Welcome to Make. That’s pronounced “mah-keh” – the Hawaiian word for “death.” This podcast series explores death and times of dying. What do you remember about how your loved ones died?
Show Notes
- Staff folder with podcast assets
- Podington Bear
- Blue Dot Sessions
- Transcribed using oTranscribe
- Photo by Pixabay from Pexels
Transcript
00:00 PERRY: Hello, nice to meet you. Welcome to ‘aha’ ‘aina wai maka (alternatively, Make). My name is Perry, and on July 11, 2018, my dad died.
[MUSIC: Paper Boat by Podington Bear]
00:20 DALE: Comin’ out the gate…strong.
00:25 PERRY: That’s my wife, Dale. The two of us live in Sammamish, Washington, about a 30 minute drive east of Seattle. We live in a one bedroom apartment, about 700 square feet worth of carpeted homeliness. We have a big canvas photo of the two of us hanging on our wall. It was taken at our wedding in Hawaii, where we’re both from. In the photo, Dale and I are in the center, me in a Men’s Warehouse rental, black suit and coral tie and vest. Dale is in a beautiful wedding dress, not quite white but not pink or beige either.
00:58 DALE: Blush!
PERRY: It’s blush?
DALE: Yeah! (laughs)
[MUSIC: Lahaina by Blue Dot Sessions]
01:11 PERRY: This photo is special to us, not only because it is a still shot of our favorite moment in time, but also because everyone who attended our wedding in in this photo. There’s Dale’s mom and dad, tucked away in the back, barely even recognizable through the upraised arms of my Aunty Lisa and Laurie, my first cousin.
01:27 Our wedding officiant, Angela, is there on the right. In her left hand is an iPad, holding notes from her speech. She’s a former television news host turned officiant so she was the most composed of the bunch at this wedding.
01:40 Making our way over to the left we see our friend See Ming, holding the wedding box used to collect all of our wedding cards. Further to the left is Dale’s friend Julie and her husband Paul. Julie has her mouth wide open and her eyes closed, a pose now forever etched into our wedding day memories.
01:58 At the front of the group photo, of course, is me and Dale flanked by our wedding party. There’s Terry, Angela, Sherry, and Dale’s sister Beth. Next to me is Mike, Devin, Nick, and my best man Travis.
02:12 Moving further to the left we have Devin’s wife June, and their then barely-1-year-old daughter River. She’s three now. Behind her is Dale’s coworker Michelle and her daughter Quinn. Ron, who is now married to Beth, Dale’s sister, is standing there towering over most of the elderly Japanese folks behind him (Dale’s family).
02:34 Even further to the left is Dale’s friend and former coworker Lisa, who took the time to attend our wedding in Hawaii as a way to, apparently, eat all the food Hawaii has to offer. Next to her is her husband Todd, and our friend Missy. Next to them is my sister in law Wendy, my brother Loren, and my then 1-year-and-some-change-old niece. Behind my brother, mostly blocked out except a tuft of forehead and hair and extended right arm is my mom. And finally, at the far left, and the very end of the pack, is my dad.
03:15 My dad, wearing a white, short-sleeved aloha shirt and black slacks, the same outfit that he wore to my brother’s wedding two years prior. He’s standing there, both arms raised high, smiling and laughing. Our main photographer, Lucy, had the second photographer, her husband Sam, lift her probably not even a 100 pound frame high above his head like an Olympic ice skating pair to take this photo. To make sure she captured everyone in the shot, she had to use a fish-eye lens. And in this photo with the fish eye lens stands my dad, at the furthest left of the photo anyone could possibly be without being cut off or out of frame. His body, slightly distorted and angled strangely because of the fish eye, the bottom of his shirt slightly wrinkled from sitting during our ceremony, all barely fit into that leftmost edge of the canvas on our wall.
04:06 This photo was taken on January 7th, 2017. A year and a half later, my dad was dead.
[MUSIC: Retrograde by Podington Bear]
04:33 DALE: So when you watch TV, death happens pretty quickly. Granted, they’re doing it in a 40 minute episode or whatnot, but it happened quickly in the grand schemata of the world. But it didn’t happen quickly when you’re going through it. It felt both painfully long and rapidly quick at the same time.
05:15 PERRY: Do you remember what eventually killed him?
05:19 DALE: I just know that his heart was failing and he had not kept the best health…
05:28 PERRY: Quick insight into my dad’s medical history. About 5.5 years ago, my dad was admitted to Queen’s Medical Center in Honolulu, HI with an atrial flutter, an abnormal heart rhythm. He was identified as having cardiomyopathy. If you’re like me, cardiomyopathy is a medical term you heard on ER, Grey’s Anatomy or New Amsterdam, some medical drama on television but never really understood what it was. Doctor’s described it to us as heart disease that causes decreased functioning of the heart. It causes the muscle to be weak and makes it harder for the heart to pump blood to the rest of the body.
