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Terminal illness: Interacting with a terminally ill loved one
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Mary E. Johnson has been a chaplain at Mayo Clinic, Rochester, Minn., for 27 years. Her areas of special interest include ministry to women with gynecologic cancers and spiritual research.

Here she discusses what you might say to a loved one who has a terminal illness, how you might act around him or her, and how to deal with negative thoughts after your loved one passes away.

How might your relationship with a loved one change once he or she is diagnosed with a terminal illness?

Each person is unique, and each person's journey with a terminal illness is very individual. Relationships usually don't change when people are faced with bad news. Family dynamics in the hospital are often the same dynamics experienced throughout life. It's important to build on the strengths of the relationship that were in place before the terminal illness came about. It's also important to be open to possibilities during this dynamic time. Sometimes people experience healing in their relationships and find this time to be some of the richest of their lives.

How do you know if you should ask questions or prompt a person with a terminal illness to open up?

Based on your relationship, you may be the best judge of how your loved one copes. If you're by the bedside of someone you love, let that person know that you're willing to listen — to hear his or her concerns. It's important, though, that loved ones be loved ones and not try to be counselors. Never underestimate the value of your presence. Even if it feels as though you are not doing anything, being present sends the message, "I am here. I will not abandon you."

Is there a typical emotional process that a person with a terminal illness goes through?

In her landmark 1969 book "On Death and Dying," Elisabeth Kubler-Ross identified the stages of death and dying. She discussed dying as a process, making us think we had a scientific way to understand and talk about a very existential experience. But dying is not a science. Don't assume that your loved one with a terminal illness is going to go through a methodical process of coming to terms with death, such as denial, anger, and so on. It may not happen that way. Sometimes well-meaning people try to push the one with a terminal illness through these stages of death and dying. That's not helpful.

Kubler-Ross describes acceptance as the most desirable outcome of a grief process. A better description might be accommodation — learning to live as fully as possible, while accommodating to the presence of this terminal illness in your life. But do you have to accept that you have a terminal illness? Do you have to accept that you're going to die before you thought you would? No, you don't.

How do you deal with a loved one who's in denial about his or her impending death?

Denial is an important coping mechanism and has been described as a form of terror management. We deny because the reality is too frightening. Denial is a form of natural protection that allows us to let reality in bit by bit. It allows us to continue living as we contemplate death.

The person who's dying may be afraid of the pain that might be ahead. Or perhaps the person is afraid of losing control of his or her bodily functions, mind or autonomy. The person may also fear abandonment or becoming a burden to others.

To provide emotional and spiritual support for people in denial, I invite them to talk about their fears. Sometimes it's easier for the dying person to share what he or she is afraid of and explore it with someone other than a family member. In my role as a chaplain, I can often help reduce the intensity of fear, whereas the person who's dying may feel the need to protect his or her spouse or child from this type of discussion. If your loved one knows you're willing to talk about these concerns, however, your discussion can provide a wonderful opportunity for mutual support.

What else can I do for my loved one who's dying?

You can encourage your loved one to talk about his or her life — what I refer to as life review. These are those marvelous stories that get told around the campfire. I may ask a man to tell me how he met his wife. Sometimes, when adult children are present, it's amazing to find out they've never heard these stories.

How important is it for you to keep a vigil by your loved one when he or she is near death?

Sometimes circumstances make it possible for you to keep a vigil with your loved one before his or her death. This can be a very sacred but very draining experience. Never underestimate the power of your presence. Just being present, even while feeling helpless or powerless, can be an important source of strength and comfort for your loved one and for you. And there are times during the vigil when you can provide assistance, such as making certain your loved one's pain and symptoms are addressed and that he or she has access to the spiritual resources he or she may need.

Also remember to touch your loved one. The amount of touching a dying person receives tends to decrease as others observe the person to be closer to death. There's nothing more reassuring than touch. I've seen people massage lotion into the hands and feet of a dying person, or rub the person's head. Even if there seems to be no outward indication, your loved one may be aware of your touch and take comfort in it.

If you're awaiting the death of an adult child, talking about what your loved one was like as a child can be comforting. What do you remember most? The goal of this kind of engagement is to make and honor memories, to get resolution, and to affirm that the life of the dying person mattered and will be remembered.

Keeping a vigil can be really difficult. It's an uncharacteristic type of work for which most of us don't receive preparation. So it's a good idea for the person keeping the vigil to take care of herself or himself. Take breaks, accept others' support, drink plenty of fluids, try to get some rest, eat meals. All that emotional upheaval can be exhausting. If you feel overwhelmed, consider getting a respite worker or a patient care assistant to help provide the physical care so that you can continue to be there emotionally for your loved one.

Is it appropriate to tell your loved one that it's all right to let go?

Sometimes it appears as though the dying person is having difficulty letting go. Perhaps the experience isn't evolving the way you thought it would. Perhaps it's taking longer than you anticipated. People die in their own time. Whether someone really holds on until the last son arrives, for example, we have no way of proving, even if it seems that way. If you think someone is hanging on for your sake, it's OK to tell the person that you will be all right and that he or she can let go. Sometimes we expect ourselves to be present at the time of death. We can't control this. Perhaps the dying person is more in charge of this than we know.

What advice do you have for people who are grieving?

When I'm sitting with people who are keeping a vigil for a loved one who's dying or who has died, they often say that it feels like a bad dream. Feelings of grief, loss and sadness come in waves. Emotions can feel overwhelming, making even simple tasks seem difficult for a time. This is all normal. It doesn't mean you're going to be unable to function for the rest of your life. It means that right now most of what you can do is grieve. It's part of being human and part of loving. Grief is the natural response to loving and feeling loss.

If you're concerned that you're spending too much time grieving and are unable to function, or others have expressed concern about you, consider seeking professional mental health support.

What do you tell people who are struggling with guilt?

Guilt is a normal part of grieving. Did I do the right thing? Could I have done more? Was I there enough? Did I say the right things?

At a time like this, you're especially vulnerable to guilt. Feeling guilt in the wake of a loss allows us to take an inventory of ourselves. Most of the time we'll come to some peace and the guilt will fade. You may need someone to talk to who can listen to you as you work through this part of grief.

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  • April 05, 2006

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