Losing Dad to Prostate Cancer: What I Learned Along the Way
The Beginning: Learning About the Diagnosis
Our parents told us about the diagnosis of prostate cancer after they found out about it in May 2017. My dad was 80 years old at the time. Problems with urination led them to a doctor’s appointment that led to the discovery. Anytime one hears the word “cancer,” there is a level of panic that sets in knowing that “cancer kills.” But having learned that different kinds of cancer are more treatable than others gave us hope. Prostate cancer is one of those cancers that, if caught early enough, is slow-growing and very treatable. Initially, I was worried about Dad, but not scared about his future.
The earlier days of treatment following the diagnosis are foggy in my memory, but my mom kept careful notes throughout the ordeal. Since I thought they had it “under control” (by getting help from the doctor), I didn’t talk to them about it regularly. I remember that Dad was going to have a shot followed by oral medication for at least 6 months and then the doctor would go from there. There was no need, I thought, to be involved with asking too many questions or asking about Dad’s progress because I knew he was being treated. I assumed that the cancer was caught soon enough and believed, based on what my mom had told me initially, that it had not spread.
In July of 2017, our family came to Iowa, where my parents lived, for our annual family gathering for the 4th. Dad seemed to be himself. Over the years, we had seen changes in him as he aged, but nothing significantly out of the ordinary.
The only worrisome issue that we were all aware of was that he wasn’t as steady on his feet as he used to be. For years he had “back pain” that he wouldn’t tell his doctor about and we were aware from conversations with Mom that his pain level had been increasing over the years, too. We began to suspect that he might have a deteriorating hip. My two brothers and I occasionally said to him how much we hoped, wished, wanted him to have it looked at by his doctor, but he would never commit. And he never did.
So that summer, there were times when he almost fell, so those of us around him kept a watchful eye on him and prevented him from carrying things that could make walking steadily even more challenging than it already was. But Dad remained cheerful around the family, laughing and joking and enjoying everyone’s company. He was with us when we took our annual family group photo outside on their wooded acreage with my oldest brother using his selfie stick to get an outstanding one of our whole crew who had made it there. Unbeknownst to us, that would be our last family group photo with Dad.
Continuing Treatment: Time to Learn More
After Dad’s initial treatment, in January 2018, doctors did a liver biopsy and found that there was a cancerous spot there, too. It appeared that more aggressive treatment would be needed. They started him on chemotherapy on Jan. 24th. It was given to him once a week for three weeks. Then he’d get a week off before getting more chemo for another three weeks.
In my mind, it was apparent that the cancer had metastasized. So it was time for me to start doing my own research to find out more about what this meant for his future. How serious was his condition now, I wondered. What are the best treatment options? How long did those with prostate cancer that had spread have to live?
Based on what I found, with a quick search on the Internet, it didn’t look promising. What I read suggested that how long a person in my dad’s situation might live depended on where in the body the cancer had moved. If it had moved into the bones, he might live longer than if it had moved into the liver, but the pain he’d experience would become excruciating. He did have bone scans, too, which showed no cancer there. With it having moved to his liver, the prognosis suggested that he had the least amount of time to live of all the possibilities. I figured that if the information that I found was truly what my dad was experiencing, he might have as much as 18 months to live. That was a sobering statistic. It was also a call for me to become more involved in finding out what the doctors were doing and to keep closer tabs on how dad was doing.
Dad Doesn’t Tolerate Chemo: Next Steps
Dad’s oncologist decided to stop giving him the chemo treatments during the 2nd three-week round because he wasn’t tolerating it at all well. It suppressed his appetite and made him nauseous. He started to get weaker rapidly and it was clear that those treatments could not be continued without serious risk of ending his life. After that, the oncologist recommended a new drug, Zytiga, which was a form of hormone therapy. It was designed to reduce my dad’s testosterone levels since testosterone feeds cancer. But the drug was astronomically expensive. Luckily, my mom got assistance to fill out forms and apply for funding directly from the drug manufacturer. Based on a number of factors, after she had paid a certain amount out of pocket for the drug, they qualified to get the drug paid for 100% by the manufacturer.
