Chapter 2: Living with illness and grief

A note about hope

The sense of hope is fragile when there’s no hope for a cure in the short-term.

Hope has come to mean different things for us along the way. Before, I used to hope for a cure, but now my hopes are the everyday kind of hopes: the hope that he’ll have a good day today, the hope that he’ll have more good days, and the hope we can share more time together before this progresses further.

While caring for someone who is living with a progressive illness, your sense of hope will likely change. In the earliest days, you might have held out hope that the diagnosis was wrong and that the person could be cured. Later, you might have hoped that the disease would progress slowly or that there would be times of reprieve when life could return to normal. As more time passed, your hopes might have become smaller. Perhaps you hoped for a good day or a few good moments.

In addition to your hopes for the person who is ill, you may also have had hopes for yourself. You may have hoped that you would be able to continue to do things that you enjoyed, such as seeing friends, travelling, working, or taking part in social activities. You may have hoped for more time with the person who was your companion in some of these things.

It is very challenging to maintain a sense of hope when someone has a progressive brain disease, but there are ways to balance hope with realistic expectations.

What may help

  • Take note of your hopes. By identifying them, you can decide how realistic they are.
  • Notice times when you’re feeling despair, or a sense that there’s no hope. Acknowledge your feelings, but give thought to “scaling down” your hopes or finding hope beyond your immediate situation: a pain free afternoon, a good sleep, a friend’s visit, a few moments of lucidity and calm, a child’s successful job search.
  • Allow your hopes to change, and let yourself have hope for your future, even if that is without the person who is ill.