Chronic illness takes a profound toll on individuals. It’s also really challenging on their caregivers, often family members or friends who provide support through complicated health journeys. The role of a caregiver goes beyond physical assistance. It usually involves shouldering the invisible burden of emotional strain, advocacy, and the day-to-day challenges imposed by chronic illness and disability, including burnout, stress, and guilt. Here’s how to recover from caregiver burnout.
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What is Caregiver Burnout?
According to the National Alliance for Caregiving and AARP, there are millions of people in the United States caring for those with health challenges. Most of these caregivers have no formal training and receive very little support. Studies have shown that more than 60% of caregivers experience symptoms of burnout. The problem was further exacerbated during the COVID-19 pandemic.
The term was first introduced in the 1970s by psychologists Herbert Freudenberger and Christina Maslach to refer to the specific stress and exhaustion felt by those in caregiving roles such as healthcare professionals. In 2019, it was formally recognized by the World Health Organization, who now provide caregiver skills training for families with children with disabilities.
Taking care of someone else with daily tasks such as getting ready for the day, preparing meals, completing housework, and being in charge of transportation is a lot of work. Additionally, many caregivers are the sole or primary breadwinners and must manage their household finances. They may also be responsible for helping manage someone’s health, including booking and attending doctor’s appointments, picking up and dispensing medications, and advocating for the patient. As such, it is easy to become physically, emotionally, and mentally exhausted from taking care of someone else, leading to caregiver burnout.
This exhaustion can affect your ability to care for both yourself and the person in your care. As such, both your well-being and that of your loved ones can be negatively impacted. On top of caregiver burnout, many feel compassion fatigue. This is when a caregiver takes on the emotional stress of a person in their care, leading to a lack of empathy or care for the person you are supposed to be caring for. Compassion fatigue and caregiver burnout often happen at the same time.
Signs and Symptoms of Caregiver Burnout:
- Feeling constantly stressed, anxious, or overwhelmed
- Becoming easily annoyed, frustrated, or angry
- Feeling hopeless or depressed
- Denial about the severity of your burnout or the condition of the person you are caring for
- Losing patience easily and being unable to concentrate
- Becoming resentful of the person you are caring for
- Feeling guilt when spending time doing self-care or being away from the person you are caring for
- Feeling isolated, like you have no help or support from others
- Sleeping too little or too much
- Having a lack of energy
- Changes in appetite
- Eating unhealthily or binge eating
- Headaches or other pain
- Withdrawing from work and activities you usually enjoy
- Misusing alcohol or drugs
- Neglecting your own needs or health
Sometimes caregiver burnout becomes too much, and you may start resenting the person you’re caring for. If so, reach out for help immediately from friends or family, a healthcare provider, or mental health provider. Many hospitals have social workers just to help family members deal with all that comes along with providing care to a sick family member.
Reasons for Caregiver Burnout:
Anyone caring for someone else can experience caregiver burnout, including professional caregivers. This includes if you are looking after your sick parent, sibling, or child, or work in an environment where you have to care for others, such as a school, care home, or hospital. Here are some of the reasons for caregiver burnout.
1. Emotional Exhaustion:
Caregivers embark on an emotional rollercoaster as they witness the physical and emotional toll of chronic illness on their loved ones. The constant worry, empathy for the patient’s pain, and the weight of being a continuous source of support can lead to emotional exhaustion. Caregivers are often the only or primary emotional support to their loved ones, which can be a heavy burden to carry and lead to mental exhaustion and caregiver burnout.
2. Navigating the Healthcare System:
Caregivers act as navigators through the labyrinth of the healthcare system, scheduling appointments, coordinating treatments, and deciphering medical jargon. Caregivers often act as the intermediary between the patient and their healthcare providers, which requires a lot of time and effort. They often have to do just as much research into the illness and how to manage it as the person who is actually sick. I know of so many patients where their caregiver actually knows more about their illness than they do. While this is particularly true in some cases, where for example the patient is a young child, it can be present in all sorts of relationships.
Often if someone is very sick they may not have the energy or ability to research their condition and management, so do heavily rely on others to be able to do that on their behalf. This can contribute to caregiver burnout. For tips on tracking all of your health information, check out my post here.