[MUSIC: Toil by Podington Bear]
06:12 5.5 years ago, my dad was scared, as we all were. My mom, bless her heart, rarely eft his side in his first stint in the hospital. Situated in a room in the ICU, the hospital staff set up a cot in the room so my mom could sleep over each night until it was decided that my dad was well enough to leave the hospital. When doctors and nurses came into the room for check-ups, they always asked him a series of questions to determine his cognitive functioning.
06:39 PERRY: Do you remember what those questions were?
06:43 DALE: It was basic stuff like:
What is today’s date Where are you right now? Can you name your kid’s names? Do your kids have wives? Do you have a grandchild? What is your wife’s name?
07:06 PERRY: 5.5 years ago, my dad was able to answer these questions. When he was deemed releasable, his main cardiologist recommended that he take a trip to Stanford Medical Center to meet with specialists. Hawaii, unfortunately, doesn’t have the expertise to provide procedures such as heart transplants, he said. Heart transplants? Yes, my dad was considered for a heart transplant due to the failing nature of his most vital organ. His heart was functioning at a deteriorating rate, 60%, 54%, 42%. The numbers continued to fall despite some “slight” changes to his diet and overall health.
07:41 My dad, miraculously was able to stave off a heart transplant. After multiple medical tests and procedures, frequent adjustments to a number of different prescriptions and medications, and no less than three trips to Stanford – something that both my parents hated – my dad was better. “Recovered” is a strong word, but doctors had mentioned that his overall heart functioning had increased to 62%, higher than his heart was functioning when he was initially admitted to the hospital.
5.5 years ago, my some miracle, or as my mom would say, “divine intervention” – my dad stared Death right in the face and told him to fuck off.
[MUSIC: A Rush of Clear Water by Blue Dot Sessions]
08:37 PERRY: When do you first remember going to Hawaii and finding out my dad was sick?
08:41 DALE: I feel like that’s two-fold. We went for Beth’s wedding in April and it was overlapping with your birthday. We were supposed to go to Side Street, if I remember correctly. We were supposed to go to Side Street and then when we got to your house – maybe when we first got there. Either way, it was decided that your dad wasn’t feeling well. And so we ended up eating at home and so we had to re-jigger plans essentially to figure what we were going to eat. It might have been your birthday or the day before. And like a month later, we were calling for, randomly, Cinco De Mayo? Or maybe it was Mother’s Day? We called your mom, and she was like, “Dad hasn’t been feeling well.” It must have been Mother’s Day because Cinco De Mayo is too early. We were like, “Oh yeah, from the last time.” And she was like, “Yeah, he hasn’t been feeling well from the last time. He’s been sleeping a really long time like 8, 10, 12 hours at a time and only up for 15 minutes.” At that time, she had just started to retake his blood testing – his blood sugar, and it was like really bad. Like, I remember that and like, “He’s been sick for a month and you haven’t gone to the doctor! That’s insane!”
10:26 PERRY: In April of 2018, we traveled to Hawaii for Beth and Ron’s wedding. While we were there, we stayed with Dale’s family in their home. Moanalua, for anyone keeping track. We hardly saw my family during this trip since we were buzzing around like worker bees, crafting burlap ribbon, putting together gift bags, searching for strings of twinkle lights at Ben Franklin, the local craft store, and buying yards and yards of tulle. So. much. Tulle.
[MUSIC:Jog in the water by name]
10:55 DALE: Like a pile of tulle at Ben Franklin!
10:58 PERRY: And we brought it there!
11:01 DALE: And we took it! We were doing the measurements and you buy extra in case you mess up!
11:09 PERRY: After the wedding on the 21st, Dale and I had much more free time on our hands, and we decided to spend our time doing what we normally do – going around the island, eating great food, traveling to beaches, and seeing people who we don’t often get to see. We saw Travis, Devin, and Mike. Dale had lunch with Sherry. We were with our people, and we were home.
11:29 My birthday is on April 24th. We were in Hawaii for my birthday, something that happens infrequently since we live so far away. My parents, noticing this rarity, suggested that we go out to dinner to eat some of that “great food” I just mentioned. Unfortunately, I got a call on my birthday from my mom who said my dad was feeling sick and wouldn’t be able to go out. Instead, we visited my parents and ordered in. We ate with my parents, my brother and sister-in-law, and my niece. Not the best birthday meal I’ve ever had, but it tried.
12:04 Little did I know, this time in April would be the start of my dad’s second steep health decline, and one that he was unable to miraculously recover. Death returned, on my birthday weekend no less, and decided to stick around for a bit.
