The call came at 11pm. In the dark of my bedroom, my sister’s nickname flashed brightly on my cell phone. It was 6am in Germany, where she lives. Her ringing me at that hour meant nothing good.
“Sorry to call you now but I wanted to let you know right away. Mom fell in her room last night.”
In the wee hours of July 4, 2023, Mom had fallen in her room at a group home for seniors with dementia. She had landed on her head so forcefully that one of the caregivers down the hall heard the bang. An ambulance was called because of the laceration on Mom’s head. The first hospital she was taken to did a scan, detected a massive brain hemorrhage, and did not want to attempt that kind of fancy neurosurgery.
Mom was transferred to a bigger hospital in the nearby city of Deggendorf. At 3am, a neurosurgeon evaluated her injury, read her living will, and tried to reach my sister, who had legal authority for Mom. When he wasn't able to get ahold of her, he decided that this was a "repairable injury" and performed the surgery.
Mom was in the ICU now, in a coma.
“That’s exactly how her father died,” I blurted out, my mind flashing back to Mom receiving the news of her father’s fatal fall. I remember Mom getting that call (I was ten at the time) at an odd hour, also across the Atlantic. Her sixty-year-old dad had fallen on his head playing ice hockey with this kids and grandkids on his pond in rural Michigan. Mom received the news that he was in a coma in Germany, where she’d moved with my dad and was raising her family. Her dad had suffered a brain hemorrhage and died a few days later.
In contrast, Mom was now 86 and already wildly disoriented by her advanced dementia. Should she wake up from this surgery, she most likely would not understand what had happened to her.
Mom did recover in the sense that she suffered no further calamities.
Three days after the brain surgery she did wake up, if one can call it that. Her vitals were OK. She was breathing on her own. Once in a while, she moved her limbs indiscriminately.
I had flown to Germany in the meantime, staying with my sister. Our brother had come in from Salzburg, Austria, where he lives, a two-hour drive from our sister’s. He and I were now sharing the bunk bed in my sister’s basement guest room—a curious but welcome replay of our childhood arrangement.
Every day, we made the one-hour drive to the hospital, beautifully located in the foothills of the Bayerische Wald, a low mountain range in northern Bavaria.
In the ICU, with monitors beeping and tubes coming out of her every which way, Mom did open her eyes sometimes. Once in a while I got the feeling she was actually looking at me, but I also felt that her look was basically saying, "What the hell? I never wanted to be in this situation! I told you so! I made a living will not to keep me alive on a ventilator and a feeding tube!"
Mom was now exactly in this situation: being kept alive by machines and tubes.
On the 8th day in the ICU, my sister and I were able to sit Mom up at the edge of her bed. (Our brother had briefly returned to his regular life and job in Salzburg, always “on call” with us.) Mom managed to utter "lalala" for quite some time, and my sister "sang" with her. Music had been central to Mom’s life. She was an opera singer after all. The dementia-appropriate red radio my brother had gifted her was one of the few things that accompanied her from the group home to the ICU. A memory stick in its backside with a playlist my brother had assembled had Mom’s kind of music undulating through the sterile ICU.
Outside the hospital, there was a comfy swing. My siblings and I adopted it as a spot to decompress after our ICU visits. The above picture is from our first visit together after I flew in from Chicago, grateful that at least we were going through this ordeal together. Swaying back and forth in the swing, in the hot summer sun, we were living in a nightmare that ticked along, slowly unfolding.
What to do about this? What now? Mom was alive, but was it a life?
At night I would lie awake, in the lower bunk, the image of Mom trapped in that awful ICU bed haunting me. How to get her out of this situation?
In those nights, Frank Ostaseski’s book The Five Invitations book, recommended by my sister, was a great help. It framed what I was experiencing. I was reading about how the end of life works, how people die, and how to deal with that, as I was witnessing what seemed to be my mom’s end. The swing outside the hospital very much fit the fourth invitation:
“Find a Place of Rest in the Middle of Things”
Similarly, as the ICU impasse ticked along, my sister would quote the fifth invitation:
“Cultivate Don’t Know Mind”
Eventually a hospice worker my sister knew advised her to request a consultation by a palliative care doctor. The next day, after nine days of basically vegetating in the ICU, where doctors told us that it was “amazing” how much our mother had “recovered,” and we were obsessing about the fact that Mom was unable to swallow, let alone get up, the palliative care chief called my sister and announced that she was admitting Mom to her unit.
All of a sudden, things moved swiftly. A pleasant palliative care nurse appeared and wheeled Mom’s bed to the Palliative Care Unit. There, a different atmosphere reigned altogether. The palliative care unit’s walls were painted a soothing spring green, and plants adorned the reception desk made of pine wood. As we entered, my sister and I, following with Mom’s red radio and other personal items, felt weights slide off our shoulders.
“Why don’t you wait in the lounge while I get your mom situated?” the palliative care nurse said to us.
There’s a lounge? Where are we?
Another caregiver appeared and showed us around the lounge. It featured a kitchen aisle with real dishes, a coffee machine, and a fridge stocked with juices; a living room set up with couches, cute plants, and even a balcony where one could sit and get some fresh air.
We had barely settled in the lounge when the palliative care chief, her dark hair pulled into a tight ponytail, called us into her consultation room.
As she sat down opposite us, she announced, “So, since your mother suffered irreparable brain damage…”
We gaped at her. This was the first we had heard of “irreparable brain damage.”
The shock must have been written all over our faces, because she quickly caught herself and said, “No one told you?”
