I'm scared and anxious!! I'm a 47-year-old wife and mother of 4 children. The youngest is only 9 years old. For the past 4 months I've been having chemo and radiation for stage IV colorectal cancer. I am a nutrition guru. How could this type of cancer happen to me? Six weeks ago I woke up in the recovery room hearing the surgeon say, "I'm sorry, but it is a permanent colostomy. We also had to remove your uterus and ovaries."

I came home with all types of foreign objects attached to my body: tubes, drains, colostomy bag, and a zillion stitches. My mom and I try to remember the things we were taught at the hospital. We follow the directions for putting on a new colostomy bag and congratulate ourselves when it attaches well.

My husband is at work, and my 4 children at home are trying very hard to be quiet so I can rest. When I was discharged from the hospital, I was told that a home health nurse would come to my home and help us. The knowledge that a professional nurse would come to give me care and guidance gave me peace of mind.

I have been home 1 day, and the home health admissions nurse calls to set up an appointment for the next day, but she says she doesn't know whether it will be in the morning or afternoon. I wait, anticipating the arrival of this stranger who, I hope, is going to reassure me that all is well. Finally, she arrives, and she is just what I imagined she would be-professional, kind, businesslike. She conducts her evaluation, explains circumstances for which I should call my doctor and when to call the agency. Before she leaves, she explains that she is the "admission nurse," and that another nurse from the agency will be assigned for future care. I am comforted.

A few days later, a different nurse arrives for the second visit, and I can hear her talking loudly a mile-a-minute as she enters the house. She arrives at the top of my stairs, completely disheveled, and immediately begins talking to me about her friends. Her lengthy stories are punctuated by complaints about her computer and her car along with questions intended, I think, to determine my overall progress. At last, she does a perfunctory examination of my surgical wounds, but offers no teaching to my caregiver as to what is healthy and what to look for if there's a problem. Still talking, she leaves for her next appointment while I lie in bed completely exhausted by the encounter and hardly reassured. I attribute her harried behavior to a "bad day."

Her second visit 4 days later is no different. I call the agency and speak with the director of nurses and the quality improvement nurse, explaining to each of them the events of the 2 previous visits. They apologize and assure me that they will "look into it."

After 3 visits from the same nurse, I am to have a visit from the team leader. Maybe she'll be more professional [horizontal ellipsis] I hope. And, to some degree, she is. She spends some time reviewing my chart, then measures the surgical wounds and assesses the ostomy.

Unfortunately, she spends the entire time talking to me about her friends who are terminally ill with cancer. Apparently seeing my distress, she offers the helpful adage that no matter how bad my situation, there is always someone worse off. How comforting!! I spend the afternoon in tears.

After another lengthy silence on the part of the agency, I am finally scheduled to be seen by yet another nurse. By now, these visits have become unwelcome, stressful intrusions. We are fortunate, however, that this particular nurse is more professional. She encourages and teaches. This is only the second visit in which the nurse came, did her job, and left us feeling reassured, comforted, and empowered.

By this time, I am feeling better physically and am more confident. When the team leader arrives for her next visit, we mutually decide I am ready to be discharged, but I have spent 30 minutes listening to her tell me about her own health problems. What a relief to see her go, knowing I will not have to face this ordeal again.

I realize there is a fundamental attitude of the nurses toward their patients. The patient requiring home healthcare must be homebound, so the nurse can come at her whim or convenience. The patient's needs are of little consideration. Not once in 6 weeks of care did I receive more than 1 day's notice regarding a visit.

There are, I believe, some lessons to be learned from my experience.

First, respect your patients. If they require home healthcare, the chances are they have been through a recent traumatic experience. Their lives are out of control, and they are looking for comfort, reassurance, professionalism, and reliability. They need some control over their circumstances even if it's just an illusion. Schedule your appointments in advance and at least tell them if it will be a morning or afternoon visit.

Second, dress professionally. Do not arrive looking as though you just hit the sidewalk sale at the local thrift store or that you woke up already 15 minutes late for work. A company ID badge prominently displayed is certainly appropriate. Most of the nurses that came to see me did not display one.

Third, remember this is not your break time. This is the patient's time, and most patients are much more concerned about their own situation than they are about your computer/car/friends/ health problems. Take time to listen, not just talk. Is there a caregiver who can help you gain a better understanding of the patient's current situation? Can you reinforce the caregiver's skills and reassure him or her? Can you discern an underlying issue that you could address-fear, depression? How can you empower the patient toward wellness?

Finally, common sense would dictate that a sickroom is not the place to talk about your dying friends. The patient probably faces this fear constantly and expects hope and comfort from the professionals who care for her.

I'm the first one to agree that it must be difficult to go to a sick stranger's house. Maybe it would be helpful to remember that it's not about you, the nurse, at all. It's all about the patient.

About the Author

The author has been a quality improvement nurse in home health for 10 years. This article (written in the first person for emphasis) is based on extensive interviews and written correspondence from an acquaintance who received home healthcare in another state.