Being a primary caregiver is both a challenging and rewarding job. In fact, it’s more than a job – it’s a lifestyle. A caregiver is someone who puts the needs of others first and increases quality of life. They support people with altered capabilities and give them the love and respect they deserve while keeping them safe and secure.
As a caregiver you spend a lot of time thinking of others. This is incredibly important and necessary for brain injury survivors who may not be able to think or do things for themselves. It’s also rewarding for you to be able to support that person. But it’s important to remember that you need to take care of yourself – specifically your mental, physical and emotional health. Caring for others is important, but it’s also draining. According to a study from Statistics Canada in 2012:
Among regular caregivers—those who spent at least 2 hours caregiving each week—38% of those who helped their child, 34% who helped their spouse and 21% who helped their parents reported feeling depressed. Those who cared for a spouse or child also reported more health and psychological problems, mainly because of the intensity of care provided .
It’s common for people who spend most of their time caring for others to put their own well-being to one side. This leads to an increased risk of physical, mental, and/or emotional challenges. You can love what you do and be happy you’re doing it while also feeling the affects that come with caregiving. That’s why it’s important for you to understand how caregiving can impact your health and how to care for yourself so you can continue to care for others.
Topics in this section include:
- The importance of self-compassion
- Building resilience as a caregiver
- Caregiver burnout
- Ways to improve your mental health and your wellbeing
- Resources for caregivers
- Caregiver fatigue
I feel guilty thinking about myself when they need my help.
This is something many caregivers feel - that they shouldn’t be focusing on themselves when there’s someone else who needs their help. When you are struggling with your mental health and overall wellbeing, other aspects of your life and the life of the person with an acquired brain injury (ABI) will be affected.
Self-compassion is another term for taking care of yourself. This is essential if you want to stay healthy. You can do this by treating yourself with kindness and being mindful of your feelings and your environment. Give yourself space and time to explore your feelings and acknowledge that caring for yourself is important.
Caregiving requires flexibility. There’s lots of unexpected challenges. As such, caregivers need to build up personal resilience. Resilience is defined as the ability to maintain well-being and effective functioning in the face of high levels of disruption. In other words, the ability to stay cool under pressure and to adapt to changes. This is a valuable skill for a caregiver, and there are a few ways you can build up your resilience.
- Connect with your support system. The stronger your support system, the stronger you'll be.
- Accept change. Many people find a lack of control stressful. By letting go of what can't be changed, and focusing back on things you can control, you'll build your resilience.
- Focus on positivity within your role. You are doing something amazing, and it's important to reflect on that often.
As a caregiver, you have many daily responsibilities. This includes, but is not limited to:
- Coping with challenging behaviour
- Household chores
- Personal hygiene and care - including bathing and dressing
- Lifting/physically moving the person in your care
This doesn’t include responsibilities involving family members or at your job (if you’re continuing to work outside the home). Over time, you may experience increased stress, physical problems or emotional challenges because of:
- The number of things you’re doing
- The time it takes to complete tasks
- The emotional and physical strains of completing tasks
- The struggles of adjusting to this new way of life
- Financial constraints
- The struggles of balancing work and caregiving
Caregiver burnout occurs when you reach a point of physical, mental and emotional exhaustion where you can no longer function. This can happen over long periods of time. In most cases, caring for someone with a brain injury is a lifetime commitment. This can contribute to the risk of caregiver burnout. If you are experiencing burnout - or feel close to it - it’s time to employ strategies to improve your personal health and wellness.
- Possible symptoms of declining mental, physical and emotional health
Caregiver stress and mental health issues can be identified through a variety of symptoms, including:
- Feeling of isolation, helplessness
- Frequent illness or sick feelings
- Irritability or resentment towards the person you're taking care of
- Loss of interest in personal needs and desires
- Mood swings
- Muscle tension
- Restless or disturbed sleep
- A sense of loss or grief
- Skipping meals
- Stomach problems
- Substance abuse
- Teeth grinding or jaw clenching
- Trouble focusing
Grief is common after brain injury for both the survivor and for you (particularly if you have a close personal relationship with the person). So much has changed for both of you, and there is a sense of loss that is completely normal to feel.
It’s not a quick process. There will be good days and bad days, and grief may linger for several months. While it’s normal to experience grief, it’s important not to let it consume you. With time, patience, and commitment to taking care of yourself and your friend/family member, it will improve.
- Learn to identify when you’re stressed
It’s important to recognize how you react to stress. You could see a change in appetite, bite your nails, clench your jaw, or experience increased muscle tension. These are just a few examples of ways stress can manifest.
Every day think about how you felt and the things you did - you can even write them down. By recognizing more clearly when you’re stressed, you’ll be able to help yourself.
