Caregiving: It’s an Inside Job

By Pam Miller

The year I turned 23, when most of my peers were starting their careers post college, I took the road less travelled and quit my first job to become an end of life caregiver for a family member.

There were a number of decisions to make when my stepfather became terminally ill with bone cancer. Chief among them was putting together a plan for his daily care. I had just started working full time at a manufacturing plant, crafting the descriptive words on random boxes of home products. But, as my mom and I discussed care for the man who had helped raise me since I was nine years old, it became apparent that neither one of us could emotionally tolerate the idea of putting him into a care facility. We brought Hospice on board, and two weeks later it became clear, that even with all of their resources, my mom still needed help. I quit my job, packed a bag, and settled back at home for an undetermined amount of time.

Learning the daily work of caring for a patient at home was overwhelming. As so many people who have been a caregiver to a family member know, it is exhausting, physically demanding work.

As weeks turned into months, sleep was less and less of an option. I pushed away anyone who would try to get me to take a break. I felt too much guilt, which now I see was borne out of a feeling of helpless frustration. Giving my all, I was helpless to change the circumstances or outcome of our situation. When my stepdad could no longer swallow, I took to swabbing his mouth with water. The nurses had told us this was part of the process, but I could not see how uncomfortable his dry mouth and lips made him and do nothing. So, despite no sleep, and that my legs and feet had never hurt worse in my life, I would stand there in the 95-degree heat of our unconditioned house in the middle of summer, and continuously swab water. I was out of my mind with grief, helpless to change the course of events. When finally persuaded to lay down in a bedroom, I began to laugh uncontrollably, which shortly turned to sobbing. I had pushed my needs aside for so long, ignoring what I needed to process, that every emotion came pushing out, leaving me an exhausted mess of a human. My heart broke further when I realized he had heard me crying, and was distraught over my well-being. I had turned myself into an emotional time-bomb, just waiting to go off.

This shared experience of caregiving as become a common story amongst millions of people each year.

“If caregivers are not healthy, mentally well-balanced and spiritually sound, then those for whom they care will suffer.”―Leeza Gibbons

According to a Merrill Lynch study eight in ten Americans say that caregiving is the “new normal” in American families. Forty million Americans are currently caregivers providing care for nearly 50 million aging or disabled adults. Caregivers must learn to care for themselves first and foremost.

Caregivers often take financial losses, have their own health deteriorate, as well as lose touch with friends, and have less time to care for their own needs and often, their own children. Frustration and resentment are difficult to handle, and often lead to increased feelings of guilt and isolation.

“Sometimes asking for help is the most meaningful example of self-reliance.”— Unknown

Here are a few suggested tips on how to manage caregiver well-being:

  1. Take time to process emotions. Whether journaling or meditating, checking in with oneself every day leads to easier decisions about what type of self-care is needed.
  2. Connect with other caregivers in a support group, in person or online. Members can share stories, ask for advice, and empathize with each other’s experiences.
  3. Create an easy-to-follow schedule for healthy eating habits, exercise, and regular sleep. These regular habits of health create a strong personal foundation that makes caring for others easier.
  4. Schedule regular preventative care appointments with personal physician.
  5. Forgiveness and grace for self are critical and allow the caregiver to avoid feelings of being overwhelmed.
  6. Explore techniques and products that can help with the daily tasks you perform for your patient.
  7. Take personal breaks. Ask for help. Research outside volunteer groups that can provide weekly breaks of an hour or two, one to two days per week, especially for those providing long-term care that is often associated with caring for those with disabilities.

The need for caregivers will only increase from here as our large baby boomer generation ages, more people survive strokes, more people need rehabilitation, more people deal with disabilities from aging, accidents and illnesses. According to SpinalCord.com, over 80% of caregivers asked said they would not change a thing in providing care for their person. It is a deeply rewarding experience and makes all the difference for the individual in need.

The most important thing for caregivers to remember is that their capacity to assist those that need help increases when they first make sure their own needs are met, and that they are practicing consistent self-care.

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[1] https://mlaem.fs.ml.com/content/dam/ML/Registration/family-and-retirement/ML_Caregiving_WP_v02g.pdf)