Respect My Wishes
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  "Pop is still with us, but in some ways I find myself grieving as though he’s already died. I feel guilty and sometimes tremendously sad. It seems weird to be mourning his loss when he’s still alive."

Strategies for grief
Treatments for depression
Anticipatory Grief
     When a person receives a serious diagnosis, his or her life is irrevocably changed. It is very common for both the patient and family to begin a grieving process. It may be that the patient is grieving the loss of his or her self-image as a healthy person. The grief can be over the loss of roles the patient is no longer able to fulfill. Both the patient and caregivers may grieve the loss of hopes and dreams and a future that is no longer possible.
     Sadness, fear, and anxiety are natural responses. Life is precious, after all. The thought of losing it, of losing our loved ones and the pleasures and joys we hold dear, can be very frightening. This "anticipatory grief"—the patient’s and caregivers’ mourning of losses present and yet to come—is a perfectly normal reaction to the reality of death. It is a part of the process of coming to terms with the unthinkable. (For information about grief following the death of a loved one, see our article about mourning.)
     Living fully in the present while preparing for the possibility of death in the future can be challenging for patient and caregiver awlike. For the patient, it is a time of facing fears, evaluating one’s life, and saying good-bye. Once physical problems such as pain or nausea are controlled, emotional and spiritual losses come to the fore. Resolving family relationships and defining a sense of purpose or meaning to life will help the patient cope with these natural feelings of grief and fear.
     For family caregivers, anticipatory grief involves a delicate balance of staying close to the patient and enjoying what days or weeks remain while investing in life and preparing for a possible future without your loved one. It is important that the patient feel your love and willingness to be present. People who are seriously ill are very sensitive to being a burden or being abandoned. Focus on enhancing the quality of your time together. Often what the patient needs most is a good listener, someone who will acknowledge concerns without straining to fix things or make things better. Bringing your calm and loving presence to the time you spend together will be healing indeed.
     Don’t feel you must spend every moment together, however. You cannot fill your days with caregiving and do nothing else. It's not healthy. Give yourself breaks, even if it’s just 20 minutes on the porch enjoying the garden or reading a book. Arrange for help so you can get away from the house and all your responsibilities from time to time and focus on your own well being. Stay involved with friends, if only by phone or e-mail, and find a way to spend some of your time talking about subjects other than caregiving. Spend time with children in your life and engage in activities that are pleasurable in and of themselves. You will be a better caregiver for taking good care of yourself. Not only will you come back refreshed, but you will be better able to process your grief if you give yourself opportunities to be relieved of it from time to time. (Return to list)

Strategies for grief
     Patients and caregivers can ease their grief by
  • getting exercise to the level appropriate to their condition
  • limiting or avoiding sugars and caffeine. (The ups and downs they may cause make it difficult to find emotional balance.)
  • getting enough rest (especially for those who are having trouble sleeping)
  • doing at least one thing a day that genuinely gives pleasure
  • talking to a close friend or family member who is a good listener
  • writing in a journal or using other means of expression (painting, playing music, etc.)
  • at the end of each day, reflecting in a positive way on activities or events that were meaningful ("seeing the glass as half full")
  • praying, meditating, or talking to a member of the clergy (for those who are spiritually inclined).(Return to list)
     Sometimes anticipatory grief becomes depression. An estimated 77 percent of patients in the advanced stages of cancer, for example, are clinically depressed. Family members are also affected. Research shows that caregivers are far more likely to be depressed than are people who are not caregiving. Depression is considered a common side effect of serious illness.
     Although depression that stems from grief and impending loss is certainly understandable, it can make the daily process of living quite difficult for patient and caregivers alike. For those who are depressed, even getting up in the morning is a struggle. Fortunately, depression is a very treatable condition. You have enough to do to cope with the physical, spiritual, social, and financial challenges of a life-limiting illness; you don’t need to grapple with the downward emotional spiral of depression on top of it.
     Doctors diagnose depression if a person has experienced four or more of the following symptoms nearly every day for two weeks or more:


  • fatigue, listlessness, lack of energy
  • inability to remember, concentrate, or think clearly
  • lack of motivation
  • no joy in activities one used to find pleasurable
  • withdrawal from others
  • changes in eating patterns (eating more or less than usual)
  • changes in sleeping patterns (sleeping more or less than usual)
  • an increase in the use of cigarettes, alcohol, or other mood-altering substances
  • feelings of sadness and bouts of crying
  • feelings of hopelessness or despair
  • feelings of worthlessness
  • feelings of guilt
  • thoughts of suicide.

     It is not difficult to see how serious illness might bring about these symptoms and feelings. Many of the physical symptoms are things the patient might experience from his or her disease. If the person who is ill is expressing feelings of hopelessness, worthlessness, guilt, or thoughts of suicide, it is important to alert the doctor. Emotional suffering is every bit as painful as physical suffering, and your doctor will want to help you find ways to alleviate it.
     If you as the caregiver are experiencing four or more of the previously described symptoms, you should also let your doctor know. Depression is not inevitable. It is a condition that can and should be treated so that your energy is freed to focus on the other tasks before you. (Return to list)

Treatments for depression
     Antidepressant medications have been shown to be a very effective, nonaddicting method of treatment. They do not work right away, however. It takes several weeks before you start to feel the benefits, and they often cause side effects. You may need to go through a trial and error process to find the best medication for your body. For a person with a terminal diagnosis, time is of the essence, so you might want to ask your doctor about quicker-acting psychostimulants.* They are generally well tolerated and not only enhance the patient’s mood, but also appear to increase appetite, improve energy, and amplify the effectiveness of pain medication.
     Antidepressant medications also seem to work best in combination with "talk therapies." Expressing our feelings is an important part of breaking the negative momentum of depression. Counselors are trained to help clients get to the heart of a problem very quickly and effectively. Talking with nonprofessionals can also be beneficial. Support groups are a powerful way to work through your feelings and gain useful tips from others who are in situations similar to your own. Those who are housebound could seek out the many online support groups designed for patients as well as caregivers. Even talking with a good friend or family member can be helpful.
     In addition to using medications and talk therapy, some people cope with depression by focusing on a project or hobby. Doing something that refocuses your attention can be very therapeutic. The strategies for grief listed earlier are also helpful for augmenting medicinal and counseling approaches to depression. (Return to list)

*If you or your doctor want more information on psychostimulants, the University of Wisconsin Medical School sponsors the End of Life Palliative Education Resource Center which offers excellent peer-reviewed articles. Article #61 is about psychostimulants and antidepressants. You will need to complete registration information to get into the "Fast Facts" section, however there is no charge and you do not need to be a physician to register.


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This website was created by the Grand Island Coalition for End of Life Care, a community organization dedicated to improving end of life care through education, advocacy and support. We gratefully acknowledge the generosity of KDSI for their donation of webhosting services. Site design and layout created by Let's Collaborate!
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