My Dad's Last 36 HoursA Personal Journal Entry
Warning: This blog post contains sensitive and potentially upsetting material. For those of you wanting or needing to avoid potential emotional triggers, I suggest you skip this post. For those of you interested in reading my (and my Dad’s) journey, please do so.
Dad passed away the 16th of February 2019 after a struggle with congestive heart failure, pulmonary fibrosis, diabetes, stage 3A kidney failure and Restless Leg Syndrome (RLS). Far from a serene experience, I was with him during his last 36 hours.
During my 20+ years as a financial advisor I’ve been heavily involved with widows and widowers, founding a widowed-to-widowed grief support group, organizing conferences, providing financial education, assisting my own widowed clients, and most recently, starting this financial blog. Journaling is brought up repeatedly as a tool that helps grieving individuals process and cope with the loss of a loved one. Writing about one’s experience is cathartic.
Today’s post is not on a financial topic and it’s not based on my experience assisting widowed clients through their New Normal. Today I’m writing about my experience with Dad’s struggle in the last days of his life. Ironically, the existence and benefit of my Widowed Community website, is part of this story.
Dad’s life ended just two months past his 79th birthday. His first heart attack occurred in his late 40’s. My mom has dealt with Dad’s health challenges for over 30 years. Born in 1939 my Dad went by his nickname, Buddy. As a member of the Silent Generation, let me say that Dad was not so silent! With German heritage flowing through his veins (or so we were told all our lives; my own DNA test results show I am over 60% British with hardly any German in me…someone, somewhere was misinformed and has some explaining to do! But I digress), he was opinionated and hard-headed at times. As a teenager in the 1950’s, Dad told us countless times that he grew up on cheeseburgers, french fries and chocolate milkshakes, and that’s no joke. When I was growing up, Dad’s limited palate heavily influenced our meals at home, consisting mainly of meat and potatoes in one form or another. Fish? Forget it! Spaghetti? No way…that’s Italian! But Mom loves spaghetti, Dad! So what! Dad’s diet of cheeseburgers, cheeseburger subs (yes, that’s a thing), french fries and other Pennsylvania Dutch food didn’t bode well for his heart nor his blood sugar level. Heart disease and diabetes were basically inevitable.
After his first heart attack, he tried cholesterol-reducing medication, but his body was very sensitive to statins and many other medications. Over time he stopped taking the cholesterol medication, letting his cholesterol grow to high levels. Years ago, in one of his hospital stays, Dad went into anaphylactic shock after receiving morphine; oh, he’s allergic to morphine too, great, add that to the list. The number of medications on the black list seemed to be larger than the ones he could tolerate. This is key to the suffering he endured the last days of his life.
Dad’s teenage and young adult years were spent racing cars around the streets of Central Pennsylvania. He wasn’t known for backing down against anyone attempting to bully him at school or work. Standing 5’ 10” and repairing cars and machines all his life, he maintained a strong body and a mind able to troubleshoot all sorts of mechanical issues.
He loved model trains, receiving his first Lionel train set at the age of 11. Muscle cars and Harley Davidson motorcycles were favorite pastimes as well. To fund these hobbies, he worked, all the time, as a mechanic in the original Hershey chocolate factory. My grandpa (Dad’s dad) worked in and retired from the chocolate factory, Dad worked in and retired from the chocolate factory, and I worked in and…joined the US Air Force to break the cycle!
His love of model trains along with his painting skills morphed into him being a highly sought after custom painter of model trains. He would spray paint model train engines and railroad cars for people all over the world. Mom was and still is the decal expert, designing and printing decals of hundreds of different rail lines from around the globe. Dad spent many hours in the basement with the air compressor running, spraying this and that model train, often without a mask or other protection. He had a rudimentary paint booth, built by hand, with modest ventilation, but it wasn’t enough. The years of breathing in paint mist most likely caused his lungs to slowly harden, delivering less and less oxygen to his bloodstream. During his last couple of years he would get out of breath climbing the stairs from the basement to the main floor of the house and eventually while even taking a bath. He took baths, by the way; never took a shower since my time on this Earth. His lung condition, diagnosed as pulmonary fibrosis two years ago, did not help his slowly failing heart.
As if this wasn’t enough, Dad also suffered from Restless Leg Syndrome (RLS) during his last decade or two. It may have been nerve damage caused by diabetes or something totally different (constricted blood vessels?), but the RLS created a living hell for Dad. I never saw it first hand, but every call home was a fresh reminder of how Dad suffered that week with his RLS. He described it not as painful, but as an agitation, like spiders crawling up his legs or even under his skin. To remedy the RLS he would take medications and often get up in the middle of the night to walk around the house or even go for a drive. The worst bouts of RLS had Dad lying on the living room floor, rolling back and forth, sometimes in tears, trying to get relief from the agitation in his legs. The RLS usually happened at night when the body and mind were trying to rest. His medicine allergies affected the efficacy of certain prescriptions and he even was convinced that specific lots of the same medication had differing results. What a crazy syndrome!