Initially, after taking the drug, tests revealed that it was working! His testosterone level was coming down. We were so hopeful this drug would extend his life while allowing his quality of life to improve during whatever time he might have left with us. However, the chemo had really taken a toll on his overall health. Dad’s appetite was still affected. He didn’t feel like eating much. Nothing tasted good. He had to force himself to eat, but he still wasn’t eating enough and he started losing weight. He was also not drinking enough fluids. Doctors became concerned that he was becoming dehydrated. The side effects of dehydration could be many. It became such a concern that they started scheduling weekly hydration appointments for him at the hospital alongside his regular lab work to monitor his well-being and cancer treatment.
Complications Set In As Does a Concern For Mom’s Health
I have two older brothers. Each of us and our families live out of state from our parents. Knowing how my dad was doing depended on how well my mom understood and could communicate what was happening. Sometimes it was clear that my mom didn’t want to talk about my dad and his condition in front of him, even though it was over the phone, so it wasn’t always easy to get a clear picture of how he was doing.
We learned that my dad would occasionally have a fall. He had been using a cane when he left the house, but not inside the house. I told my mom that if he refused to use the cane inside the house that she needed to get his doctors to tell him to use it. As he continued to get weaker, he started using a simple walker. He was not only getting weaker, but his blood sugar levels were fluctuating erratically. The primary reason was due to to the steroids he had to take in conjunction with the Zytiga. Prior to the cancer treatment, his blood sugars were well controlled despite years of diabetes. There were times now when it would fall so low that he wouldn’t “remember” that he needed his cane or walker to walk and Mom would have to jump up and “catch him” and bring the walker to him.
My middle brother and his young adult daughter came to visit my parents in the middle of February. He wanted to get a first-hand understanding of how things were going with my parents as well as get an idea of what plans they had made in the event of my dad’s passing. Up until this time, it was a topic that had never completely been discussed. When my brother broached the subject, it was clear that my dad had been thinking about it and he broke down with a flood of tears flowing. My brother had never seen him cry, so to see him this way was truly difficult. His biggest fear appeared to be financial. He didn’t know if they would have enough money, not only to pay for his treatment but also for Mom to be able to “make it” after he was gone. My parents brought out all of the documentation. After looking it all over, my brother told them that they were in very good shape and he didn’t believe that they had anything to worry about. I’m not sure how reassured my dad was by my brother’s assessment. I know he once asked me if I wanted to “buy this place” (their house and property). And mom told me that he would ask other people they knew, too. But she told him that she had no intention of selling it because she wanted to continue to enjoy what they had created together.
By the time my spring break rolled around at the end of March, I had decided that I needed to take a trip to see my parents so I could not only visit them but get a firsthand look at how they were doing, too. Talking to my mom on the phone often left me concerned about how SHE sounded so tired and without affect in her voice. I had been having conversations with my brothers about the possibility that she may need help taking care of Dad or else her own health could become compromised. Then they would both need specialized care.
By the time I got there, Dad was so weak that my mom had to supervise (assist) him as he used his walker to go to the bathroom or anywhere else he wanted to go. Mom was delivering his meals to him in his recliner in the living room. She would set his plate on his lap. He didn’t even sit up (lean forward) to eat on a TV tray. He did a lot of sleeping when he wasn’t eating or watching a little bit of TV. During the night, he had to make several trips to the bathroom, so Mom was getting up, too, and assisting him to make sure he didn’t fall. SHE was getting less sleep than he was because of her caretaker responsibilities of cooking, doing laundry, shopping and caring for him–day AND night. It was clear that she was exhausted and in danger of becoming run down.
I had gotten recommendations for types of services that we might hire to come in to help them out. My brothers and I had agreed to pay for it, but we still needed to convince my parents to accept it. I talked to Mom first. She was reluctant, but I got her approval IF Dad would agree. I explained to Dad that we didn’t want Mom to get sick or “down in the back” and that this extra help would be as much for her as it would be for him. Surprisingly, he agreed without any questions. So my job, once I returned home after spring break, was to get it set up.
