Making Myself at Home in a Nursing Home: Vanderbilt University Press

By Sandra J. Gaffney

Sandra Gaffney entered her first nursing home for long-term care at the unusually young age of fifty. Fourteen years earlier she had been diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Over the next sixteen years, Gaffney lived in nursing homes in Florida, Virginia, and Minnesota, as the ways she could be close to family changed.


She describes her situation in these words: "As a nursing home resident, I require total or maximum care. I have limited use of my hands and arms. With special splints, I am able to turn the pages of my books, use the telephone and TV/VCR/FM radio remote control. When my cup is positioned properly, I can drink independently. I am able to walk with a platform walker and the help of two nursing assistants. My walking is not functional; it is only for exercise. After I moved into my third nursing home, I learned to operate a power wheelchair by using an adaptive switch between my knees. ... All other areas of physical care have to be done for me. My speech is impaired. If people listen carefully, they can understand what I am saying. ... I am able to eat regular food and breathe on my own."


Gaffney became an acute observer and strategist about how to live in a nursing home. Her first-person account, dictated to family members and assistants, covers making the decision to enter a nursing home, choosing the right one, and understanding its culture. She talks about how to furnish your room and about all the issues that arise in a resident's typical day. She has much to say about communication with staff and family about "how to help others help me." Gaffney's daughters, Amy and Bridget, and her friend Ellen Potter provide additional perspectives on the caregiving experience.

• Language: English
• Publisher: Vanderbilt University Press
• Release date: Oct 15, 2012
• ISBN: 9780826518668

Sandra J. Gaffney

Sandra J. Gaffney worked for thirteen years as a college counselor before being diagnosed with ALS at age thirty-six. She died on February 22, 2010.

Book preview

1

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.

It was very difficult for me to understand why it was that Mom could not still enjoy listening to music. I would often try to convince Mom that she needed a radio so that she could listen to talk radio or classical music. At some point, as an adult, I finally accepted what she told me, but never quite understood. It helped me to understand after reading her words in this book. It is a reminder of the importance of listening to your loved one rather than pushing them toward something that you think would be best for them. —Amy

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 which activities they enjoy.

My Diagnosis

In March 1980, at the age of thirty-six, I was diagnosed with ALS. It is a degenerative disease of the central nervous system. People with ALS can lose their ability to walk, speak, swallow, and breathe; however, in most cases, the mind remains unaffected. When I was diagnosed with ALS in 1980, the life expectancy of a person living with ALS was two to five years from diagnosis, and it remains the same today. As you can see, I have beaten the odds by far. A positive outcome from my disease is that now, as I listen to my friends talk about their fears of the effects of aging, I treasure the opportunity to grow older. At one time, I did not expect to live past forty!

At the time I was diagnosed, I did not know anything about ALS. Fortunately, I had a very sage doctor. He explained about the muscles that ALS affects and about the expected progression of the weakness. I asked him if the disease could take my life. His response was that it could. He did not say that it would. Since this was such a serious diagnosis, I asked for a referral for a second opinion. For that, I went to a large medical center. The doctor there confirmed the diagnosis and said that I had no more than five years to live. When I asked if there was any hope, he said, No. Ironically, I learned that about eight years later he had died from a very rare disease, and I have greatly outlived his prediction.

ALS was a devastating diagnosis. I had always assumed that I would live a long life. Here I was at thirty-six having to face my own mortality. I shed some tears for myself, but my overwhelming concern was for my two young daughters. I had been married to Gene for nine years, and my daughter Amy was then seven and my daughter Bridget was five. All I could think of was who would take my place in raising them? It was painful to think of not being able to fulfill my responsibility for them. At that time, the third-grade class at our elementary school had a Mother’s Day program every year. All I could think of was how awful it would be for Amy or Bridget not to have a mother to attend that event when they were in the third grade. I quickly realized that I did not have time to fall apart because I still needed to be available to Amy and Bridget so that I could meet their day-to-day needs.

