Chapter 2: Living with illness and grief
It’s been 10 years since his diagnosis. It has been a gradual process, so I didn't notice all the changes. I just did what had to be done; along the way, I’ve collected many losses.
There were such conflicting feelings about whether he was “still him” or not. We always wanted to include him because “he’s still the same person,” but we couldn’t take his actions or comments personally because “he wasn’t himself anymore.”
When someone you care about is living with a progressive neurological disease, it is common to experience losses and to grieve along the way. Different illnesses bring about different types of loss.
As the illness progresses, you may find yourself grieving for the losses that the person who is ill is experiencing, as well as your own losses. Understanding and recognizing the losses you are experiencing – and the ones that you are anticipating – can be helpful as part of living with and responding to you your grief.