Editor’s note: Maile Murphy is a student at Kapiʻolani Community College and an organizer with the Hawaiʻi chapter of the Young Progressives Demanding Action. For Maile, the importance of good long-term care for our elders is a personal issue. She is intimately familiar with the end-of-life process and deeply concerned with the well-being of these incredible, wonderful people, because she knows first-hand the worth and profound joy that comes from sharing precious time with our kūpuna. Both chambers of the legislature are considering bills (SB 534 and HB 607) that would establish and fund the kūpuna caregivers program to assist community members who are providing care for elders to stay in the workforce. Advocates will hold a rally tomorrow morning at 10 a.m. at the State Capitol to demonstrate public support for these measures.
In the summer of 2015, when I was just 20 years old, I found myself in a difficult situation. Earlier that the year, a dear family friend named Bob had been diagnosed with terminal cancer. Bob had worked with my grandfather in the history department at the University of Hawaiʻi at Mānoa, long before I was born, and continued to stay close with the family long after my grandfather passed away. Bob and his wife, Marian, were a holiday institution in my household while I was growing up; he would always save a wink and a few kind words of encouragement for me when I inevitably tipped the dinner table into one chaotic political conversation or another. When I was a teenager, I went through a rough spot, and Bob made time in his life to help guide me toward a better path. I have cherished memories of Bob, sitting across a table from me at the ʻĀina Haina Subway. With mussed, gray hair, a wrinkled collar and a tweed jacket on, he would ask me, “What do you love, Maile? What is it that you want to accomplish in life?”
Bob’s condition would deteriorate quickly, the doctors said, and he and Marian had no children or close family to help him. My father, grandmother and I made a family decision that we would do everything we could to help the couple. The house Bob and Marian lived in was unsuitable for their healthcare needs, so we moved them into an assisted living facility. They needed groceries, so I would stop at Foodland on my way home from work. Their dog was antsy, so my dad would take him for a walk.
Things settled into a manageable routine and my father left for a long-planned, extended hiking trip on the mainland. I became the sole care provider for my then-97-year-old grandmother, as well as a helper to Bob and Marian, in addition to my full-time job. It must be noted that my Tūtū, as I call her, has all of her marbles, and some of mine too. Even so, I became a live-in housekeeper and chauffeur. It was at this point, of course, that everything went ass-over-teakettle.
Events unfolded quickly and, by the end of a single day, Marian was in the hospital for an extended stay and Bob, worried that the care facility staff wouldn’t be enough with Marian gone, began living in my spare bedroom with his dog. Over the next week or so, Bob’s condition declined steadily and he started showing signs of dementia. It soon became evident that we needed more help around the house.
I discovered that a social worker named Rachel had been assigned to Bob’s case and contacted her. A few hours later she was sitting on my lānai, holding my hand and telling me what I could do and what resources were available to us. She introduced me to a nurse named Asia that had come with her from Islands Hospice and connected me with a service that would come to my house three times a week to give Bob a bath and do the household chores that, suddenly, nobody had time to tackle. Rachel answered her phone every time I called—every single time—even if it wasjust to say, “It’s okay,” and, “You’re doing the best you can. It’s going to be alright.”
Eventually, Asia gave me a prescription for liquid morphine and told me to keep it in my refrigerator until the time came that she would administer it to make Bob’s passing less painful. And there it sat in the refrigerator door: soymilk, ketchup, pickles and a bottle of liquid that would signal the end of Bob’s life. “What an absurd thing,” I thought to myself. It felt like I had entered the Twilight Zone.
Islands Hospice sent a nurse out every day to check in and help administer medication. They were there within an hour every time I called, even at 2 or 3 in the morning. The relief that constant support provided for me was immense. At this point, I was a shadow: I couldn’t eat, I couldn’t sleep and I was suffering from panic attacks almost daily. I vividly remember spilling something at work and just standing there, staring at it, crying. Everything had become so hard.
During the day, I would spend hours sitting in the living room with Bob, trying to comfort him in his confusion and allay his fear. At night, he wandered the halls looking for Marian.
Eventually, he didn’t even recognize me.
I knew the end was near, so I promised myself: “I will give Bob the best death that I can.” I tracked down an estranged brother to come visit him in his last days and, as soon as Marian was released from the hospital, I moved Bob back into his apartment with her so that they could be together. Rachel kept checking in, the hospice nurses kept visiting, the in-home care facility kept doing chores. I spent more time on the couch at Bob and Marian’s apartment than I did at home.
The next week, sitting in his favorite armchair with his dog in his lap, Bob passed away with a smile on his face. I had been at work, but a nurse had been there with Marian.
I was devastated. I am still devastated. But I kept my promise. I was able to give Bob the best death that I could and I was able to do it because I was not alone. In just one month, I lost 15 pounds, became incredibly sleep deprived, lost clumps of hair from stress and only remained employed because I was lucky enough to have a very understanding boss. Just a month. That’s all.
I’m not sharing this story because I want you to think that I’m great or brave or heroic. I’m sharing this story because I was lucky. There are people who do this for years without any help at all. We cannot abandon them. I can’t imagine how much harder it would have been without the army of nurses and caregivers that came when I called. I certainly would not have been able to provide the quality end of life for Bob alone. Easy and affordable access to end-of-life care is one of the single most important social services that we can provide. Every human being deserves the best death that can be given to them, and it is within our means to provide it. Please support Kūpuna Caregivers Assistance legislation: ask your legislators to pass SB 534 and HB 607.