Facing Illness and Loss: Caring for Someone Who Is Dying

By Kenneth J. Doka, PhD, Hospice Foundation of America

Jill left her job to care for her mother who is in the final stages of Alzheimer's disease.

Rosa cares for her husband, who is now dying from lung cancer.

Bea's father lives in another state, yet she still works closely with the local hospice, and is very involved in his care.

Mark takes care of his partner, Tom, now in the final phase of AIDS.

Caring for Someone Who Is Dying
In all of the cases at the left, each individual struggles with caring for someone who is dying. Although the diseases, relationships, and circumstances are different, each person faces similar issues and difficulties. If you are caring for someone who is dying, the information in this brochure will not make your struggle any easier. However, it can offer some guidelines, provide a sense of understanding, and make your efforts less lonely.

Understanding the Dying Process
Each person will die in his or her own way. You will notice many changes in your family life. In addition, your life will be impacted by the emotional, spiritual, and physical changes of your loved one.

When someone is entering the final stages of an illness, the disease, medications, and even the process of dying will lead to many physical changes. You will observe different appetite, breathing, or sleeping patterns.

While some of these changes may not be extremely meaningful, some may be significant, and point to a crisis or need for a decision to seek hospice care, to terminate treatment, or to withdraw life support. As you care for a dying person, it is important to review any observable changes with your physician or nurse. Ask them to tell you what signs and symptoms you should watch for, and what you should do when you see them.

I didn't know that there would be so many ups and downs. I knew this would be devastating, but nothing could prepare me for the changes in her mood. Some days, she'll let the kids feed her, and then some days she'll throw her food at me and scream that she "can hold a fork."

In addition to the physical changes, the dying person may be coping with many emotions such as sadness, anger, guilt, fear, and anxiety. He or she may seem withdrawn or disengaged. At times, the person may even become stubborn and resistant, in attempts to maintain sense of control. Some dying persons may seem to welcome death; some will seem to fade slowly; others may fight it to the end.

Family relationships will change as well. Some of these changes will reflect realignment in the family as an individual dies. Other changes may result from the inherent stresses involved as an individual dies and as family members deal with the added stress of caregiving.

Planning realistically for the future
When caring for someone who is dying, you will be faced with a series of difficult decisions.

When my mother was dying, we had her will and health care proxy. We knew what she wanted and that guided us and kept us together as a family.

In the best situations, these decisions should be discussed well before an illness is in the final phase. As you begin care, ask your loved one if there is a health care proxy, power of attorney, or living will, how and where they want to die and whether they'd prefer hospice care. Open discussion of these issues early on, even before a diagnosis, can make difficult decisions a little easier.

Sometimes, these issues have not been discussed. However, regardless of whether there had been prior conversations or not, it is important not to be rushed into decisions. Make sure that you have all of the information you need from your physician and encourage frank and open discussions among the other family members or friends who are involved.

Advance Directives
Oral and written instructions about your future medical care in case you are unable to speak for yourself. Each type is regulated differently by each state. Therefore it is important to consult a lawyer about your advance directive.

Living Wills: An advance directive that outlines your wishes about medical treatment should you be unable to communicate at the end of life. State law defines when it can go into effect, and may limit treatments to which the living will applies. You generally have a right to refuse treatment.

Medical Power of Attorney: Sometimes called a "health care proxy," or "appointment of a health care agent," this directive allows you to appoint someone you trust to make decisions about your medical care. In many states, the person you appoint may speak for you at any time you are unable to make decisions, not just at the end of life.

Taking Care of Yourself

Understand how this illness affects you
When you are responsible for a loved one who is dying, you too will experience a series of reactions. You may struggle with many emotions-among them anger, guilt, anxiety, or sadness. You may find it difficult to concentrate or focus. You may feel tired and stressed. You may feel a sense of meaninglessness-wondering why someone you love is suffering or dying and why you are experiencing your reactions.

At first I didn't realize the impact caring for Dad would have on me. I was his daughter; it was my duty and obligation. Thinking of myself as a "caregiver" as well as a daughter helped me understand the challenges and rewards of caring for someone you love.

Remember, caregiving in itself is stressful-adding increased responsibilities to an already complicated life.

Practice self-care
When you care for someone who is dying, it is critical to find ways to care for yourself as well. Practicing proper nutrition, getting enough rest, and exercising regularly and reasonably will contribute to a sense of well-being, offer a renewed sense of control, contribute to your overall health, and help you provide better care.

When my husband became ill, I was uncomfortable leaving him-with anyone. A good friend, whom we both loved dearly, convinced me to let her stay with him. At first I just left for short periods-a quick trip to the grocery store or another errand. After I realized how much of a difference it made, I would make an afternoon of it-I'd get my hair done, have lunch with another friend, or take a long walk in the park. It made such a difference-and my husband saw that time as a "gift" that he could give back to me.

It is important to find ways to lower the stress you may be feeling. Explore what has helped with earlier crises in your life. Massages, walks, warm baths, or talking with friends are just examples of the many ways you can nurture yourself and reduce the tension and stress you may feel. Remember you too need respite. Find others who can share in the caregiving duties.

Take care of your mental health as well. While coping with the stress of caregiving, you may find it helpful to read books and websites on caregiving, join a support group, or seek counseling. These activities can provide opportunities to express your feelings, worries, and thoughts, as well as allow a chance to discuss and learn how others deal with the everyday problems of illness. Equally important, counseling, whether in a group or individual setting, provides the comfort that you need not face this illness alone. And that sustains hope.

Communicate your needs and cultivate support
When you are caring for someone who requires a significant amount of attention, it is easy to neglect your own needs. You will have personal chores which you have to take care of, as well as meeting your individual needs for respite.

It is important to communicate these needs with others. Talk with your family members and friends about ways they can help. Ask your physician or hospice care professional about available resources. Also make sure that you are clear on what help you will need as you care for someone who is dying.

Try to avoid making rash decisions. When you are involved in caregiving your own ability to make decisions may be impaired. Go slow. Sometimes you can focus on more short-term solutions, holding off on major ones.

Caring Long Distance
Sometimes you may not live close enough to provide adequate care for someone else. You may have other roles or responsibilities which force you to live a good distance away. In such cases, talk with other family members about the ways you can best help.

When my mother was dying, my sister was involved in day-to-day care. I helped in a number of ways. I handled the bills and the finances, and twice, I flew there and watched Mom so that my sister could take a much-needed vacation.

In cases where there are not family members who can help, social workers and discharge planners can help arrange care. Professional "case" or "care" managers can also help you assess, coordinate, and supervise care.

Some suggestions taken from the experiences of hospice patients:

• Be honest with me. I can tell when your feelings or actions are insincere.
• Laugh with me, cry with me. Allow me to express intense emotions.
• Don't feel sorry for me. Your understanding helps preserve my dignity and pride.
• Touch me. I want to be accepted despite the way I may look. Inside, I'm still the same person you always knew.
• Let me talk about my illness if I want to. Talking helps me work through my feelings.
• Let me be silent if I want to. Sometimes I don't have much energy and I just may want your silent companionship. Your presence alone can be comforting.
• Space your visits and calls. Consistent support is very helpful.
• Offer to baby-sit. The children need a break from my illness, and private times with my spouse are treasured.
• Support my family. I may be very sick, but they too are suffering. Let them express their grief.
• Offer to help me with the simple chores. Routine jobs are often difficult to accomplish.
• Continue to be my friend. Don't let my illness overshadow all the good times we've shared together. I know this is hard for you too.

By Kenneth J. Doka, PhD