When you learned that your loved one was ill and would require an increased level of care, you never second-guessed springing into action to make sure they were taken care of. When learning that treatment options such as dialysis were available to keep your loved one healthy and make life possible, you never batted an eye when it came time to take them to their appointments. Managing meal preparation, medication regimens, chores, bills, appointments, working outside of the home, and daily tasks have all become part of the norm. You typically handle challenges and unforeseen circumstances in stride, but you may notice from time-to-time juggling all these responsibilities can feel heavy. This occurs especially when there has not been enough time devoted to self-care, rest, and sharing responsibilities with others. This experience is known as caregiver burnout and it is far too common among those caring for others.

Many caregivers value the opportunity to provide care for their loved ones and do so without a second thought. Often, caregivers may find that taking time to care for themselves becomes challenging and they tend to ignore their needs to everyone’s detriment.

What Causes Caregiver Burnout?

In treatment planning with our medical teams, our caregivers are often left out of consideration for care coordination, despite being the person who will be taking care of things. Things such as transportation to-and-from appointments on Mondays, Wednesdays, and Fridays, meal preparation for strict diets, monitoring fluid intake, refilling and ensuring medications are taken as prescribed, and helping with other activities of daily living are just some of the basic tasks caregivers are instructed to manage, often on their own.

When entering the world of caregiving, there are no roadmaps. Quite often, a diagnosis such as Chronic Kidney Disease is life-changing, unexpected, and challenging to come to terms with for everyone involved. There may be feelings of grief, fear, sadness, frustration, anger, and uncertainty that can feel overwhelming. Caregivers may find that they worry about their loved one’s health and wellness, whether they are caring for their loved one well, financial concerns, their loved ones’ physical needs, and how their many competing demands will be met. Your experience is quite common, “Today, more than 1 in 5 Americans (21.3 percent) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53.0 million adults in the United States, up from the estimated 43.5 million caregivers in 2015,” (AARP.org, 2020). Of note, the majority of these caregivers are unpaid and are related to the person they are caring for.

Not every person who provides care for their loved one will experience burnout, but the rates for those who do are staggering. So what contributes to the likelihood someone will experience caregiver burnout? Common themes I have heard from caregivers include:

• Feeling as if you are “on-call” 24/7

• Uncertainty around roles

• Lack of training

• Medical treatment requirements

• Appointment burden

• Feeling pressure to “do it all” and setting unrealistic expectations

• Limited support from others to help with care

• Family conflict

• Financial concerns

• Juggling numerous competing demands at once, such as childcare and working outside of the home

• General disruption to daily life and routines, as well as the future

• The caregiver does not devote time to caring for him or herself and puts everyone else’s needs ahead of his or her own. According to research, roughly 85% of caregivers do not receive the respite care services they need (Aging In Place, 2021).

  • Many view self-care as a luxury
    

According to the Family Caregiver Alliance (2016), on average caregivers spend the following amount of time completing tasks

The Family Caregiver Alliance also goes on to mention that, “Of family caregivers who provide complex chronic care: 46% perform medical and nursing tasks; More than 96% provide help with activities of daily living (ADLs) such as personal hygiene, dressing and undressing, getting in and out of bed, or instrumental activities of daily living (IADLs) such as taking prescribed medications, shopping for groceries, transportation, or using technology, or both,” (Family Caregiver Alliance, 2016).

Signs of Caregiver Burnout

The signs and symptoms of compassion fatigue in caregivers can often look like the following:

• Feeling guilty over taking time for yourself

• Avoiding friends, loved ones, and activities you normally enjoy

• Changes in sleep and energy

• Changes in appetite

• Difficulty with focus and concentration

• Irritability and mood swings

• Tearfulness

• Low self-esteem

• Difficulty handling stress

• Uncontrollable worrying

• Loss of motivation

• Physical pain, illness, or overall decline in health

  • According to the CDC (2019), “Over half (53%) of caregivers indicate that a decline in their health compromises their ability to provide care,” (CDC.gov, 2019).

  • According to research conducted by the APA, “among people age 55 to 75, those who are caregivers show a 23 percent higher level of stress hormones, which can lead to high blood pressure, and a 15 percent lower level of immune response, making them more vulnerable to the flu and other infections,” (AARP.org, 2020).