Being a pragmatist, I arranged to meet with their pediatrician to discuss how to best handle the situation with my girls. He recommended that I explain the muscle weakness and that I would be needing some help. He also said to explain who would take care of them if their father and I could not. When I did have this discussion with little Amy and little Bridget, I ended by saying that if we could not take care of them, my brother or my mother in Florida would take care of them. Bridget asked how they would get there. I assured her that my mother or brother would come and get them. After the pediatrician addressed my concerns, he said, Now about you. None of us know when we will die; you only think that you do. That was powerful, life-changing advice.

I do not think that doctors should predict how long someone will live. It is important to convey the seriousness of a patient’s condition and to indicate what may develop, but not to give a life expectancy for that particular patient. I recognize that these predictions are often given in response to questions from the patient or the patient’s family; however, it would still be better for the doctor to give a range rather than a specific prediction. These predictions can have a devastating emotional effect, and sometimes they are wrong. They can also discourage a person from doing all that he or she can do to maintain optimal health.

My Life at Home with ALS

The progression of my disease brought several life-changing decisions. I stopped working in January 1981 for a number of reasons. It was getting difficult to do my job well. The decision to leave my job was an agonizing one. At the time I loved my work as the director of the career clinic of a community college. The dean of students, who was my immediate supervisor, and the president of the college both offered to modify my job in any way necessary to allow me to remain. With such a poor prognosis, it was more important for me to spend time with my family. I was coming home from work fatigued and with little voice left. I wanted to save my energy and speech for my family. I also felt desperate to teach Amy and Bridget as much as I could to prepare them for when I could not do as much for them.

Since seven-year-old Amy was two years older than Bridget, her fine motor skills were more developed than Bridget’s. Bridget was not yet able to tie her shoes. She is left-handed and I am right-handed. It was important to me to teach her to tie them left-handed. My paternal grandmother had told me that she was not permitted to be left-handed. In those days they would beat children who used their left hand to write or eat. I vowed not to allow anyone to try to force Bridget to be right-handed. As I tried to show her how to tie her shoes left-handed, we were not being successful. Finally, I gave in and sat on the floor with her in front of me with her back to me, and I put my arms around her and we practiced until she knew how to tie her shoes right-handed by herself. As she grew up and learned to play softball, she batted right-handed and fielded left-handed. Everything else she does left-handed.

The Care That I Require

As a nursing home resident, I require total or maximum care. I have limited use of my hands and arms. With special splints, I am able to turn the pages of my books and use the telephone and the TV/VCR/FM radio remote control. When my cup is positioned properly, I can drink independently. I am able to walk with a platform walker and the help of two nursing assistants. My walking is not functional; it is only for exercise. After I moved into my third nursing home, I learned to operate a power wheelchair by using an adaptive switch between my knees. An occupational therapist and a rehabilitation technician positioned switches on my power chair that enable me to operate my television and telephone. This frees me from having to be at my desk most of the time. All other areas of physical care have to be done for me. My speech is impaired. If people listen carefully, they can understand what I am saying. When they have difficulty, I repeat what I have said or use different words. It does not bother me to do so. I am able to eat regular food and breathe on my own.

In many ways, I am different from the typical nursing home resident. Most nursing home residents are in their mid-eighties. When I first entered a nursing home for long-term care, I had just turned fifty years old. Because of my educational background and work experience, I am interested in the dynamics of what is going on around me. Most, but not all, nursing home residents have some cognitive deficiencies. I do not. Personally, I have always been self-motivated and do not look to others for direction or to solve my problems.

Mom’s impaired speech was possibly the most difficult part of her illness. In general, we and those who were with her often could understand her. However, if we were introducing her to someone new, we would typically warn them about her speech and explain that they would need to actively listen, like you would to a child learning to speak, in order to understand. We also took to repeating almost everything she said back to her or completing her sentences and asking for her confirmation that we understood correctly. Our serving as translators put others at ease. However, the impaired speech was a challenge for people who knew her well but felt bad asking her to repeat herself over and over again. We would all explain that she didn’t mind, but that didn’t always relieve the other person’s discomfort