How have you, as the caregiver, coped with the end-of-life issues facing your loved one?
Managing Symptoms at the End of Life
Rowena, 44, spent two months in her childhood home helping care for her ailing father. She sent this e-mail to her husband about six weeks before her father died.
"In some ways," she writes, "it's hard being around Dad. You come down to his pace and after a while you're seeing his outlook, how life has become old and bothersome. But if life is boring and seems pointless, maybe that's nature's way of making it easier to leave, since death is a part of the flow of all things. He doesn't read anymore. TV bores him. He can't do woodworking because his coordination is shot and his breathing becomes labored if he extends himself in the slightest. Monday someone will deliver portable canisters of oxygen, and then we're going to a place that rents power chairs. As he spends more time in his sleep world, I think he'll decide to let go. If he becomes completely bedridden, then hospice will bring in an aide to bathe him and make him as comfortable as possible as he goes through the final stages." The day after Rowena returned home, her father died in his sleep. "I don't know if I'm any braver about my own death now," she says, "but I want to try to savor this relief I feel."
Adapted from Caring for Your Parents
Many people think that pain is the only symptom that can cause distress for seriously ill individuals. Other symptoms related to the dying process, such as depression, can upset and confuse both patient and family. Knowing how to identify and handle them allows you to spend quality time together. This article provides practical information to manage an array of symptoms.
Bedsores Anyone confined to a bed for long periods of time will risk bedsores. They usually occur at points on the arms, legs, feet, and back wherever prolonged body weight creates pressure points against the bed. Lack of circulation causes skin to break down at these points. To protect skin and prevent infection, try the following:
- Change position every two hours
- Maintain good nutrition
- Talk to your doctor about whether a special bed or mattress can help
Cognitive Changes Up to 85 percent of terminally ill patients suffer from cognitive changes during their final days. The most common afflictions include confusion, delirium, and agitation. For example, a patient may insist that he sees dead family members. These symptoms arise from any number of causes, including the disease itself, infection, medications, and kidney and liver dysfunction. The reassurance of family and friends can play a vital role in helping someone who suffers cognitive problems. Also, the doctor may prescribe medications to help manage mental changes.
Digestive Problems This category frequently afflicts the terminally ill. The three most common:
- Constipation It plagues patients who are bed bound and not eating a regular diet. Many medications worsen it, so talk to your doctor or nurse about solutions.
- Bowel obstructions A cause of great discomfort, obstructions prevent patients from eliminating stool. Talk to the doctor about medications that slow bowel contractions.
- Nausea/vomiting This one's widespreadónausea torments 60 percent of terminally ill patients, and episodes of vomiting harass another 30 percent. Again, various medicines complicate it, so talk to your doctor about changing medications or adding an anti-nausea drug.
Fatigue Chronic fatigueóthe kind that affects most people who are dyingóoften stems from the illness itself, anemia, depression, and treatments such as chemotherapy and radiation. Persistent exhaustion impacts every aspect of a person's lifeópsychological, physical, and emotional. Ask the doctor to adjust medications or try non-drug interventions like exercise. If untreated, fatigue will overwhelm a patient's quality of life.
Helpful Hint Research has shown that hearing is the last sense to go when a person is dying. Even if the patient appears to be sleeping, non-responsive, or in a coma, always presume that he or she can hear everything said in the room.
Loss of Appetite and Thirst As the end approaches, the desire to eat and drink ebbs. Because the body either doesn't need as many nutrients or can't absorb them, it stops asking. Weight loss follows. Bear in mind that it's a natural part of the dying process and the patient isn't suffering. Doctors should never force terminally ill patients to eat or drink. If they do ask, offer small, frequent meals comprised of high-calorie, high-protein foods, or add nutritional supplements.
For those who may consider more aggressive measures, such as medications through feeding tubes or intravenous lines, confer first with the doctor, hospice nurse, or primary medical professional for the pros and cons.
Helpful Hint Ice chips, keep them handy. They relieve two key symptoms: dehydration and dry mouth.
Shortness of Breath This will distress patient and family more than most symptoms do. Various causes include infections and fluid buildup in the lungs. Heart failure and lung disorders hamper the body's ability to move oxygen to its tissues, especially the brain. The patient's anxiety intensifies the problem.
Sometimes a simple change in position relieves it. Other times, relaxation and breathing exercises or a fan or an open window that gets fresh air moving in the room helps. More serious bouts require medical professionals and bottled oxygen.
Emotional Stages Depression and anxiety play undeniable roles in the process of dying. Pay attention to how extreme they become. To some degree, they're normal reactions to the realization that the end of life is near. People move through emotional stages as they prepare to die, among them denial, anger, depression, and acceptance. Often the dying person, his or her family, and loved ones wind up in different stages at different times.
Talk with family members, your medical team, social worker, or clergy. Try resolving lingering issues, and you'll discover a sense of closure and peace of mind. It may also help to talk to the doctor about medication.
Most Important! Talk to your doctor before the illness progresses to the stage when these symptoms appear. Tell your doctor what your fears are and discuss ways of dealing with them. An action plan will preempt your symptoms and keep you in a more buoyant zone. This is not just a responsibility but a gift to yourself and your loved ones so that everyone maintains peace of mind during this critical time.
Some of this material appears in slightly different form in Caring For Your Parents: The Complete AARP Guide.
© 2003, 2004, 2007 AARP. Reprinting by permission only.