Dad wasn’t very talkative during this visit. But then again, that wasn’t terribly unusual for him with me. Conversation came easier for him with my brothers and with friends of his. That doesn’t mean he didn’t value my visits. I know he did. In fact, when he found out we were leaving soon, he asked me when I would be back again. I told him unless I needed to come sooner, I’d be back for the 4th of July time like usual. But I assured him that I could come back anytime.
Additional Health Problems For Dad
A couple of weeks later, the extra help still wasn’t set up. The first agency didn’t have anyone who could regularly travel to my parents’ location. They were in a rural area. Originally, the agency thought they could provide the service until it came time to find the personnel to schedule. Then, I found another service, but Mom was having a problem deciding what days and times she could have them come into the house because Dad was having so many doctors’ appointments.
My oldest brother decided to go visit our folks on April 10th. While he was there, he and Mom took Dad in for his hydration and labs. Sitting in his wheelchair, something seemed off about Dad. He wasn’t responding when someone talked to him. One of the nurses took his blood sugar level. It had dropped dangerously low. He was admitted into the hospital. They also found that he had a urinary tract infection. He was there for a few days as they treated him. Unfortunately, though, he didn’t want to remain in the hospital, so one night he got out of bed and laid on the floor in protest. The next day, they discharged him and sent him home.
My brother needed to be heading back home but felt that Mom needed our support with the complications that my dad was experiencing. He couldn’t imagine her handling all that had happened while he was there if she were on her own with Dad. So I made arrangements with my school district to take time off from teaching using the Family Medical Leave Act. My brother left on Sunday, April 15th and I arrived on the same Sunday without our paths crossing. I stayed a full week with them.
My brother had purchased a commode while he was there. They had it set up in the living room between Mom and Dad’s recliners and in front of the small table between their chairs. He had also moved an electric-powered lift recliner, that used to belong to my maternal grandmother, from its previous location to Dad’s spot so he could use it to help himself stand up. Dad had grown significantly weaker since my visit just a short time before. Mom asked me to assist getting him from his recliner, onto his walker and lined up to use the commode just a few steps away. Together, we made sure that he didn’t fall and we cooperated in getting him ready to return to his chair. Just that much activity clearly wore him out, exhausting what little energy reserves he had. It was also concerning that Dad seemed uncertain about when he was finished using the commode. Sometimes he would stand up and Mom would tell him to sit back down because she could see that he clearly wasn’t finished. In retrospect, we found out that it was because his bladder wasn’t emptying properly and his UTI had returned.
The next morning, Dad suddenly got up from his chair without attempting to get his walker. He hadn’t indicated to either of us that he needed to relieve himself like he normally did. Mom and I both jumped up. I grabbed his walker and put it in front of him while mom grabbed his left arm and asked where he was going. He was heading toward one of the two guest bedrooms when he said, “I’m going to my room.” She told him that he was going the wrong way and, as Dad was known to do, he lost his patience and said, “Dammit! Get out of my way!” Mom looked at me with a grimace on her face and a look in her eyes that said, “Now what do we do?” Mom said, “But, this is the wrong way!” And I followed up with, “Come this way, Dad.” He did begin to go the right direction but both my mom and I were perplexed about what was really going on. It was out of character and concerning to us.
The next thing we knew, after Dad had made it most of the way across the house toward his own bedroom, he stopped short of going into it and headed for the couch in the family room just outside of his bedroom. He “dove” onto the couch awkwardly. Mom helped raise his legs up onto the couch so that he was lying down. I grabbed a pillow to put under his head. I told Mom that she should check his blood sugar so she did. It was low, but not as critically low as it had been in the past. She brought him some orange juice to drink, but he wasn’t fully accepting it and we weren’t sure if we got enough in him to counter his drop. So Mom called his doctor’s office and told them how he was acting and about his current blood sugar levels.
Mom asked me if I thought that the two of us could get him down a set of stairs from the wooden deck outside and down the 30-foot wooden sidewalk and into her car to take him to the hospital. The look on my face was uncertainty so she told the doctor’s office that she would call 911 for transport. It was at this time that I found out that she believed that he had been released from the hospital during his previous stay before she thought he should have been. That was when he had protested by getting out of bed and lying on the floor. She thought that there was some kind of rule preventing them from keeping him when he did that and that is why they discharged him. I’m not sure if that was the case but he was released to go home following his protest.
