Look after your own needs when taking care of another

Written by Dianne Gray

We are reminded, with the way-too-early passing of 44 year-old Dana Reeve, wife of the late Christopher Reeve, of our own mortality. While most of us certainly would never trade a minute of being with a loved one who has NBIA, how often have we heard that we need to take care of our own health so that we can care for our loved one?

My own son, Austin, was diagnosed with NBIA in 1995 and passed away in February 2005 from complications of the disease. As caregivers, we face exhaustion and unparalleled stress, not only from caring for our family member with NBIA, but also as we strive to function in our various roles with other family members and friends. Life doesn’t stop because we are caregivers.

We also realize the clock is ticking to the time when we will no longer have our loved one to care for. The "just a little longer" theory comes into play as we convince ourselves that if we can simply get by another day or week, it will be over and then we can care for ourselves.

Yet the days turn into weeks, the weeks into months, and the months into years. In the back of our minds, we contemplate the questions: "Just how important is it to take care of myself anyway? Aren’t I being selfish? What do I have to complain or feel tired about?"

A recent nine-year groundbreaking study of 518,240 couples backed by the National Institutes of Health highlighted the importance of caring for the caregiver and the potential health effects for our nation's 44.4 million family caregivers. While the study focused on heterosexual married couples older than 65, the "finding could apply to almost anyone in a close relationship," stated Nicholas Christakis of Harvard Medical School, co-author of the study in the New England Journal of Medicine.

In the article, Christakis says, "the realization that the health of the people is interconnected could change how we view the proper delivery of health care."

So, how do we care for ourselves while agonizing over the pain and impending passing of our family member or friend with NBIA? Do we try therapy, exercise, alcohol, reiki, prayer, vitamins or medication? After talking with many other caregivers, I believe that most of us have tried some combination of these approaches at different times, as well as some we didn’t mention.

In my own 10-year-plus stint as a primary caregiver, I can tell you that watching my child in pain and caring for him was the most excruciating, exhausting, yet rewarding experience of my life. During that time, I did try to care for myself as best I could, but my friends and family will tell you that I was a walking, talking, sleep-deprived klutz just trying to get through the day so that I could get to the next day which, I hoped, would be better. What did that process do to my own health? Time will tell.

That said, I realized that some things did help and you, too, can find ways to maintain balance and a sense of sanity during this extraordinary journey of love and suffering. Evidence supports that if you are to make clear, sound decisions for your loved one, it is important to care for yourself as well.

However, it is equally important to be selective with your choice of self-prescribed help. One day I realized I needed a break from the intensity of the situation, and wanted to clear my head. With a nurse in the house, I set out on my bicycle thinking I would return refreshed after a brief ride. While heading out of the garage, I heard the cell phone ring, tried to reach for it and ran into a car in my driveway! The message there may have been that I needed more sleep, not a bike ride! Maybe humor was also the message of the day. I am sure the sight of me riding into a parked car (without injury) was plenty funny.

What worked for me at first was spending as much time with Austin as possible, exercise, prayer, being outdoors, and discussions with friends, family and clergy. Yet eventually, I found that none of those provided me with the real peace I needed at that time. I then tried meditation, brief travel with my daughter (which itself provided its own stress due to being away from Austin!) and watching Timon and Pumbaa with Austin, which made things better for me, even momentarily. Have you ever seen how funny those two can be? Even he laughed or smiled at their antics up until his last week of life, which helped to lower my stress, making me feel enormously better.

Unplugging the phone helped at times, as did the scent of lavender and an occasional dose of "chocolate therapy." I also tried a few minutes in the sun which in itself probably added a few more wrinkles and the potential for skin cancer, but who cared at that point? I just needed to get through the day without falling apart. Truthfully, sometimes there was simply nothing that would provide much peace. A realization washed over me – that this horrible disease, NBIA, was in charge, not me. Giving up perceived control did as much to alleviate stress as anything else I tried.

So, while we will never know whether or not cancer or an untimely passing is the result of an incredible stress filled journey as a caregiver here on Earth, we do know that caregiving is a job of love and sacrifice and one most of us do with commitment and passion, regardless of the effect on ourselves. Yet with that said, statistics show we indeed, need to balance our lives with some sort of respect and care for our own mind body connection so that we can take care of not only our loved ones, but also try to put our lives back together with some modicum of health, following their passing or even better, so that we live long healthy lives with them, in the event of a cure.