Caregiver fatigue

Fatigue is the feeling of being extremely tired or having no energy or motivation. As a caregiver for someone with a brain injury, you may experience regular fatigue because of the stress of caregiving, financial responsibilities, planning for the future, and managing a household or job. Not only will you experience fatigue from being a caregiver, but you may also be tired from your job outside of caregiving or from parenting if you have children at home.

In many cases, you can’t just walk away and take an unplanned break to give yourself time to recover. You may often be pushing through your fatigue in order to put your friend or family member first. Not taking the time for self-care, respite and supports can lead to caregiver burnout .

It’s important that you understand how fatigue can impact you, how scheduling breaks and respite can help, and ways to manage fatigue on an ongoing basis.

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Symptoms of fatigue

Fatigue is most commonly associated with feelings of exhaustion and lack of energy. Other symptoms can include [1]:

  • Being withdrawn
  • Blurry vision
  • Decreased balance
  • Increase in memory challenges
  • Irritability, anxiety
  • Loss of appetite
  • Lack of interest; lack of motivation
  • Slow speech
  • Shortness of breath

These symptoms can be alarming, particularly if you aren’t aware they could be connected to your fatigue. If you have questions about these symptoms or fatigue, they should be shared with your doctor.

Causes of fatigue

While there may be additional causes of fatigue for you, these are the most common ones.

Stress is a physical, mental, and/or emotional response to a situation, and is meant to get a person ready to take some sort of action. An example of this is an approaching deadline, making you work faster.

Stress is something everyone experiences, and in some cases (like meeting a deadline) stress can be good and easily managed. But many people, particularly after the life-changing experiences of becoming a caregiver to someone has had a brain injury, can experience stress that is overwhelming. Oftentimes, not being able to focus or cope with stress can lead to more stress. It’s a tough cycle that can cause both physical and mental strain. These levels of stress can be caused by environmental factors, social situations, or by internal factors such as worrying about finances or long-term planning.

When a person feels that kind of overwhelming stress, it can cause fatigue because the brain doesn’t get a chance to rest. Stress can also interfere with sleep, further reducing the amount of rest your brain gets. This kind of fatigue can strain your relationships and reduce your quality of life.

There are a few ways you can manage stress [2]:

  • Identify what is causing the stress. You might not be able to avoid stressors, but you can mentally prepare for them
  • Don’t avoid decisions. One of the main causes of stress is avoiding problems or decisions, which makes them bigger and more challenging the longer they go unsolved. One of the ways you can streamline your decision-making is to take big tasks and break them down into smaller, more manageable tasks
  • Ask for help. Seek out friends, family and mental health professionals to help support you
  • Do one thing at a time
Lack of sleep
Stress, poor diet, and poor sleep hygiene are just a few factors that can contribute to lack of sleep. When you don’t get enough sleep, your brain and body suffers.

Here are a few steps you can take to improve your sleep routines [3]:

  • Keep the bedroom only for sleep and intimacy – no other activities
  • Keep the environment cool and dry
  • Set a consistent wake-up/bedtime schedule
  • Make sure you get lots of natural sunlight during the day
  • Take some time for yourself to exercise. Avoid exercising right before bed, as this can make it more difficult to fall asleep
  • Avoid caffeine, sugars and alcohol before bed
  • Keep your bedroom dark while you sleep. Remove electronics, and use blackout blinds if too much natural light is entering the room from the window
If you are experiencing anxiety or depression, this can contribute to fatigue (and vice versa). Fatigue is one of the most common symptoms of depression [4].

Strategies to manage fatigue

There are some actions you can take to help manage your fatigue.

Ask for help
Fatigue can make it difficult for you to complete tasks and take care of others – let alone yourself. You may feel awkward doing it, but asking for help is one of the best ways to ensure you and the person with a brain injury are getting the support you need. Often people want to help, but don’t know how. By building a circle of care  – people who can support you and your friend/family member- and delegating tasks, you will have a stronger support system.
Talk to a therapist
Your mental health and wellness is important, and many days it may feel like you’re sacrificing parts of yourself for others. It’s exhausting and overwhelming, especially when you don’t feel you have anyone in your family you can talk to about what you’re going through.

A therapist is someone removed from your immediate situation that can provide an ear, advice, or recommendations to help you care for yourself  and manage your fatigue.

Create schedules to manage your day
Set out a schedule for activities, appointments, and tasks for each day. This will help both you and the person with a brain injury maximize your energy and stay on top of what needs to be done.

When building a schedule, try to do it the night before or in the morning. Your schedule should have the following elements

  • Built-in rest periods. One of the best ways to manage fatigue is to give an allotted time to rest. This is beneficial for both you and the survivor. If you know they need multiple rest periods a day, make sure these are included – and use them to rest yourself if needed
  • Schedule activities when the survivor has the most energy. For example, many individuals have the most energy after they wake up in the morning and much less energy in the evenings. This may be the case for you as well. By scheduling activities and appointments during the times you both have the most energy, you will minimize the risk that fatigue will interfere
Be physically active
There are many benefits to physical activity, and it often gets neglected by caregivers who have full plates and very little time. But even a short walk or a stretching session can help improve your mood [5]. It is recommended that you don’t exercise right before bed, as this can make it more difficult for some people to fall asleep.
Manage your expectations
You will need to accept that you don’t have super powers, and there’s only so much you can do in a day. When you have a lot of responsibilities, it’s easy to feel guilty or angry at yourself when things don’t get done. But that’s okay!

Instead of focusing on what you haven’t done, focus on what you are able to do. Setting weekly or monthly goals and prioritizing health and well-being can help with setting expectations.

Track your fatigue
While it can be difficult to identify triggers, it’s important that you learn what makes you feel fatigued: if you don’t, you may experience extended periods of fatigue or feel like you have no control over your energy levels. By keeping a journal of activities and feelings, you can more accurately identify periods of time where you feel fatigued. For example, at the end of a busy day you may find making dinner incredibly tiring. This could be a task you ask a family member to complete a few times a week to give you break.

Evaluate your environment
Some environments can increase a person’s fatigue. This includes places with loud noises, bright lights, overcrowding or that require a lot of travel. By understanding what environments cause fatigue and what environments work best for you, you can more easily anticipate and manage fatigue.

Additional resources

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