This trip to the ER, having been on the heels of just having been released, prompted additional concern on the part of the hospital staff. When they asked Dad some of their routine questions about his birthday, the day of the week and where he was, the only question he answered correctly was his birthday. The ER nurse was alarmed as was the attending physician that my dad’s bladder was beyond full. It was clear that he was not able to urinate properly. This shed some light on why he frequently felt the need to urinate at home and why he never knew when he was really finished.
The doctor decided that they needed to put a catheter in him. Mom and I prepped the doctor and nurse that he might put up a fight. He had had one temporarily one other time that ended up having to be in for so long and was so painful that he had vowed, “Never again.” They had us step out of the room while they took care of installing it. When we returned, they told us that he didn’t put up a struggle and that they had drained one full “tank” (plastic urinal) and 1/4 of another. After the doctor and nurse had left the room to run tests for infection, Dad saw us sitting in chairs against the wall. He attempted to say something that neither my mom nor I could understand. So Mom got up and walked over to his side and said, “My hearing aids didn’t pick that up. What did you say?” (I had suggested that approach because my dad’s speech was not always clear anyway and he often seemed to mumble. Then he’d get mad when Mom didn’t hear or understand him.) His response was a clearly enunciated, “Who. Are. You?” Mom said, “I’m your loving wife.” He nodded like that was an acceptable answer. Mom and I gave each other a look of worry when she finally came back to sit beside me.
When the doctor returned, he reported that Dad clearly had a Urinary Tract Infection. He said that he would need to be admitted again. They also said that they needed to run tests so they could get an effective antibiotic because they were concerned that the last medication didn’t actually get rid of his last UTI. Mom said that she was relieved because she didn’t believe he was ready to come home from his last stay. Mom explained to me that she had been told that he would have to be admitted overnight for three nights under “critical care” to qualify for Medicare to cover physical therapy which his doctors and Mom believed he needed. Due to his increasing weakness, he had become at high risk of falling. So I started having side conversations with various hospital personnel until I was put in contact with the hospital social worker who coordinated patient care.
I set up a meeting with the social worker and my mom so we could discuss care and costs and how to get those costs covered by Medicare. For days, Dad continued to be confused about the basic facts of his existence. He accepted who we told him we were, but he kept naming various hospitals and cities where he used to live as his current location. I began to worry about whether this confusion was temporary or long term. I wondered if it was a symptom of chemo brain and whether his confusion would clear up or not. I was told that it could have been caused by the UTI he was being treated for, but that it could also be a sign of his cancer spreading into his brain. Thankfully, he was kept in the hospital under critical care for three nights, his foggy thinking cleared up and I was able to help Mom secure the next level of care which was getting him into a skilled nursing facility (nursing home) for strengthening and overall care.
Dad had developed a problem with swallowing a while back that also contributed to his struggles with getting enough to eat. So in addition to providing him with the exercises and therapies that would help him gain strength so that he would no longer be at risk of falling and could return home, they also had a state-of-the-art facility with equipment which could assess and teach him techniques that would improve his swallowing. Dad was highly motivated to return home, so he was “a good boy” and he followed directions and did what he needed to do to pass his benchmarks for improvement. Three weeks later he was ready to return home.
The Final Chapter
Dad returned home on May 16, 2018. Since he had had a catheter put in, they had set up a nurse from a service called Circle of Friends to come in weekly to check it and his vital signs to monitor his progress. It was clear that the catheter was there to stay indefinitely. In order for him to be somewhat more comfortable, doctors said that they planned to put in a super pubic port for it. In the meantime, they wanted Dad to continue doing physical therapy at home to maintain the level of strength he had built up while in the skilled care facility. He cooperated with the physical therapist during the home sessions, but he more or less refused to do the independent exercises the therapist left for him to do. So his strength began to decline over time again until the therapist discharged him from therapy because he wasn’t making progress.
