Dying Without Dignity

How the process of dying of terminal illness is impacted by the Covid-19 Pandemic

February 6, 2021

When someone dies, quite often their obituary is a sugarcoated version of their life. The individual is painted in their best light and all the ugliness is left out, because for the average individual, this lone article in the local newspaper is how they will be remembered forever. When I sat down to write my father’s obituary months before he died, there was no sugar coating anything. Joseph “Joe” Collins was a truly remarkable individual. He married his sweetheart from when he was 8 years old and they were married until she died 59 and ¾ years later. His heart was broken from losing her, but he smiled through the pain for his family. Dad raised 2 children, Carolyn, and Calvin (who also goes by Joe outside of the family), then adopted me, his granddaughter and raised me as his own, essentially starting over at 46. Dad always wanted to help everyone around him. He had a megawatt smile that could light up a stadium and could make a friend for life in line at the grocery store.

After my mother’s funeral, someone asked me if my dad was drunk. This struck me as very strange because he didn’t drink at all. He had in the past, absolutely, but in 1984 he stopped going to dances at the local Moose Club and quit drinking. He told me that raising me was more important and entertaining than going out to party with his friends. In the months that followed I started seeing more signs that were a little off, but I couldn’t quite put my finger on it. He would forget little things, then he couldn’t remember how to get to his doctor’s office. He only ate the same couple of things over and over. Every morning he would make a can of 6 Grands buttermilk biscuits, but only eat 2 and a bowl of brown sugar oatmeal. The other 4 biscuits he would throw out in the yard for the critters. Lunch was usually a can of beans. Dinner would often be whatever I brought over for him or something I would cook for the two of us. Every week he would drive to my office and meet me for lunch, but he never wanted to drive once he got to my office. Cookout was his choice nearly every week because he wanted a Banana Pudding milkshake. Most Friday nights we had a “Daddy Daughter Date” where I would cook for him or take him out to eat, sometimes with friends. Family and friends circled the wagons too and invited him over for dinner or would ask him to tag along when they were running errands.  My aunt and uncle would tell me little quirks that they were seeing too. The moment that made me realize we had a real problem to deal with was arriving for one of our Friday night dinners and finding the oven on. It had been on all day and entire stove was too hot to touch; even the knobs were hot!

Over the next year I took him to see so many doctors to try to make sure he was getting the best care possible and the most helpful medications to manage his symptoms. He was dealing with sleep apnea, strokes, diabetes, congestive heart failure and worst of all, Alzheimer’s disease. I was going through a divorce, so I moved in with my dad. It was my turn to take care of him… or so I kept telling myself. We needed each other! I spent a lot of time with my dad over the next few years! I spent an hour each week sorting his medications. I learned to cook so that we could have healthy options for meals. We played cards after dinner to help him with cognition. Uno games were hilarious with the trash talking! We laughed so hard together and sometimes we cried too. We missed mom. I missed my old life. I mainly missed my “Old Dad.”

At first, he needed a little help. I hired an agency to send someone to hang out with Dad a few days a week for company. After a few months I did the calculations and realized that I needed a cheaper option because his savings wouldn’t last too long at that rate. I started touring nursing homes to get information because I knew that it was likely he would need one someday. A family friend, an aunt and a friend of a friend stepped in to help. They were more cost effective than the agency and could help his funds last 40% longer. Dad wanted to be in his own home where he could sleep in his own bed. He didn’t want to be in a nursing home like his parents, who also both suffered from Alzheimer’s. He wanted to keep his dignity! He also never accepted that he had Alzheimer’s.

Together his care team and I did anything we could think of to help him. We used word searches to occupy his mind. We used dry erase boards and chalkboards to help him keep track of details. Who is taking care of him today? When is dinner? Where is Crystal? We installed grab bars and bed rails. My uncles built a ramp when navigating the two steps into the house became too difficult. Calvin made the three-hour journey to visit more often than ever and called several times a week to check on how things were with Dad. A couple of times per month I had to explain that Mom and Carolyn had died. Dad and I had a lot of conversations about what he wanted in the time he had left. The only thing he could ever tell me that he wanted was for me to be happy, so I adopted a cat and named her Happy. When my heart healed enough and I had figured out who I was after my divorce, I began dating again. Dad helped me find the humor in the epic failures. For him it was like watching a dating show. I only brought one person to meet my dad. Before my now husband and I started dating I made sure that he knew that no matter what else happened, Dad would always be my priority until his last breath. Will loved my dad and never once got upset when Dad asked where my ex-husband was. He even asked Dad for permission to marry me, even though Dad didn’t remember it several minutes later. 

