What do 43.5 million Americans have in common?

Answer: they are the “unsung heroes” that we call unpaid caregivers, meaning they are providing personal care for a family member or loved one – without any financial compensation.

Bound by selflessness and love, these caregivers are adults assisting aging parents. They are mothers putting aside career ambitions to care for a child with special needs. They are individuals watching over a friend facing a long road ahead after a life-altering car accident. They are senior citizens caring for ailing spouses.

43.5 million caregivers. That is 34x more than the population of New Hampshire alone.

Their impact is often unrecognized yet cannot be valued more. Caregivers assist with a wide range of daily living – yet intensive – tasks such as showering, changing clothes or getting out of bed. Or they help with transportation, grocery shopping, cleaning and so much more. Caregivers also provide immeasurable emotional support for the care recipient, commonly helping them through depression, despair and anxiety, among other challenging thoughts and feelings.

Caregivers may take care of that person around-the-clock, for several hours a day or a few times a week. Nationally, caregivers spend an average of 24.4 hours per week dedicating their time, energy and assistance to that person. Nearly one-quarter provide 41 or more hours of care.  Caregivers span all age groups, genders, geographies and socioeconomic statuses.

The level of support and care provided may vary by caregiver and situation, but one thing is common among these 43.5 million individuals: caring for a loved one is hard work. It can be incredibly challenging, stressful and in some cases, unpredictable and frustrating, amid constant shifts between “good” and “bad” days.

While caregivers are committed, driven and determined on helping their loved one feel better, reduce pain or make a recovery, research shows many caregivers aren’t adequately prepared to deal with all the challenges and stress that come along with it. Other studies show caregivers assisting loved ones are at a substantially higher risk for health problems than those who care for non-loved ones.

Caregivers can often push themselves too hard, lose hope or feel discouraged, leading to a condition we call “caregiver burnout.” In some cases, burnout means the caregiver can’t provide adequate support for their loved one – because they are failing to do so for themselves.

What is caregiver burnout?

Caregiver burnout is a state of physical, mental and emotional exhaustion that may be accompanied by a change in attitude, often from positive and caring to negative and unconcerned. While some of that is caused by fluctuations in how the person receiving care is responding, caregiver burnout often arises when the caregiver attempts to take on more than they are capable of or when they start neglecting their own needs.

According to author James R. Sherman, there are three stages of caregiver burnout:

1. Frustration: In this stage, the caregiver becomes frustrated or disappointed over their loved one’s condition, particularly if they may be deteriorating or experiencing a setback. The caretaker might question why their quality of care isn’t yielding positive results or battle internally over what they could have done differently.
2. Isolation: It’s here the caretaker lacks a sense of purpose or feels criticized or underappreciated. They may detach from others. Their mindset in this stage: “No one can understand or sympathize with what I’m going through.”
3. Despair: The caregiver may feel helpless, confused or have difficulty concentrating. In this phase, they often neglect themselves and lose interest in life beyond their caretaking role. They generally lack an overall sense of joy or entertainment in their life.

What are the symptoms of caregiver burnout?

Caregiver burnout can be an invisible condition at times, but in some cases, it can be easily recognizable. Although this isn’t a full list, here are some common symptoms or warning signs:

Physical symptoms of caregiver burnout

• Muscular issues: The stress a caregiver experiences can cause their muscles to tense, making it difficult to relax. This can lead to body aches, headaches and backaches.
• Cardiovascular issues: Stress on the cardio system can increase chest pain, trigger irregular heartbeat or put the caregiver at risk for cardiovascular disease.
• Respiratory system issues: Stress often causes rapid breathing, and in some cases, triggers asthma.
• Digestive system issues: Elevated stress hormones can cause stomach aches, acid reflux or ulcers.
• Liver issues: Under stress, the liver releases too much glucose in the bloodstream, which could potentially result in liver disease over the long-term.
• Central nervous and endocrine system complications: High adrenaline and cortisone levels can pave the way to difficulties with focus, concentration and organizational tasks.
• Immune system problems: A weakened immune system can lead to a higher susceptibility of developing colds or the flu.
• Fatigue, hair loss, sleep problems
• Periodontal disease
• Sexual and reproductive issues: Prolonged stress can lead to sexual dysfunction, reduced sex drive; menstruation and menopause issues (for women);  and erectile dysfunction or infections of the prostate (for men)

Mental & emotional symptoms of caregiver burnout

• High levels of stress and anxiety
• Impatience
• Frustration
• Hypersensitivity or oversensitivity
• Memory loss
• Feelings of being trapped and alone
• Feelings of wanting to run away
• Feeling guilty when engaging in their own care
• Feeling depressed or hopeless
• Emotional withdrawal
• Loss of compassion, hope or meaning
• Or if the burnout gets worse, resentment to the care recipient – which can lead to mistreatment or neglect

Spiritual symptoms of caregiver burnout

We don’t often talk about caregiver burnout being a spiritual issue – but it can be. Often, the caregiver finds themselves questioning how their role as a caregiver fits in the overall purpose of life. A caregiver in stress asks difficult questions – why am I doing this? How do I make sense of it? Who hears me? Does God care about me? Does he listen to my prayers?

While being a caregiver is driven by love and concern, this not only means love and concern for the person they are caring for. It means love and concern for themselves, too.

If you are worried that someone you know may be experiencing caregiver burnout, talk with them, listen to their concerns and, if appropriate, encourage them to seek help.

Although caregivers are devoting their lives to helping others, sometimes they need a helping hand too.

In the coming weeks, we’ll be talking more about caregiver burnout on the blog – what causes it and some specific solutions. Check back for more insight and recommendations!

Janice D. MacKenzie, LICSW is a Licensed Independent Clinical Social Worker for Catholic Charities New Hampshire’s Counseling Services, with 20 years of experience in the field of mental health. Janice provides counseling services to teens, adults and couples through a strengths-based, cognitive- behavioral and client-centered approach to therapy. She can be reached at jmackenzie@nh-cc.org.