Five years ago today, my family and I surrounded the ICU bed of my dad watching him as he took his final breath. Earth Day– a day I’ll never forget, as it took on a whole new connotation for my family and I. Never has there been a more somber day than April 22, 2015.
This wasn’t supposed to happen. We thought we had more time. We went over and over what we could’ve done differently or how we could’ve intervened that would’ve kept dad with us longer.
He had been diagnosed a year prior with Progressive Supranuclear Palsy, better known as PSP. After several years of noticing subtle changes in dad’s health, it was apparent something was wrong; but difficult to determine what exactly was causing the balance problems, the slurred speech, the frequent choking spells, and the forgetfulness.
Did he have a stroke? Was it Parkinson’s? Could it be Alzheimer’s? Any time we tried to approach the subject, dad got defensive. It is true that he would go to his doctor on a faithful basis for routine check-ups and screenings. If the doctor didn’t notice anything, everything should be fine, he’d argue. He wanted to drop the subject immediately; and out of fear of upsetting him more, we would.
Finally, one day I was able to catch dad home alone. I became brave and told him how worried we were. How we needed to find the diagnosis, and how we hope there’s a treatment. For how do you tell a former teacher, principal, and school administrator that he’s been repeating things frequently. That he’s having some lapses in memory. That you’re worried about him driving.
Obviously, I had to address the elephant in the room. He was terrified that his brain was failing him. That brilliant brain of his, which was like a huge sponge that loved to learn and absorb everything he could get his hands on. What if he had an incurable disease like Alzheimer’s? It was clear that if he had it, he didn’t want to know. For knowing, would be a death sentence in itself.
After doing hours of research online, I began to believe my dad had Atypical Parkinson’s. No classic tremors were noted but he had many of the other symptoms. I remember pulling up my research on my phone and letting him read the symptoms, many of which he said he’d been having but never told anyone. Knowing then that it could be something other than the unspeakable and that there may be medications to lessen the severity of symptoms, he agreed to see a neurologist specializing in movement disorders.
I went to the doctor that day with my parents. I watched as the young specialist did an array of tests, with a notable interest in my dad’s gait and the way his eyes would track lines and lights. After a short wait, he came back into the room and gave us dad’s diagnosis of PSP. Finally, we have answers!
Our celebration was short-lived, however when he told us that most patients with PSP pass away within five years. The prognosis wasn’t good but medication may help slow down the progression of the disease, which is much more aggressive than Parkinsons. He gently told dad that he should no longer drive, and that he’d start him on a regiment of physical therapy for balance and strength, and speech therapy for his problems choking.
The drive home was quiet. All of us digesting the news that we thought we wanted to hear until we didn’t. Five years. We needed more time with dad. My kids were too young to lose a grandfather. How could we go on without him? That day, the cold, hard truth that life is no more than a vapor became all too real for us.
We visited more. We worried more. We loved more and laughed more. We knew that with each second the clock was ticking, we were one step closer to the day that we’d lose him.
Dad being the wonderful person that he was, didn’t fight staying out of the driver’s seat, that is of the car at least. Several times a week, he’d venture out alone in his golf cart and shoot across the road to go “the back way” to Fred’s. Oh how we take our independence for granted! How does one who’s been a leader most of his life now have to rely on others to take him to the doctor, to deal with finances, and to quit a side gig in sales that he’d done for thirty plus years?
Ironically enough, we thought we had some time left but a turn of events shattered our world a year later. I remember the call when I was at work. “Christy, it’s mom. Your dad and I came to the hospital last night because he was having a lot of pain. They kept him overnight, and they say it’s pancreatitis. I didn’t want to call and worry you all during the night, but they’re thinking he needs to be transferred to another hospital to have dialysis.”
“Wait, what? Dad doesn’t have any kidney issues. Why does he need dialysis?,” I exclaimed. “I don’t know. They’re saying he’s just very sick right now,” mom said. At that time, my sister rounded the corner at work and her look of fear met mine as we both left in a rush to see him before he was transferred.
Once he was moved to a larger hospital, he was placed on a ventilator and they began hemodialysis. There were dozens of tubes entering and exiting his body. The beeps of the monitors left us on edge with every alarm. The days turned to nights and nights to weeks before we saw a turn for the better.
We were overjoyed when he improved enough to move to a regular room, one which we could have unlimited visiting hours and sleep in the chair beside his bed at night. He was fighting with every ounce of strength in his being because that’s dad. Full of grit and perseverance. He never once complained.
One afternoon when I was with him, he had an episode where he was struggling to breath again. I saw the fear in his eyes, and the team rushed in to stabilize him. Luckily, it passed but I remember asking him, “Dad, if something like that happens again, do you want them to put you back on the ventilator if they need to? Are you okay with them shocking your heart if you need it?.” After nearly three weeks in the hospital, no one was able to ask him this point blank since he had been on a vent. We needed to know his wishes, for he had been poked and prodded a thousand times. Was it too much for him? Dad looked at me like I was crazy and said, “Of course! I want them to do everything.” He was determined he would be leaving the hospital and would recover. It wasn’t even an option to him.
Unfortunately, another breathing episode happened again the next day. It put him back in ICU and fighting for his life once again. He was nearly too weak to speak, and the odds were not in his favor. A helicopter transported his fragile body to an even larger hospital in Louisville. He was placed on the ventilator immediately and sedated. The last time we heard him speak or respond to us was before his flight.