Mom continued to take Dad to the hospital for weekly labs and infusions to monitor his blood and hydrate him. His appetite continued to be an issue as did his intake of liquids. His catheter had to be changed every so often and he also had some issues with it becoming blocked. They had to replace the catheter size they had been using with the largest size possible. By June 13, 2018, two days before his 82nd birthday, Dad’s oncologist had determined that the labs showed that the Zytiga was no longer working so it was not worth having him continue to take it. With his appetite so suppressed, his blood sugar fluctuating because of the Prednisone that he had to take with it for it to be the most effective and his continuous weight loss, doctors became more concerned about helping him regain the weight.
With all of the complications that were beginning to happen, especially with his weight loss and catheter difficulties that kept bringing him back into the emergency room, doctors determined that he needed to go back into the Care Center indefinitely. So, he was moved back in on June 28, 2018.
The annual family gathering for the Fourth of July was approaching and it was unclear how these developments were going to affect what we would be able to do as a family. Dad, of course, was really concerned about being able to see the family. He had been looking forward to it and thought he had succeeded in being at home for the holiday. So when he ended up needing to return to the Care Center just before most of the family was to arrive, he was disappointed and worried about getting to see everyone. At the same time, doctors scheduled the installation of the super pubic port for July 3rd.
My husband, son and I came home on July 2. We were there to be with Mom while Dad had the procedure. It was a little scary to have him have this kind of procedure considering how poor his condition was since he had an order of Do Not Resuscitate on file. But, he came through it even though he needed oxygen to recover. My brothers arrived late in the afternoon on July 4th.
It was touch and go about how Dad was feeling, but he said he wanted to come home to be with us on July 5th. We picked him up from the Care Center and he arrived home around 9:15 AM. We spent time hanging out in the living room talking. Dad watched one of his two great-grandsons playing which brought a smile to his face. I was able to capture that smile which turned out to be a prized final picture of Dad with the family. We ordered pizza instead of preparing the food we normally do. Before it could be picked up and brought home, Dad was tiring. He asked to be able to go back to his bedroom and lie down. We put him in his wheelchair from the Care Center and took him back to his bed. He had only been lying down for about 15 minutes before the pizza arrived. He needed to eat something in order to take some of the medications he was still taking. He didn’t want to get up, but Mom insisted. So, we wheeled him back into the living room. He nibbled, at best, at one square of pizza and took his medication. In less than 30 minutes, he was requesting to go back to the Care Center. He was clearly beyond wiped out. So, of course, we took him back. He wasn’t up to another visit home the next day, so each of us went to the Care Center to see him. It was a bittersweet visit to be sure since it was likely going to be the last for many of us.
Dad’s caretakers continued to do their best to care for him. They started him on another new medication on July 13. He continued to have doctor’s appointments, fluids, and labs to monitor his vitals. But then, on July 21 at 2:15 AM he was taken to the ER. He had had a stroke and it was also determined that pneumonia had returned and was in both lungs. On July 24, my oldest brother and his wife and their youngest daughter came to see Dad. His wife and daughter left the next day to return home. On July 28, my oldest brother picked up his middle child, his daughter from the airport and brought her to see Dad. She and her family had recently moved to Colorado and hadn’t been able to come back during the July 4th holiday.
Due to Dad’s stroke, his speech abilities had been severely affected, but he struggled to communicate with his granddaughter. She was a nurse. She leaned down close to Dad and worked hard to try to understand what he was clearly trying very hard to communicate to her. She later told me that the first thing he mouthed and whispered was, “Where is the big guy and little guy?” He was referring to her husband and son. Next, he kept trying to tell her that he had told the nurses there that his granddaughter was a nurse. He used a communication board and kept pointing to the hallway. When she finally landed on what he was trying to say, he excitedly pointed to the communication board, “Yes! Yes! Yes!” Finally, she told me that she told her grandpa that she loved him and that he was her favorite person. That made him cry. She said that the time she was there was the best he had been. He was the most alert. He was clearly motivated to speak to her. While she was with him, she could see his personality shining through. Despite the stroke, he was mentally still very much present. She even saw him do his signature “eye roll with a huffy breath” once. She wished she could have stayed longer, but her husband had to work and there was no one to care for their son. My brother took his daughter back to the airport on July 29 and then left for home himself. Dad was transported back to the Care Center on July 30.