In early January of this year (2019), Dad was feeling more out of breath than usual and “just didn’t feel right” so Mom drove him to the ER (he wouldn’t allow her or anyone to call 9-1-1). He was admitted as an outpatient for observation. Two days later he was admitted as an inpatient for additional tests and more observation. Tests revealed he had a slight heart attack but was stable and released on the fourth day with new medications. Based on his initial outpatient status and his rapid release from the hospital, I chose not to make the trip from Arizona to Pennsylvania to see him.
Home from the hospital, Dad continued with his normal activities, walking down the steps to the basement to paint trains and later in the day watching television from the comfort of his recliner. Two weeks after his hospital release Dad had a follow-up doctor appointment. He was having a hard time breathing while getting ready for the trip. Mom wanted to call 9-1-1 but he wouldn’t have it. “Just drive me to the ER”, he said. Tammy, my sister, was on her way to Mom and Dad’s house to drive them to his appointment but ended up driving them to the ER. Dad was admitted as an inpatient and more tests were run. My sister’s text to me indicated that Dad’s health seemed very worrisome now. I flew to PA the next day (Friday). At the hospital, Tammy and I took turns spending the night with Dad. Tests and consultations with cardiologists, internists and other staff showed that Dad had another “incident”, probably a “slight” heart attack. He hated hospitals and wanted out of there asap. His doctors said he could most likely go home Sunday once they stabilize him. They embarked on testing various medications, watching the results, and listening to Dad tell them that they promised he could go home. Then they revised his release to Monday and then Tuesday. Every day of his seven-day stay was a promise from the doctors that when stabilized he could go home the next day. He was also dealing with his RLS at night. We would often fill a small tub of warm water to soak his feet and run warm water over his lower legs. At times he would roll his shoulders complaining that his RLS is now affecting more than his legs (we found out later that this discomfort with his shoulders was most likely a sign of another syndrome, Restlessness, but we didn’t know it at the time). Dad had some slight hallucinations at night but nothing we thought significant. He was on two, sometimes three liters of oxygen during his stay and his breathing was shallow and rapid at night. Dad’s goal was to get out of that hospital, so the nurses scheduled him Tuesday, his 6th day in the hospital, for physical therapy and a heart failure consultation. The goal of physical therapy was to practice proper breathing (no mouth breathing, the patient must breath through the nose to allow oxygen from the machine to get into the lungs) and determine the appropriate level of oxygen. In physical therapy Dad walked around the room and climbed three steps a couple of times with oxygen tank in tow. The pulmonary therapist prescribed two liters of oxygen while sitting or at rest and four liters while walking or active. The plan during hospital release (Wednesday) was to get him rehabilitated at home, stronger, off the oxygen and back to his favorite pastime. I was on my return flight to Arizona the day Dad was getting shuttled home from the hospital.
During his first physical therapy session at home, the therapist was confident Dad would be walking up and down the staircase in no time. But after a few days of physical therapy exercises on his own, it was clear his recovery wasn’t happening. The family, and Dad, realized that his best days were behind him. Palliative care was contacted with the goal of keeping him out of the hospital he despised so much. Oxygen was turned up a little higher due to breathing difficulties while walking to the bathroom just 20 feet away on the same floor. Within two days of palliative care, the nurse was wondering if Dad was a candidate for hospice care. A hospice nurse was called in and she and the palliative care nurse consulted with the family. Dad’s condition was worsening, and quickly; oxygen was turned up further and he decided to sleep in his recliner at night so he didn’t have to walk 30 feet to the bedroom. During Dad’s last Tuesday I called him in the morning to check in. The flow of oxygen into his nose created a good amount of noise and he was slurring his words, making it difficult to understand him. With hospice replacing palliative care and Dad wanting to sleep in his recliner, the hospice nurse ordered him a bed for the living room. Dad knew his condition was bad and repeated his favorite phrase “well, it is what it is”. His conversations with Mom and my two sisters, Tammy and Ginger, turned to finances for Mom, what to do with his stuff including his truck and model trains and who should get what.