Indeed, no one had. We knew that a brain function test had been performed a few days earlier, but, despite repeated requests, my sister had not received the report from any of the ICU doctors. On our daily ICU visits, we had always seen a different doctor, who had to consult whatever patient paperwork was lying about, to give us information about Mom. Often, we had not seen a doctor at all, as they were busy dealing with other patients’ horrible brain injuries. One time, as I sat by mom’s ICU bed, I witnessed a catatonic body being wheeled in, a motorcycle helmet perched at its feet.
The palliative care chief shuffled her papers, pulled out the brain function test and said, soothingly, “I will make copies for you.”
Until she returned, we marveled at the stone cacti basket on the conference room table and the shelves behind us, filled with books about the end of life.
Indeed, the report stated, in black and white, that Mom had suffered “irreparable brain damage.”
The palliative care chief proceeded to inform us, in her calm, nasal, Viennese voice, that:
Proteins are the essence of life. She could order a metabolic blood test to determine where Mom’s body was at. Did we want that?—Yes!
Supplying Mom’s body with fluid and nutrition via a tubes was counterproductive. Her body was, most likely, in the process of shutting down, i.e., dying. Pumping nutrition into her stomach would take all its remaining energy to somehow digest it. Pumping fluids into her body would most likely result in them accumulating in her lungs with pneumonia as a result. Her body did not need fluids anymore.
Instead, the task now was to keep Mom comfortable. The port for administering pain meds was still in place on the side of her neck. Often, the palliative care chief explained, the other senses of the dying, such as smell and touch, still work, and so they administer, for example, aromatherapy and massage to the dying.
In addition, she advised us, mercifully, that “the dying also need time alone.” And, “mothers often do not die with their children present.”
We asked her, when the metabolic test’s results came in the next day, to meet with us and our brother (whom we had, in the meantime, called to join us again). Of the three of us, he had held out the most hope of some kind of life materializing for Mom.
That evening, with Mom finally in the right place (so our assessment), I kept my sister from going out on a job assignment in the evening.
“It is not every day,” I said, “that you learn your mother’s life is beyond hope.”
We sent our brother the brain function results. By the time the three of us met with the palliative care chief again the following day, our brother had already accepted that we were facing the end.
Across the table from the stone cacti, the palliative care chief told the three of us:
“The test we did shows that your mother’s metabolism is barely at survival level. I see this often in my practice. The family is stunned that grandpa was out eating ice cream the day before. Then something happens, like a fall, and all of a sudden, one health calamity chases another. In fact, at the end of life, quite often a person’s functioning is a house of cards, and the smallest tip will have it collapse.”
To this day, I cling to this explanation of hers: At the end of life, quite often, a person’s functioning is “a house of cards.”
My husband and I own wooded property in Indiana, and we have come to learn that trees die, for now apparent reason whatsoever. They are, simply, at the end of their life. And so, as I learned with my mother, are we humans if we make it to a ripe old age, as my mom did with 86.
Forty-eight hours after being moved to the palliative care unit, Mom died peacefully with all of her three children and my niece at her bedside.
My sister, tears in her eyes, had summoned my brother and me, as we had been taking a break in the lounge that Saturday afternoon.
“I just mentioned Dad’s name,” my sister said, “and Mom’s eyes shot open.”
We were all aware of the fact that, near the end, people tend to see their loved ones who have already passed on.
That morning, the palliative care chief had called my sister, advising us that Mom’s condition had markedly worsened overnight. If we did want to say good-bye, we should promptly come to the hospital. We did.
Contrary to the palliative care chief’s cautioning, Mom died with all of us present. And that fit her modus operandi: She liked being with her three kids, but not necessarily the extended family.
Her belabored, throttling breath slowed, soaring again and again, in ever greater intervals, as if she were struggling with sleep apnea.
“Sounds like she’s revving up the Ferrari to ride into heaven,” my niece commented, and we all couldn’t help but laugh through our tears.
ABBA’s song “One of Us” wafted from Mom’s red radio, and as I held one of her hands, I thought the lyrics said, “One of us is dying.” A fitting tribute, it seemed to me, for Mom to take her last breaths on cue to a song. (We later checked to find that the lyrics actually say, “One of us is lying.”)
When she seemed to have stopped breathing, I put my ear to her chest. Indeed, there was no thumping below. As I looked up, my sister shook her head.
Mom was gone.
This was my first time witnessing someone pass from this world to the next, and it was a phenomenal experience. Grand, solemn and beautiful.
I gave birth to three children, so I have been there for the pain and gore of the beginning of life. But I had not been there yet for the end.
My first experience of death had been my dad’s sudden, tragic passing, one day to the next, of a massive heart attack at age 51. Ever since, I associated death with tragedy. I am thankful that my mom, so late in her life, and in mine, showed me that
Death can also be beautiful.
Mom died in the afternoon on a hot, hot July day. We took our time to take our leave.
Eventually, my niece departed with a friend, and we three siblings drove down to Deggendorf’s bustling cobblestone market square, where we had found, over the course of Mom’s hospital stay, a favorite restaurant (“Find a Place of Rest in the Middle of Things.”).
Sitting outside under giant sun umbrellas, we had a nice lunch together. Then, the three of us, with plenty of daylight to spare, drove up winding roads into the Bayerische Wald and hiked a short trail my sister knew to the viewpoint pictured above, overlooking the city where Mom had died. We were looking out at the entire state of Bavaria, so it seemed.
Taking in the view felt like an apt tribute to Mom, who had always loved vistas and the mountains, and whose soul was surely out there somewhere, finding its way to the next world.
Thank you. Your description of your
mom's death Is comforting.
Thank you for posting this, Annette. My father-in-law is currently in hospice at home but it has taken time to, as you put it, find the right place for him. So the struggle that you and your siblings had to get your mom there resonated with me. Additionally, you pointed out beautifully how the family members need "respite' and time to reconcile themselves to what is going and to celebrate the life that is ending.