In October of 2018 I had done the calculations and realized that even with Dad going to an adult daycare program instead of having in home care for the last several months, the funds were almost depleted, and I was running out of options. I applied for Medicaid on his behalf. The goal was to receive assistance in paying for his daycare and some respite care so that I could continue with school. In November 2018, Dad had a stroke at home. One of his caretakers was also at the house when it happened so that I could attend school online in the evening and I heard her scream for help. I flew from my room to the bathroom where they were. Dad was not able to speak and had fallen in a way that his caretaker couldn’t move to help him. I lifted Dad and helped her get him to the bed. She started taking vitals as I dialed 911. In just a few moments the rescue squad and firemen were there. I was so scared that Dad wouldn’t make it to the hospital that I called Calvin and told him to say whatever he needed to say because this might be our last chance. I was headed on a business trip, so Calvin came to take care of Dad’s needs while he was in the hospital. Together we decided that Dad needed to go to stroke rehabilitation before he could come home. While I was 1200 miles away, Calvin helped Dad with transferring from the hospital to a nursing home that offered stroke rehabilitation. As soon as my return plane landed, I was on my way to see Dad.

I never intended that he would stay there, but after two weeks of physical therapy they determined that his body had recovered all that he was able to. I was told in a Patient Care meeting, where the physical therapist, dietary, nursing staff and social worker would gather to update family on the patient’s status, that he would be discharged in a few days. I had a panic attack! I couldn’t do it anymore. I could not guaranty that I could keep him safe. I couldn’t afford full time care! My body couldn’t handle lifting him if he fell and I wasn’t trained in proper lifting and medical care. I couldn’t quit my job and take care of him full time! I was his daughter and I needed to do what was best for him. As much as I hated to admit it, me caring for him was no longer the safest option for him.

The facility that he was in for rehab had a skilled nursing unit that specialized in Alzheimer’s care and they took Medicaid. Dad was moved from the rehab unit he was on to the Skilled Nursing unit and the staff was able to ensure that he was in a room with the same floor plan and on the same side of the room to cause as little disruption as possible. His location was not far from my office and I visited him 5-6 days a week. I was with him as much as possible. On days I had class, I visited during lunch. Local relatives stopped by frequently to visit. Dad’s lifelong best friend would come to visit monthly even though he moved away years ago. Calvin came as often as he could. During that first year Dad lost his older sister and younger brother to different forms of dementia, but he never understood even though we told him. I brought Dad home twice during the first year for visits, but those didn’t go well. He didn’t understand why he couldn’t stay. It took months for me to admit to myself that he wouldn’t ever be able to come home.

I planned my wedding for Mom’s birthday in September 2019. I told Dad about every detail as it was happening to give him something to look forward to. I arranged for the agency that originally helped care for him to transport him to the wedding. Before the ceremony, Dad was able to see me in my dress and have a private moment. He sat in the front row next to his sister and smiled that megawatt smile. My stepson walked me down the aisle to my dad, who have me the biggest hug. He smiled for the entire 4 hours (and managed to remember the wedding for a week)! He recognized the farm where we had the wedding, having helped build the barn with a previous owner. He ate three cupcakes and 2 slices of cake because he couldn’t choose what he wanted so we gave him one of each and a bonus once he decided he preferred the chocolate. He looked so dapper in his bowtie. The photographer got a candid photo of the two of us that I will cherish for as long as I live! The next week as I was on a train to Washington, DC for a day trip I got a terrible call. Dad was in the middle of “an episode” and could not be consoled. I spent 45 minutes on the phone with him trying to convince him he was ok. I called every hour to check on him. I couldn’t relax the entire day and as soon as we got back, we drove to the nursing home. I called the nursing home from 10 minutes away because he hadn’t eaten all day, so I was planning to bring him a milkshake. I wanted to see what flavor he would prefer. He had just fallen asleep and the nurse suggested that we let him sleep. Will turned around and drove us home, but I felt incredible guilt for not being able to comfort my dad. A few weeks later I contacted our local hospice agency and made the decision to start with their services. This would mean reducing his medicines to only what he needed to be comfortable. His Alzheimer’s medicines were discontinued. Only medicines for his heart and pain were continued. He would no longer be poked for blood sugar readings every day.