Wednesday morning (two weeks after Dad’s most recent hospital release and the day before Valentine’s Day) Tammy called me during my commute to the office with an update. Dad struggled with his RLS most of the night, his bed was in place, but he tried to sleep in his recliner and oxygen was turned up to about 8 (the max was 10 on this machine). Hospice modified his medications to get him to relax and sleep more, but they weren’t working. I knew it was time to go see Dad, so I scheduled a flight for early Thursday morning, picked up flowers on the way home from the office Wednesday evening and explained to my wife my plans to fly back to PA.
Tammy texted me during my flight with updates on Dad’s condition. One text read, “He was resting earlier but is just so cute!”. I’m thinking, Cute? What does that mean? Another text read, “I think he’s holding on until he sees you”. Arriving in Harrisburg, PA, I rented a car and started the 40-minute drive home. Tammy called during my drive saying that “I might need to prepare myself for when I see Dad…he’s different from the way you’ve known him”. Cute and now I need to prepare myself because he’s different! What the hell!
Walking up the stairs to the living room, Mom gave me a hug and the scene slowly unfolds. Dad is sitting on the edge of his recliner, hunched over, elbows on knees. Tammy is sitting on the bed in front of Dad, in a watchful position, just within reach of him. Ginger is sitting on the floor to his side, in tears. As I continue to absorb more, I see Dad slowly reaching down near the floor with his right hand, saying “I need that part”. I look around the floor and don’t see anything. After reaching several times for “the part” Ginger makes a motion with her right hand as if she is grabbing an object near the floor, and says, “Is this the part you are looking for, Dad?” He grabs the part from her hand. Both are grabbing at air; nothing’s there! Dad now needs a tool (he was a mechanic by trade) and grabs at a tool only he can see. I’m just staring in amazement…he’s hallucinating and his daughters are going along with his fantasy so as not to challenge his reality. He is intent on repairing whatever machine he thinks needs fixed. He’s not aware I’ve entered the room until one of my sisters declares, “Dad, Jim is here”. “Oh, Jim! Hi, Guy”, Dad responds, “I’m glad you are here”. I give him a hug and sit down on the bed with Tammy to continue taking in what I’m witnessing. Every time he reaches for a part or tool near the floor, we are concerned he will lose his balance and fall forward, out of the recliner, so we guard his upper body with our hands near his shoulders. I ask everyone if his medications are creating this condition and my sisters reply that, yes, it’s probably one or more of the medications (days later we realized that his hallucinations are probably not the result of medications.)
Fifteen minutes later it’s time for one of several medications. The medicine is administered orally and with care. A water cup is offered to him as if he were a one-year old, hands gently guarding the cup to make sure he doesn’t spill his water. Once the pill is swallowed, we wipe his face and chest where the water inevitably spilled out of the cup or ran out of his mouth.
Over a short time, his hallucinations fade away and he’s back with us. A memory of some past event has activated, and he goes into detail about who was involved, what happened or how he handled the situation. We don’t know why specific memories are triggered, but they did. In an animated style, he tells us about some bully in his younger years and how Dad “put a job on him”, clenching his right fist and throwing it forward. He never bullied Dad again. Later Dad walks me through how to start the Wheelhorse garden tractor, sound effects and all. Animated, he says “You gotta pull out the choke, crank the engine, and when the engine turns over you’ll hear a ROOOMMMM! You have to quickly adjust that choke so the engine doesn’t die”. More memories pop up through the evening.
The cycle of hallucinations, storytelling, feeding, monitoring oxygen level and administering medicine, repeats late into the evening. Even though his medications are supposed to help him to rest, they never do. We remain vigilant through the evening and into the night, careful to make sure he doesn’t fall out of this recliner. For some relief on our part, we suggest the bed might be more comfortable. Dad quickly rejects the offer. As we realize the medicine regimen isn’t having the desired effect, we call the on-call hospice nurse and get her input. Halve the dosage time from four hours to two hours, she advises. Normally in this situation, the hospice patient might have morphine administered, but Dad was allergic to morphine, so we had to use less effective alternatives. Looking back on this whole situation, he (and we) would have had a much different experience if he could have tolerated morphine.
Exhausted from my day of travel, Mom and Tammy suggest I get some rest. They will stay with and monitor Dad during the night. In the morning I’ll have some tasks to run. Tammy is already exhausted from spending the last two or three nights with Dad, but she pushes on.
Friday morning arrives and Tammy gives me a summary of what the night was like for everyone involved. Dad’s RLS flared up and more tubs of warm water were needed to soak his feet for a little relief. He didn’t sleep much, maybe 30 minutes here or there. Even if he was able to sleep longer, his medicine schedule required one or more doses delivered orally every two hours.