3. Advocacy and Communication:
Explaining the intricacies of the illness to medical professionals, family members, and friends often falls on the shoulders of caregivers. They may feel protective of the patient, or want to remove that burden from them. As such, they need to learn a lot about the illness and effectively communicate about it to all sorts of people. This type of advocacy is a continuous process, which requires a lot of patience and resilience.
4. Witnessing Suffering:
Perhaps one of the heaviest aspects of caregiving is the intimate witnessing of a loved one’s suffering. Observing pain, discomfort, and the limitations imposed by the illness can lead to a sense of helplessness and sorrow. And then many caregivers feel guilty discussing this with the person they are caring for as they don’t want to impose additional burdens on them. It can also feel hard to connect to others who haven’t experienced similar things. Many parents of children with chronic illnesses bond with each other as they feel that others don’t really get it.
5. Managing Daily Life:
Beyond the emotional strain, caregivers often take on practical responsibilities, managing daily life tasks that the patient may struggle with due to their condition. This includes household chores, grocery shopping, financial management, and even personal care. Balancing these responsibilities while providing emotional support can become a delicate act.
Who is booking doctor’s appointments or calling the pharmacy? Who is dealing with insurance companies? Often this falls on the caregiver, which can lead to mental and physical exhaustion.
6. Financial Strain:
Chronic illness can impose a significant financial burden on both the patient and the caregiver. The costs associated with medical treatments, medications, and potential lifestyle changes can lead to stress and strain on the caregiver’s financial resources. This financial burden adds an extra layer to the toll on caregivers.
People with chronic illnesses or disabilities may have to stop working either temporarily or permanently. They may lose their insurance if they can’t work anymore. They may have to spend years applying for meager disability support, which can put a huge strain on their family’s finances. This leads to increased stress, which often exacerbates medical conditions. It becomes a vicious cycle and is a huge stress on everyone. They may worry about the fact that they can no longer work and fear becoming a burden if they can no longer contribute financially. Many caregivers may resent the patient if they suddenly become the sole breadwinner.
This is especially true during difficult financial times, like now when we are entering a cost of living crisis. Many families are worried about finances already and are having a difficult time making ends meet. Caring for someone with a chronic illness or disability often involves additional costs, and thus additional financial stressors.
7. Personal Sacrifices:
The role of a caregiver often necessitates personal sacrifices, whether in terms of career aspirations, social engagements, or personal well-being. Caregivers may neglect their own needs, putting the patient’s welfare ahead of their own. The weight of these sacrifices can accumulate over time.
Just like chronic illness patients often feel loss and grief, so can their caregivers. If you have to become a full-time caregiver, you may be grieving the loss of the life you thought you would have. It is ok to feel sad and angry.
8. Coping with Uncertainty:
Chronic illness often brings with it a level of uncertainty about the future. Caregivers grapple with their own fears and concerns while trying to provide a sense of stability for the patient. The weight of navigating uncertainty can be emotionally draining, especially when it has to be done for a prolonged period.
How to Recover From Caregiver Burnout:
Caregiving is a noble and selfless endeavor, but it can also be emotionally and physically draining, leading to caregiver burnout. Whether you’re taking care of a family member or working in a professional caregiving capacity, it’s crucial to recognize the signs of burnout and take proactive steps to recover. In this blog post, we’ll explore strategies to help caregivers rejuvenate their mind, body, and spirit.
1. Acknowledge and Accept Burnout:
The first step in recovering from caregiver burnout is acknowledging its presence. Understand that burnout is a common and natural response to the prolonged stress and demands of caregiving. Many don’t realize that they are struggling with burnout until it is very severe. Accepting this reality is crucial for initiating the recovery process.
2. Seek Support:
Caregivers often shoulder their responsibilities alone, leading to social isolation. Reach out to friends, family, or support groups who understand the challenges you’re facing. Sharing your feelings and experiences can provide emotional relief and help you gain valuable perspectives. Taking part in social activities is an important part of self care, and can help improve your state of mind on a regular basis.