12:32 Beginning in April, my dad started moving a bit slower, experiencing pains in his body, and began to have noticeable swelling. First, in his belly. Then, his legs. He stopped drinking water. He became dehydrated. He fell a couple times. It was May, and Mother’s Day came and went. They stayed home. On the Friday before Memorial Day, my mom called me to let me know that they were in the hospital. My dad couldn’t make it from the bedroom to the living room, all but a 10 foot walk. My mom insisted that they go to the hospital. My dad suggested otherwise. When he couldn’t even walk to kitchen island, she made an executive decision and took him to the hospital. He couldn’t walk on his own, so she assisted him as if they were in Saving Private Ryan, my dad injured, and they were on the battlefield.
13:21 Rather than go to the premiere medical facility on the island, the aforementioned Queen’s Medical Center in Honolulu, they went to the hospital closest to them. They could avoid traffic that way.
Their stay in Queen’s West Oahu was short lived, as the doctor suggested that my dad return home with some new prescriptions in hand and check in again after Memorial Day.
[MUSIC: Chrysalis by Podington Bear]
13:52 Memorial Day came, and my parents ended up in Queen’s Medical Center in Honolulu…again. My dad had not recovered and only declined in health. I got a call from my brother, Loren. Usually a bad sign. He suggested we come back to Hawaii as soon as possible.
14:08 I think back to New Year’s Day, 2018. Dale and I visited the Grand Tsubaki Shrine, a jinja shinto shrine located near Granite Falls, Washington, part of Snohomish County. It was our first time visiting, and one year removed from actually visiting Japan for our honeymoon. Lines were long at the shrine, but we made our way through to do Misogi, the practice of purifying your hands and mouth in free flowing water. We prayed, we bought ofuda, or paper tags that act as household talismans for protection. We bought omamori, yearly protective amulets imbued with all kinds of blessings – prosperity, good traffic safety, avoidance of evil. We also bought omikuji, or “sacred lots”. To purchase these, you make a donation and shake a box filled with various numbered sticks. As you shake, the sticks shift around and, when you’re ready, you turn the box over. The bottom of the box contains a small hole, the exact size of a single stick to protrude bearing its number. The number corresponds to a series of drawers that the attendant will open to provide you your fortune. Your fortune could be great. This year, 2019, Dale received a fortune that was described “Great good blessing” while I received a “Good!” blessing. On New Year’s Day of 2018, I received what amounts to a “Future curse” fortune. When receiving fortunes, it is customary to keep good fortunes but to discard curses. Traditionally, you tightly tie your fortune to a tree and leave it at the site of the temple. In 2018, I did just that at the Great Tsubaki Shrine. I sometimes wonder now to myself, “Did I tie it tight enough…?”
15:49 DALE: I just remember it took place over June, July, August. It was like three months after everything was said and done. We were probably only IN Hawaii for probably like, because we kept flying back and forth, it was like two weeks, then fly back for a week, then fly back for a week and a half, and fly back and then like 3 days…(fades out)
16:13 PERRY: I couldn’t recall just how long we actually spent, so I had to refer to my work calendar. According to my calendar, we left on May 31st of 2018 and we were in Hawaii until June 11th. That’s a full 11 days, not including flights and travel. The entire time, my dad was in the ICU. My mom, just like 5.5 years ago, rarely left his side. But something was different. The doctors and nurses continued to ask my dad the same series of questions to test his cognitive capability, but this time he couldn’t answer them.
16:45 “Tony, do you know where you are?” “Yup.” “Where is that?”
Silence. My mom, overtly providing an answer-non-answer for my dad would blurt out, “Come on Tony, what hospital are you in? Are you in Queen’s or….”
“Yup, I’m in Queen’s.”
This happened, a lot. The nurse, “Tony, what year is it?” My mom, “Come on Tony, is it 2017 or 2018?”
[MUSIC: Naptime by Blue Dot Sessions]
17:35 He rarely, if ever, answered accurately. At times, he forgot who my mom was. When asked if he knew who I was, I was met with a blank stare or a, “Oh, there he is.” The doctor, “Yeah, but who is that?” My dad shrugged.
In 2013, doctors were much more willing to describe alternative paths to recovery. Changing of diets, transplants, etc. This time, there were two paths we could take: alternative home care, which ultimately amounted to at-home hospice services, or stay in the hospital. Neither of my parents were particularly interested in staying in the hospital any longer. Keep in mind, they didn’t want to come to this hospital in the first place because it was a far long drive from their home 35 minutes away, 50 if you hit traffic. They released my dad.
18:36 PERRY: We were there for 11 days, from May 31st to June 11th. The entire time, my dad was in the ICU. What is a typical day for us during that time?