At 9am I went to pick up a new medication at the local pharmacy and some over-the-counter children’s liquid Tylenol. By the time I got back to the house, Dad had been sleeping for about 90 minutes, which was good to hear! It gave his exhausted caretakers a much-needed break. He woke up around 11am. We didn’t know it at the time, but he had about 18 hours left.
During his last 18 hours, Dad was active in some form or fashion the entire time. He had a variety of visitors during the day and it was a challenge for everyone of them to see Dad in his condition. He wasn’t the strong, hard-working, opinionated man we all knew. At one point during the day, one of his grandsons, Brett, visited. Brett is much taller than I am, sounds different and has different mannerisms, but Dad thought Brett was me. Then I sat across from him and he asked me if I was ever in the military. I said “Yes I was”. He said, “Oh, my son was in the Air Force”. “Yes, I was too”, I replied as I looked at other attending family members with a raised eyebrow. Then he asked what I did in the military. I told him I used to fly F-16s and A-10s. And with some excitement he says, “Oh, my son did too…did you know him?” (By far the hardest sentence I’ve ever had to type).
At this point Dad’s oxygen is set to 10; the maximum for his machine. His blood oxygen is fluctuating between the mid-70s and low 90s. At times Dad is mouth-breathing and we coach him to inhale through his nose to allow the oxygen to get into his lungs.
Friday afternoon blends into the evening and we attempt another move to the bed to get Dad comfortable. We carefully move him to the bed and make several attempts to elevate his upper body while not allowing his whole body to slip down to the bottom of the bed. Sliding a large towel under his lower back area, one person grabs the towel from each side and, one, two, three, lift and slide his body up the elevated head section. It’s a challenge moving a 205-pound person around! Lying in bed never gives Dad the comfort he needs. He wants to sit up, so we sit him on the edge of the bed, again watching carefully so his upper body doesn’t lean too far forward resulting in a fall out of bed.
Closer to midnight we move Dad back to his recliner, just three feet away from the bed. The move requires two people to lift and secure him by his arms, slowly rotate him, then gently lower his 205-pound frame into the recliner without him or us falling. His legs are starting to bother him again. He’s lifting them one at a time, wrenching around with a facial expression that shows total discomfort. Warm water isn’t helping, medicines aren’t helping, so he says he wants to lay on the floor. We realize that once we lay him on the floor, we may not be able to lift him back into his recliner. But if the floor gives him some relief, let’s do it. We slowly lower him to the carpeted floor, laying him on his back, with the bed on his right and the recliner on his left. All this is done while making sure his oxygen tube is intact and doesn’t get pinched or damaged. Mom, Tammy and I are trying to monitor his oxygen level while helping him turn on his right or left side for comfort. He continues to kick his legs, periodically getting one stuck under the bed.
We are at our wits end. Nothing we do helps. Dad is writhing, twisting, kicking and breathing through his mouth. Oxygen level is fluctuating greatly, at one point I read 57. To increase his oxygen level, Tammy suggests we piggyback the portable oxygen tank with his in-home machine. So, we roll out the portable tank, wrap a second set of oxygen hoses around his ears and into his nose, and crank the portable tank up to its maximum of 5 liters per minute. Now Dad’s theoretically getting 15 liters per minute (we later learn that most of that oxygen is going in his nose and bouncing right back out as a person’s nose and airway aren’t designed to handle such a large flow of oxygen). We want to get him back in the recliner but can’t.
During my January visit, my nephew, Ryan, who previously worked as an EMT and now as a Physician’s Assistant, mentioned that they would often get called to people’s homes to help lift a person back into bed or their chair, and many times at no charge. I suggest we call 9-1-1 to see if such is the case with our local EMTs. Thirty minutes later we see the red flashing lights bounce off the rolling farm fields and the ambulance slowly approach our nondescript driveway. I catch the driver’s attention with a spotlight and direct him, with the beam of light, to our driveway directly off the main highway.
Inside, the two strong EMTs lift Dad off the floor and move him into his recliner. While they are assisting, we, as a family, decide that we are overwhelmed. It’s beyond our capabilities to help Dad. So we call the on-call hospice nurse to fill her in on the situation. Dad is still twisting around in his recliner and the EMTs ask us what we plan to do here. With the hospice nurse on speaker phone and the EMTs now involved in the conversation, a plan comes together. Our hospice nurse suggests we get Dad to an inpatient hospice. Hershey Medical Center (HMC) has one, she says, and we could admit him through the ER. Have the EMTs drive Dad to HMC ER, she recommends, and she will coordinate his admittance into the hospice unit. There they can monitor him closer, have professional staff at his bedside and administer IV versions of medicine to help him relax.