January 9^th, 2020 Will and I went to visit Dad around his dinner time. We visited with Dad for a while before dinner and then while he was in the dining room, we removed his Christmas decorations and carefully hung a red ribbon around his side of the room and placed Valentine’s Day decorations where he would see them. As Will hung that last section of ribbon, I walked to the dining room. Dad’s table mate was wheeling towards me as fast as her arms could go! Dad had slouched over at the table and she was concerned so she was coming to get me. She said the nurses weren’t getting there fast enough. I ran down the hall and into the dining room. I silently prayed he was ok. He wasn’t! He had a stroke right in the middle of the dining room! He was turning blue, so I grabbed his chair, spun him around and ran pushing him to his room. The nurse was running after me. We got him in his bed and gave him oxygen to help him breathe. Hospice came in to check him and they said to call the priest if we were inclined and think about telling him it was OK to go. I listened to his roommate hold the nurse’s hand and say a prayer for his best buddy Joe. Over the next few days everyone said their goodbyes and last rights were said. I was able to work remotely so each day I sat next to his bed with my laptop, trying to focus on work, attending meetings, and trying not to let him see me cry. On day 5 while Dad was napping, I lost my cool! Tears were flowing freely, and I had my head between my knees trying to get myself together. Dad suddenly woke up and acted like nothing ever happened. He looked over, saw me crying and placed his hand on my back and said, “Doll baby why are you crying?” I wiped my tears and said, “because I don’t want to lose you.” He put his hand on my cheek, “I’m not done taking care of you yet.” Just like that, he was back to his loving self.

March 12, 2020, the Covid-19 Pandemic news was making me nervous. My office was preparing to work from home for a couple of weeks. Little did I know that would turn into a year at home!  I decided that to keep Dad safe, I was going to stop visiting him in person. When I arrived at the nursing home, there was a sign on the door saying to check in with the reception desk. The normal procedure was to sign a book and continue to his unit. I had to attest to not having traveled and not being sick. Only one visitor per guest was allowed per day. I talked to the nurse in charge of his care and let her know why she would not be seeing me in person for a while. We talked about the best times of day to call for updates so as not to be an added burden to the already tired staff. I said that I hoped I would see them again in a few weeks. Dad was having lunch, so I sat with him and chatted. I tried my best not to cry as I told him how much I loved him, knowing I wouldn’t be there for a while. I made sure not to touch him. I took a smiley selfie and tried to breathe in the moment and burn it into my memory. I spent the next few hours trying, like everyone else, to buy enough groceries to not leave home for a while and find disinfectants. By the next afternoon I was sick with a high fever and a cough. I prayed that I hadn’t given Dad COVID-19, but 4 days later my fears got worse when I was still sick and now, he was too. Dad tested positive for Respiratory Syncytial Virus. Miraculously he recovered faster than I did! I prayed daily that I would be able to see him one more time.

I scheduled video calls through the social worker on his unit. I didn’t want to burden them, so I scheduled only a weekly visit. As the weeks went on, the sadness in Dad’s eyes grew. Although he lacked any understanding of time, he knew he missed me. He missed all his family! He was sleeping more and eating less. His Alzheimer’s seemed to be speeding up in the decline process that all patients go through. Some weeks he didn’t know my name. One particularly hard visit he said “I’m sorry I don’t know your name, but I know I’m supposed to love you” with tears in his eyes. After each visit I cried and tried to comfort myself with the fact that he didn’t have COVID-19 and was being taken care of. His favorite nurse always made sure to put him on the phone if he was feeling up to saying hello when I called in for an update. He had a phone in his room but no longer had the capacity to understand how to use a phone by himself. I prayed daily that I would be able to see him in person one more time.

