Staying Active

As a long-term nursing home resident, I want to explain how I keep myself going both physically and mentally. To better understand, I will give you a view of my past. At age 19 I fell, cut my head, suffered a cerebral concussion, and damaged my cervical spinal cord. The injury resulted in hemiplegia (paralysis on my right side) and temporary garbled speech. After a 13 day hospitalization, I was sent home to try to recover. I lived with my parents who did my care, physical therapy, and took me to doctor’s appointments. It took a lot of work to keep me going and a great deal of mental fortitude. I managed to be able to walk but not able to get back to my prefall activity status or return to my job. Occupational therapists suggested I paint and do crafts to strengthen me physically and help my mental health. Physical therapists encouraged me to read by bringing me books, and I kept up on current events by reading newspapers and magazines. Then my parents became ill and life became more difficult. I walked less because of my parents’ fears of me falling. I began to use a wheelchair more, particularly to go out.

For years my parents and their friends searched for a secure place for me to live. But the only available options were nursing homes, intermediate care facilities, or group homes. None of them seemed to fit the bill for me. Back then I wrote a letter to my congressman explaining how my parents’ illnesses were affecting our lives. Soon after several state agencies wrote, called, or came to visit. I soon became involved with state rehabilitation. They sent me newsletters, grants, and books about disability issues and independent living. I also attended a conference and a local presentation about independent living, and learned how people with disabilities were improving their lives.

Fourteen years after my fall, my parents died within 35 days of each other. I moved to a one floor condo, which was adapted somewhat to meet my needs. I hired private caregivers to care for me. In a year, it became apparent that the funds my parents left me would not last long unless I supplemented them by getting a job. My state rehabilitation contact helped me connect to a local disability agency, and within six months I began volunteering. I was convinced I was on my way to a job.

My volunteering was slow getting off the ground. The agency was happy to have a volunteer, but I had to push to get something to do. I began by sorting file folders in my home. Then I started going to the disability office and spent time with another volunteer. We talked about living on your own with a disability. Before long I was asked to help set up the agency’s bookkeeping system. A couple of months later I was asked to serve as treasurer on the agency’s board of trustees. After an agency grant application was funded, I was hired part-time to coordinate it. A full-time job followed—my first in 16 years. Within a few months I was named director of the agency. In four years the agency’s budget grew from $50,000 to $110,000 a year.

Then, I took a part-time job at an Independent Living Center in Columbus, Ohio. Since I needed a caregiver with me at work, being employed was expensive. But I enjoyed my work and liked being in the capital city close to the hub of things. In addition to my job, I participated in consumer advocacy groups for state rehabilitation. I was very pleased with my life and liked the busyness of it. It seemed like everything worked better when I was employed. There were few things at home that could bother me when I was developing ways to provide services for people with disabilities. I felt I had found my niche and was fulfilled by helping others and myself.

Through these years I went to local, regional, and national conferences. I also gave presentations and speeches. I got really good at finding and keeping funding for programs. A local businessman assisted me to attend my local Chamber of Commerce Leadership Program.

Over the years stories swirled about how difficult it was for a severely disabled person to keep a job. Frequently lack of caregivers or illness halted their ability to work. There also was infighting in disability work similar to that in other fields. I took a part-time manager’s job for a statewide disability conference with the expectation of a better job afterwards. During that time I discovered I had breast cancer. I kept on working through surgery, chemotherapy, and radiation. But after I finished treatments, I was totally exhausted. When no job opened after my one-year contract ended, I decided to take some time to rest up.

Within a few months I was offered a specially created job working with the Personal Care Assistance Waiver for the Ohio Department of Human Services. I was leery about it because of the logistical problems caused by working in downtown Columbus. There was nowhere to park a raised roof van indoors. Since I was still rebuilding my strength I began working part-time. But they were pleased with my work and wanted me to work full-time. I was about to expand my hours when a caregiver was injured and needed to be off for a while. Since I needed a caregiver with me at work full-time, I had to quit my job. It had to reorganize my care at home.

After that I did not know if I could work full-time anywhere. I wanted to work and needed the income but I felt that a home-based business would be the best thing for me. I became a vocational rehabilitation client and eventually they purchased a computer for me. They loaned me Dragon Dictate (voice activation software) and provided training. State rehabilitation had many discussions with me to find the right computer work for me to do. But staff problems at home challenged me. It became more difficult to find dependable, reliable, and affordable help.

Because of care issues, my physical and mental health suffered and several hospitalizations followed. I needed more security in my care and living situation. One day, all my caregivers quit and I had to be admitted on an emergency basis to a nursing home. I was totally dejected. With care costs rising I did not have the funds to live on my own much longer. So by default I decided to learn to live in a nursing home while I could still private pay and control my environment somewhat.

