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So many questions when advanced illness arises

By Ron King

The end of life poses questions we’ve never been forced or chosen to ask before. What happens when we die? Will we see those we love again? How will I live alone? Why is death coming to our family now? How can I say goodbye, I’m sorry, I forgive you, I love you? Is it OK to wish for the suffering to end? Where is God? Is something wrong if I want someone else to take care of my loved one through the dying process?

Questions that come alive for us in the valley of the shadow of death will direct our caregiving choices and goals. With an openness and courage to face hard questions, we can learn and love well through the most difficult days. Our faith and assumptions are tried and shaped by searching for answers we’ve never before considered.

Being open to these new questions can help us live with uncertainty, loss, and grief. As we stay open to each new question through day to-day-changes, we discover what matters most, what is true or necessary, and the sources of hope and resources we have to live each day. Seeking these answers together can move us toward acceptance and intimacy, and help to overcome fears.

When the questions change
Upon the initial diagnosis of a terminal illness, for instance, we might ask, “How can I get better?” As it becomes clear that recovery is unlikely, the question may change to “How can we maintain regular activities?” If we are then faced with the inability to walk safely, the question is “How can I be safe” or “Will physical therapy help?” Later, we may need to begin asking, “How does a person adjust to this kind of weakness?” When we need to depend on others, we have to ask, “Who do I depend on?”, “How much?”, “Is it fair?”, “Do I deserve it?”, “Really need it?”

When we’re comfortable with giving and receiving help, we may need to ask what to do when it seems there is no longer energy or strength to help. Continuing to only ask, “How can my loved one get better?” could diminish the capacity for caregiving when it is needed the most.

Asking the wrong question, posing a good question at the wrong time, or applying certain answers on every question can hinder us on the journey of caregiving. Rather, we need to be content in voicing the new—and maybe difficult—questions that arise at each stage of caregiving. As we walk through each of our own questions, we gain experience to help others face and answer their own questions. What we can offer each other is the courage to ask and patience to wait for an answer.

Caring with Confidence exists to help with some of those tough questions caregivers have, whether it’s how to physically take care of a loved one, or how to deal with the emotions that come for both patient and caregiver at end of life. Check out Useful Tools for some specific information.

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