The Language of Caregiving

Caregiving is one of the few means by which we fall helplessly into a loved one’s pain, becoming their voice, swallowing their fears, soothing their regrets, and shaping their future. As caregivers, we know the distance between the life our loved one once lived and the one they’re living now is often so vast, that only fragmented memories can bridge the gap.

The disappointments are real. Your loved one decides to stop fighting because the nights are too long, or the world-renowned expert comes back with despair etched in their face. The times where a miracle becomes stillborn, and all that is about to be lost can’t be found, even in your best prayers. You think about quitting and yet, you as a caregiver, accustomed to unrelenting stress, keep giving.

Caregivers are continually filling in the gaps, so their loved ones can enter each hour feeling safe and having all their needs met. And yet, when caregivers think about their own day, mortality becomes part of their vision, and the gift of awareness becomes paralyzing.

While moving from dawn to dusk, burnout and despair can enter with little introduction. These dynamics can mean that caregivers are existing near a figurative faultline. As with any precarious situation, living on thin ice can lead to mental, physical, and emotional exhaustion.

And caregiver burnout is real—and the research supports this. An April 2021 research article published in The Gerontologist looked at caregivers during the pandemic. The researchers compared 576 family caregivers to nearly 3,000 non-caregivers. They found caregivers reported higher rates of depression, anxiety and disrupted sleep than non-caregivers.

I know I’ve felt depressed, anxious and sleepless as a caregiver. Although, I’m a licensed mental health professional, with prior caregiving experience with my (now late) husband, my role and duties as a caregiver for my (now late) mother during the pandemic were not only more terrifying, but also tugged at my heart in a different way.

There isn’t one fix to ameliorate the caregiver’s situation. However, using small things can help decrease the intensity. Here are 11 coping strategies to consider and to help with caregiver stress:

Acknowledge the losses. One of the reasons taking care of our loved one can be emotionally depleting is because we’re witnessing losses on a continual basis. Some of the losses are large, such as mobility, and some are what I refer to as micro-losses. These may include the loss of ability to reach for the faucet or loss of being able to recall a song title. To a health team, the micro-losses may seem unremarkable given the medical diagnosis; however, to a patient and caregiver these losses truly matter.

Practice self- compassion. With caregiving situations, one’s self-esteem can plummet because so many things don’t go as planned. Giving yourself grace becomes important since you know mistakes happen. Remind yourself that you’re doing the best you can given the intense strain you’re under. Your soul needs you to be kind to it.

Ask questions. While you may feel vulnerable at the mercy of a medical team, it is still acceptable to ask questions. Write them down if needed. You’re simply wanting to know if there are other options for your loved one and if they receiving all that is available. As a caregiver for both my mother and husband, I know many of the things they received as hospice patients came because I simply asked.

Use numbers to describe the physical and emotional pain. Using numbers (on a scale of 1 to 10 for example) to describe the patient’s pain can better help you to communicate with your medical team and your loved one. Also write down the numbers, even if it is in a text or email to yourself. Then, you can compare the pain levels from hour to hour or as needed. And be sure to do a self- check in with your own emotional pain using the same number system. If you notice you’re at a “ten” it may be time to take a moment’s break, even if it is to use the restroom to do a ‘mini rest’.

Name the emotion. Naming the emotion can help to calm the nerves because you’re identifying what is happening and then you are better able to guide yourself through it. When you’re in an emotional free fall, it can be scary because the outcome isn’t certain. Think about when there’s turbulence on an airplane, and there’s an announcement on the speaker from the flight crew. Passengers may not like the message being delivered but they feel more comfortable knowing what is happening rather than guessing. Guess work leaves the body and mind uncertain and that’s what can intensify the panic.

Engage in Prayer/Saying a Mantra. Caregivers often feel powerless for assuaging the pain and saying a mantra and/or prayer can provide a sense of calm, even temporarily. This randomized study found “participants receiving the prayer intervention showed significant improvement of depression and anxiety, as well as increases of daily spiritual experiences and optimism compared to controls.” With so much uncertainty surrounding caregiving, the words of a familiar prayer/mantra can add tenderness and empathy both to the patient and caregiver.

Ask for help. Seeking assistance with small tasks (such as meals, or errands) may not seem efficient, but it can help decrease the overall burdens. You can ask someone to help organize meals, group texts, for example, so you don’t have to manage every detail.

Understand you may be experiencing trauma. The brain and body tend to process a traumatic event differently than a pleasant, cheerful experience. Your body may feel tense, or you might find it difficult to recall a simple fact. For example, when I was in the emergency room with my (now late) husband, my mind was trying to literally process all that was happening. When a medical assistant asked me our address, I couldn’t recall it, but I could tell her all the results of his latest lab work from memory. Also, witnessing a sudden change in your loved one’s condition can be traumatic.

Breathe. There are many things you can’t control, so remind yourself of the things you can control, like your breath. Let the exhale be longer than the inhale. Entering the next moment in charge of your breath makes you better able to hand the waves of pain. Taking charge of your breath can help you hold back the edge of the darkness.

Reclaim your identity. If your caregiving journey is about to come to an end, understanding you’re know no longer a caregiver can be very emotional. It will take several days, even months to merge back into life. Realizing you are not the same person before your caregiving role is essential to reclaiming your other roles as mother, partner, parent, daughter, sister, professional, helper, business partner. Journaling and/or even working with a licensed mental health professional can assist you with the feelings of helplessness and vulnerability.

Seek guidance. We all need help on our healing journey and seeking professional licensed mental health services can offer the boost you need to gain clarity, hope, and process any trauma. It can also be helpful to have an “outside voice” helping you with sensitive matters. Your well-being is worth becoming a topic for an hour on your agenda.

Your story of a caregiver continues to unfold with the unexpected fears in your throat, the sounds of grief in your tears, and the voice of doubt vibrating in your chest. Stay with yourself through the tangles of disappointment. And stay with your loved one. Because the truth is: Your heart and your loved one’s heart is deeper for feeling your presence. Stay. Staying is an extraordinary thing.