What to Expect When You’re NOT Expecting
Becoming acutely aware of the healthcare landscape at end of life. By C. Laura Quinn
Life is a dress rehearsal for our role reversal at the very end. We want to honor our parent’s final wishes, but in a current healthcare landscape that doesn’t necessarily honor them back, sometimes it just comes down to doing the next right thing.
Just when I was ready to make some big moves in my life both physically and figuratively; it all just got more than interesting. It got life-changing—as in one life just beginning again and one coming to an end.
We all continue to hear about living in these unparalleled times where this ever-changing virus is ever-changing us. Now, three years later, as time moves along through this pandemic, our modifications linger. Supply chain shortages, food insecurities, job changes, volatile financial markets, unsteady school systems, and lives remain in upheaval as we search for new ways to survive this.
In one, not so quiet personal corner in all of this consequence is restructuring our residences. Children were schooling at home with nothing more than a simple sheet pulled between the living room and kitchen to become a makeshift office space for their parents. We carved out new outdoor space to subsist as a crude alternative for a crowded park system. Or in my case, a relocation to my elderly mother’s home after a stellar real estate transaction in that extraordinary seller’s market which left me with nowhere else to reside.
She was having some health issues, so this seemed like the best option for both of us. We became instantaneous roommates—and good ones at that.
But then came the challenges that any two people might encounter in co-habitation as relatives, spouses or roommates. Especially with family, because even after decades since having lived together in the first place, the second act is loaded with new assessments. A middle-aged career woman and a stoically aging elder who was by all means holding her own as far as flexing her independence and freedoms now intertwined in the delicate dance of everyday living.
One year in—we were doing swimmingly well with just some humorous adjustments and anecdotes worth sharing here. I’ve always found writing to be a source of release and sanity—and I have to believe others are experiencing some of these very same things. Just a few small skirmishes over the temperature in the house. After all, 82 degrees in the winter is seemingly unreasonable when I need to sleep with an open window while it’s snowing. And working from home on occasion with the ever-present TV on at top volume at all times, and a constant stream of robo-calls where my mother feels compelled to answer each one just to put the caller in their place. “My back feels fine… why are you calling?” “Don’t you dare call here again; I wouldn’t vote for you if my life depended on it—do you hear me?!” And, never before had the mail, recycling or garbage taken on such pertinent importance each week. And as my colleagues and friends started to get used to the random mom photo-bomb appearance during my work Zoom calls or spontaneous loud bellow that, in fact, “the neighbor’s cat was loose and at it again,” we had settled into our new normal.
As I’ve mentioned, she was having some health issues. It was during this time that we learned she had a significant malignant mass in her right lung. Struggling through COPD and some other health issues as well, it now meant her time was limited and I was dedicated to making that time meaningful. One recent morning in early January 2022, I found her face down in bed disoriented with a raging fever. We were all experiencing the most recent post-holiday Covid surge. The hospitals were full, including the lobbies, waiting areas and ER. I opted for a nearby urgent care. This is where the end-of-life journey began—in the surreal reality of this ongoing pandemic. I had already witnessed people who lost loved ones and didn’t have the opportunity to say goodbye that first year. Now, it was clear that I might very well become one of them. After hours in the waiting room watching one person after the next come in with suspected Covid symptoms; all of us in waiting shared that collective all-knowing glance from behind our masks that we certainly didn’t intend to catch the virus now. Not in this way. When I finally got called back to be with my mother, the situation was dire. She had a unique case of pneumonia that had her already weakened, Swiss-cheese-for-lungs and diminished immune system couldn’t shake. So, off to the hospital she went—the very thing I was trying to avoid. Knowing there was a staunch no-visitors policy in place, I was faced with saying goodbye in the case that she didn’t make it out. What if she needed something? How would I know how she was being cared for? Would she spend the entire night in the ER before even getting a room? She was swept away by the ambulance, and I was left standing in the snow with the reality of what might be the end of our mother-daughter bond.
We all know that one day we will lose our parents. It’s part of the natural cycle of life. As a little girl back in the 1970s when I feared this idea of losing a parent the most, I would have never imagined that it would all transpire during a global health crisis. Arriving back home, the unraveling began. I believe we all imagine what this stage of our lives might be like along with the same questions in mind. Will I have the opportunity to see her through to the end? How do I get her affairs in order and plan a funeral? My head was swirling with unanswered questions and unknown next steps.
This journey went on for the following ten months. It was hell on earth matched with missteps at every turn. She was punted back and forth from the hospital to a variety of acute care settings—one worse than the next. I would carry her overnight bag, plants and belongings through the plastic-covered quarantined hallways as fearful people wearing masks were dodging any human interaction at any cost. I’d carry them across the street to the first acute care location for a few weeks as she continued to recover from pneumonia, only to then be punted back to the hospital after she fell. She fractured her hip because her call button went unanswered at the nurses’ station, and she attempted to make it to the bathroom on her own. Strike one for acute care.
