A STROKE SURVIVOR’S ROAD TO RECOVERY
In the blink of an eye, my life changed forever. In 1995 at age 33, I was the young, vital mother of two daughters, 18 months and 3 years old. I was in the full bloom of health, youth, and life. My identity was solid: I was Kate Klugman, the wife of a successful attorney. I was the pillar of my community, and I led a healthy lifestyle working out six days a week. There wasn’t a cloud on my horizon. My day planner contained no hint of impending brain stem stroke. But regardless of my plans for my future and the future of my family, on June 29, I went from all of the above to being virtually helpless.
My stroke left me with “locked-in syndrome,” paralyzing me completely. I had no access to my voluntary nervous system. I was shut off from the world, trapped in my body, and unable to communicate with anyone. My once-toned athletic body was now fighting for every breath. My husband and caregiver helped me fight back. Only after many fearful days of total isolation was I even able to blink.
Blinking for me was a landmark of epic proportions. It allowed me to let people know that I indeed was in there. I was alive. By blinking letters out on an alphabet board, I could share my fears, pain and eventual hope with others. After six weeks in ICU and another three months in acute rehabilitation, I was finally able to return home. I had beaten the odds for recovery, which, according to my doctors, was about one in a million. I planned to be able to walk out of the hospital on my own, a whole person-but it was not to be. I was discharged in a wheelchair, a brace on my left leg up to the knee and my left arm paralyzed. I was about to begin a year of outpatient rehabilitation, five days a week.
Even more devastating for me was the fact that I could not perform my usual duties as a wife and mother. At 33, like my youngest child, I was wearing diapers and learning bladder control. I was depressed, angry, and overwhelmed. I had worked so hard in therapy to regain my life. I had hoped that upon returning home, I would be able to take care of myself and be a mom again, but at that point I was far from being able to get by even with the help of my family. My parents lived in New Zealand, and now my husband was faced with finding home care for his disabled wife.
It became obvious that at least for the short term, I was going to need someone to not only assist me with my daily activities, but also someone trustworthy enough to help raise my daughters. I required more help that I would get from a babysitter or nanny. You can’t expect a nanny to have knowledge of occupational therapy, physical therapy, and nursing. I needed professional help. Not only did I require assistance to shower, dress, and make my meals, but I also needed skilled care to continue pursuing my therapy goals.
About two weeks before I was scheduled to go home from the hospital, my occupational therapist started talking to my family about my needs for home health care. Both my occupational therapist and my physical therapist accompanied me on a home trip. We walked through the house to see how much help I would require. Assistance getting in and out of the shower, transferring to my wheelchair, and safely eating were at the top of the list. Meals were problematic not only to make, but to eat as well. I still could only swallow with great difficulty.
To make it at home, I required a whole team of people to help me. I would need a vocational instructor, a nurse, a physical therapist, an occupational therapist, and, most importantly, I needed a full-time caregiver. That task could fall to none other that my loving husband, Steven, who was forced to shut down his law office to tend to me. I am so grateful that he was willing and able to do so. While I was still in the hospital, Steven assumed the role of captain of my health care team, and we began to assemble the needed professionals to help care for me when I returned home. We would soon learn that it would take more than one try to successfully do so.
Trying to find home health care was a difficult endeavor. It has become much easier since I had my stroke in 1995, partially due to the increased information available over the Internet. But nine years ago, I was faced with a cold list of names, agencies, and individuals about whom I knew nothing. Steven and I were both at a loss to know what to do. How does one judge the quality of care by solely looking at a name on paper?
We finally opted to go with the business that was run by my favorite night nurse, Ron. He was a great nurse, but unfortunately not as good at administering his home care business. Within a few days, we knew we were in trouble. We were then forced to choose from that list of names.
Steven and I began to assemble a team of people to help us. Using the yellow pages, we began calling domestic agencies. Many offered both skilled and unskilled workers, but we found that they usually did only one thing well. We relied on home health care providers and registries to find the skilled professionals we needed. I had to realize and accept that home care was different that hospital care. In my case, outpatient therapy was necessary, but I also still needed regular inpatient care. At that point in my recovery, I could not drive to the hospital for my therapy-the choice was home care or no care.
Through trial and error I found some people who worked well with me. With the assistance I received, my mental health improved as I saw myself making progress. I needed that boost to keep from feeling overwhelmed. It was an adjustment living at home as a disabled person. My ability to run up and down my own stairs was just a memory now. My body functioned differently, and it was difficult to accept that someone else now did the things I had formerly done for my daughters.
Depression was a daily contender for me. Weekly meetings with my social worker helped tremendously. I was able to talk about the fears I faced and find ways to incorporate my daughters back into my life. Slowly, my children accepted me in a wheelchair, and eventually they were fighting over who would sit in my lap.
As time progressed, therapy made me stronger, and I could move around with the assistance of a walker. My voice also became stronger, and I was able to hold down a conversation with my children. I started to regain some of my independence. My needs started to change, and I began to shift gears regarding my home care. I slowly reduced the hours of care I received. In the end, I transitioned out of home care and into outpatient care for my skilled therapy needs.
I still needed domestic help, and I am lucky to live in a state that provides home care to its residents. Marsha is paid by the state to come to my house twenty hours a week. She helps cook meals and takes care of routine tasks including cleaning, doing laundry, and grocery shopping. It is a good idea to know your state rehabilitation services; many states do offer help.
It has not been easy for me, but thanks to the help I received, I became an award winning author with the publication of my book, Kate’s Journey; Triumph Over Adversity. I also became a national spokesperson for the American Stroke Association and a professional inspirational speaker. If I can do this, so can anyone else who is suddenly disabled and opens herself up to receive the care and help she requires. Home health care was an invaluable component of my triumphant recovery.