- Meet Consumers/Patients
A Step Toward Improving Health and Well-Being
Faye Clements, RNC, BS
The Oley Foundation and the University of Kansas School of Nursing research team of Carol Smith, Faye Clements, Donna Yadrich, Marilyn Werkowitch, and their many helpers (including many of you) have teamed up to carry out a study funded by the National Institutes of Health (NIH) to test a combination of home parenteral nutrition (HPN) support interventions. Dr. Smith and her team previously established, in published studies with over three hundred HPN families, that when the support methods they tested were practiced every day, fewer episodes of infection and depression occurred.
Depression is a common and recurring concern in HPN consumers (patients) and their caregivers due to the constant management HPN requires and consumer/caregiver anticipation of illness setbacks.
Depression is a devastating illness that affects the way we think and behave. It disrupts valued relationships, social interactions, financial stability, and job productivity. Studies show depressed people are twice as likely to have poor quality of life as those free of the illness.
In addition, there is now evidence of a direct link between depression and physical health. With illness, one can become depressed; with depression, the body can suffer. Depressed people become more detached and less interested in day-to-day activities; they are less likely to comply with medication regimes and exercise programs, and are less likely to maintain a healthy lifestyle.
Further, with depression, health outcomes may be poorer. Depression can increase one’s recovery time or lower one’s chance of survival with certain illnesses. With prolonged depression there is evidence of immune suppression. Sadly, economic costs can be extremely high for families and the cost of human suffering cannot even be determined, especially when depression leads to suicide.
What Is Clinical Depression
Clinical depression is an actual physical illness. It is more than being "sad” and there is not always a logical reason for it. Although the exact cause of depression is unknown, there are known contributing factors.
Fatigue can bring on symptoms of depression. It can cause a downward spiral from inactivity to discouragement to disability and finally to dependency. If you are physically fatigued and sleep deprived, you may do tasks with less care and concentration, which may in turn amplify guilt.
Environmental influences, such as life situations, illness, or traumatic events (including the death of a loved one, divorce, or job loss) can contribute to depression.
Depression is more common if other family members have a history of depression. If you have had periods of depression in the past, or are female, you may be more at risk. (Depression might be more diagnosed among women as a result of their more often seeking help with symptoms.) Depression affects almost 10 percent of the U.S. adult population; however, it is a TREATABLE illness. Research finds early detection and intervention are successful in preventing severe and chronic depression. Recognizing the signs and seeking professional treatment early are very important.
Reactive depression, or sadness in response to life’s disappointments, mimics clinical depression with similar symptoms (loss of vigor and interest in everyday activities, disrupted sleep, and fatigue), but symptoms are usually brief. Episodes often recur around holidays or when illness causes you to miss out on daily activities. It is a natural reaction to painful circumstances and is transient; it disappears as you come to terms with your troubles. Although sad, you can cope with living.When normal responses like anger, frustration, grief, or worry continue for two weeks or more, this may lead to clinical depression. The difference is in gloom that will not go away.
Symptoms That May Alert You to Clinical Depression
The National Center for Mental Health Screening lists several symptoms that should alert you to the possibility of clinical depression. If you experience any of these symptoms for longer than two weeks, you should contact a trusted friend, clergy member, physician, nurse, or social worker:
Physical symptoms include:
Again, you should report symptoms of at least two weeks’ duration. Remember, depression is not your fault. It is not a weakness or laziness, nor does it stem from lack of will power. It is not easy to "snap out of it” on your own.
Once you contact a health care provider, screening and other tests, including lab work and a physical exam, can be done to rule out any other causes of symptoms. Be prepared to discuss the issues with your health care provider and truthfully report how you are feeling and the difficulties you encounter.
Depression in the Caregiver
During this study, family caregivers have told us that they commonly experience fatigue and depression. One of the greatest challenges they face is to maintain their own physical and emotional health. They often find it difficult to put their own needs first and often neglect their own health and well-being.
Caregivers have also reported worry, guilt, and stress while providing care. Some described depression as: "I lost myself,” "I was paralyzed,” or "I didn’t have the energy to make the simplest decision.” Caregivers have shared with us that among the difficulties of living with and caring for a chronically ill person are observing the person’s pain, suffering, and changes on a day-to-day basis. Many have spoken of feeling unappreciated or ineffective, which may prompt feelings of frustration and anger. Others feel isolated from family and friends; they feel alone and that they are missing out on activities.
Caregivers can feel frustrated by not knowing how to help or how to get help when needed. Helplessness can accentuate negative emotions and fatigue. While nothing can stop the impact chronic illness has on a loved one, caregivers can, and must, learn to provide care while also maintaining their own health.
Tools to Combat Depression
For both caregivers and consumers, balancing physical and emotional needs will reduce strain. It is important to stop negative thinking and instead emphasize positive events. Resilience and connecting to inner strength can help you remember that managing an illness is not about perfection.
Experts stress the need to delay making major life decisions during "down” times, the importance of avoiding drugs and alcohol as crutches, and avoiding self-isolation. They underscore the need to preserve and boost self-esteem by taking credit where credit is due (i.e., in a job well done) and continuing to enjoy activities that in the past brought pleasure.
Specific scientific interventions tested in our study by patients and family caregivers include methods to decrease symptoms of depression and fatigue or prevent their occurrence. We teach study partners how to monitor emotions and to determine which events trigger low moods. We encourage them to write about feelings at least three times per week and especially when they are feeling discouraged. Writing about emotions has been shown to increase positive outlook, and further, it may also enhance the body’s immune system, helping to avoid infection.
Secondly, we advocate mood-elevating activities. When you are feeling "blue,” participating in enjoyable activities can help you feel better. Physical activity, like dancing, gardening, and walking, contributes to our feeling better about ourselves. Sensory touch, which Dr. Smith defines as firm skin contact for five to ten seconds, is another method for decreasing depression.
Sensory touch stimulates the nervous system and helps you relax. This simple gentle pressure helps create a sense of well-being.
Lastly, it is noted that consumers and caregivers are often awakened during sleep to attend to health concerns, pump alarms, and bathroom needs. This disrupted sleep causes stress and fatigue and the potential for error when performing medical procedures. Short naps are recommended to ease fatigue and restore alertness. Short naps have been shown to improve memory and relieve stress.
Support from Others
It has been established that partnerships with peers, support groups, friends, and neighbors are key to managing emotional and fatigue responses to care giving. Since having contact with others is important in preventing depression, two additional resources are made available in the study. One consists of contact with peers to reinforce treatment plans, receive and give support and encouragement, build confidence, and increase coping skills. Additionally, an outstanding Internet Web site has been created and is being tested. As the study continues, many more participants will be able to access this site to share HPN challenges and successes, tell personal stories, and access a wealth of information through links. [Editor’s note: Oley’s official volunteer network and online chat forum are also good resources for peer support.]
In time, we may find additional practical solutions to help improve daytime fatigue, manage brief episodes of the blues, and identify clinical depression. We hope to be able to share more insights gained from this study when the study has been completed.
Depression is a quality of life issue, but it also has ramifications for physical health. Depression can affect family, friends, and caregivers, as well as HPEN consumers. No one is immune from the risk of becoming depressed. When depressed, a critical step toward feeling like your old self is seeking help. It is imperative to be alert to symptoms of depression that persist, to report them to health care professionals, and to follow the recommended treatment. You cannot expect clinicians to "know” how you feel. You have to make the effort to share symptoms and concerns with professional health care providers. There are steps you can take to address some of the symptoms of depression (some suggestions are outlined in the article). Depression is a treatable condition, and need not destroy happiness and quality of life.