You can also see if your friends or family can help make your life easier by dropping off meals or running other errands. Can they pick up groceries or prescriptions for you? Can they shovel your driveway or take another task off your list?
If you don’t feel like you have any friends or family to talk to or rely on, consider joining online support groups. These are great for both informational purposes and for personal support, which can allow you to be a more effective caregiver. Joining a caregiver support group can help you feel like you have a bit more control over your personal life, and provide a support system you may not have elsewhere.
3. Set Realistic Expectations and Boundaries:
Reevaluate and adjust your set expectations, both for yourself and the person you’re caring for. It’s important to understand your limitations and prioritize self-care. It is incredibly difficult and often impossible to be solely responsible for another person. You may not be able to do all of the caregiving duties yourself, and that is ok. Setting realistic goals will help alleviate the pressure and reduce the risk of burnout.
Establishing clear boundaries is crucial for maintaining your own well-being. Learn to say no when necessary and communicate your limits to others. This may involve delegating tasks or seeking additional support to ensure you’re not carrying the burden alone. It is important to set boundaries and take regular breaks to help manage your stress levels, physical symptoms, and quality of life.
4. Prioritize Self-Care:
Make self-care a priority in your routine. This includes getting adequate sleep, maintaining a balanced and healthy diet, and incorporating daily exercise into your schedule to care for your mental and physical health. Small acts of self-care can go a long way in preventing and recovering from burnout. Many caregivers feel selfish for taking time to themselves, however, it is a crucial step to be able to provide care to others. Fill your cup first. The stress of caregiving is high, and it’s important to engage in self-care to meet your personal needs.
Carve out time for yourself regularly. Whether it’s a short walk, a hobby, or simply relaxing with a good book, taking breaks is essential for recharging your energy and maintaining a healthy perspective.
Be kind and gentle with yourself. You may be caring for someone for a long time. And, recovering from burnout can take weeks or months, so building a routine that includes time for yourself is crucial.
5. Professional Help:
Consider seeking professional help from your doctor or through counseling or therapy. Being honest and open with them can help you get the support you need. A mental health professional can provide a safe space for you to express your emotions, learn coping strategies, and develop a plan for managing stress.
They can also help you discover other supports such as local organizations or state benefits. Many programs provide in-home care, including from nurses, healthcare aides, or social workers, who can help provide additional support.
6. Educate Yourself:
Invest time in learning about your loved one’s condition or the specific challenges you’re facing as a caregiver. Understanding the situation can help you feel more in control and better equipped to handle the demands of caregiving.
7. Respite Care:
Explore respite care options to give yourself short breaks from caregiving responsibilities. Respite care services provide the caregiver with a temporary break for a few hours, days, or weeks. Many community organizations offer respite services, which may give you time to rest and rejuvenate.
8. Plan for the Future:
Consider long-term solutions and plan for the future. This might involve involving other family members, exploring assisted living options, or researching additional support services that can help alleviate the caregiving burden.
The Toll on Caregivers
The impact of chronic illness burnout extends beyond the individual patient to their vital support networks — family members and caregivers. Being a primary caregiver is a demanding role that goes beyond physical care; it involves navigating the complex healthcare system, offering emotional or physical support, and often shouldering the weight of the patient’s struggles.
Caregiver burnout is a real and looming risk, as those providing support find themselves grappling with their own set of challenges. Witnessing a loved one’s suffering, managing medical procedures, and advocating for the patient’s needs can lead to emotional exhaustion and a sense of helplessness. The toll on caregivers is often underestimated, yet it is an integral aspect of the chronic illness narrative.
In acknowledging the toll on caregivers, it becomes evident that their role is both indispensable and challenging. Just as patients require emotional support, caregivers, too, need outlets for their own well-being.
Recovering from caregiver burnout is a gradual process that requires self-awareness, self-compassion, and intentional actions. By prioritizing your well-being, seeking support, and making positive lifestyle changes, you can regain balance and continue to provide compassionate care without compromising your own health. Remember, taking care of yourself is not a luxury. It’s necessary.
The simple act of caring is heroic.
Edward Albert