Alzheimer's Reading Room
"Come over here, I want you to hear what death sounds like."
I was twenty years old and it was a little past three in the morning when Dr. "H." from Northwest Hospice beckoned me from the doorway of an elderly assisted living resident's room to come and join him at her bedside.
She was laying in her bed with her eyes closed and mouth open with increasing pauses between labored breaths.
I didn't move, I didn't want her to pass away, I didn't want to be there when it happened and I sure didn't want to come any closer.
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"I want you to hear this." He said again more urgently, "It's called the death 'rattle' you'll need to know this one day." I listened to her chest with his stethoscope. I noticed the big pauses between each labored breath and I heard a sound I wouldn't ever forget. Moments later she was gone and he was charting the time of death and making calls to his team.
That was my first time being present during someones passing and more than twenty years later, this experience and the few others there had been in between would prepare me for the time it would be the hardest.
I'd grown up around seniors my whole life. I'd probably just about spent more days in a seniors home or care community than not over the last three decades. Although my path veered away from direct care into the administrative side of the health care industry, I never forgot my professional roots as a caregiver.
I knew that none of those professional experiences would prepare me for where I was now going and what I would need to do.
The moment my family members and I got the call from my Mom about my Grandpa's condition, we acted immediately. Some of us flew through the night coming in from all four corners of the country to be there for the man that had always been there for us.
It would be hard to explain in this limited space what my Grandfather meant to me, what he meant to all of us.
People have a tendency to canonize the departed, engage in the kind of revisionist history that re- imagines the person according to a preferred portrait we paint in our minds' eye and that often bears little resemblance to the nuanced life that they actually lived. There was no need to do that with Grandpa. His whole life was spent in humble and cheerful service to others; his God, his country, his family, his neighbors and anyone he encountered in need.
He was the sum total of the best character traits humanity has to offer wrapped up in one flannel shirt wearing, salmon fishing, waffle making, gin rummy playing, baseball watching, church going, family man.
Now Grandpa was the one in need. His years long battle with Alzheimer's had taken a rapid turn for the worse after a swallowing difficulty (a common complication associated with the later stages of the disease) caused him to choke at a meal.
I braced myself as I walked down the corridor of the hospital toward the sounds of my family's familiar voices.
This time, the frail patient I saw lying in bed was someone I had loved all of my life. His kind blue eyes closed and usually smiling mouth open wide as the chest that once received our childhood hugs and absorbed our adolescent tears now struggled between unbearably long intervals to process the oxygen Grandpa was receiving.
Three generations of our family were already at his bedside, including his children, most of his grandchildren and my grandmother, his beloved wife of over 65 years.
It would've been easy for us to give in to anticipatory grief, to get lost in the sadness that his physical absence would soon bring after all of the months we spent losing him cognitively due to Alzheimer's. It would have been a lot easier to let the constant tears welling up flow freely into unrestrained sobs, but that's not what we did, that's not why we were here.
We did cry together in his room but not nearly as often as we smiled. To a passerby, it might have looked like a happy occasion was taking place in his hospital room, and that's exactly what we wanted for him. We didn’t want to wait to have his "Celebration of Life" after he passed; instead we wanted him to be included.
We borrowed chairs from the visitors lounge and unoccupied patient rooms on his floor and gathered around his bed sharing the stories and favorite memories of Grandpa that when woven together make up the oral history of our family.
While the strains of his favorite Glen Miller music could be heard playing from the portable stereo, we massaged his contracted hands with calming lavender scented lotion, moistened his lips with lemon flavored wipes and above all else, prayed for him and hoped he would once again open his eyes while one of us kept a reassuring hand on him so that on some level he would know he was not alone.
We set up a schedule so we could take turns with some of us staying with Grandpa and allowing some of us to get some sleep or go home from the hospital for a quick shower, but we would never need to use.
My younger brother, David ("Davey Doodle") and I volunteered to stay that first night with Grandpa.
Doodle and I spent the night with one of us on each side of Grandpa's bed, each holding one of Grandpa's hands, routinely requesting fresh warm blankets, continuing to moisten his lips and gently massage his hands. We shared with him all the wonderful things we learned from him, recounted family folklore and favorite memories, and prayed for him. We talked to him about our lives, our families our hopes and our dreams, just like we always did. His eyes remained closed, his mouth open.
The nurse's took turns bringing us coffee and hot cocoa so we didn’t have to leave his side and asked us to tell them something about Grandpa because "He must be pretty special to have had so many of his family members here earlier". His favorite music provided a poignant soundtrack to Grandpa's life story as we told it again and again to each new nurse that came in.
As late night turned into morning, Grandpa's breaths became much more labored and farther apart. It had been less than 24 hours since he had been admitted to the hospital and I knew because of what I learned all those years ago that we wouldn’t have much longer.
My Mom was the only one that could get to the hospital fast enough to join us. While my brother and I softly stoked Grandpa's hands, my beautiful Mom told her Dad that she loved him and that she would "always take care of Mom".
We told Grandpa it was okay to "go" if he thought it was time. We told him that we knew when he got to heaven that he would get to see his parents again, get all of his wonderful memories back, catch plenty of "keeper" size salmon, and always have a winning gin rummy hand. We were smiling and delighting in naming all of the people, places and things Grandpa loved, each one of us adding another layer of his favorites to our version of his idea of heaven.
While my Mom, my little brother and I took turns sharing this descriptive picture of heaven with him, my Grandpa passed away.
We lost him four years ago and the ache from the loss his presence in our family has created has not gotten any easier to bear. It hurts the most when I think of the grandchildren that will never get to know him like we did, or when I really need his advice and he's not here to ask, and especially when I see my Grandma's heartache and longing for him. What doesn’t hurt is when I think about his last day on earth.
I'm proud of us as a family for doing what he taught us to do through his lifelong example of putting others first. On Grandpa's last day with us, we didn’t spend those precious hours fulfilling our own needs around the fellowship of our shared impending grief instead we coordinated wordlessly to make sure whatever time he had left with us, was the best it could be.
My Grandpa's last day was filled with loving whispers from his wife, joyful stories of his children, the recollections of his grand kids, and the sounds of his favorite music. His last day was filled with the reassuring touch of his loved ones, the constant sensation of warm blankets, and the calming scent of the lavender plants so prevalent on the Northwest peninsula where he lived and surrounded by a love so strong that I'm convinced he could still feel it.
We fell apart many days after that one and we still do, but we didn’t do it that day, we wouldn’t let ourselves do that on his last day. On that day, we gave him the only thing we could, the only thing that he might have needed or wanted in that moment; we gave him The Generous Gift of a GREAT Good-bye.
About Mara Botonis
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