18:49 DALE: During that trip? It was like, wake up super early in the morning or not super early. Wait for traffic to die down. Call your mom, see if she wanted anything in particular from the house. Either grab something on the go or eat something on the way there. Drive there, get there what…10 o’clock? 9:30 in the morning? Depending on if we wanted to be there for a doctor’s visit or not to hear what the doctors are saying because they always come in the morning. They never came in the afternoon! We would hang out there until 1 or 2 o’clock. Enough time for your mom to go home, take a shower, and come back. I feel like the first time we were there, we didn’t eat lunch. We just ate snacks that we brought. And then we would stay until 10 o’clock or 11 o’clock at night and that’s when we got really good at finding things that were open late to eat dinner at because hospital food there was not pleasant. It’s not like we wanted to eat there a lot.
19:58 PERRY: What were some of the biggest issues you remember coming up during this time when we were home in Hawaii?
20:05 DALE: To me, a lot of it comes down to lack of coordination and planning and forethought. That meant like FMLA, like my job was willing to say like, “Hey, I understand that you can’t get paid on FMLA so if you have that, just ‘work’ for as much as you can to keep up.” Don’t worry about it. They were really supportive, but I’m also a person like, “Work! Does that mean I have to answer all of the emails, or only some of the emails? What does turnaround time look like?” I have administrative stuff that I need to do regularly and does somebody take care of that for me? Again, lack of planning.
20:47 Lack of planning in the essence that when we went that first time, we literally did not have a return date. When you’re talking to your HR person and they ask when do you think you’re coming back and you’re like, “I don’t know.” So lack of planning there. What does life look like for work? What does life look like for us? Do we pay rent? That kind of lack of planning. Entirely like, how long are we sleeping in your house on a bed in a room that has a lot of stuff in it that wasn’t meant for people to live in?
21:27 Lack of planning like who is coming and going. Is it Loren and Wendy that are coming? Should Loren, Wendy, you and I be there? Should we do it in shifts? Does your mom want to be there the whole time? There was nothing that was ever like, “Monday, Wednesday, Friday, because we’re here, you and I would run it.” On Tuesday, Thursday, you and I would go and do whatever else your mom needs help with. Everyday felt like a who’s on first, who’s on second, what are we doing, how are we doing. Literally trying to figure it out every day was frustrating. Not knowing how long was frustrating. Honestly, it’s like living in limbo every single day. For literally an undetermined amount of time. It’s not like, up until this point, Hawaii was always a vacation for us. And this was not a vacation. This was hours of sitting in a hospital on an uncomfortable chair or standing in a hospital, or walking with a two year old around a hospital. Or washing your hands in a hospital. It wasn’t vacation. I don’t want to say…I think it’s callous to say it was work, but it’s something that wasn’t a pleasant experience in doing it. It was a different way to be in a place that was normally family time, and a vacation, and relaxation even. It was none of these three things.
[MUSIC: Periodicals by Blue Dot Sessions]
23:24 PERRY: Ultimately, my family decided to try out at-home hospice care. Dale and I weren’t around when the electric medical bed was delivered and installed at the house. We had to return to Washington. We had work, we had rent to pay, we had an apartment to care for. When we landed at the Seattle-Tacoma airport on June 11th, we decided that we would visit again over the upcoming July 4th holiday. It would give us about three weeks to look for another flight, get affairs in order at work and with our apartment manager, and let us actively prepare for travel. We were back in Hawaii on June 26th.
24:05 My phone rang late in the evening on June 25th. It was Loren. “You need to come back here. Soon.” My dad was readmitted to the hospital. His legs were swollen, his belly distended, his cognitive functioning was slipping away. He wasn’t recovering, much to the dismay and disbelief of my mom and brother. They heard the doctors and nurses, just like I did, speak in detail about how there was no recovery. “Yeah, but there are always miracles!” is what my mom would say, not understanding that my dad’s situation in 2013 and 2018 was completely different. My mom and brother believed that my dad’s condition could be overcome through change in diet, through exercise, through sheer will to live. “You want to see Leia grow up, right? So you need to get better.” My dad would nod.
24:50 The night of June 25th, or more accurately the morning of June 26th, was rough. We had already purchased tickets to come back for the July 4th weekend. We were holding out for word from my brother on exactly when we should come back. Once we heard the news, we were on the phone for three hours waiting on Delta customer service so we could change our flight dates for the earliest available flights. We called an Uber at 5am. We packed a duffle bag and a small suitcase with clothes and essentials. We were at SEATAC airport by 6am. We were on a plane by 7am. Dale forgot to pack her bras.