Mind you, I can completely empathize with the fact that the hospital settings were overtaxed with exhausted nursing staff and other Covid-related shortages. This was different. This is where there were enough people there to do their jobs, and they just didn’t. This issue was specific to the acute care and sub-acute care settings.
I’ve entitled this essay “What to expect when you’re NOT expecting” as a play on a theme. Many who have had children were gifted the book, “What to Expect When You’re Expecting”. A guide for soon-to-be new mothers as they prepared to bring new life into the world. A beautiful and expectant time in one’s life. However, just as universal for all of us what about the end-of-life?
As a society, we’ve dropped the ball when sharing expectations on how to deal with the other end of this spectrum: inevitable death.
In most cases, our elderly loved ones are not cared for in the same way that new lives are cared for within the healthcare setting. And this was a baptism by fire learning experience that I now share with the intention of better preparing and educating my reader.
So back to the hospital mom went for imaging of the newly fractured hip and a few days to decide if surgery was an option. It wasn’t. Her lungs wouldn’t make it through the anesthesia or surgery, so she was yet again punted back to the acute care across the street after only a few days. And there I was, once again crossing the busy street with more bags, plants and her newly acquired belongings strapped on my back.
She spent weeks trying to recover from her fall and the pain of getting through physical therapy. She was rapidly losing weight and the staff was hardly concerned that this might be a problem. I quickly learned that if I wasn’t there to help feed her myself, she went without eating. During this second stay, she fell out of a wheelchair because she wasn’t strapped in properly, her tablet was stolen, and so was her credit card. As I’d walk up and down the hallways to take a break, I’d inevitably see the nurse’s aides leaning against the wall, their eyes and attention on their cell phones while other patients were calling out in distress. I had done my homework and read the reviews on these places-rave reviews. Who was writing these?
Finally, we bring her home. This would be the eye of the storm—we just didn’t know it yet. We fell into a well-scheduled routine – One oxygen tank upstairs and one downstairs. Home PT, equipment, hospital bed, wheelchair, extra oxygen tanks were scattered throughout the house and a newly configured bedroom. This even warranted a new sign on the window by the front door that read, No Smoking Beyond This Point.
This brings me to what I could not expect because there was no known expectation. The fraught-filled, long days and nights. As she recovered, she was able to move about the house with the oxygen tubing threaded all around the floor; and more often than not, it would be wrapped around her ankle as I’d glance over in constant dread of an impending fall.
With the heat on during the summer’s hot and humid days because she weighed all of 78 pounds at this point, I worked and slept in a constant sweat; and was always on guard for the flipping of her tray table in the middle of the night or the bellow of, “Laura! I need your help.”
Part of me felt it an honor to be able to be with her during her time of need. A bittersweet feeling that I should cherish this time we have together and relish the memories. I had taken the time to find out more about her past and our family history. And was in fact knowing that I’d never regret a lot of this. But again, no one prepares you for this – not a book, church, self-help group or friend that may have gone through it. It is yours alone to experience—and it is truly life-altering in every way.
A few examples of this: I figured out how to shower her, I had to get in with her. Turns out it’s pretty tough to bring your oxygen into the shower with you. When the bridge of her front teeth fell out, I soaked them in a saucer and figured out how to glue them back in. Thankfully she’ll never really know how buck-toothed she ended up looking at the end, but hey, she could chew. Turns out, most dentists won’t see people on oxygen, who knew? When I did have to get her to a doctor’s appointment—it was a circus. Dragging a heavy portable oxygen tank into the car along with the temporary tubing, praying it wouldn’t run out in the waiting room or along the way. Folding the wheelchair up for the trunk, and then navigating a parking lot and doorways. Oh, and the power outages during storms were maddening. We had no generator, so this meant her oxygen wouldn’t work. Thank God for good neighbors who helped rig long power cables from their generator over the lawn and through the trees from their condo behind us into our back sliding door to connect to mom’s oxygen tank. All told, we had about six months of living together again after the hospital and acute care stays. I was charged with breathing treatments, medicine, meals, hygiene, physical therapy—I had an 81-year-old toddler. And a feisty one too.
She was seemingly well. The physical therapy had gotten her to a point of limited mobility—enough to go from the couch to the deck, and even into the kitchen for a snack. Always with the threat of falling, not being able to breathe or suddenly feeling sick. My adrenaline was on high alert all day and all night.
It was on Labor Day 2022, I heard the thud from downstairs where I was cooking. You can’t mistake the sound of a body hitting the ground. This was not her slamming a door or a tray table tumbling to the floor. Seconds later, “Laura! I need your help!”
She had many falls while I lived with her, but none like this. She shattered that same hip all the way through this time. The paramedics came and that was the last time she was ever home.