- Prioritize and declutter your to-do list
Many caregivers try to do everything by themselves all at once. This leads to an overcrowded schedule and a lot of stress. By working on prioritization and understanding your time and capabilities, you’ll be less stressed by your to-do list.
Here are some tips for decluttering and prioritizing your to-do list:
- Make categories. Identify what is essential and time sensitive, and what is more long-term/less immediate.
- Keep a calendar. A calendar helps with organization and visualization of your schedule.
- Plan ahead. Instead of planning for a day or two at a time, plan multiple days or weeks in advance.
- Leave yourself some unscheduled time. Things happen during the day. By pre-scheduling in some free time, you won’t feel overwhelmed or anxious about finding time to complete something. If there are no surprise tasks, you’ll have some free time to do some fun activities with your loved one.
- Let old tasks go. Try not to carry old tasks forward to your new lists. This makes your to-do list appear longer and can promote a sense of guilt at letting a task go for so long.
- Set realistic goals
Part of reducing your stress and creating a prioritized to-do list is setting realistic goals. One of the quickest ways to stress yourself out is expecting too much from yourself. Some tips for goal-setting include:
- Break up big goals into smaller, bite-sized goals
- Make them specific
- Set your goals with a positive focus
If for some reason you don’t reach one of your goals, don’t get discouraged. Instead, look at why it didn’t work, and use your findings to help set your next goals. By setting realistic goals, you’re more likely to achieve them. This will reduce your frustration and highlight the progress you've made.
You can use these same tips to help your friend or family member with setting their own goals.
- Ask for help
There is a network of people - family, friends, and professionals - you can turn to if you need assistance for yourself or for the person with an acquired brain injury. People are often happy to help, and they just don’t know how. Tell people exactly what they can do to help.
- Say no
When you say yes to every request, it can lead to an overwhelming amount of responsibility and demand on your time. If there’s something you can’t do, say no. If it’s something that needs to be done but you can’t do it, ask a friend or family member for assistance.
- Join a support group
The brain injury community across Canada has many support groups. This includes groups for caregivers. Speaking and socializing with people who are familiar with your struggles gives you a new support system. You may even walk away with advice that can help you at home.
- Try relaxing activities
Relaxing activities are an excellent way to give yourself mental rest while improving your mood. While everyone has different preferences, here are a few possible activities:
- Crafts/hobbies like knitting
- Exercise classes
- Meeting up with friends
- Yoga and meditation
- Have a private journal
Many people choose to keep diaries or journals. Journaling can help reduce your stress as well as help you track symptoms of stress. Here are some tips on journaling for your mental health:
- Write as often as you can
- Write honestly
- Write in any style/format you want
- Take a respite
Respite means a short break or time away from something difficult. Being a caregiver is difficult, and everyone needs time for themselves. There are several types of respite care available.
- In-home: someone comes into the home as a temporary caregiver
- Facility-based: your loved one goes to a care facility for a temporary stay
- Day programs: your loved one has an adventure for a day
For more information on how these types of respite care work, review the Canadian Healthcare Association’s guide on respite care in Canada.
Costs for respite care will vary between the provinces and territories. The Government of Canada has compiled a report on publicly funded respite care in Canada.
Respite can be for a day, a weekend, or a more substantial length of time. There are many benefits to respite for caregivers, including:
- Less stress
- Improvements in your mood
- More time to rest, restoring your energy levels
- Time to explore personal interests
- Keep your other relationships going
It’s easy to lose touch with people when you’re a caregiver. By continuing to take time for other important people in your life - even if it’s just a few minutes - you’re keeping in touch and valuing people who support and value you.
- Attend counselling
Counselling is beneficial for with all kinds of experiences. Speaking regularly with a professional therapist will provide you with a constructive outlet for your stress and concerns. Their insight will be objective, and you can speak as honestly as you want.
- Adopt a pet
Not only are animals cute and friendly, but they have physical and mental health benefits for the owners. Studies have reported that pet owners:
- Felt less stressed
- Were more active
- Had lower blood pressure
- Socialized more
Pets can also be fantastic for the person living with an acquired brain injury. Having a furry friend can cheer them up, motivate them to contribute (if possible) to the animal’s care, and give them companionship.
Owning a pet is an additional responsibility, so it’s important to talk with other members of your household and take some time to consider this option. It isn’t the best choice for everyone.
- The Canadian Mental Health Association has a guide for caregivers. You can also reach out to them directly for support.
- If you’re in need of respite, the Government of Canada has produced this report on publicly funded respite programs.
- To learn more about respite care in Canada, check out the Canadian Healthcare Association’s guide.
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.