When we arrived in Louisville, we saw teams of doctors and specialists come in and out of his room. The prognosis wasn’t good. He should’ve been sent there weeks ago. We tried and tried to get his doctors at the second hospital to transfer him since his condition was more severe than they realized, but to no avail. Now, it was too late.
The doctors at Louisville sympathetically told us that they’d try and do what they could for a week, but it would be nothing short of a miracle for him to pull through it. Our days became consumed with numbers. Numbers on monitors. Heart rates that were high, blood pressures that were low, temps that were spiking, urine output, and so much more.
While he was there, the marathon for the Kentucky Derby took place, as well as Thunder Over Louisville. My sister and I had never seen the famous fireworks show that lit up the sky with so much beauty and color. It was poetic in the way that we watched it “with dad” from his penthouse view in his hospital room. We described it to him, and told him we’d bring him back next year when he felt better to see it for himself. For a brief moment in time, we felt peace.
On day six at Louisville, his doctors called us into a conference room. They had a palliative care nurse there. I immediately knew what that meant, and thought I could throw up. For she was like the angel of death, and I knew it meant that the time had come. They gently told us it was time to make a decision. If we continue doing what we’re doing, there’s a very slim chance he’ll survive. If he does make it against the odds, he will spend months or year(s) in a rehabilitation facility out of town on a ventilator with no real quality of life. It was time to make the hard choice and do what was best for him out of our love for him. The machines were the only thing keeping him with us, and ethically they felt it was time to let him go.
My mom was so strong in that moment, as she had been for the past month of his hospitalization. Her eyes were watery and her voice shaking, but she held it together to be strong for her kids. We were falling apart, and her strength was a comfort. We made the calls to my sisters and brother and made the excruciating decision to let dad go and to stop his suffering the next day.
Later that morning, mom and I heard beautiful a capella voices enveloping the entire ICU. A lovely choir full of elderly African-American men and women made their rounds through the ICU singing classic hymns to those who were sick and broken, and families who were exhausted and mourning. Their angelic chorus entered dad’s room. They surrounded his bed and held our hands as our sorrow came streaming from our eyes. It was as if God sent his angels to us when we were in our darkest hour.
That night, as I was saying goodbye, it was my final moments alone with dad. I asked him to send me signs often to let me know he’s still close. I told him how much I loved him and how sorry I was that he had to go through all of this. On leaving, I ran in to one of his consulting physicians on the elevator. He asked me about dad, and I broke down. The sweet doctor gave me a warm hug and expressed his condolences. Dad’s nurse, a kind and attentive gentleman, left us a beautiful card when his shift ended that night letting us know how sorry he was. It was obvious that his healthcare providers were grieving with us.
The next day was one we dreaded unlike any other. Mom and I woke up in the hotel and got ready to make our last trip to the hospital, the last time we’d see dad alive. Oh how I wish I could’ve turned back the clock! I wasn’t ready. None of us were. The palliative nurse was there, along with dad’s doctors, and they gave us the rundown of what would happen that day. We left the room for the team to remove the tubes.
When we saw dad again, all of the foreign extensions and lines that protruded from his body were gone, and he looked more like himself again. They came in periodically to give him medication for pain, to slow his respirations and keep him comfortable. We hovered over his bed for hours until nightfall, holding his hands, telling him how much we loved him, and reminiscing on good times. There were points that day that the room felt so heavy that I felt as if the air was being squeezed from my lungs and that my legs would fail me, collapsing under the enormous pressure of the emotions at play in that room. In my mind, that feeling indicated the presence of angels and loved ones coming to welcome dad to land of perfection and love, without any pain or suffering.
His breaths became longer and more infrequent. We let him know it was okay to let go, and that his parents and God were waiting for him. That we’d miss him and would see him again. And then, that one final long breath, more of a sigh really, and no more. It was finished. I can’t imagine if we couldn’t have been there with him, like so many families with a loved one with Coronavirus have experienced. How lonely, tragic, and heartbreaking it would be to die alone with only a nurse or doctor at your side.
It was a long, heart-wrenching day, and we were emotionally and physically exhausted. Not having had a real meal all day, mom and I left the hospital that evening to attempt to get food before going back to the hotel. We stopped at Panera Bread to go in and grab food. As we got out of my car, I locked it like I always do with my remote key. As we approached the door of the restaurant, all of sudden there were alarms blaring and lights flashing in the parking lot. We turned not knowing what we were about to see; and to our surprise, my car was going crazy. The horn was blaring and the lights flashing, and nothing had touched my key. This was an anomaly and not something that had happened before. It took me several pushes of buttons to make it stop. It finally did, and as I walked back towards the restaurant, once again my alarms went wild. I was holding the key in my hand, and again zero explanation for it. I looked at mom, and she looked at me. We both smiled. Without a doubt, we knew it was dad saying goodbye. That gave us comfort. True to his promise, he still gives me signs often and sometimes I see him in my dreams. He never speaks but just flashes a big bright smile my way, and I know he’s okay and is watching over us.
Anniversaries of deaths and holidays are always tough. This brought me tears today but also serves as a reminder that in a time where our elder and fragile populations are at risk of contracting a highly contagious and deadly virus, there is nothing I wouldn’t do to have more time with those I love. Let’s make sure we have their best interests at hearts over our own temporary discomfort. For this too shall pass.
And that’s a wrap. For more blog posts, be sure to drop your email to sign up for the latest updates. Thanks so much for stopping in and until next time. xo, Christy