The doctors couldn’t say, “This is what will happen. This is what to expect.” They told us instead “There is no order of things. Every person is unique,” which was very hard to hear.

We couldn't do simple things, like going for a walk or out to dinner. I couldn't go off and do something for an afternoon. I had to make all sorts of arrangements to do that; I couldn't be spontaneous.

Uncertainty and feeling that things are out of your control are common when caring for someone with progressive illness. There may be uncertainty about how long the illness will last, about its progression, and about how it will impact the person’s life and your own.

You may feel as though you are living in limbo or in a constant state of upheaval and turbulence. Sometimes life may feel unfamiliar or unstable, which may increase your feelings of loss and worry. Not knowing what to expect but knowing that much of it is out with your control can create discomfort and unease.

Some people have described the uncertainty and lack of control as like being on a roller coaster, with unpredictable ups and downs. Emotions, physical and mental energy, and spiritual beliefs, can be affected by the changes impacting your life. Finding a sense of balance can sometimes be a challenge when living with uncertainty.

What may help

• Acknowledge whatever feelings come up for you in response to “not knowing.”

• Notice how you respond to changes, even if they seem small. If you find yourself resisting changes, try to simply notice that without self-judgment.

• “Not knowing” what is going to happen or when can be stressful. Acknowledge your discomfort and extend feelings of compassion to yourself.

• Consider ways to increase your openness to uncertainty, such as simply repeating a phrase like “I can live with not knowing.”

• Acknowledge the lack of control that you feel and the losses and grief that you may feel as a result.

• Look for moments when you can do something to gain a feeling of groundedness, satisfaction, or accomplishment, such as writing, drawing, listening to music, reading, woodworking, or doing a puzzle.

• If possible, arrange to do something for yourself: set a weekly “date” with a friend, family member, or counsellor in person or online.

• Consider ways that not having control over things might feel like a benefit. You might find some sense of relief in knowing that you don’t have to be in control or responsible for everything that happens.