I got in my car on Thursday, August 2, to go be with my mom and dad. I didn’t really know how much time he had left but considering all that had transpired since the holiday, it was clear to me that I wanted to be there. My other brother and his girlfriend were also planning to come that weekend, too, from Georgia. They had tickets for a concert in Cedar Rapids, Iowa for Friday night and then would come down to see our parents on Saturday morning.
As I was en route, I got a call from my mom. She wanted to know how far away I was. I told her which town I had been through and which one was coming up next so she could figure out the timing. But it wasn’t 10 minutes later that she called me back to tell me that she had just gotten a phone call from the Hospice worker telling her that Dad’s “condition had changed” and that she needed to come back to the Care Center as soon as possible. I told her to be calm and drive safely and we agreed that I would go straight to the Care Center upon my arrival. I wanted to hurry, but I focused, kept my eyes alert and prayed that I’d get to the Care Center in time. I was still at least 45 minutes away.
When I got there, Mom was in the room with Dad and there were some nurses there. They explained to me that Dad’s oxygen level had changed and that it was clear that he was entering the last phase of his life: the end. They told us that this was our time to talk to him, love on him and just be with him.
I stepped up to the side of Dad’s bed and looked him in the eye, smiling and I said, “Hi, Daddy. I made it. I’m here.” He just looked at me. So I said, “Do you know who I am?” and he nodded that he did. I said, “I’m going to be here with you and Mom. Don’t worry about anything. I love you. You just rest.” After I said that last bit about resting, as is characteristic of my dad, he rolled his eyes and did a form of his huffy breath, like he had done with my niece, his way of telling me that he wasn’t going to “rest” and get better, as if I didn’t really understand what was going on with him. I just said, “I’m here.” Then I sat down with Mom.
The head of nursing just happened to also be my parents’ next-door neighbor. She explained what they would be doing to keep Dad comfortable. She and my dad had a special connection and I loved how she spoke to him in such a familiar and comforting way. She also showed us how we could dip these special pink-tipped sponges on a stick into a special liquid to put in his mouth periodically to keep him moist and comfortable. A while later, we had a meeting with the hospice social worker who explained to us what to expect during this final phase of life as Dad approached death. We were told about how Dad’s breathing would begin to slow. We might hear what people call the “Death Rattle.” Eventually, he would just stop breathing.
Mom and I sat with Dad while he slept, slipping into unconsciousness. We talked. We told stories. Every so often I would talk to Dad, telling him that we were here with him and that we loved him. My second brother, who wasn’t going to be arriving for a couple of days, called and asked to talk to Dad. So Mom put the cell phone up to Dad’s ear and my brother spoke to Dad for the last time.
At one point, one of the nurses who had taken him to breakfast one recent morning came in to talk with us. She told us about how Dad had been very teary that morning. She said that she asked him if he would like to go have his breakfast out on the patio with her. He agreed. She told him that she would go get the lift while he dried up his tears and she would be back for him. She said that while she was feeding him, he managed to say, “Poor Judy! Poor Judy!” That story really hit me. It told me that even as Dad’s health declined, he still had Mom’s well-being first and foremost on his mind and in his heart.
With this story in mind, I went up to my dad. I put my hand on his bony shoulder and said to him, “Hey Dad. I want you to know that everything is going to be okay. Don’t worry about Mom. The three of us kids will take very good care of her. So please don’t worry about her. Okay? We love you so much!”
Mom and I were with dad the rest of Thursday, talking and watching Dad breathe and calling for help when needed. We spent the night. They brought in an electric recliner for Mom. I sat in a regular simple chair for a while. Eventually, I asked for sheets and blankets and made a pallet on the hard floor. Even though it was carpeted, it was like not at all spongy. It didn’t matter to me. I was where I wanted to be: with my parents.
The next morning, Dad was still with us. His breathing had slowed noticeably. It was around 2:30 PM when I thought I didn’t see Dad breathing anymore and pointed it out to Mom. She left the room to go get the head of nursing. While Mom was gone, I saw Dad’s chest lift one more time. The head nurse, their neighbor, turned to us and said, “He’s gone.” She reached out and hugged my mom and then hugged me. Mom and I hugged each other saying, “Thank God. I’m so happy for him. He was ready and now he’s at peace.” We were asked if we wanted to spend a few minutes alone with his body. Both Mom and I agreed that we had spent all the time with Dad that we needed and were ready to go. Before I left, I did go over to Dad’s remains and kissed his head.
