By: Mallory Bachmann
Resources by: Alana McKay, LCSW
Guidance from a Fixel social worker on navigating loss, identity, and healing.
The Many Faces of Grief
At the Norman Fixel Institute for Neurological Diseases, patients and families experience grief in many forms, not only the loss of loved ones but also the loss of independence and the future they once imagined.
At the Fixel Institute, we recognize that grief is a process, one that is unique to each person and often comes in waves. On National Grief Awareness Day (August 30th), we remind our community to give themselves and each other grace. There is no “right” way to grieve and no timeline to follow. Allow yourself to feel the full range of emotions and know that your feelings are valid.
From this place of understanding, Fixel Institute social worker Alana McKay shares three common stages of grief that patients and families facing neurological disease often experience:
- First Stage: The realization that life will not unfold as expected. For many families, dreams of retirement, travel, and time with children and grandchildren may no longer be possible.
- Second Stage: The gradual loss of independence. As the patient’s abilities change, their partner often takes on the new role of caregiver. This stage is marked by anticipatory grief, as loved ones begin to cope with the inevitability of future loss.
- Third Stage: The grief that comes when the end of life is near, followed by the grief after death. Caregivers may experience anger, guilt, relief, or even numbness, each response a natural part of the grieving process.
While these stages are common, it is important to remember that grief looks different for everyone. No two journeys are the same, and each person’s experience unfolds in its own way.
A Resource for the Journey
To support families through these difficult times, Alana often shares The Mourner’s Bill of Rights by Alan D. Wolfelt, Ph.D. She recommends keeping this resource handy and placing it somewhere you can revisit when needed:
- You have the right to experience your own unique grief
No one else will grieve in exactly the same way you do. So, when you turn to others for help, don’t allow them to tell what you should or should not be feeling.
- You have the right to talk about your grief
Talking about your grief will help you heal .Seek out others who will allow you to talk as much as you want, as often as you want, about your grief. If at times you don’t feel like talking, you also have the right to be silent.
- You have the right to feel a multitude of emotions
Confusion, disorientation, fear, guilt and relief are just a few of the emotions you might feel as part of your grief journey. Others may try to tell you that feeling angry, for example, is wrong. Don’t take these judgmental responses to heart. Instead, find listeners who will accept your feelings without condition.
- You have the right to be tolerant of your physical and emotional limits
Your feelings of loss and sadness will probably leave you feeling fatigued. Respect what your body and mind are telling you. Get daily rest. Eat balanced meals. And don’t allow others to push you into doing things you don’t feel ready to do.
- You have the right to experience “griefbursts”
Sometimes, out of nowhere, a powerful surge of grief may overcome you. This can be frightening, but is normal and natural. Find someone who understands and will let you talk it out.
- You have the right to make use of ritual
The funeral ritual does more than acknowledge the death of someone loved. It helps provide you with the support of caring people. More importantly, the funeral is a way for you to mourn. If others tell you the funeral or other healing rituals such as these are silly or unnecessary, don’t listen.
- You have the right to embrace your spirituality
If faith is a part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you feel angry at God, find someone to talk with who won’t be critical of your feelings of hurt and abandonment.
- You have the right to search for meaning
You may find yourself asking, “Why did he or she die? Why this way? Why now?” Some of your questions may have answers, but some may not. And watch out for the clichéd responses some people may give you. Comments like, “It was God’s will” or “Think of what you have to be thankful for” are not helpful and you do not have to accept them.
- You have the right to treasure your memories
Memories are one of the best legacies that exist after the death of someone loved. You will always remember. Instead of ignoring your memories, find others with whom you can share them.
- You have the right to move toward your grief and heal
Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself and avoid people who are impatient and intolerant with you. Neither you nor those around you must forget that the death of someone loved changes your life forever.
Finding Support
When you or a loved one is ready to seek out support, the Fixel Institute is here to help guide you. A list of support groups as well as additional resources can be found on our website. If you are a patient at the Fixel Institute and are seeking additional support, ask your care team about counseling and social work services at your next visit.
Source: Wolfelt, A. D. (2023, December 21). The mourner’s bill of rights. Center for Loss & Life Transition. https://www.centerforloss.com/2023/12/mourners-bill-rights/