I am a nurse with multiple sclerosis (MS). Having this debilitating disease prevents me for caring for myself: I am paralyzed and cannot use my legs, but I can use my hands and although my fingers are in a clawing position, I am able to feed myself and to type with one finger. I live with discomfort, pain and a deep frustration that have left me with little patience and little dignity.
I have been a resident of a nursing home for almost 8 years and I would like to share my experience of living in a nursing home, which has given me insights into nursing that differ from the perspective of hospital-based nursing or even community-based nursing. My experience of nursing care in the nursing home is limited to being bathed and dressed each morning, getting me into my electric wheelchair, getting me back to bed for rest periods during the day, partially undressing me and giving me my medications. In the evening, nursing care consists of being bathed again and changing my clothes.
My floor of the nursing home includes 50 residents staffed with two nurses and six aides on the morning and evening shifts; one nurse and approximately four aides comprise the staff on the night shift. One nursing supervisor oversees four floors and another supervisor oversees two other floors. The nurses and aides are one component of a multidisciplinary staff at the nursing home. The other members include physicians, social workers, clergy, dietary department staff, housekeeping staff and volunteers.
A physician is assigned to each floor and visits each resident at least once a month. The physician will, of course, see any resident who has a medical problem more frequently. My physician is very special to me: he is very supportive and makes every effort to help me to be comfortable as possible. A social worker also is assigned to each floor and residents can see a social worker to discuss any problems they may have. The social workers will go to a bank for residents who are unable to do their own bank business; they also are available just to talk with the residents about their lives. Priests and ministers also are available to see residents. An on-site chapel is available and services for Catholic, Protestant and other faiths are held frequently. Several times a year, memorial masses or services are held for deceased residents; family members are invited to attend the mass or service.
The dietary department staff provides three meals a day and my meals are set up so that I can feed myself. Although the nursing home has a dining room for residents, I prefer to eat in my room. When I am unable to feed myself because of illness, an aide feeds me. I never like eating breakfast, henceforth unless the breakfast menu includes food I especially like (pancakes, French toast and waffles), I will not have breakfast. The lunch and dinner menus typically include soup, meat, vegetables, dessert and fruit juice. Afternoon and early evening snacks consist of juice or milk and cookies. I am particularly fond of the lemonade, which the dietary department staff provides at my request.
Volunteers staff the nursing home gift shop and coffee shop. The shops are open to residents and visitors and offer a variety of candy, cookies and snacks, as well as gifts and greeting cards. The nursing home greenhouse has many birds, trees, plants and flowers and I enjoy sitting at a table there and listening to the birds sing their songs while admiring the beautiful flowers. I often go to the greenhouse with friends who visit me to play cards, have a cup of coffee or share food they brought for me. The greenhouse sunroof provides a feeling of being outside.
Laundry services are available at the nursing home to wash and iron some of my clothing but I prefer to send other clothes out to a dry cleaner. Housekeeping staff, including porters and maids, is responsible for emptying trash baskets, mopping floors and dusting the plaques and pictures of residents.
Living in a nursing home can not only be pleasant, but can also be frustrating. Shortage of staff and financial constraints imposed by insurance and governmental reimbursement create situations that lead to frustration. A nurse or aide is not always available to answer a resident's call bell quickly or to help residents to move from one place to another. Menus, typically, are limited to two choices at each meal. Clothing sent to the laundry is sometimes returned wrinkled or may be lost. A member of the housekeeping staff is not always available to clean up accidental food spills and wheelchairs may not be dusted frequently. Some residents are given motorized electrical chairs before they know how to manoeuvre them. When I get frustrated I try to remember when I was studying to be a nurse and how I realized, even then, that there never seemed to be enough time to address patients’ needs effectively and efficiently.
My life as a nursing home resident is confined, although I am able to get out of my room much of the day. I can manoeuvre my wheelchair so that I can go to the other floors of the nursing home and go outside when I choose to do so. I can also manoeuvre my wheelchair to get to nearby stores. I participate in various supervised recreational activities, such as the arts and crafts, Bingo and musical events offered by the nursing home staff and volunteers.
I also am a researcher and I did not have to give up my career as a nurse researcher when I entered the nursing home. Rather, I continue to read about the topics in which I am interested and write reviews of the literature. I have decided to focus my programme of research on the experience of MS and I recruit study participants by advertising in an MS newsletter and an MS journal. I collect data via telephone interviews and analyse the data with help from members of my research team and prepare reports of the research with help from my research team members and an editor (e.g. Gagliardi et al., 2002; Gagliardi, 2003). Furthermore, I am a clinical specialist in psychiatric nursing and have continued my clinical practice with 25 clients with MS, who participate in telephone-based support groups that I lead.
Living in the nursing home is very different from living in my own home. I am dependent on the nursing home staff to assist me throughout the day and night. I am on a set schedule, I wish I was not here, I wish I did not have MS. But I do, and I have to make the best of it. My research and my clinical practice help me to make the best of my situation.
My experience indicates that nurses can do a great deal to reduce the frustration of nursing home residents and enhance their quality of life. First and foremost, nurses can remember that each resident is a unique individual, and that a hallmark of nursing practice is individualized care. Operationalizing that hallmark in nursing homes is crucial and can be done simply by asking each resident about his or her life before entering the nursing home and then collaboratively identifying strategies that will permit each resident to continue with usual activities to the greatest extent possible. Treating each nursing home resident as an individual helps that person to maintain dignity in the midst of illness and disability, which is another hallmark of nursing practice. Listening to the person and accepting suggestions and advice is key. The nurses who have helped me to continue with my clinical practice and research are excellent role models for individualized nursing care. The nurses who treat me with respect and listen to my suggestions about ways to care for me are also excellent role models for individualized nursing care. The quality of my life, despite the disabilities associated with MS, is higher because of those nurses. Nurses who listen and individualize care will maximize the quality of life of every nursing home resident they encounter.