|
Managing The Stress ~ Making The Decisions ~ Discovering The Meaning |
|
Caregiving |
Solutions To Your Caregiving Situations Throughout Your Caregiving Years |
|
|
|
|
|
|
|
|
Caregiving or Your Career? The mirror often holds the answer How do you make the best decision when it comes to your career and your caregiving responsibilities? We asked Joyce, a public relations executive, to share her story as caregiver to her husband and her daughter--as she continued to work and then later, after she left her job. What follows are our questions and her answers. Caregiving: Tell us about your husband and your daughter and about your role as caregivers for them. Joyce: My husband, Jimmy, had been an alcoholic for his entire adult life. We had been separated for more than four years when he was taken to the emergency room from the flophouse where he'd been living in November of 1988. His problems were myriad, but the official diagnosis was "anoxic encephalopathy," following two cardio/pulmonary arrests during his first three days in the hospital. The doctors told me daily that he would not last through the night. At the time, our eldest daughter, Sandi, 28, had just been diagnosed with metastatic cancer of the stomach. Marsha, 19, was a sophomore in college. Mikki, 17, was a junior in high school. I didn't immediately think about long-term care because all the medical experts said it wouldn't be necessary. I gave permission for Jimmy to be taken off the respirator on the fourth day after doctors determined that there was minimal brain stem activity. God obviously had plans that the doctors didn't know about. Jimmy continued to breathe on his own without assistance. Within a couple weeks, I began meetings with the hospital social workers to determine what type of care we could provide. Jimmy was in what is known as a "persistent vegetative state." There were no local nursing homes that could care for patients in his condition. Our choices were limited to a few specialized facilities--none of which were close enough to allow for visits and a close monitoring of his care. I knew that I wouldn't be comfortable if I couldn't monitor his care, so I decided to take care of him at home. The decision was the best for me, for the kids and for his mom (who was 75 at the time and determined she'd take care of him if nothing else could be worked out). Fortunately, Jimmy had very good insurance from his job as an engineer with a utility company in Detroit. They would provide home nursing care under major medical for up to two years. I went ahead and accepted a job offer from Gannett News Service to become Illinois Bureau Chief (in Springfield, Ill.) because I figured we'd need the pay increase and arranged to have Jimmy air-lifted from Providence Hospital in suburban Detroit to Memorial Hospital in Springfield. By the end of March 1989, Jimmy was released from the hospital at just about the same time as Sandi's condition worsened to the point where she was bedridden (still in Detroit) most of the time. Fortunately, my boss at GNS was also a friend and knew my family situation. I arranged to work from noon on Monday through noon on Thursday in Springfield while caring for Jimmy at night. I'd take an early afternoon flight from Springfield to Detroit each Thursday and spend the weekend with Sandi. I'd return to Springfield on Monday morning. By summer, I brought Sandi back to Springfield with me and set up the family room in my townhouse as a double hospital room. When Sandi had to be hospitalized the final time, she wanted to return to Detroit. She died in August 1989. In October, I accepted a promotion to assistant editor for the western region at GNS. I packed up all Jimmy's hospital equipment, along with Sandi's 12-year-old daughter, and we moved to Gannett headquarters in Washington, D.C. I continued my schedule of working during the day and caring for Jimmy at night until we exhausted all his home nursing benefits in 1991. For the next two years, we lived on Social Security and any freelance work I could get from home. We moved back to my hometown of Muskegon, Mich., (where the cost of living was a fraction of what it is in the DC area) into a tiny house that once belonged to my grandmother. Throughout this whole time, my family and Jimmy's family were ALWAYS available. While we lived in Springfield and in D.C., Jimmy's younger brother would come up from Georgia and spend several weeks at a time (he was a construction worker who was able to take off for long periods between projects). When we moved back to Michigan, my teen and young adult nieces and nephews would take turns "baby-sitting Uncle Jimmy" so I could shop or attend choir rehearsal or go out to lunch with friends. And my friends--bless their vicious little hearts--were absolutely adamant that I not give up those things. I learned to hate the bureaucracy involved in trying to secure any type of social service assistance. The first time I saw the 27-page application for Medicaid, I cried. If I, as a college-educated woman in my early 40's, was overwhelmed, I couldn't imagine the devastation faced by a 75-year-old woman trying to provide for an ailing spouse. I only wanted prescription coverage (Jimmy's meds ran about $400 a month). I decided I'd rather turn tricks than jump through the hoops the Department of Social Services set up for me. My family agreed. And we made it in spite of the bureaucrats. My most vivid memories? --The day Jimmy came home from the hospital. My parents and three of my five siblings came to Springfield to be with me that first weekend. When they got into their cars to leave on Sunday, I broke down into hysterical tears. It suddenly occurred to me that I was ALL ALONE and didn't have the slightest idea what the hell I was doing. I think it was the only time in my life when ABSOLUTE BLIND PANIC took over. My mom cried. My sister cried. We fell into each other's arms. My Dad and my brothers stood around looking totally uncomfortable and wishing they could be beamed up by a passing spaceship. (Hold on a minute--in case you haven't guessed, there's an elephant on my chest right about now and my glasses are getting steamed up with tears. That panicky feeling is one that recreates itself unexpectedly if you're not careful!) --The day Sandi died (August 12, 1989). I crawled into bed with Jimmy and just held him. I remember thinking that I must have been a bad caregiver or I wouldn't have lost her. --I asked Marsha what she wanted as her college graduation gift in June of 1990. She said she knew it was impossible, but that the only thing she wanted was for her whole family to be there with her. I rented a motor home, hauled Jimmy's hospital equipment into it and the whole family piled in and drove own to Macon, Ga. We made arrangements to bring Jimmy--bed and all--in through a loading dock and set up our own private medical facility in a box-like area on the mezzanine of the arena where the graduation ceremonies took place. --The day Jimmy died (August 13, 