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.
In the flurried rush of attempting to care for the person with the new diagnosis, families are often unaware that the emotional response they are experiencing is grief. People sometimes assume that grief only applies if there has been a death in the family, but people experience grief from many types of losses.
Grief is our human response to a loss. It is primarily an emotional response, but it can also have other dimensions too (physical, cognitive, social, spiritual, etc.). When a loved one is diagnosed with a serious illness, family members may grieve. For many family members, the grief is complicated by the fact that they are still in the throes of family caregiving, and they may be expected to remain “the strong one” for the sake of the family.
Grief is not a linear process that moves predictably through various stages. While there may be stages to grief, those stages are not sequential; there is no graduation from one step to the next. Each individual may experience various elements of grief at different times and remain with one stage for a long time, or they may move through various stages rapidly all within one day. There is no correct way to grieve, and there is no such thing as “failing at grief”. It is an individual journey and process for each person.
There can be triggers for grief, and those triggers are as individual as the grief process. A trigger could be something like hearing a favourite song that you once danced to with your spouse, and grieving that your spouse can no longer dance. A trigger might also be a daily routine that has suddenly become difficult, and grieving the loss of ability or independence that changes gradually.
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.
Instead of looking for a reason that the illness is present within the family, seeking meaning can be a lot more helpful. Seeking meaning is looking for a silver lining—acknowledging that a difficult situation is the reality, but perhaps there can be some wonderful moments that are significant.
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.
The greatest thing you can do is to ask how you can best be supportive, and then LISTEN! Truly listen.
Allow family members to tell you what they need and what they want. Most of all, they will appreciate a listening ear who acknowledges their challenges and validates their feelings and experiences. Pre-judging or assuming what someone is thinking/feeling is not helpful.
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.