25:32 We were back at the hospital by 1pm Hawaii time. My dad looked just as we had left him, stuck in the ICU, looking miserable, wanting to be anywhere but there. He was snapping at nurses this time, telling them that he couldn’t walk as much as they wanted him to. He struggled to hold utensils while eating. Sitting up in the hospital chair next to the bed drained him of all his energy. He was strapped in. He took solace in the fact that my brother purchased the Beatles White Album for his birthday on August 12th. Loren surprised him by bringing it to the hospital and putting the songs on his phone so he could listen to the album on a bluetooth speaker in the hospital room.
[MUSIC: A Simple Blur by Blue Dot Sessions]
26:23 My dad had a procedure to have a new IV – a peripherally inserted central catheter or PICC line. This would help inject new medication directly through his veins and close to the heart. As it was described to me in not so many terms, having a PICC line set up was not a good permanent solution. The two medications that would be delivered through the PICC line – vancomycin and milronone – were not long term solutions. My dad’s insulin injections to keep his blood sugar in range – it was constantly in the 250+ range even after fasting to prep for procedures – would continue. They would release him from the hospital again to return to at-home hospice care. Physical therapists and occupational therapists would be visiting the home. The hospice care providers would deliver additional diapers and absorbent pads to help with the incontinence issues. Dale and I traveled to Don Quijote, a catch-all Japanese-branded store on the island, to purchase Medline Toilet Safety Rails and a height-adjustable safety frame. We all decided pitched on making heart-healthy dishes at home despite one doctor’s insistence that my dad enjoy his meals.
27:39 He was released from the hospital on or around July 1st. Between this time and when we were last in Hawaii, my mom called in a favor to their contractor friend to have a wheelchair accessible ramp built for the home. It cost $19,000. It stretched from the garage, around the left edge of the house, up to the back patio, and subsequently into the back door and glass sliding door of my parents’ room. My dad wasn’t able to walk any longer. He needed the assistance of a wheelchair to get around, not even having enough strength to use a cane or the walker provided by the hospice center. He was grouchy. He was moody. He was sad. He was upset. But he was around, and that’s what mattered to my mom and brother.
28:24 PERRY: For us as a couple, what do you think the biggest struggle for us was?
28:30 DALE: Like I said, that was the most amount of time I had spent with your family. Concentrated amount of time. We used to go over for dinner and hang out, but that was concentrated amount of time with people that I wasn’t necessarily comfortable with. Like, comfortable comfortable. I don’t know how to explain that. You’re still in that like, “Who takes a shower first? What’s the morning and nightly routine?” You’re having to find a rhythm. But that’s your family. To me, that’s a stark difference. I’m sure you feel like that when you’re at my house. I feel like when I go home, you drop into the rhythm of whatever my role has always been and will always be in my family. Similarly, that happened for you. But you have another person now and that person doesn’t know that rhythm, per se. They weren’t in that role forever.
29:40 So I think it was hard because I wanted to support you in whatever you needed. That’s what I was there for, but I was also uncomfortable. How do you balance that with being uncomfortable? Usually I tell you if I’m uncomfortable, but I felt like I couldn’t because you had other shit going on. Essentially, your dad’s dying and I’m not about to be like, “You know, I don’t really feel comfortable here anymore.” So it’s just dealing with it. Dealing with not sleeping well. Dealing with being hungry to the point of almost passing out. Dealing with those little things like that. It was frustrating because all families are dysfunctional, probably, and your family is not immune to that.
30:41 I remember we talked about being paralyzed by indecision and that happened a lot due to lack of planning, Like, “Where do you want to eat for dinner that night?” And having to sit in the back and wait for people to be like:
I don’t know.
I don’t know.
I don’t know.
Suggestion.
No.
Suggestion.
No.
I don’t know. What do you want?
Well I want this.
Well I actually don’t want that, I want this.
31:02 That cycle of shit happening every day was rough and I would complain to you a lot, like, “Oh my god your family! I don’t understand why they don’t make a decision!” So that was something.
31:18 I think we argued about, I don’t want to say values, but because I hadn’t done FMLA, I felt like a desire to be in two places at one time fully. I needed to be with you fully, but I wasn’t “off” from work so I felt like I needed to do work and that was an issue that came up. “Do you really feel like you need to do work more than you need to be here?” Where was more important, or more importance in terms of time management? And what should happen then and there?
Sometimes I felt like I was on an island by myself and I didn’t know how to tell you that without sounding like like a bitch, honestly.
32:15 PERRY: Why did you feel like you were on an island by yourself?