As I headed for the door, a couple who were friends with my parents had just come for a visit and were talking with my mom as she explained that they were too late, that he had just passed away. The four of us ended up going to the dining area and sitting together for a little while as Mom told them about the end. We were there as the director of the funeral home came to remove Dad’s body and transport it. He brought Dad’s watch to Mom as she had requested. Mom was already wearing Dad’s wedding ring along with hers because it had kept slipping off and she was afraid of it getting lost. We stayed a bit longer before going home.
The Visitation and Memorial Service
Dad passed away peacefully on Friday, August 3, 2018. Planning and preparing for his visitation and memorial service was a little challenging. Thankfully, because we needed time for some family to travel, we had an extra week.
I collected pictures from family, ones I had, and from Mom’s stockpile for a slideshow that the funeral home put together. They also helped me design the program. I chose the pictures and an additional poem. My second brother and my mom helped chose the music for the service and I chose the music for the slideshow. For the service, the songs were, “Softly and Tenderly” by Alan Jackson, “I Can Only Imagine” by MercyMe and “Wind Beneath My Wings” by Bette Midler. For the slideshow, I chose songs by James Taylor, “Up On the Roof,” “Shed a Little Light,” and “Secret o’Life.”
The visitation was on Saturday, August 11, 2018, from 9:00-11:00 AM and the memorial service followed at 11:00 AM. Pastor Christy Ehrle did a fabulous job weaving stories about Dad together with the music we had selected. It was truly a tribute and a beautiful way to remember Dad, the husband, the father, the brother, the friend, the union president, the athlete, the hunter, the man. Following the memorial service was a brief graveside service before we said our final good-byes to him. From there we went to town and shared a meal with family and friends at a local church.
A Year Later: My Reflections
My dad has been gone a year now. It has taken me that long to finish writing this blog about the experience of losing him. As with any experience, it’s fresher in the mind closer to the time that it happens. But at the same time, it was too fresh to begin to write about it right away. Besides that, I’m a teacher and my school year started on August 21st, so I had little downtime before diving back into a packed, things-to-do lifestyle. So I didn’t begin writing it until December 9, 2018.
It was probably good for me to have other things to occupy my mind. My dad’s passing, the experience of being present during much of his declining health as well as during the last 24 hours of his life was ever-present in my mind even as I was going through the usual steps of beginning a new school year. I cried a little after returning to my own home with my husband and son, but not as much as I thought I might. Then I’d question myself and wonder if that was okay or an inadequate response to being in a period of grief and mourning.
I talked to my mom every day on the phone. I worried about her and wanted to make sure she was okay. We talked about the experience and how we felt. We both agreed that we had both, but especially Mom, been running on adrenaline for so long, it was a foreign experience not to have any more urgent situations to which to attend. This left a hole that was my father and her husband, but time for rest was welcome. But living with this dichotomy conjured up a lot of guilt for me. Mom was so calm, even-minded and pragmatic in all her responses to me. THAT made me feel guilty, too! Here I was supposed to be “taking care of her” as I had promised my dad that we would, but once again my mom was mothering me. She was reminding me that everyone responds differently to grief and that there is no right way to mourn. While I understood that intellectually, it didn’t help my heart know what to do with itself.
I wanted a guide book that I could follow with a beginning, middle and end. I wanted to know if I was doing it “right” and if I was adequately “honoring” my loved one’s memory. I wanted a timeline to know how long I should feel lost in time and place. My days were no longer filled with daily calls with Mom to check on Dad’s condition, followed by daily text message updates from me to my brothers with pertinent information and decisions to be made. My time now had to be filled differently and I didn’t know what that should entail. I also WANTED to cry. I wanted to let out feelings that I know I was holding back because after my dad passed, my mom once said that she couldn’t cry “right now” or she’d “never stop.” So, for my mom’s benefit, I “stayed strong” for her and held back my tears, too. But now, when I wanted an emotional “release,” they weren’t there. And again, I wondered why.
