Taking care of terminally ill loved one

Mary E Johnson has been a chaplain at Mayo Clinic for 25 years. Here she discusses what you might say to a terminally ill loved one, how you might act around him/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 is very individual. Relationships usually don’t change when people are faced with bad news. It’s important to build on the strengths of the relationship that were in place before the health care crisis came about.

How do you know if you should ask questions or prompt your loved one 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 counsellors.

Is there a typical emotional process that a dying person goes through?

In her 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 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 who’s dying 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 circumstance in your life.

How do you deal with a loved one who’s in denial about his/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. To provide emotional and spiritual support for people in denial, invite them to talk about their fears. Sometimes it’s easier for the dying person to share what s/he is afraid of and explore it with someone other than a family member.

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

You can encourage your loved one to talk about his/her life. These are those marvellous stories that get told around the campfire. You 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 s/he is near death?

Sometimes circumstances make it possible for you to keep a vigil with your loved one prior to his/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. Also remember to touch your loved one. There’s nothing more reassuring than touch. Even if there seems to be no outward indication, your loved one may be aware of your touch and take comfort in it.

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. 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 they can let go.

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.

What do you tell people who are stru-ggling 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. — Agencies