32:20 DALE: Because…I think a lot of it had to be…I talked to a coworker about this. This was way after the funeral and everything. She said, “You know the crazy thing about death is that everyone feels by themselves.” Because everyone grieves differently. She’s like, “Everybody wants to be there but they are grieving differently so everyone feels like they’re alone.” I’m sure your mom felt like she was by herself because she lost her partner. I’m sure Loren felt like he was by himself because he lost his dad in his way he imagined dad being there. I don’t know if you ever felt by yourself, but there were times when I felt by myself because I would literally be by myself. Meaning that I would be sitting in the room that is essentially a storage room that is our bedroom and just be sitting there. Because either A) I didn’t want to play with Leia, or B) I didn’t feel like it was a conversation – I wanted you to have a moment with your mom. There were a lot of times when I was just by myself. Either literally staring at your brother’s Funko Pops in the boxes or just looking at my phone because what else…
33:43 I think i was still emotionally going through stuff so sometimes I felt like I was by myself because I couldn’t talk to you how I usually talk to you.
33:52 PERRY: Why did you feel like you couldn’t talk to me like how you normally do?
33:57 DALE: I think I complain to you a lot and I feel comfortable complaining to you a lot. I felt like I couldn’t complain to you about your family…because it’s your family (laughs). And like I said, you were going through a loss so magnanimous that I wanted you to just…I wanted to be a rock and rocks don’t complain. Rocks are there and they’re there all the time so you can’t complain. You have to be there and be the person.
[MUSIC: Relinquish by Podington Bear]
34:43 PERRY: This trip, Dale and I actually stayed at her parents house. Coincidentally, they were traveling to Japan to spend some time abroad. My father-in-law was stressed out about the logistics of international travel, but was relieved that someone would be home to house sit. We obliged, and also agreed to water my mother-in-laws plants and garden around the house. This practice, watering the garden every morning, was a brief moment in the day where Dale and I could be ourselves.
35:10 DALE: I think initially when I first started, it was task to do. Do you remember my mom left that To-Do list of index cards where she’s like, “Buy soup for Aunty Kay. Water the plants. Water the plants in the house.” She had very specific things she wanted done. I was initially doing it more as a dutiful child and doing it. She wanted it to be done everyday. The plants needed to be watered either in the morning or the evening time but it was an everyday thing. She just bought an avocado tree and she didn’t want it to die. She just spent $150 on an avocado tree so she was like, “if that dies, it’s your fault.” I felt a little pressure there.
35:57 As I got to do it more and more, because I think we usually did it at 7:30 in the morning, 7:00. It was actually kind of nice! There was a lot that would happen between 10 and 10 o’clock at night or by the time we fell asleep, midnight. So 10 in the morning and midnight. No matter what, there was always something that happened during that time. It was always something pretty big that we would end up discussing on the way home. But we were also tired. So you’re discussing and you’re tired and you’re like, at the end of the conversation you’re like, “Agree to disagree” or “I don’t know what to do.” So you’re just sitting in that funk of, “I don’t know what to do.”
36:52 It just seemed calming and it was just a meditation. It was an opportunity to digest what was happened and/or what could potentially happen. It was just..it was nice. It was quiet. It was a moment when it was quiet when we weren’t debating about what life beginning or ending choice we were making. Or what horrible thing could happen. Or what we were trying to figure out. It was just…watering plants.
37:24 PERRY: My mother-in-law, Sara, had recently planted an avocado tree. We were willing it to flourish, an attempt at finally proving Dale has at least some type of green hue to her thumb. Sara’s neighbor would wave to us every morning as we watered. Around the house we would go, watering the pineapples, succulents, green onions, and lemon trees, hoping that they would bear fruit. Perhaps we were willing these on to flourish as other things in our life were withering away. Perhaps this small activity, one of the only times we were actively away from the despair of a family member dying before our eyes, was our attempt at introducing normalcy and a sense of peace and a calm before the storm.
38:03 DALE: Hospice care is hard. At that time, I felt like your dad honestly couldn’t use the bathroom by himself. He couldn’t take a shower by himself. Because of the milronone – the medicine he was taking – because everything was essentially IV’d other than the pills he was taking into him – your mom was basically a makeshift…she did the best she could with all the things she had to do. She was nurse, full time. So everybody else basically had to pick up the stuff your mom would do.
38:49 But, you’re kind of on edge all the time, right? It’s hospice. I don’t know if you remember…Jess had sent the picture of where hospice falls. You’re alive on this end and you’re healthy. On the other end of the spectrum, you’re dead. Hospice is real close to the right end of the spectrum where you’re dead. It’s the end of it. I think it’s also very tense during that time because your dad would drop a spoon and that noise would trigger you. Oh shit, did something happen? Do you need to go run and help something? Your mom would yell, like “I need help!” Like helping him off the bed to go to the bathroom.
39:35 I remember us doing a lot of cooking, or trying to do rotations of cooking. What is a low-sodium healthy meal that he would like? So what is in that little part of the Venn diagram? Um, fish? Like, what can you do with what he likes but still make it healthy? It was just tense.
