Caregiver Burnout: Caring for the Caregivers of the Chronically Ill

| Last updated on November 21, 2023

Caregiver burnout is the mental, physical, and emotional exhaustion resulting from the prolonged demands of providing care to sick loved ones – particularly for loved ones with chronic illnesses or diseases.

Caregivers typically tend to their loved ones in two places: at home, or at the hospital.

Without respite, family members, parents, and other caregivers may experience burnout while caring for their loved ones, especially if frequent trips to the hospital are a part of their loved one’s plan of care.

Caregiver burnout presents itself in many ways – but there are several common signs to watch for that will help you know if you or someone you care about is experiencing caregiver burnout.

Let this article be your guide to understand the many causes of caregiver burnout and discover some solutions for it.

Read to discover:

What is caregiver burnout?
What are the signs of caregiver burnout?
What contributes to caregiver burnout?
How to support someone experiencing caregiver burnout?
Compassionate care for your loved ones

What is caregiver burnout?

Caregiver burnout – otherwise known as compassion fatigue – is the emotional and physical toll on one’s body from caring for others.

Caregiver burnout can occur in family members who are caring for dependents like elderly parents, young children, or sick loved ones. Caregiver burnout can also occur in healthcare workers.

Taking care of others can have an impact on your health. The emotional pain of caring for another person can be both stressful and demanding, and it can impact your physical wellness.

Caregiver burnout may be experienced differently by individuals. Caregiver burnout may feel like:

Fear or anxiety that your loved one will come to harm under your care.
Anger or frustration that your loved one doesn’t appreciate your help.
Denial regarding the diagnosis or condition of your loved one.
Guilt that taking time for yourself is selfish.
Negativity regarding the situation you find yourself in.
Loneliness – you may feel secluded, or that you have no one to support you.

Caregiver burnout can take a toll on a caregiver’s body and mind. It is important to understand all that you can about caregiver burnout so that you can help yourself – or provide support to someone you care about.

What are the signs of caregiver burnout

Caregiver burnout symptoms may vary from person to person. However there are some signs of caregiver burnout that you should watch out for, such as:

Feeling helpless and powerless in the face of a loved one’s suffering
Reduced feelings of empathy or sensitivity
Feeling overwhelmed and exhausted
Feeling numb, detached, or emotionally disconnected
Loss of interest in activities you used to enjoy
Withdrawal from society and company
Increased sadness, anger, anxiety, or irritability
Difficulty sleeping and nighttime interruptions like nightmares
Physical symptoms like upset stomach or dizziness
Difficulty concentrating or making decisions
An increase in substance use as a form of self-medication
Neglect of your own self care

Experiencing these symptoms can make it extremely difficult to continue providing care to your loved one who depends on you.

It also means that you will have a harder time taking care of yourself as the caregiver.

It may feel selfish, but in order to meet the needs of others, it’s essential that you make the time to meet your own needs first.

What contributes to caregiver burnout?

Studies show that nearly 60% of caregivers experience the symptoms of caregiver burnout at some time in their lives.

There are many factors that can contribute to caregiver burnout, such as:

Medical stress. Learning complex medical terms to describe medical conditions and treatment can feel overwhelming. Fear of medical complications or prognosis can also be distressing for caregivers of chronically ill loved ones.
Emotional stress. Seeing your loved one in pain or distress is emotionally upsetting. Knowing that their condition may be long-term or lifelong can be extremely overwhelming.
Continuous care needs. Transportation to appointments, medicine administration, learning to use medical tools, needing to assist a person to change medical dressings or care for themselves – all contribute to continuous care needs, and can all lead to high amounts of stress on caregivers.

Financial strain. There are many costs associated with medical treatments, therapies, equipment, medicines, and transportation to medical appointments. These may become extremely expensive and can lead to stress.
Impact on siblings. Siblings may experience a disconnect from their own social lives as they are brought to urgent medical appointments rather than extracurricular events. Some children may feel like they receive less attention from their parents than their sick sibling.