In May there was a parade. My family decorated the car and we waved at all the guests as we looped the parking lot twice. Dad saw me and again had that megawatt smile. Around the first part of June, I asked if I could see him through the door because he was having a particularly hard time and frankly so was I. The nurse rolled him to the door, and we talked through a crack in the door so he could hear me better. We both cried so much that our masks were soaking wet. When he was tired, she rolled him back to his unit. I sat in the car and cried for 20 minutes before I could drive home. Dad cried and acted like a child, yelling at the nurse that she was so mean for not letting me in. He refused to eat dinner that night, or anything for the next two days. I decided I couldn’t do that to him again, but I needed to do something!

I had my aha moment! Alexa could help! I talked to the nurse about how the Alexa Echo Show device worked and asked if I could send him one. She said yes, it sounded like a great idea. I ordered one and programmed it at home. I added playlists to soothe him when he was upset and entertain him when he wasn’t upset. I scheduled music to play at certain times every day for him. I set up commands to call me and made sure they worked. From the parking lot of the nursing home, I added it to their Wi-Fi and handed it over to the nurse at the door along with the list of commands and some cookies. Before I was a mile away, Dad was showing up on my phone. I pulled over and talked to him for half an hour. He looked so happy!  This little device was the best $100 that I spent in 2020. For the next few weeks, I was able to check on him whenever I wanted. I got reports about how much happier he was. His food intake was increasing, and he was singing along with the music. There were days that he didn’t know me, but he was happy to have someone to talk to. Eventually someone decided that the device was a possible HIPPA violation since I could control it from the outside, so changes were made. The shutter had to be turned off and I had to call in to have someone open the camera and call me. I wasn’t happy, but I could still see him. On more than one occasion Dad held the Alexa and hugged it thinking it was me that he was hugging. He also would get frustrated that he could see me, but I couldn’t tuck him in.

With communication being less frequent, his appetite again declined, and he went back to sleeping most of the day away.  There were several occasions when a nurse helped him connect to me and then he wasn’t up to talking, so I watched him sleep for an hour, hoping he would wake up and want to talk. I missed our long talks every night after work. Even on a good day, eight minutes was a long conversation anymore.

In September in person visits were allowed. Two family members at a time once a week could visit. I was able to take two aunts, an uncle and Will to see him. Calvin was also able to see him twice. Due to the changing weather, outside visits were stopped. Inside visits were allowed, but with the condition that the person visiting had to have a negative COVID-19 test within 7 days. I arranged my first inside visit for Dad’s birthday. To try to make it special I ordered three dozen cupcakes for his unit to share. I scheduled a Zoom meeting so that anyone who wanted to see him and was available could. The staff was generous and let me stay twice the allowed time because no one else had a scheduled visit after him that day. Dad tried to eat 2 cupcakes, but mostly just ate frosting. I read his cards to him and held up my phone so that people could talk to him and he could see them. A dear friend sent him three boxes of chocolate covered cherries and he ate an entire box. I gave him a pillow with the special picture from the wedding printed on it and told him that any time he missed me, all he had to do was hug the pillow. When Dad was ready, the staff member gathered his things to take him back to his room. I asked since I had been tested negative and hadn’t left the house since the day of the test until the visit, and because it was Dad’s birthday, could I please hug him. They turned their back to us and said ok. This was forbidden and I knew it, but I had been praying for months to be able to hug him one more time. My next visit was scheduled for Christmas eve, just 10 days later.

On Christmas Eve, not long before I was scheduled to visit Dad, I got the call I had been dreading for nine months… the facility had a positive COVID-19 case. I was not allowed to see him, and I was devastated. Will convinced me that I should still follow through with as much of my plan as possible. I had an outfit picked out that was very festive, so I put it on and delivered Dad’s gift. I went home and cried myself to sleep. That night I had a nightmare that Dad would die on December 31^st, the 30^th
anniversary of his first heart attack. I mentioned this to a few people, including my therapist, who I saw on the 28^th. I also talked about how I felt that I had been greedy with my prayers. Praying for seeing him had escalated to praying for hugging him. If it continued, at this rate I would be praying for miracles of recovery from Alzheimer’s soon.

That afternoon I was notified that he was being moved for his safety, away from the positive COVID-19 cases, which were all in his unit. He would be moved immediately. Within 2 hours I was notified that he had fallen and was very upset but did not seem to be injured. He had also punched a staff member in the face. Later that night he fell again, and I started asking a lot of questions. It turned out that he missed his scheduled anxiety medicine. Missing his medicine always made him upset. The day turning to night always caused sundowning, where the patient becomes disoriented. Add into the mix that he was moved to a room with a different floor plan and you have a recipe for disaster. He had to have been terrified! At midnight I found myself emailing the administrator with my concerns.