40:03 PERRY: My dad didn’t have the strength or energy to move about on his own anymore. Attempts at trying to sit up and get to the bathroom before he messed himself were futile. I caught him in one of his more lucid moments during this time. His thinking seemed clear. He reminisced about stories of his youth. Then he told me that he felt embarrassed. “Why?” I asked. He mentioned that he was embarrassed that he couldn’t care for himself. He couldn’t care for me, or my mom. Couldn’t care for his granddaughter. Couldn’t care for himself. I asked him what he wanted me to do, to make sure that we were doing right by him. He told me to take care of my mom. Stubbornly, I think he knew it was time. It was one of the last lucid conversations I had with him.
40:47 By sheer coincidence, it just happened that we were able to stay at Dale’s house at this time. Coincidences abound in this story. My dad’s illness starting to take hold in April when we were in Hawaii for Beth’s birthday. Our arrival in town when Dale’s parents had a planned vacation. One of the nurses at Queen’s Medical Center was also a nurse who had cared for my dad 5.5 years ago. She checked in during and after her shifts to see how he and my mom were doing. She shared words of encouragement.
41:19 In July, another coincidence. The extended Yee family held a family reunion around the July 4th weekend. My dad’s sister, Lisa, who lives on the Big Island, was in town. His cousins from the mainland were in town.
41:37 Also visiting were Chris, my dad’s nephew and subsequently my first cousin, his wife Stacy. Chris was excited to be back in Hawaii. He was only in town for about a week, but he was able to eat shave ice every day. He considered it a successful vacation.
41:51 We declined the invitation to attend the family reunion, understandably, but these family members visited us at home to spend time with my dad. He was particularly excited to see Chris and Stacy, who live in Kentucky and only visit every 4-5 years. Their kids were getting older, but still excited to see their great uncle. A day after the reunion, some family members paid a visit and brought scrapbooks and photo albums from the event. We thumbed through them for my dad as he watched. He could only stomach being out in the living room for so long before he wanted to return to bed. I don’t think he particularly liked viewing these albums. I asked why he wanted to head back into the bedroom. Was it because he was tired? Was it because he needed to use the bathroom? Why? He gave no answer, and instead insisted he go back to the bedroom, attempting to wheel himself back in his wheelchair despite the wheel locks being on. We took him into the bedroom and helped him back in bed to rest. “When is dinner?” he asked. I gave no answer, and returned to the living room.
[MUSIC: Warbled Reflection by Podington Bear]
43:17 One of the things that people don’t mention during these trying times is how transactional the process of death can become. Before this incident, I always heard the phrase, “Getting your affairs in order.” Hell, I used it earlier in this story. It was also very vague, broad. Now, I know what these affairs are. The affairs are having discussions with your family about transitioning, from home to hospital, from hospital to home, from life to death. Affairs are talking about finances, bank accounts, wills and trusts. Affairs are co-signing home loans, having a list of accounts to cancel or transfer upon death, and reviewing spousal rights in the event of death. Affairs are completing and submitting orders for resuscitation, for feeding by tube in the event of emergency, for deciding on end-of-life decisions such as doing everything possible to keep someone alive on life support despite the quality of life, for performing CPR. Affairs are deciding how to transition for the dying and for the family and friends. Affairs are contacting funeral homes in advance, for having plans to dispose of the morphine vials provided by at home hospice care, for deciding on burial or cremation.
44:32 Dale and I tried to have this conversation with my family. No one but us seemed particularly interested, nor did they seem like we were truly at end-of-life stages. My brother, continuing to tell my dad that he needs to get better if he wants to see his granddaughter grow up. My mom, continuing to bank on divine intervention. My sister-in-law, generally hopefully but acquiescing to the blood relatives. Earlier in June, I had pulled aside a cardiac specialist at the hospital before Dale and I left, before my dad was released from the hospital, before we even had an opportunity to select a hospice caregiver. I asked the specialist, realistically, what the changes for a full recovery, or any semblance of actual recovery would be. I told her that Dale and I lived on the mainland, and we wanted to be sure that we would have time to attend to our responsibilities in Washington while also ensuring that we could spend quality time with the family. She told me, point blank, that it was likely weeks but they’ve seen instances where patients can live for months before the inevitable. And it IS inevitable, she stressed, and chances for recovery on any scale were slim. I thanked the doctor for her frank assessment, and continued under the maxim that, “the end is near.” Apparently, Dale and I were the only ones who received this memo and took the doctors at their word.
45:54 “Well, these doctors have only known your dad for a few days. His primary doctor knows how well he can recover, just like he did 5 years ago.” This is a common response we received when talking to my family. The doctors don’t know, the nurses don’t know, I don’t know, WE don’t know. Anytime a doctor visited the room and asked if we had questions, Dale and I would ask questions. Can you please explain this to us in greater detail? Can you describe the process of transitioning? Can you talk about chances of recovery from this type of heart disease? Can you elaborate on what this medicine does, and why it isn’t a long-term solution? The only time that my family felt “good” about one of these check-ins is when the priest paid a visit. “I guess it’s in God’s hands now.” God wasn’t helping us get our affairs in order.