Social isolation. Parenting can be a lonely experience at the best of times. Parenting a sick child can be even more so. The need to prioritize a sick child’s health needs may lead a parent to socially isolate themselves to avoid sickness. Spending large amounts of time providing care at home or in a health care setting may also prevent them from maintaining relationships and making new friends.
Navigating the healthcare system. Parents may need to advocate for their children within healthcare settings. This can be both complex and challenging as understanding medical jargon and coordinating care can be very difficult.
Parental guilt. Parents may feel guilty about their child’s lack of experiences due to their illness. They may feel that they are not doing enough to help their child. They may also feel helpless and hopeless because they can’t take the illness away.
Long-term planning. For children with chronic life-long illnesses, their parents need to plan far in the future in terms of their care, financial planning, insurance planning, and more. This can be both emotional and overwhelming.
Self-care challenges. It’s hard to find time for self-care as a parent – especially as a parent of a special needs child, like a child who is chronically ill. It’s important for parents to meet their own needs for physical and emotional well-being while meeting their children’s needs.

Which caregivers are most at risk of caregiver burnout?

Anyone who provides direct care around the clock to another human being is at risk of experiencing caregiver burnout.

The type of caregiver most at risk of burnout is the caregiver who doesn’t have enough support.

Parental burnout can take place in any family if the primary caregiver is not provided with sufficient time to meet their own needs. Caregivers need to prioritize their self-care in between caring for others, and as often as possible.

Caregiver burnout with chronically ill children

Caregiving can be extremely stressful. You are now taking on care of and responsibility for another human being. You may feel that you need to be aware of their wants and needs and challenges at all times so that you can provide care for them – and that’s not easy.

Providing care for a chronically ill child can be extremely difficult. No caregiver wants to see their young loved one suffering or in pain.

Caregivers who are caring for chronically ill children may experience:

Screaming or refusals when attempting to administer medicines (in younger children)
Refusal to assist in caring for vital medical devices (in older children)
Pain or crying during medical dressing changes, especially when adhesives are too sticky
Pleading and distress around being transported back and forth to medical appointments

Tip: For parents navigating frequent IV care for their child, download our Ultimate IV Care Kit for Kids to ease the process.

Special needs parent burnout

Children with chronic illnesses may also experience developmental delays or behavioural challenges that can make things particularly challenging for them – and for their caregivers.

Special needs parents may experience burnout if:

Their children have a developmental delay that makes it hard for them to understand the medical procedures or treatments.
Their children are not developmentally able to assist in meeting their own needs in terms of hygiene and medical care.
Their children are non-verbal and are unable to describe pains, discomforts, or needs sufficiently to ensure medical care is accurate and timely.

How to support someone experiencing caregiver burnout

Caregiver burnout may look different for each person, depending on what they are experiencing.

However, it is important to know that caregiver burnout can have long-term consequences if it is not addressed. Left untreated, caregiver burnout can lead to depression or anxiety that decreases the quality of life for both caregiver and loved ones under their care.

Whatever the situation may be, caregivers require support. Here are some suggestions to help manage symptoms of caregiver burnout.

How to manage caregiver burnout symptoms

Ask for help. Speak to a doctor, a therapist, and/or your family members. Let them know what you are going through and ask them how they can help you. Asking for help is not a sign of weakness, and it is not selfish. Your own needs must be met in order to meet the needs of others.
Self-care. Although you may feel busy, it is vital that you take time for self-care. Coordinate with health workers, friends or relatives to help give you a break. Make sure you eat well and get enough sleep. Exercise and meditate to help maintain your mood.
Local support. Check hospital bulletin boards or online forums for local support groups in your area. Connecting with people in a similar situation as your own can help to normalize your experience, and also reduce some of the feelings of loneliness you may be experiencing.
Be kind to yourself. When you feel overwhelmed, frustrated, tired and helpless, remember to be kind to yourself. What you’re experiencing is hard. Being a caregiver is hard. It doesn’t take away from your child or loved one’s struggle if you admit to yourself that you are having a hard time. Give yourself permission to feel exhausted, and start back at number one: ask for some more help so you have time to rest.

Compassionate care for your loved ones

If you have a child who is experiencing a chronic illness that requires regular medical treatments, you could consider using innovative medical dressings that prioritize patient comfort and skin integrity.

Healing shouldn’t hurt – and Covalon’s gentle vascular access dressings can help to reduce pain and worry during dressing changes - providing some relief.

Try the Covalon challenge – request free samples and experience our gentle vascular access dressings compared to traditional adhesive medical dressings for yourself.