Where the Grief of Change Finds Help and Hope
By Tamra Mohs, Genesis Hospice, Nurse Practitioner
Observing and anticipating change
One of the most important reasons for hospice care
The entire team spends time recognizing, explaining and coaching patients and their families about coming changes. As humans, we desire tangible milestones and signs to tell us where the dying person is on their journey. We want this partly to understand what is happening and sometimes to mark the long spaces of simply “waiting.”
We watch for changes in skin coloring that tell us the circulatory system is changing and breathing changes that show changes to the lungs. These physical signs of change help us to recognize and accept the reality that death is indeed approaching.
It is not only the patient, however, that goes through significant change and grieves. Families also have to work through the end-of-life experience and grieving process. Over time I have noticed a familiar pattern with family members. Signing into hospice brings a realization that death truly is inevitable. This, most of the time, affects the family more than the patient. I find that patients reach a level of acceptance long before the family does.
I remember vividly a couple where the wife had battled cancer for several years. She was declining and refused any further interventions. She was exhausted from the battle and “ready to die.” Her husband, however, was not in the same place.
He pushed for hydration and medications to continue while she stoically refused. He broke down in tears and said, “I am not ready. I can’t lose her.” While she had a physical journey to complete, he had a longer road to travel for this end of life experience. This, for me, is one of the most important reasons for hospice care.
You need to help us through this. We have not done this before.
We work as a team because people have a variety of needs.
While we can use medications and physical measures to ease a person’s pain and anxiety, families need other interventions. Our team of nurses, aides, social workers, chaplains, grief counselors, volunteers, massage therapists, and musicians all have a role to play in supporting families before and after the death has occurred.
Most of us feel it is acceptable to lean on others during times of stress in other areas of life. Raising children even has its own slogan: “It takes a village.” Yet when it comes to dealing with dying, something that most of us have very little experience in, we struggle to ask for help.
At Genesis Hospice, we love the families who can simply state, “You need to help us through this. We have not done this before.” They are open to learning what the patient is going through and also what they can anticipate going through in their grieving process.
We work as a team because people have a variety of needs. While one person may need the clinical information from the nurse, another may rely heavily on the chaplain for spiritual care. There is no “right” way to grieve. We simply meet everyone where they are and start from there.
It is sometimes easier for someone to look at the situation as a huge life change and explore how they handle change in general. This allows some exploration that is unattached to the grief responses that are often very overwhelming during this time.
Managing the pain of grieving at a time people need it most
Hospice exists to help navigate the changes.
Returning to the patient and husband that I mentioned earlier, the final leg of her journey was quite different than what they were experiencing when we first met them. While the patient told us she was ready for death to come, it took her body six weeks to make that journey. She was not pleased that she could not control this process through sheer willpower. There were many quiet bedside talks as we slowly worked through her stoic exterior to the emotions that occurred while waiting to die.
During that time her husband slowly changed his focus from what he needed for his own emotional state to what was best for her. He was able to encourage her to let go. He could honestly tell her that he wanted her to be free of her pain. He was able to speak to the difficulty of going on without her and tell us stories of what a spectacular woman she was. I can still bring to mind the visions I have of her hosting a party and lighting up a room, just based on the stories he and his children would tell. He found assurance that she would live beyond her failing body.
It is said that change is necessary in life; it is also necessary in death. Most people losing a loved one chafe against this imposed change. Hospice exists to help navigate the changes. We watch and support the body that is shutting down. We watch and support those who are grieving.
Get more support online or call our Genesis Grief Support Helpline at 563-421-5000.