46:47 Reluctantly, my family decided to talk about DNRs – do not resuscitate – life support and feeding tube options in the event that my dad had a major cardiac event. He looked like he wanted to be anywhere but there. I insisted that we need to have this conversation to know his wishes. Anytime we asked him a question about whether he wanted to be buried or cremated, resuscitated or not, fed through a tube or not, do everything we can to keep him alive or let him transition naturally, he shrugged. The only thing he mentioned that he did want to do is make sure that wherever he was, he and mom were together. This could have been a burial plot, or it could be cremation. The true answer was vague, but my mom insisted on making sure that she was cremated. We took it as an official answer, and suggested that he be cremated so he can be at home. When he was in the hospital, all he wanted to do was leave and be at home. We figured this was one long-term solution we all could live with.
47:53 When we were in the hospital, a social worker asked us to fill out a DNR form. Mere checkboxes on this paper form represented mountains we needed to climb. Do not resuscitated. Check. No feeding tube. Check. No CPR. Check. Done, done, and done. My mom, as the primary caregiver, signed the formed. We wrapped up the two hour conversation because my dad was tired and needed to lie down. At least some of our affairs were now in order.
[MUSIC: Slow, Slow Sky by Blue Dot Sessions]
48:41 This all happened on July 5th. At 4am on July 6th, we received that call Dale mentioned. My mom rushed my dad to Queen’s Medical Center in Honolulu. She woke up in the middle of the night and saw my dad attempting to get to the bathroom. He pulled out his PICC line. This was the single thing the doctor’s mentioned NEVER to do. Do NOT pull the PICC line out as it could lead to further infection or induced stress. Further infection was bad, as my dad had also contracted MRSA, a particularly nasty staph bacteria that required us to have protective wear in the hospital and use gloves and/or frequent handwashing while at home. It’s particularly stressful when also dealing with a two year old at home who gets into everything. We hopped out of bed and were at the hospital within 30 minutes. When we arrived, my dad was in the emergency room and wanting to do everything he could to leave and return home. They didn’t bring anything with them but my mom’s purse. My dad’s shorts were stained with blood and urine. I suggested that Dale and I head out to the nearest store that was open this early, Walmart, to pick up some extra clothes under the impression that my dad would be released that day. My mom agreed. Before we left, I asked what happened – did the PICC line come out by accident after being caught on his chair or something? OR…did he pull it out himself? My mom didn’t know. My dad shrugged. As we left, my mom pulled us aside and told me and Dale that my dad was particularly angry with the conversation. He told her that he felt like we were all just waiting until he died and that nobody cared if he lived. She was angry with him, with us. Then she tried to give us 40 bucks to pay for his shorts.
50:36 We never truly found out if my dad pulled his PICC line out himself. It was quite long, looping into itself as it laid on the medical tray in the emergency room. I couldn’t help but pick it up and try to identify how it could out accidentally. Dale reminded me that the very same PICC line was in my dad all but three hours ago. I went and washed my hands. A new line was installed and my dad was released from the emergency room a few hours after he arrived.
51:05 When we returned home, I told my mom that tensions are super high and it might be best if Dale and I returned to Washington so we could once again check-in with our work, make sure the apartment is in good condition, and so on. My parents both agreed that we needed to head back at some point, if only to make sure that had enough vacation and sick time. I reminded her that Dale and I could be placed on FMLA, Family Medical Leave, for the time being but that it would also require us to use up our vacation and sick days. We bought one-way tickets back to Seattle that day for July 10th.
[MUSIC: Collapsing Slow-Mo by Podington Bear]
51:52 On the day that we left Hawaii, we said goodbye to my dad. He was in bed, couldn’t move, but seemed aware of what was going on. He motioned for us to hug him as we said our goodbyes. First Dale, then me. I told him that we would be back soon. He nodded. I told him I loved him. He told me, “Love you, too.” I kissed him on his forehead. He went back to sleep, Beatles album on in the background.
[MUSIC: Alustrat by Blue Dot Sessions]
52:34 As I mentioned earlier, my name is Perry, and on July 11th, 2018, my dad died. This episode discussed the lead up to that fateful day, essentially starting on my birthday until the day before my dad’s death.
I just want to thank you for listening, and a huge thanks to Dale for letting me record her for a couple hours on a weekend morning and making her cry.
In the next episode, Dale and I will talk about what happened that day, including how we returned to Washington for 2 hours until a single phone call at 1:30am changed our lives forever. Next time, on Make.