• Suicidal thoughts

• According to the DeAngelis (2020), 30.7% of unpaid caregivers reported “seriously thinking about suicide”, (DeAngelis, 2020).

• Increased use of drugs and alcohol

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Preventing and Coping with Caregiver Burnout

Acknowledge it: Call it what it is: Exhaustion. Lean into what you are feeling and become curious about what Recognize and accept that every person who provides care for another experiences these challenges to some degree. Feeling tired and worn down at times is a quite common experience for caregivers. Remember that just because you may be feeling down does not mean that you are not doing a good job or that you do not care about your loved one. You are doing the best you can and your loved one is so much better off because of it.

Manage your expectations: Some days are going to be “easier” than others. On those days, pat yourself on the back for being the superhero that you are. On the not-so-good days, you might find that you need to extend extra love, grace, and kindness to yourself. Be realistic in what you are able to achieve in the course of a day and what can wait until tomorrow or the next day. You do not have to do it all.

·       Prioritize your tasks

·       Know your limits

·       Say “no” to commitments, events, and people when you need to!

·       Abandon the need for control

Build your community of support: Whether you are a new or seasoned caregiver, having a network of both personal and professional support systems is critical. Quite often, fulfilling the role of a caregiver can feel isolating. Remember that you are not alone. Ask for help—and say yes to help when others offer it!

Places you can find support include:

• Dadvice TV

• Support groups for caregivers

• Friends, family, neighbors, church home

  • Share the caregiving responsibility with others

  • Connect with others

  • Lotsa Helping Hands

  • Take Them a Meal

• Your Social Worker

  • They can provide education on community resources, financial support, respite, and how to cope with your demands as a caregiver

  • Provide education on transportation options, such as Handivan, taxi services, and bus services

  • Can help assist you to determine whether they may possibly qualify for disability

  • Can assist you with finding options for caregiver training

• Your medical team

  • They can help you understand what to expect in terms of disease progression and prognosis. Will it remain stable? What happens if it changes over time?

• Your employer

  • You may qualify for Family Medical Leave Act or other options for paid or unpaid leave

• Community/National agencies

  • United Way

  • Meals on Wheels

  • Private hire caregiver services

  • National Kidney Foundation and other disease-specific non-profits

  • Phone: 855.NKF.CARES (855.653.2273) 

  • Email: nkfcares@kidney.org. 

  • AARP

  • National Institute on Aging

  • Family Caregiver Alliance

• Your loved one’s insurance company

  • Can assist with coordination of care and benefits, such as transportation, respite, caregiver services

• Books, podcasts, and research

  • The National Institute of Health conducts a lot of research around caregiving, illnesses, and mental health

  • National Caregiver Alliance also conducts research, helps with policy creation, increases public awareness, and works to create evidence-based practice programs

Spend time on self-love: Spending time caring for your loved one is an act of love. Give yourself the gift of love that you so freely give to others.

• Talk to yourself like you would talk to a friend. Tell yourself, “I know that what is happening right now feels difficult and overwhelming. I’m doing the best I can, and I will get through this.”

• Write positive, loving messages on sticky notes and place them around the house to remind yourself that you are amazing.

• Take the time to spend doing a hobby or an activity that makes you feel good about yourself!

Invest in your health: While you are a superhero, you are not invincible. With all that you are juggling, it is easy to frequently reach for unhealthy convenience meals, forget to drink water, and laugh at the idea of exercising.

• Schedule and keep your own medical appointments! While you are there, consult with your doctor on healthy diet and exercise recommendations.

• Eat nutritious meals and snacks

• Take your vitamins and medications as prescribed

• Sleep

• Practice meditation or relaxation techniques

• Listen to your body and treat it kindly

• Talk it out with a therapist. Mental health is a crucial component of wellness!

Outsource: Get creative on ways that you can utilize services to maximize your time on what matters most. Is there a task or activity that you just seem to struggle with getting to? Can a friend do the grocery shopping? Can you order a grocery delivery service? Can you pay a friend to come by once a week and do your laundry? If the kids need cupcakes for school, can you buy them from the bakery instead of baking them yourself to save time?

What ways have you found that caring for yourself has helped you with preventing or coping with caregiver burnout? What is one piece of advice you would like to offer to other caregivers who might be experiencing caregiver burnout?