Given the severity of the break and excruciating pain she was in, we had no choice but to move forward with hip surgery this time… There was a very strong possibility she wouldn’t make it through the surgery due to her compromised lungs, but she had to give it a try. Despite an 80% chance of not making it through—she did. This was one strong-willed woman who wanted to live.
Now that she survived the surgery, she could recover. With her oxygen levels in good shape, she had what might be a few years in front of her. And with the right physical therapy, she should be able to walk again within weeks. Hip surgeries have great success rates and there was no reason her recovery would be any different.
This leads us to strike two at the next sub-acute care facility and the worst negligence I’d ever witnessed happened. This particular acute care center had staff up and leaving every week. The administration didn’t treat the staff well; therefore, the turnover rate was horrendous—hence, no continuity of care. Mom continued to be in agonizing pain which made no sense after the first few weeks of recovery.
It was then that one kind night nurse brought me over to show me. Mom had a diaper as well as bandages on over her hip. Other than the staff who changed her dressings, no one could see what was going on underneath. Her hip had become dislocated, and that entire leg began slowly twisting inward. It was a horrific sight. Her knee and foot were facing her other leg; and if she wasn’t laying down it would have continued to twist facing all the way backward. How could this happen? Why didn’t any medical personnel see this, fix this? Where was the orthopedic follow-up? I was enraged and confused.
In the continuing saga, a new fight for her life began. She was bedridden and mangled, yet fully spry, so she knew exactly what had happened. Too weak for another surgery, she would live out the rest of the time she had left this way. No amount of morphine would help the pain she was in. At 73 pounds, she now also had bed sores down to the bone due to complete immobility. How long would she have?
It was weeks before I could get a bed clearance at a hospice facility. It was impossible to bring her home with the kind of care she now needed, which meant going back and forth to the facility daily while balancing my full-time job and continuing to advocate and fight for her comfort every single day. I begged the nursing staff to stay on top of her pain meds and morphine only to see her falling behind and right back in agony. She was still losing weight, laying on a donut pillow and clinging to the railings on her bed just to escape the leg spasms and pain throughout her body. Again, no one prepares anyone for this or the overwhelming tasks of countless bills, navigating Medicare, and becoming a consummate patient advocate every day.
I cannot stress this point enough. You do not have to be a pro or have a background in patient advocacy—you just have to be a patient advocate. If you love someone, advocate for their care.
So why did this happen in the first place? A total misstep. Mom was supposed to have what’s called a stabilizer set between both legs after the surgery for the first two weeks. It was a large foam device with straps that would be placed between her legs as she slept and would prevent her from rolling around. I found it discarded behind her hospital bed, never used. I came to find out that when the nurse’s aides came to change her dressing and diaper, they just didn’t bother to set the stabilizer in place. There was no direction or follow-through given by doctors or staff. The medical staff was completely neglectful. We could only attempt to keep her comfortable, which she was most certainly not. When I mention that she was quite a fighter, she had navigated and survived breast cancer, brain hydrocephalus surgery, previous lung surgery, current COPD and lung cancer. But now she would die as a result of elder neglect.
A few weeks went on and her end-of-life care was no better. Still waiting for an open bed at a hospice facility, she was administered morphine on a sporadic schedule at the acute care, and got so frustrated at night when no one would respond to her call button to the nurse’s station. She got in the habit of grabbing the phone and dialing 911 as she was fully aware of her situation and her options. She did this a dozen times, and each time the police came because by law they had to respond. Guns in holsters and in full uniform they had to shake down the staff for signs of abuse. Our family was never called or informed of any of this. I found out days or weeks later via random staff members who volunteered the information.
Some relief came when we finally received notice that a room became available at a hospice facility, and transport was underway. As they wheeled her out to the ambulance for passage and the head nurse handed me an $8,000 bill for the pseudo hospice care, I had no trouble turning the bill into sky-borne confetti as I walked out the door.
Mom passed within three days of that transport suffering terrible pain through to the end. It was an unnecessary, avoidable distressful death, and we are all grateful now that she is no longer enduring the agony. The funeral arrangements, repast and details of her burial were yet further undertakings that were all learned as we went, but we got through it. The whole experience still stings of a slap and horror show that it was.
I once asked her why she watched all of those court TV shows like Judge Judy and Hot Bench, and she simply replied that she was very interested in justice. Well mom, you did not die in vain. If exposing this elder neglect and outright abuse prevents a similar incident for another family, then it is entirely worth sharing the story and reliving it here. Now my days living in her house continue in a much quieter way without her. I rarely put the TV on at all, and keep the temperature at a cozy (for me) 63. I can now close the window in my bedroom and make my way around the house without the threat of tripping over oxygen tubing or giving her Covid. I keep her urn of ashes on the top shelf in the living room where I glance up at it from time to time as if to check in with her knowing fully well she’s in a much better place. The result of her death has ignited my need to encourage and educate others how to take charge in these situations. The most unexpected gift was that in my mother’s death, she re-birthed me.