enjoyable experiences
  • Having routines helps all of us remember, so consider creating routines for events that are repeated everyday, like when you have meals or where you put the housekeys
  • Try to use one calendar system for keeping track of events, rather than several different systems in different rooms or situations
  • Use any calendar or routine consistently – consistency helps make habits and avoids confusion
  • It’s a good general rule to write things down if you need to remember them. Have paper and a pen or pencil with you so that you can write down important points, or ask the person with whom you’re speaking to write down what they want you to remember
  • You can buy devices that shut off stoves and other appliances automatically. This can help to prevent safety hazards
Planning skills
Many people with a brain injury find it hard to plan, begin, and finish an activity. You may not be able to think ahead or lack follow-through to finish a task. Your thinking may be disorganized and incomplete. This may show up as repetitive movements or comments. You might act impulsively by doing something quickly without thinking or need a lot of time to understand information and respond the right way.

Planning is an important part of building independence. For example, you need to be able to do laundry, so you have clean clothes. This means you need to know when to add soap, how to set your washing cycle, and how to set your drying cycle. You may not be able to plan out all the steps right away, but by setting goals and working with rehabilitation specialists, you can develop your planning skills.

Tips to help with planning

  • Break down the task into small steps. For example, when making a salad, first prepare the lettuce. When this is done, proceed to the next step, and so on
  • Have a caregiver, friend, or family member clearly and briefly explain the activity before you start
  • Read instructions or have directions read to you slowly so you have time to understand and respond
  • Reduce distractions, reduce the demands, and give yourself extra time to problem-solve
  • Routines and schedules outlining future events help with better organization
  • Use a checklist so that you can check off each step of a task as you do it
  • Use a calendar or whiteboard to provide visual cues and reminders
  • When possible, help with household chores (as much as you can do). Things like setting the table, washing the dishes, or preparing a salad need planning but may be familiar enough that you can do them easily. These kinds of activities will help you practice step-by-step planning
  • Daily activities tracker
Self-awareness
It’s common after a brain injury for a person not to be as self-aware as they were before. For example, an injured person may not be aware of what they can’t do anymore. They may not notice or remember the changes in themselves, be in denial, or grieving those changes, which are emotional responses. Or they feel pressure to return home or return to work even if they are not completely ready. This may lead to the person overestimating their abilities and underestimating their problems.

Self-awareness is difficult to spot in yourself. This is when you need the help of therapists, caregivers, family, and friends. Your support team will help you figure out the best ways to receive feedback and identify ways to improve self-awareness. For example, perhaps you’re more likely to listen to a sibling vs. a parent, or a doctor over a family member when receiving feedback.

It’s important to note that these symptoms of cognitive changes after a brain injury won’t happen in everyone. They can also happen for people with mental health disorders, the aging population, and people with different illnesses. People who experience cognitive symptoms following an acquired brain injury (ABI) should be referred to a neuropsychologist for formal neuropsychological testing that can provide insight into the root cause of the symptoms. These results and the profile of your cognitive needs will be used to create individualized treatment plans.

Cognitive rehabilitation and recovery

Every person is unique, and so is each brain injury. For that reason, it is impossible to predict how recovery will impact your cognition (thinking skills). Cognitive rehabilitation is a tool that can have a positive impact. Cognitive rehabilitation is a collection of treatments that work to improve a person’s cognitive functioning in everyday life after injury. A variety of different professionals are involved in cognitive rehabilitation, but the most common therapists are licensed Speech-Language Pathologists (SLPs) or Occupational Therapists (OTs). Sometimes therapy is delivered by a person called a “cognitive rehabilitation therapist” (CRT).

For cognitive rehabilitation to be effective, it must be designed specifically for your needs and your goals, with a focus on both your cognitive strengths and areas you find challenging.  Each person is different, which means rehabilitation plans needs to be as well.

Cognitive rehabilitation can be helpful even years after injury. It’s never too late to seek support to develop cognitive skills and address challenges you may be facing.

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Tips for aging with a brain injury

There are steps you can take to keep yourself as healthy and safe as possible as you age.

Do activities that are engaging and enjoyable

Keeping yourself engaged and entertained is good for your emotional well-being and your brain. This includes hobbies you enjoy, meeting with friends, and anything else that brings you joy. It’s also helpful to complete activities that pose a bit of a challenge. It stimulates your cognitive process, can have physical benefits, and can give you goals to work towards.

