By Emily Turcios, RN, CHPN
Director of Patient Care Services
Well, the phone call finally came. You know the one—the fateful call that the adult children of elderly parents dread—the one you know is inevitable, but you pray you’ll never get.
On August 2nd, I was notified that my father-in-law had had a significant fall and was in the hospital. During his medical work up, it was discovered that in addition to his long ago-diagnosed COPD, he was also in congestive heart failure and had developed aspiration pneumonia. When we were informed that he was in the ICU and wasn’t responding well to treatment, we knew that we had to step in and help navigate his end-of-life care. Piece of cake for a hospice expert, right? The biggest challenge in all of this (or so I thought) was that he was not here in our local ICU. He was in the ICU at Central Peninsula Hospital in Soldotna, Alaska. We arranged our time off work, booked our flights, and off to Alaska we went.
Thankfully, my father-in-law made a slight improvement over the next few days, and we found out the day before we arrived in Soldotna that he had been discharged home from the hospital. I remember thinking to myself, “This will be easy. When we get there, we’ll just call their local hospice,” with the expectation that Hospice would handle it all. That’s what we’re accustomed to, right? That’s how it goes in Nevada County. Hospice manages everything from the beginning to the literal end, and beyond. All we have to do is call. In hindsight, I realize just how naïve that thought was. I truly had no idea how different Hospice looks in other communities.
I’d like to take a moment to paint a clear picture of what we walked into when we arrived at my father-in-law’s home in Alaska. When we pulled up to the house, we noticed 5 or so steep, rough, unfinished wood steps leading up to his front door. At the time, my father-in-law was wheelchair-bound, so getting him out of the house in an emergency was not going to happen. We noticed as we walked up the stairs to the front door that their porch light was not working. If you’ve never been to Alaska, you might not know that in the winter it is dark for 22 of 24 hours. We stepped inside the house and into the kitchen where we noticed that none of their kitchen lights were working. To get by, they had clipped an old work lamp to a kitchen cabinet and had draped the cord haphazardly across the countertop uncomfortably close to the sink. On the kitchen table sat a massive heap of paper bills, some opened, some unopened, some covered in dust.
My father-in-law sat on the couch, still wearing a hospital gown because none of his clothes could fit over his swollen legs, with loose, soiled bandages on both arms covering wounds caused by his previous fall. I noticed a cigarette smoldering in the ashtray to his left, just above his oxygen tank. To his right was a massive cast iron wood stove with dangerously sharp corners. The television sat in front of him, propped precariously on a few old boxes. Behind the TV sat a bookshelf that was not secured to the wall, and only the top shelves had been filled. Beside the bookshelf was a head-size hole in the dry wall where my father-in-law had fallen. The refrigerator was empty except for a few condiments, but the freezer was overflowing with salmon fillets, an offering from generous neighbors who wanted to help but didn’t have much to give. We knew at that moment that he desperately needed the support of Hospice.
I immediately began rummaging through the stack of pamphlets that had been given to my father-in-law at his hospital discharge and found one for the local community hospice in Soldotna. I insisted that we connect with Hospice right away, so I grabbed the phone and made the call myself. Who better than the Hospice expert, right? I had the pleasure of speaking with Donna, the lovely receptionist who works the front desk, who informed me that “hospice” in Soldotna is entirely non-medical. She said they’d been trying for decades to create a legitimate, Medicare-certified medical Hospice program, but they just couldn’t get themselves organized. Currently, their services consisted of medical equipment rentals and volunteers who visit for a couple hours a week but are entirely hands-off. No medical care. No social work. No spiritual care. No hospice aides. No pet therapy or music therapy or massage therapy. We were on our own.
I have to be honest, I felt very foolish at this point. All the confidence I had felt in knowing how to navigate end-of-life care was gone. This was not the same system, and these were not the same resources. I can’t tell you how many times I thought to myself, “If only I could just pick up the phone and call Hospice!” That simply was not an option. The only choice I had was to muster every crumb of knowledge I had gleaned from years of working with a Hospice team and apply it as best I could with the hope that it would be enough to give my father-in-law a comfortable, peaceful and dignified end of life.
Our first course of action was to assess his environment for safety, which at Foothills Compassionate Care is a big part of what our team of clinicians does. We needed to fix the porch light, replace the kitchen lights, mount the TV on the wall, secure the bookshelf, move the furniture away from the wood stove, and teach him the importance of not smoking near his oxygen tank. Luckily for us here in Nevada County, we have Hospice staff, volunteers and community partners who are happy to provide these services, but in this case, there was no team or community support. It was just us.
Next, we needed to go through his bills and help them get caught up, assist them in creating an evacuation plan in case of an emergency, put together an advance healthcare directive, get him some proper clothing, buy them groceries, get them wound care supplies and change his bandages. Once again, these are all needs that the Foothills team either manages directly or facilitates. Our social workers help identify goals of care, provide resources for financial needs, help create emergency plans, and connect patients with community resources like Meals on Wheels; our Gift and Thrift provides clothing, furniture and housewares; our chaplains provide emotional support and spiritual counsel; our aides provide personal care and assistance with daily tasks; and our nursing team provides medical care and medication management. And that doesn’t even take into account the abundance of Hospice volunteers who give their time so generously simply to make others’ lives better. If only we had been in Nevada County…
Once my father-in-law’s immediate needs had been addressed, we needed to put a plan in place for his care going forward. Through countless phone calls to the local hospital’s dedicated social worker Lindsey, we were able to facilitate a referral to the community hospice so that my father-in-law could receive medical equipment like a wheelchair and a bedside commode, and so he could receive visits from a friendly volunteer once a week. We knew we also needed to secure medical care for him, and since the local Hospice did not provide nursing care, we had to find a primary care physician who was accepting new patients. Thankfully, we were able to schedule an initial appointment and request home health, but it was not without significant time and effort.
On our last day, as we were saying our goodbyes, I noticed that my father-in-law was more alert, more engaged. He smiled and laughed and shared stories from his past, and there was a sparkle in his eyes that hadn’t been there when we arrived. It occurred to me that I’d been so wrapped up in fixing everything for him that I hadn’t stopped to notice the improvement. It’s pretty amazing what a bit of attention, kindness and respect can do for a person—all things that Foothills Compassionate Care gives freely.
As we left his home, my father-in-law pointed out some family heirlooms that he asked us to ship back to our home here in Nevada County, so before we went to the airport, we stopped at a post office in Anchorage. The postal worker who assisted us was woman named Karrie who had moved to Anchorage from Salt Lake City to care for her 37-year-old daughter who had just died two weeks prior of metastatic colon cancer. Her daughter had no medical, social or spiritual support at the end of her life, not because she didn’t want or need it, but because it’s just not available. We lamented about the challenges of navigating end-of-life care without any direction or resources, and how the absence of support is overwhelming and deeply isolating. I could feel the breadth of Karrie’s grief, intensified by the fact that no one was there to help her coordinate services to provide her daughter with a peaceful, dignified death.
I witnessed firsthand what it looks like when a community lacks the support of Hospice, and it is tragic. It is painful. And it makes me profoundly grateful to live in Nevada County. How fortunate we are to have Hospice in our community! How lucky we are to be able to pick up the phone, make a call, and be wrapped in the loving, supportive embrace of our friends and neighbors! There is a reason Foothills Compassionate Care is a pillar of our community—it provides absolutely essential services that will allow each of us to live our very best life up until the end. So please, please consider making a donation to Foothills Compassionate Care. Your generosity is what allows us to continue our mission of service.
The end of your life deserves to be lived with just as much joy, comfort and peace as the beginning. Our final years matter. Help us be here for yours.