Caring for Caregivers

Stacy Schaplow was 27 when she got married on Sept. 18, 2010. She was happy and healthy other than a strange soreness in her neck that she wrote off as stress; after all, she was in a dental hygiene program and studying for her state board exams while planning her wedding to financé John. The day of the wedding she took a few ibuprofen for the pain and walked down the aisle in a stunning white dress and carrying a bouquet of white roses and green orchids with eight bridesmaids in funky plum purple dresses and peep toe pumps by her side. The two exchanged vows in an outdoor ceremony, cut their four-tiered cake together, and a few days later left for their honeymoon in Maui. 

It was on the sixth day of the trip while on their way to go wake boarding that Stacy had a stroke. She was rushed to the hospital via ambulance. The doctors told John that Stacy's vertebral artery dissected, causing a blood clot. Stacy was within the three-hour window of time in which doctors could administer Tissue plasminogen activator (t-PA). The drug dissolves clots by thinning the blood, but poses serious bleeding risks. Stacy had become unresponsive in the time it had taken to get to the hospital, so it was left to John—her husband of six days—to decide whether to allow doctors to administer the drug, which could either save Stacy's life or kill her. 

John, for the second time in a week, said I do, consenting for doctors to give Stacy the drug. She lived, but began bleeding in her lungs. She was placed on a ventilator, and John was told that if the bleeding didn't stop, the worst case scenario would mean removing one of Stacy's lungs. It took six days, but the bleeding finally stopped. The question that remained was how much neurological damage Stacy had suffered. "Being on the ventilator and heavily sedated, I couldn't communicate," Stacy writes in her submission to Tiffany Burke Photography's online Love Story Contest for a second honeymoon. "I tried communicating with the nurses and was told that I pointed to my ring finger and they knew then that I wanted my husband. When he got to my room, I squeezed his hand and he knew everything was going to be alright." 

Recovery would be arduous, and Stacy asked her new husband a serious question—whether, given her condition, he still wanted to be married to her. John asked back, "What kind of man would I be if I left you when you needed me most?"

Stacy is among those who found true love and a love who would accept the role of caregiver. To become a caregiver for a loved one is no small task. Relationships are complicated enough without the dynamic of one person depending on another for his or her health and survival. In the most serious of situations, both patient and caregiver are saddled with the loss of independence and ability. What the patient can not do for him or herself the caregiver must do, and the time and effort caring for a patient takes reduces the caregiver's ability to care for him or herself. 

The importance of caring for caregivers can not be minimized. A caregiver is a person who has, by choice or by call of duty, given him or herself to helping another person—but that caregiver is still human. According to a 2009 report by the National Alliance for Caregiving, more than 65 million people provide care for a chronically ill, disabled, or aged family member of friend during any given year. On average, these caregivers spend 20 hours a week caring for their loved ones, while 13 percent of family caregivers spend 40 hours a week or more. Many of these caregivers do not have the luxury of making caregiving their job and so are working to bring in an income in addition to providing care—73 percent of those caring for someone over age 18 in fact. Reports state that the stress of caregiving translates into three-quarters of family caregivers not going to the doctor as often as they should, nearly half of working caregivers reporting that an increase in caregiving expenses has led to using up all to most of their savings, with 40 to 70 precent of family caregivers showing clinically significant symptoms of depression. 

I have not been in the position of being a caregiver; however, I have been—and will continue to be—a caregiving recipient. My experiences have taught me about the humanness of my caregivers. Like Stacy, I had a stroke. Mine was at age 28 after a year and seven months of marriage. One morning I was a reporter on deadline. The next morning I was unable to walk. After a week in the hospital, I had mobility using a walker, but would run into walls. I had double vision with Horner's syndrome on the left side of my face and the loss of pain and temperature on my right side. For several months, the neurological damage was too bad to very actively combat. My husband would get me in front of the TV—which I saw two of due to the double vision—make provision's for snacks and beverages and then have to go to work. Upon his return, he would find me exactly where he left me. He would make dinner, help me bathe, and then set about taking care of the routine responsibilities around the house—doing laundry, cleaning, caring for our pets, etc. 

Fortunately, we did not then (and do not now) have children. I lost my job, which added stress to my husband's already profound sense of duty. Fortunately, my parents are part of my caregiving team, and from time-to-time I would go and stay with them for a few days in order to give my husband a break. He would stay home, watch TV, drink a beer, and enjoy not having me around. There was nothing mean about our arrangement. It was simply honest. Caring for me took a lot of his energy. In addition to always being sure to vocalize my appreciation for all he was doing, what I could do to help him help me was to allow him time to rejuvenate, to give him space and time to be himself, to breathe, to not be so damned responsible. One day I searched online for information about caring for caregivers. A cancer site offered up words like bittersweet chocolates on a silver platter—grief, loss, frustration, anger, resentment. These were the words that my husband and I were choking down without acknowledging their existence—for him. He had not yet grieved the vibrant wife he lost. He was frustrated that he could not fix me. He was angry at the world. And at times, he resented me and all the care I required. Each emotion was at once horrible and a relief to acknowledge. Each emotion was valid and human. We stopped pretending everything was alright, and we cried tears of grief, loss, frustration, anger, and resentment together. 

Three and a half years later things are better. Our lives as individuals and our life together changed with the stroke and continued to change as my health became increasingly complicated. While I recovered most of my function, there are still deficits, and since the stroke, I have lost a kidney, had three of four brain aneurysms repaired, and experienced a gastric rupture. My husband has been my caregiver throughout it all. Like Stacy, I have offered my husband a chance to get out. Like John, my husband has never taken me up on it. 

Remember to vote for Stacy & John's Love Story!