The big thing I learned was not to confuse the person and the disease. The disease creates patterns of behaviour that are not in the person’s control. When I actually lived that way, it was the disease – not him. That helped me.

I don’t think grief ends; it just transforms over time.

Grief hasn’t ended for me, but it has changed. I think we need to work on making space for people to just be with one another, without trying to fix it or put a timeline on it.

Caring for someone with a progressive brain disease means living with loss and grief, sometimes over a long period of time. Your grief may come and go, and it will likely change over time. You may grieve for the person who is ill, for yourself, or for others in your family or circle of friends. You may grieve for what has been lost and what may be lost in the future, including the person’s physical presence.

The many changes you have to adapt to include not only the deterioration of the person’s health and physical or mental capacities, but also the changes to your relationship and roles with them and with other people. Your life may have shifted dramatically when you become a caregiver, and it may shift again when that role comes to an end. All of these changes can be sources of grief. When the person you are caring for dies, you will face new grief and changes.

If you are a parent, you will also be supporting your children, and it’s important to talk with them about what is happening. You can help them understand by giving them information that is appropriate to their age and personality.

It takes great energy and courage to do the work of caregiving, and the same is true of grief. No matter what your situation is, it’s important to acknowledge the challenges and coping strategies you have developed. It can be difficult to maintain hopeful feelings, but by being open to opportunities, you may discover new connections and new meaning in your life. Hearing from and connecting with others who have had a similar experience can generate new hope for the future.