My dad was wonderful in lots of ways. But he was also very rough around the edges. As a child growing up, it was because of him primarily that I became a “rules follower.” I didn’t want to face his wrath. His anger was scary to me. Not because I feared him physically, but his FACE and the tone of his VOICE and the WORDS he spoke (and yelled) weren’t something I ever wanted to experience a second time. So in addition to the loving dad who taught me to drive in the parking lot of Morgan Creek County Park and took me for nature walks as a young girl and watched Wild Kingdom and Disney movies with me, he also had that other side that could include the “silent treatment” when he was mad at me. I often found his parenting to be unfair and over-the-top when I was a teenager. Once, he was going to make me quit the volleyball team in high school because I didn’t do enough around the house to help my mother. When I asked my mom what more I should do, she couldn’t answer, and she couldn’t disagree with Dad. It could be tough living with Dad even though there was much about him to love.
About two weeks after his death, I finally had a full-on cry. The kind of cry that is cathartic but also left me with swollen eyes and a king-sized headache. I had finally let go of the guilt and just mourned the Dad I missed. It was a kind of rite of passage when I realized I can no longer ask my dad questions about the past or for advice about the future. I realized that is now a closed chapter and that alone is worthy of plenty of mourning. I realized even though I had been a parent myself for almost 20 years, I was about to be THAT parent: the one holding information of the past and advice for the future for my son. That’s humbling. It also made me realize that it was time to harvest the knowledge I want to know from my mom while I still have her with me. I want to enjoy every visit and every phone conversation and soak in the sound of her voice.
There were a few things I did that helped me cope during the early days after my dad passed. The first was to sign up for daily “Coping With Grief” emails from the funeral home that handled the arrangements. Their daily emails were so important for me then. They often quoted a text referencing death or dying in some way and then gave some advice about what it meant or how to handle it. Most of them seemed like they were written for me on the day they arrived in my inbox. Something else I did was to read various people’s experiences or thoughts about “the afterlife.” Where was Dad’s spirit now and what would that be like? The third-biggest helpful thing I did was to look at pictures of him and watch the slideshow I had created about his life and our family. The music is nostalgic at first and then uplifting toward the end. It always leaves me feeling better. And finally, writing this article about my experiences, my thoughts, and my feelings has also been a very helpful way for me to relive and process what I went through. Initially, my purpose was to share with others who may be going through this or who may someday go through this with one of their own parents so they might know some of what to expect. And hopefully others will find it so, but I’ve also found it to be a release for me . . . possibly as satisfying as having that big cry, but without the headache in the aftermath.
Moving forward, I continue to lean on family and friends for support when I need it. I keep busy with school and with my immediate family. I look for new creative outlets for self-expression. I read LOTS of romance novels, mostly as an escape. Times are tough right now in our country. Not only does my father’s passing bring up difficult feelings, living in the current political realities brought about by the administration of our 45th U.S. president makes dealing with personal grief that much harder.
But, I’ll end with a funny memory of Dad that I’ll never forget. During one of his hospital visits when he experienced some confusion due to a urinary tract infection, the nurses and doctors used to ask him basic questions to see how his mind was functioning. They would usually start with, “What is your birthday?” Dad ALWAYS got that one right. He’d probably been asked and answered that one a hundred million times during his illnesses. Another they’d ask was, “What’s the date today?” He didn’t usually know, but was crafty enough to look at the whiteboard on the wall to see what was recorded there. (But honestly, when I am off from school in the summer, I don’t always know what the date is either!!) They always asked him, “Where are you right now?” This one he didn’t get right either. He thought he was in one of two bigger hospitals in one of two bigger cities where they used to live rather than the small-town hospital where they were currently living and most often went. But it was THIS question that I’ll never forget: “Who is our current president?” My dad was very interested in politics and usually knew his stuff, but he couldn’t pull up the name. Instead, his answer was, “I know that he’s a SON-OF-A-BITCH!”
Yep!! That was our dad. We miss him so much and will never forget him. He was a CHARACTER! That is for sure.
Factionista Files 