Around 4am the EMTs load Dad into a gurney, one that allows them to take him down the steep narrow steps to the basement level where the ambulance vehicle is parked. They thought about taking him out the back door of the upper floor and then through the yard, but the yard is full of snow and very slippery. Loading Dad into the ambulance, Tammy decides to ride with him to HMC. I will take Mom in my rental car and meet everyone at HMC.
By the time we park and walk into HMC ER it is roughly 5am. Tammy texts us that the ER doctor is checking on Dad and they are hooking up IVs. We are told at the ER desk to wait here and that a nurse will come out to get us and walk us back to Dad. Fifteen minutes go by, then twenty. Tammy sends me another text saying that we need to wait a few minutes before coming back to see Dad because the medical team is trying to calm him down. A few minutes later, a nurse meets us and takes us back to Dad.
As we make our way down the hallway and around the corner to Dad’s room where he is under watch by the ER team, we see Dad calmly laying on the ER table. Wow, I think, those IV drugs must work fast. The medical staff, numbering 5 or 6, are standing around the table in quiet discussion. I don’t see any IVs connected to Dad and there are no beeps or tones from medical equipment. As we walk into the room, the ER doctor turns to us and says, “We think he might be dead”. I stare quietly at the ER doctor thinking…you’re a doctor and you don’t know if my Dad is dead? My mind is trying to process the shift from, they’ve sedated him and he’s resting peacefully, to he’s dead. I see Dad exhale through his pursed lips and the attending nurse explains that at the time someone passes away, they might appear to take several final breaths. I ask why he’s not connected to a heart monitor. The technician connects Dad to the heart monitor and we see a perfect 62 beats per minute. “His pacemaker is active”, the doctor explains, “but we need to do an MRI of his heart to see if it is still pumping”. The MRI technician brings out the MRI machine, runs the handheld sensor across his chest and points to the screen, “here’s his heart, it’s not beating”. My Dad’s heart had finally given out and he was gone. It was Saturday morning around 5:30am, February 16th.
Dad is moved to an observation room while we send texts and make calls to Ginger and the grandchildren. We spend the next two hours receiving and consoling grieving family members as they view the body of their dad, PaPa, father-in-law, husband. Calls are made by hospital staff to the local funeral home. We are free to go home. Later that day I call my own children, back in Arizona, with the news.
Exhausted, Mom and I drive home and I just stare at the empty recliner and the floor where hours earlier Dad lay struggling with what we thought was Restless Leg Syndrome. A part of his struggle might have been RLS, but we later are told about terminal restlessness. A lot of the symptoms of terminal restlessness fit perfectly with Dad’s behavior those last few days, but it never came up in discussions with our hospice nurse. His situation changed quickly. It was just days from hospital release to palliative care to hospice care. He was allergic to many drugs including morphine and his health was complicated with multiple ailments requiring numerous prescriptions. But I sure wish I had known about terminal restlessness as I walked up those steps to the living room just 36 hours earlier. Dad’s body was shutting down rapidly during his last 36 hours; organs failing, medicines interacting, lack of oxygen, build up of waste and harmful chemicals in the body, all combined with a heart that could no longer take the stresses thrown at it. Dad’s end of life was far from a serene, peaceful experience with gently flickering candles and soft music playing in the background. I wish our experience upon no one.
In the afternoon, I ironically found myself logging onto my own website, WidowedCommunity.org to download the Immediate Checklist for my mom; the very checklist I created and made available to the public just months prior. It was somewhat surreal.
Two days after Dad’s passing, the family held a private viewing and May 6th we held a public Celebration of Life ceremony with over 100 family members and friends attending from around the country.
The trauma of Dad’s last 36 hours was the impetus for a meeting between Tammy, Mom and several people from the hospice organization. The hospice vice president flew in from Dallas and our main hospice nurse was there as well. Some gaps in hospice coverage and planning were discussed as was Dad’s complicated scenario. In the vice president’s 40 years with hospice, she acknowledged this as one of the most complicated medical situations witnessed by her firm. So much so, that this hospice is building a case study and calling it “The Buddy Project” so that other hospice personnel can learn from it and not have a family go through what we went through.
During the past five months this experience affected my desired regularity for blog posts, Weekly Wealth Reminders and designing new checklists. But I needed to write this post for my own journey and I feel it has helped. I expect to get back to a regular schedule of publishing blog posts and other material.
Thank you for your patience and understanding.
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Jim Schwartz is a Scottsdale, AZ fee-only financial planner with an expertise and interest in financial planning and education for widows and widowers. Years of working with and advising widows, widowers, and surviving partners has provided a wealth of experience and knowledge in this complicated financial arena. He is particularly skilled in his ability to guide his clients through difficult decisions while ensuring the stability of their finances.
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