Adjustment was difficult though the staff were friendly. There was little I could do without the adaptations I had at home. I wanted to read but my room light was not bright enough. I became depressed. After a few weeks we brought my computer to the nursing home but I did not have the right set up to use it. Instead, I used my typewriter to write letters. I contacted state vocational rehabilitation who had a rehabilitation engineer work with me. She provided a special keyboard and a touchpad for me to use. Within a few months I had learned Windows and was connected to the Internet.

My vocational goal was to start my own business. I began a business plan for a new type of long-term care facility. It was laborious because I considered myself an implementer not an innovator. I thought I should be able to write a business plan faster and better. I researched Online, e-mailed questions, and several people were interested in my ideas. I was surprised! I did not realize that a good gift of gab could actually sell people Online so easily. But I did my homework, knew some statistics, and people thought I had done this before. With no funds to go forward, I stopped. But not before I intrigued a manager from the facility’s corporate owner with my ideas. I thought it only made sense for long-term care planners to get input from potential residents.

When I needed a computer upgrade to allow more memory to run Dragon and Windows, my rehabilitation counselor suggested that I should work for the nursing home. Since I had heard this suggestion before, I just laughed at him and challenged him to follow through. He immediately went to the administrator’s office. Our interim administrator was interested. She had me write several letters to corporate executives to introduce myself and see what they thought about me working. She then said that she wanted me to get the new computer and I wondered if they were hiring me for that reason only. My title was communications coordinator but I had to stir around to get work. I did research and wrote articles. Though I enjoyed working and earning, I was not content with busy work. I began writing a monthly newsletter for the residents’ families. Then, I began another monthly for the employees. When the staff and family members began inquiring about the next issue or complimented me, I knew I was doing something worthwhile.

During all this I still had the day-to-day life of a resident. I had to work at keeping myself in shape both mentally and physically. Physical therapy did not last long, and after that it was up to me. I was getting restorative but pushed the envelope and showed initiative so the staff would not lose interest in me. One restorative aide put me on the exercise mat for stretching sessions. These sessions made me feel better and I thanked her for helping me. I was always ready for restorative and looked them up if they did not come to me. I questioned therapists for ways to keep myself as mobile as possible. I insisted on standing for transfers, though two people were required to assist me. Even after they would no longer allow me to do a pivot transfer, I kept pressing on. Despite all my work to keep myself going, I had periods of depression. Several times the facility hospitalized me because they did not know what else to do.

But my work continued to be my outlet. I produced two newsletters every month that made me proud. I had an identity other than that of nursing home resident. I communicated with state rehabilitation and suggested they develop a program for atypical nursing home residents like me. Unfortunately their statistics showed that severely disabled people were not able to produce over the long haul.

I applied for Medicaid in 2002. But my eligibility hinged on me paying most of my income back to the facility, which I did for several months. Then, because of facility budget cutbacks my job ended. I was devastated but decided to look for another job or for supplemental funding that could benefit me. I wrote letters to state and local organizations. I applied for a couple of outside jobs but did not get an interview. When I inquired, potential employers felt I was competent but they did not know how a resident could work outside a facility. I could not blame them because I did not know either.

In 2003, the county board of MR DD told me I could qualify for their self-determination program. After intake and testing I was approved. By fall I was given a budget. My funding pays for phone, computer expenses, DSL, recreation transportation, computer equipment, and software. The program has been a great benefit for me. The funding has assisted me to be independent. I also do not have to rely totally on my sister. I get out of the facility to shop and run errands. This summer I was able to travel 100 miles to a family reunion for the day. I appreciate the very caring people I have met through my participation in MR DD’s program.

A few years ago I began volunteering for the nursing home. In the past I have done their newsletters. Each month I do the activities calendars and twice a year I type the resident menus that are posted outside the dining rooms. I will gladly help out wherever I can. I enjoy making things nicer for the residents and being allowed to produce something that is tangible.

Dedication keeps me motivated. My range of motion exercises are done every day. I wear braces on my legs during the day and on my hands during the night to prevent contractures. I make sure I get enough rest. I pray, meditate, sing, and spout witty-isms to relieve stress. I take only medications that are absolutely necessary. I eat well and ask dietary for help with my diet. In the past two years with dietary’s help and a lot of determination I lost 30 pounds.

I must admit some days are battles. But through it all I communicate with family and friends, and I find that doing so keeps me grounded. I read the news and watch it on TV. I also rent DVDs to keep up on movies and TV shows. I listen to audio books from the library, or download them to my computer. In the last year I have kept a journal every day which helps me get rid of my frustrations and to talk things out on paper. My writing is very important because by doing it I greatly challenge myself.

Do I wish there were more? I definitely do. Some day they may allow nursing home residents to work and give them a way to do it. I know keeping my mind and body occupied allows me to be engaged and better able to handle what life sends my way.

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