Chapter 3: Recognizing your grief
Grief and progressive neurological illness
It’s been hard for her to lose the things that are important to her. She played the guitar for years – it was always her thing. To not be able to play has been a huge loss for her and for me too. What I wouldn’t give to hear her play again.
There has been a lot of uncertainty over the course of her illness. It sometimes feels like a waiting game, so we just take things as they come.
Progressive illnesses don’t affect everyone in the same way. As the illness progresses, the losses will increase. Changes in physical abilities or other capacities over time can lead to a sense of loss for the person who is ill and those that care about them.
Your own grief may be impacted by the particular changes that the person is experiencing. You may grieve their losses in addition to the losses you are experiencing. You may be grieving for both of you.
Click on each box below to read more. Remember that a person may not be affected by all of these.
If the person is no longer able to do things or care for themselves, you may feel a sense of sorrow at their loss of independence or additional pressure as a caregiver.
If the person can no longer have a voice conversation, you may feel a sense of disconnection. This can be particularly difficult if the person’s other brain functions seem to be intact.
If opportunities to share feelings or memories, or to resolve conflict become limited or lost, you may feel lonely, lost, or abandoned.
What may help
- Acknowledge the complexity of your grief and the many losses you are experiencing. You may grieve for the person who is ill, for yourself, and/or for others in your family.
- Naming your losses can help you to clarify your thoughts and communicate your experience and needs to others.
- Reach for support from family, friends, or local community groups.
- Contact illness-specific and caregiver support organizations like the ALS Society of Canada or Parkinson Canada.
- Look for new ways to maintain a connection with the person (e.g., through touch, music, or pictures).
