Lessons learned before their time

Another trip to Michigan, this time, things were serious. My then husband’s elderly mom Diane had fallen and injured her head. We arrived just in time to visit with her. She had regained consciousness after surgery to relieve the pressure. Sue, Larry’s sister, was already there. (Names have been changed for privacy.)

Later in the early morning hours, Diane slipped into unconsciousness again. The doctors did not anticipate her spontaneously waking up, and another surgery was ill-advised. The hospital connected us with a nearby hospice center. 

Kairos Dwelling in Kalamazoo Michigan was not what I expected. (It was that odd feeling when you have no lived experience to draw from, and yet what does reveal itself, is not what you thought it would be like.) Diane was transported by ambulance. We met her there via our rental car. She was already settled in her room. Kairos is a tidy, wood-sided, house. There are only four rooms for patients. When you enter, the smell of freshly baked cookies greets you along with the warm smiles of their volunteers. There is a kitchen and comfortable furniture.

We gathered in the small, clean bedroom where Diane was seemingly asleep. She looked peaceful. We didn’t really know what to do next. The other siblings were notified. Larry and Sue tried to convince their brother and sisters that it was important to come to Michigan now. 

No amount of cajoling or guilting persuaded the rest of the family to make the trip. Several years before when their father had passed, everyone had rushed to be together. From the stories I heard, there had been a frenetic energy amongst all the kids to try to save their dad. He was the star of their family and had always been. Their mom was just a mom. After her husband passed away, Diane moved into an assisted living home where she knew a few other residents. Her eyesight was close to gone, and she had mobility issues. It had felt like the right choice at that time.

At some point during that first day at Kairos, a volunteer offered to guide us through what to expect. She mentioned that food and water at this point would not be forced on Diane. Her breathing would change as her body began to transition. The volunteer warned us that some of the sounds might be scary while assuring us that Diane was not in pain. Our exhaustion must have been palatable. The volunteer finished by urging us to eat and get rest. Their last bit of advice was coupled with the answer to our unspoken question, what happens if Diane passes away without anyone in the room? Apparently, most people passed away when they were by themselves. Many of the seasoned volunteers felt as though patients hung on for their family members and loved ones; they chose to pass away in solitude.

I remember paying very close attention to all the information the Kairos volunteers shared with us. I was also feeling a little bit like an outsider who was present for one of the most intimate moments of a person’s life, their death. Throughout the time we were there for Diane’s hospital stay and ultimate passing, I told myself to stay present and learn from this experience. There was a sense that I would need this information.

Less than a year later, my grandmother was admitted to the hospital. She originally arrived with an antibiotic resistant infection. She was soon unconscious and in septic shock. My mom was distraught. She wanted the doctors to offer a way to save her mom. All the options felt very highly invasive with questionable outcomes and diminished quality of life for my grandmother. The most ‘promising’ suggestion was to remove a significant portion of my grandmother’s colon. If she survived then she would wear a colostomy bag for the rest of her life.

The lessons from Diane’s death came back to me. I encouraged my mom to rest a bit, to have something to eat. My mom and I were able to take some time and talk through the options. We kept my grandmother’s dignity and pride in our hearts as we contemplated the difficult choice we were being asked to make. It had already been a tough transition for my grandmother from independent living to assisted living. She hated the oxygen tank that trailed her everywhere. She resented having to give up smoking. She missed grocery shopping and cooking. She hated the food at the place she was living. There was little joy left in her life. 

What I learned from my time at Kairos served me well. I was able to show up for my mom as well as for my grandmother. I knew in my heart that my grandmother’s time was near. I knew that my mom felt like she had to do everything possible for her mother. Sometimes there is nothing we can do except be present. These are the lessons learned before their time.

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