Thursday, March 31, 2022
When a loved one is diagnosed with a chronic illness or a degenerative disease, the diagnosis affects the whole family. It is easy to overlook the ways in which other family members are also impacted by chronic illness because the focus is upon the person who is unwell.
For many families, there is grief over the loss of a role within the family. It might be the role of primary provider if employment is reduced; it might be the role of fix-it-man around the house and no longer being able to operate tools; it might be the role of coordinating family events and family members feel scattered and disconnected. The change of roles and responsibilities can be a difficult transition and grieving those changes is a normal—even healthy and expected—response.
Grieving is an action. It requires effort and work. The goal of grief is not “to get over it”. Unfortunately, many families feel that the message from friends and sometimes even health care professionals is that they should “get over it” or “get back to normal.” When a family member is coping with a chronic illness, returning to “normal” is no longer an option.
The previous version of normal doesn’t exist. Illness has redefined what normal will be like. The goal is to adjust to a new normal—adjusting to the illness as a new reality of life, and recognizing that this will alter many aspects of life. Once families have begun to adjust to their new normal, they can begin to see hope for a newly defined future.
While this may seem like a subtle shift in mentality, it can result in vastly different feelings. Looking for reasons suggests that someone had to experience the illness in order to learn a certain lesson; looking for meaning is acknowledging that the illness has happened, and finding glimmers of hope will make the journey more meaningful.
How can you best support someone who may be grieving because of an unwell family member?
The most important thing you can do is to remain connected. Family caregivers constantly report that their closest friends and even other family members distance themselves because they don't know how to help, or they don’t want to impose.
One gentleman laments that while his wife was palliative, she had so few visitors. She felt the greatest relief from pain while a visitor was present, and her husband expressed this to friends and family, but few visitors came to the house because they did not want to impose. Visitors weren’t seen as an imposition but as a welcome relief.
A woman remarked that the comment “but you look so well!” (or that her husband, for whom she cares, “looks so well”) to not be helpful. While it is intended as a compliment, it shuts down any conversation about how she is truly feeling. She would prefer that someone just ask her how she is feeling, and be open to a conversation.
To best support someone else, be a listening ear and don’t distance yourself. Remember that the person with the illness as well as the whole family is adjusting to a new sense of normal.
Be wary of judgmental statements such as “things happen for a reason”, and instead help others to see some of the meaningful moments that have touched you and might also touch them.
Lissette Mairena Wong
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