When things would progress, we were faced with new losses. I was surprised each time at the sense of grief we all felt, even though we knew this couldn’t be cured. I found myself wondering “How much more can he lose before this is over?”

I feel like I’m embedded in a continuous process of grieving, over months and years. I’m living everyday with a sense of loss and the reality of someone I love moving further and further away from me and the kids.

Caregiving for someone with a progressive and degenerative illness can be very involved, both physically and emotionally demanding. As a caregiver you may experience loss and grief as their illness progresses. This may include grief for the impacts and changes to your own life, such as living with uncertainty or facing social isolation. You may find that your own losses and grief as a caregiver are not as readily recognized, leaving you feeling unsupported and isolated. Finding the right balance of community and self-care is essential to your well-being.