The Caregiver’s Mental Load
Caregiving brings a variety of challenges that are unique to each person. One of the most common and significant challenges is the tax on your time and ability to manage stress. Juggling your care recipient’s everyday needs, medical care, financial and legal considerations, and more may affect your ability to think clearly and sustain your own energy level. As your loved one’s needs grow, managing the emotional burden and finding time for self-care can become more difficult.
Sometimes caregivers may be aware that self-care is important, yet they aren’t able to find the time or space to prioritize it. In this case, the caregiver may feel guilt around their perceived failure to practice self-care, says Simran Malhotra, MD, a triple board-certified physician in palliative care, hospice, and internal medicine and medical reviewer for Everyday Health. “Struggling to prioritize self-care is often a reflection of caregiving intensity and not personal failure,” she says.
According to the AARP-NAC report, 1 in 5 family caregivers rate their own health as fair or poor, and nearly 25 percent indicate their caregiving role has compromised their ability to care for themselves. Scientists who authored an article published in 2021 call the cumulative burden of this day-to-day stress on your body allostatic load. The heavier the load, the higher the risk of illness and disability.
The Challenges of Family Caregiving
While every situation is different, research finds many family caregivers face similar struggles. Among others, such factors include the following, according to the AARP-NAC report:
- Lack of Time for Self-Care On average, caregivers provide care for 27 hours a week. But nearly 1 in 4 put in 41 or more hours per week — the equivalent of a full-time job. This time is often spent supporting activities of daily living like getting in and out of bed, getting dressed, going to and from the toilet, showering, feeding, and dealing with incontinence. There’s also the need to communicate with healthcare professionals, advocate for your loved one, and manage medical, nursing, financial, and legal tasks. All of this work takes away time to care for yourself.
- Complex Medical Needs Many caregivers take on significant medical and nursing tasks, such as injections, tube feedings, and catheter and colostomy care. Most say they have no choice but to do it, despite having` little to no training.
- Inadequate Support The AARP-NAC report found that about 7 in 10 caregivers have no paid help, and many struggle to find affordable services. Navigating a fragmented and confusing healthcare system — often without acknowledgment of your role — can be frustrating and expensive.
- Employment Issues Most working caregivers say they have to take time off from their jobs to meet their loved one’s needs, sometimes resulting in a loss of benefits, depletion of savings, and need to delay retirement.
- Financial and Economic Strain About 3 in 10 caregivers have stopped saving, and nearly 1 in 4 have taken on more debt — effects that could have even more significant repercussions over years of providing care. Most say an income tax credit or program to pay caregivers would help.
- Loneliness Caregiving can be isolating, especially if you are living with your care recipient, they have high needs, or you’re in a rural area. Many people say caregiving can be a rewarding and meaningful experience, but 1 in 4 family caregivers also say they feel alone.
- Loss of Identity Caregiving can also eat up time and mental space once devoted to your own needs, interests, and social life. Research suggests that a result of caregiving for some is the loss of sense of self beyond the identity as a caregiver.
- Heavy Emotions Caregivers may experience complicated feelings about their relationship with their care recipient, such as resentment over the burden of caregiving, guilt over feeling that way toward a loved one, and worry and grief over their worsening health status. On top of this, they also have to help their care recipient manage their emotions and extend grace when anger and conflict arise.
How Caregiving Can Lead to Burnout
Caregiver burnout can hurt your ability to care for yourself and your loved one. Many caregivers neglect their health while caring for someone else. When health problems are left untreated, you and your care recipient can experience a dip in your quality of life. In rare cases, caregivers could even face their own health crises due to the stress of caregiving.
Signs of Caregiver Burnout
Symptoms of caregiver burnout include:
- Feeling overwhelmed
- Feeling alone or left behind by others
- Frequently feeling tired, worried, or sad
- Sleeping too much or too little
- Gaining or losing a lot of weight
- No longer being interested in activities you used to enjoy
- Easily getting irritated or angry
- Frequent headaches or body aches
- Coping with unhealthy behaviors like smoking or drinking too much alcohol
It’s important to remember that you deserve to be taken care of just as much as your care recipient does.
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