The next morning, December 29^th, hospice called me and asked if I knew how things with Dad were. It was not unusual for hospice to check in with me on how he was doing. They were unable to visit the facility also. Honestly, I had just woken up, so this call may have gone a little differently had I been more alert. I filled them in on what I knew about the falls and his missed medicine. I vented my frustrations about how all of it was handled. It didn’t occur to me that the person calling me already knew some of what was happening with Dad that morning. She told me that his respiration rate was much higher than usual that morning and that they were giving him morphine to try to bring it down. This was not the first time I had been told that, but it had never been a cause of alarm for anyone. Then they asked me if I would like a compassionate care visit. I had never been offered one of those before, my answer was if you can get me in, I’ll be there in 20 minutes. I quickly got dressed, ate breakfast, and filled Will in on the phone call. He was also leaving home, so he asked me to please find someone to drive me there. Two phone calls later, a friend was on their way to drive me.

The nursing administrator met me at the door when I arrived. I was given hand sanitizer and a pair of gloves to put on. My temperature was taken and then I was walked to Dad’s new room. The nurse practitioner met me at his room and gave me a quick update on his condition. I was given a gown and told “take all the time you need.” That is the moment that it hit me! This was it! This was the end. For the next 10 hours I tried to sooth Dad, who was unable to speak and barely opening his eyes. He thrashed around for several hours and pointed at things I couldn’t see. On three occasions he nearly fell out of bed, but I was able to put myself between him and the floor and hold him up until I could get a staff member to help me reposition him. The nurse on his unit was surprised to see me there. I was the first family member in nine months to be allowed in a patient room that she was aware of. Eventually he started to calm down. Dad looked me straight in the eyes and grabbed my hand and squeezed it. I squeezed back and told him I loved him, and I wasn’t going anywhere. His body relaxed and he closed his eyes for the last time. For ten hours I updated my family on every change that I observed like it was my job. I offered everyone I could think of the opportunity to tell him by phone anything they wanted to say. Some people chose to say goodbye, while others were unable. The last person to talk to Dad was his lifelong best friend, Jake. Jake told Dad that he loved him like a brother and to meet him at the pony barn. They spent decades riding horses together, so this meant something very special. I could hear the tears on the other end of the line. At 8:06 that night, ten hours after I arrived, Dad took his last breath with my hand on his shoulder and the nurse on his other side. Per procedure, three nurses had to try to find a pulse before he could be pronounced approximately fifteen minutes later. By this time Will was on his way to both pick me up and comfort me. All the nurses and nursing aids that I saw offered me their condolences. The nursing administrator never looked up from her desk as I walked by, which just made me furious! I had just lost the most important person in the world and she couldn’t be bothered to look up.

I planned his funeral, only to have to reschedule it for two weeks later. I had caught COVID-19 while at the nursing home and shared it with Will and his son. I was so sick for a week that all I could do was lay in bed and think. Thoughts of anger swept through my mind, but I had no one direction to place them. I could be mad at the nursing home (and I am!) for how they handled the outbreak and moving Dad, the government for how they handled the pandemic, or even the bat that theoretically started all this chaos. Finally, I decided to again pray. I prayed for peace for my heart and peace for my family. I prayed for healing for everyone who was sick and those who were dying from COVID-19 or anything else.
Five weeks after losing my father, my hero, and my best friend, I had the strength to go through his belongings from the nursing home. I found the new socks and shirts that staff had requested two months before he died had never been opened. He could have been comforted by new more comfortable clothes that fit him after losing so much weight. I found his Christmas gift; a new fuzzy warm blanket was still wrapped. No one ever gave it to him. He had the strength and the mental capacity to open his gift but was never given the opportunity to have a few moments of enjoyment. You see he was forgotten in all the chaos that is the pandemic. He was left alone to wither away, trapped in his own body by Alzheimer’s. Like so many others he was denied the rights to comfort and companionship. He was denied the dignity to die on his terms, surrounded by those he loves in familiar surroundings.