1993). We were alone together in my grandmother's little house. I closed his eyes, kissed him on the forehead and told him we'd come a long way together. Then I held his hand for about 15 minutes before I called my family and dialed 911. A feeling of peace came over me. I knew without doubt that everything medical science could do--everything prayer could do--everything love could do--had been done. And it was OK. (Excuse me--that damned elephant's back...) Caregiving: What happened that led to your decision to quit your full-time job (what was the catalyst)? Joyce: Jimmy's insurance benefits would no longer provide enough nursing care to allow me to work. I guess I'll mention here that some sixth-sense must have told me to be prepared. In spite of the doctors' poor prognoses, I had attacked the caregiver situation as though it were an investigative reporting project. I immersed myself in information about Jimmy's condition and about all the resources available. When I decided to care for him at home, I asked the doctors to arrange for me to be trained to care for him by staff at the nursing school (and they were WONDERFUL). During a couple of Jimmy's interim hospitalizations (during which I always stayed in the room), the doctors often mistook me for a private duty nurse. I had a strategic plan right from the start (including how to take care of ME) and I seldom deviated. As my friends put it, I was "on a mission." I became VERY focused--probably for the first time in my life. Ego and my natural competitiveness entered the picture. I was going to do this thing and do it better than anyone else in the history of the world. Caregiving: Where you worried about the impact of quitting your job on your future? Did you make any adjustments/provisions to ensure your future would be protected? Joyce: At the beginning, I never thought I'd end up quitting my job. The doctors all said Jimmy could not possibly survive that long. Of course, I'm glad he did--and I take some personal pride in that. By the time I had to quit my job, it just seemed a natural progression. The only provisions I made were those I had made for my own care from the beginning. I had become a stickler for making sure I had regular medical and dental exams. I stuck to a healthy diet and regular sleep pattern as much as possible. I also had begun seeing a therapist while Jimmy was still in the hospital. I recognized the decision to become a caregiver was monumental and the therapy was to assure that I had a place to touch base with reality and with myself periodically. I just had faith that I'd be OK. I had skills that were marketable (I'm glad I didn't have time to think about being over--40 or I might have panicked) and I was pretty confident that my family and friends wouldn't allow me to starve to death. Basically, I was egomaniacal enough (or stupid enough!) to believe that I was so talented that returning to my career would not be a problem. Fortunately, God takes care of fools, little children and old folks. I guess I must qualify in at least a couple of those categories. Caregiving: What advice, suggestions would you offer to family caregivers who may feel they must choose between their career and their caregiving? Joyce: Look in the mirror. If you can look that person in the eye after making your decision, then the decision is the right one, no matter what the career experts say or what family members say or what friends and neighbors say. If you can go to bed with that person you see in the mirror and sleep peacefully, you've made the right decision. Whatever that decision, make sure you take care of YOU.
Caregiving: Looking back, what are you most proud of as you reflect on your caregiving experiences? What wisdom did you gain that seems inherent in how you operate today (i.e., how are you different today because of your caregiving experience)? Joyce: I learned to ask for help. As a first-born, A-type personality with a Superwoman complex, that's no small accomplishment. Without my knowledge (at the time), I guess I set some pretty good examples for others (one young woman who sang in my choir interviewed me for her master's thesis in sociology on the power of faith and family support networks). I've learned to love absolutely and to act on that love. I don't put off visiting someone or making a telephone call or giving a compliment or saying "I love you" because I know that I may not have another chance to get it done. People comment that I must love to travel because I'm on the road so often. The truth is that I am the world's worst homebody. But I flatly refuse to be one of those people who has to say at the funeral of a friend, "You know, I thought about going to visit her about a month ago, but I just didn't get around to it." I have become an advocate for caregivers. Nothing pisses me off more than watching the "system" put caregivers through pain and torture. I have become viciously protective of the elderly and the disabled. I've learned that a change in financial circumstances is not terminal--inconvenient, maybe--but you can live through it...and with a fairly good humor. Caregiving: Did you find re-entry into the "world" difficult after your caregiving ended? What were your challenges? How did you overcome them? Joyce: I didn't know how to define myself after Jimmy died. I had been his nurse for so long, I couldn't remember myself as his wife or as my kids' mom or as an award-winning journalist or as a fair-to-middling decent gospel alto. I had continued to BE and DO as many of my normal life functions as possible, but I DEFINED myself as Jimmy's nurse. I was kind of lost. It took a while to get past that and I allowed myself that time. I continued to do freelance writing and public relations work for almost three years, so I could remain near my family in Michigan. I still needed the support system. One day, the person in the mirror kicked me in my ever-broadening behind and reminded me that I was not the one who had died. I took a long-term (6-month) freelance PR assignment in DC. From there, I went to work as director of a welfare-to-work program based out of a small college in Georgia. The social services folks just LOVED my attitude about bureaucrats! Caregiving: Tell us about your current job. What are the best aspects of your job? What do you enjoy most? Joyce: I'm an associate with a public relations counsel in Chicago. I took this job shortly after my father's death to, once again, be close to home. I'm less than a three-hour drive from my Mom. The job provides benefits that freelancing can't match and I'm getting to an age where pension points really matter. Besides, I'm doing something I'm good at. Caregiving: What are your future career goals? Joyce: I would love to be able to open my own firm with specialty practices in diversity communications, advocacy and community affairs. Since I've had a good chunk taken out of my peak earning years, getting rich might be nice, too. |
Ask
An Expert |
|
|
|
|
|
© Tad
Publishing Co. 1996-2003 |