Have regular medical checkups

It’s important as we age to have regular medical checkups. Individuals often spend a lot of time in rehabilitation and treatment for brain injury, but the rest of the body needs checkups too. Medical professionals will give you advice on exercise, diet, and other parts of your overall health.

Make sure you’re in an appropriate living situation

In some cases, seniors are not able to live alone or at home. In these cases, long-term care homes may be the most appropriate option. Many long-term care homes are specifically equipped for seniors, making them a safe, and comfortable choice. Many are also equipped for individuals with specific needs, including the effects of brain injury.

If you are moving into a long-term care home or are completing rehabilitation while in a long-term care home, there may be some adjustments you need to make.

  • Establish new routines. Routines are a great way to reinforce memory, familiarize yourself with new places, and stay organized.
  • Create a plan for adjusting to the new environment.
  • Work with healthcare professionals on rehabilitation plans. You may have to complete activities and therapies a little differently in long-term care.

Make sure you’re well-rested

Fatigue is a common effect of brain injury. It’s also common in seniors; it takes more energy to complete actions or tasks. That’s why it’s incredibly important to prioritize a good night’s sleep and listen to your body. Take rests when you need to, and don’t overwork yourself.

Protect yourself from falls

If you struggle with balance or mobility or want to take extra precautions against falls:

  • Arrange furniture so you have plenty of space to walk
  • Avoid putting frequently used items on high shelves
  • Avoid wet, slippery floors, and don’t let water build up on walkways or driveways
  • Clean up any spills or dropped food right away
  • Have plenty of light so you can easily see where you’re going
  • Install gates and handrails on staircases
  • Keep drawers and cabinet doors closed
  • Never stand on a chair, a table, or any surface that has wheels
  • Remove clutter from your walkways outside, and keep the paths inside your home free from tripping hazards (boxes, books, clothes, toys, shoes, unsecured rugs)
  • Secure any cords safely out of the way
  • Wear shoes with good support and slip-resistant bottoms

Stay active within your community

Keep in touch with your friends, family, and community. Go for lunches, participate in community activities, volunteer, and stay in touch through phone calls, emails, and in-person get-togethers. You will reduce your risk of social isolation and cultivate a strong support system.

Take care of your mental and physical health

Staying healthy and active is an important part of aging. This includes eating well, exercising, and taking care of your mental health and wellbeing. There are many ways you can create a healthy lifestyle as you age.

  • Learning new, easy meals to make at home
  • Keep a journal to share your thoughts and feelings
  • Taking daily walks
  • Use appropriate correction equipment for hearing and vision loss. I.e. hearing aids and glasses
  • Use mindful meditation to help clear your mind

These ideas are just the tip of the iceberg. Find practices or activities that make you feel happy and fulfilled and work them into your routines.

Ways to find help after an opioid overdose

Meeting with a counsellor

Counselling is a positive step towards overcoming problematic substance use. Licensed therapists can provide one-on-one help and give concrete advice and practical tips towards change. Counselling is also beneficial for individuals with a brain injury who are learning to cope with the changes in their lives.

Help groups

Many cities have local help groups for substance use. These groups are designed to offer a supportive environment for people with living experience of substance use. Local healthcare professionals should be able to provide more information about support in a specific area and whether they can support specific needs post-injury.

There are also many brain injury associations across Canada that offer programs and resources specific to the area.

Residential rehabilitation

For those who need a different environment, residential rehabilitation centres are available. There are both private and public addiction centres in Canada. While public centres are free, they have long wait times. Private centres involve out-of-pocket expenses.

Please remember: not every centre will be equipped to meet the needs of a person with problematic substance use and brain injury. It’s important to work with a medical team to find the best course of treatment.

Supervised consumption sites

Problematic drug use is a complex issue with no easy solution. Many people struggle to stop. This is where supervised consumption sites can be useful. They are a place for people looking to stop or reduce their drug use, and research shows they are effective at improving health and saving lives.

Along with offering a safe place for consumption, many supervised consumption sites have screening services to catch potential contaminants, access to emergency services, testing for diseases/infections, and referrals/information on treatment (Source: Government of Canada).

Resources

Disclaimer: We cannot guarantee the accessibility of any resources not located on our website.There are no quick and easy answers to substance use problems, but there are resources for individuals looking for help.

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.