Chapter 3: Recognizing your grief


I've been there
Jim speaks about loss and grief when living with illness.(3:22)Video transcript

When he feels afraid, I feel afraid. When he is sad, I feel sad too. When he is grieving, I can’t help but grieve with him.

Over the course of my husband’s illness, we’ve lost friends. These were people I thought would be there or would help us when things got tough. I know now that it isn’t our fault, but it’s been another side of grief that I wasn’t prepared for. I’m so grateful for the people who’ve stayed by our side – it hasn’t been easy.  

Progressive neurological illnesses impact each individual and family differently. Whether the illness is a dementia or a hereditary disease, you may find yourself grieving alongside the person who is ill when experiencing losses as the disease progresses. You may miss the “old version” of the person you care about, and you may wonder who you have become when there have been many changes and losses along the way. Changes like the progression of the illness and transition to a care facility along with questions about genetic testing can also introduce aspects of loss and grief.