About Myself

My name is Sandra. In 1994, at the age of fifty, I entered my first nursing home for long-term care. While it was difficult to give up living in my own home, as time passed I developed strategies for leading a meaningful life in the nursing home setting. It occurred to me that others might benefit from my experiences and observations. Also, writing this book has provided me with a mental challenge and an opportunity to feel productive. When I first started thinking about the book, both my mother and my longtime friend Ellen encouraged me and helped me to develop a list of topics to write about.

My primary focus is to assist future and present nursing home residents to lead the fullest lives possible while living in a nursing home. Hopefully, as residents and family members read about my strategies and ideas, they will be prompted to develop their own strategies. My secondary focus is to offer a resident's perspective to present and potential nursing home professionals and policy makers.

My interest in writing this book comes from my educational and professional background. I have master's and specialist degrees in college counseling. I had many experiences that influenced how I viewed nursing home life and contributed to my ability to write this book. I worked for thirteen years at a community college. During twelve of them, I did general counseling. One of my special responsibilities was advising international students. That experience has helped me to better relate to the multicultural staff in my three nursing homes. I coordinated the writing of a student handbook, as well as wrote many other counseling-related materials. The last year that I worked, I was the director of the Career Clinic, a program for adults wishing to change careers. Writing about my nursing home experiences and observations is a natural continuation of my professional activities. I hope that the reason my book appeals to readers is because the writer is someone who experiences nursing home living rather than someone who just observes the experiences of others.

My Adult Life before My Illness

All my life I have been a busy person from a long line of busy women. There was never a time that I could not occupy myself. While I was never athletic, I considered myself to be energetic and active. I have also always been more comfortable helping others than receiving help. My profession was a helping profession.

In my early adult years, I enjoyed my work and was involved with the establishment of the statewide professional association for college counselors and student personnel workers. My family life was full and I had many friends. I had a lifelong love for playing the piano.

I first asked my parents for piano lessons when I was three years old. I did not know until I was an adult that they actually tried to find someone to teach me then. When I was young, piano teachers would not accept students until they were eight years old and knew how to read. For my eighth birthday, my parents rented a piano and arranged for me to take lessons. When the trial period was over, it was obvious that I wanted to continue playing so they bought me a lovely spinet piano. Beginning with my junior high years, I played the alto saxophone in the school band. I continued playing in the band through the time I received my master's degree. Coincidentally, my college band director was hired as band director at the community college where I worked. When he established the band, I played in it until he had enough musicians from among the student body. Other activities that I enjoyed were reading, gardening, knitting and other forms of needlework, cooking, visiting museums, traveling, and attending concerts and plays. Of these activities, I am still able to read books and enjoy visiting museums and attending plays. The most difficult activity to give up was playing the piano.

During the years that I was able to play the piano, I also enjoyed listening to music. After I lost the ability to play, I found that rather than bringing me pleasure, listening made me feel sad by reminding me of my loss. This has been something that others have had difficulty understanding. Often people think that listening to music could be a substitute for playing it. This is not the case for me. I do enjoy an occasional concert with a friend, primarily for the social aspect and the opportunity to go out. I actually think that I sensed music with my hands as well as my ears. Listening made me want to play more.

At the time that I started my first professional job, I did not have a piano. For many reasons, my first job was not a good fit. It was at a small liberal arts college located in a small town. I am a big-city person who is more comfortable at a large public university. About midway through the year, I attended a performance of some of Beethoven's piano and cello sonatas. During the concert, I realized that I was missing playing the piano. The cellist was a student, and the pianist was the wife of the vice president of the college. A few days later when I approached the pianist, she agreed to give me lessons. After that, I started most days at six o'clock in the morning in a campus practice room. For the rest of the year, I was much happier. The following year, I found a more suitable job back in the Twin Cities area. At first, I continued commuting to the small college for piano lessons, but later found a teacher nearby. I studied classical music. I enjoyed playing pieces by a range of composers. I worked on the first movement of Beethoven's First Piano Concerto and many shorter works by Bach, Mozart, Chopin, Liszt, Mendelssohn, Debussy, and Satie, as well as others. My playing was not of performance quality, but it was good enough to give me a lot of personal enjoyment. I also enjoyed playing popular music and folk songs. I liked playing duets with two of my friends. We selected pieces that we could play without much practice. On several occasions, I accompanied the college chorus and also played Christmas carols at holiday parties.

I actually started losing my ability to play before I was diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease). I was puzzled by the number of mistakes I was making, given the amount of practice I was doing. It was not long after my diagnosis that I gave up playing. The frustration of stumbling over the keys was greater than the rewards of playing. This was a very sad loss. Now I sometimes enjoy listening to old recordings of the Beatles and I do enjoy attending Broadway musicals. I miss playing the piano just like I miss all the other significant losses that I have experienced; however, I have adjusted to these losses. It does not bother me that I no longer enjoy listening to music the way that I did in the past. There are plenty of other activities to enjoy that do not remind me of my loss. Everyone picks and chooses...