← Before We Go
Before We Go
You Think You Have Time
00:49:28
Steven enters hospice and begins to prepare for the end of life.
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- [00:03]
Shoshana Ungerleiter
Once my father made the decision to go on hospice care, a lot of things changed for the better.
- [00:13]
Ed
I remember the last days with him as by far the happiest days I'd seen him since he was sick.
- [00:21]
Shoshana Ungerleiter
He was still eating and drinking and joking around and asking for ice cream and making song requests.
- [00:29]
Ed
He'd lay down to take a nap and ask me to play him music while he was going to sleep.
- [00:34]
Shoshana Ungerleiter
On the piano or the guitar.
- [00:35]
Ed
On the piano or the guitar. And I'd sit next to him and I'd play him songs. And he was like a little kid because I'd play like, you know, three songs, and he'd like, love it. And he'd say something and then he'd like, go to sleep and I'd, like, get up to move away. And he'd be like, oh, that one was so good. How about Smelton John? I'm like, okay. And I'd just be trapped there for like two hours playing music for him.
- [00:57]
Shoshana Ungerleiter
Some of his college friends came to visit. They'd been friends for, I guess, 50 something years.
- [01:05]
Ed
And he rallied and was with them and they were all so happy. It was kind of the things we'd hoped would have happened earlier, but that they happened at all. I'm so grateful that he was able to have those.
- [01:23]
Shoshana Ungerleiter
My sister Ariel, saw the change in him, too.
- [01:25]
Ariel
He was in great spirits. He had energy. He was cracking jokes, telling old timey stories.
- [01:33]
Shoshana Ungerleiter
During the last days of our dad's life, Ariel got to spend more time with him.
- [01:37]
Ariel
We would FaceTime where we would call people on speakerphone and he just would have really sweet conversations with people, and that was great.
- [01:47]
Shoshana Ungerleiter
We asked friends and family to send video messages. Hi, Steve, it's Tori Hirschfeld from Martha's Vineyard. I just wanted. This is our dear friend Tori. I wish I could come through the phone and give you the biggest hug and spend some time with you in person, but just know that I'm thinking about you.
- [02:07]
Ariel
I'm sending you love. And so we'd watch these videos from friends and family, and he would laugh and he'd sometimes cry, you know, because I think he was. He knew he wasn't gonna see them again. He didn't want to admit it, but he knew.
- [02:29]
Shoshana Ungerleiter
I think he got to say goodbye to the people that were important to him. And then it was time to go.
- [02:37]
Ariel
Occasionally in the, like, two weeks before his death, he would be napping and I would be sitting with him while he was resting on the couch or in his hospital bed and his bedroom and he would say things like, they're all here. I see the pictures. Are you getting on the train? I'm like, dad, where are you? And he would say, oh, I'm at the station. Which station? I'm at the train station. Like, oh, great, where are you headed? And he'd be like, look at all those pictures. I see all those faces. Gosh, I recognize them, but your face isn't there.
- [03:22]
Shoshana Ungerleiter
So that happened to me, but it was like the day before he died. And it's actually really common for people, like when they're closer to death, to have visions of dead relatives, of other things that are mystical, that other people can't see or hear. It's a pretty interesting but, but well documented phenomenon for, for people.
- [03:45]
Ariel
I think I just assumed he was getting more comfortable with the idea of dying, that it was him arriving at some sort of emotional destination, getting closer to the end. It kind of gave me comfort. It definitely didn't worry me or scare me. I. I think he was very peaceful in sharing those experiences and it made him happy.
- [04:13]
Shoshana Ungerleiter
But in my father's last days, things moved very, very quickly.
- [04:19]
Ed
Your dad was always a big napper, so he was napping through the whole course. He'd either be asleep or awake. And when he was awake, he was right there with you. It was wonderful. But those windows kept getting shorter and shorter.
- [04:31]
Shoshana Ungerleiter
His doctor had gone on vacation that week thinking that he had much more time. And his hospice nurse told me, you know, he'll be here for a few more weeks. So everybody was pretty surprised.
- [04:42]
Ariel
Just the day prior, I was visiting with him and the next day, you know, it was. He didn't really come to again.
- [04:50]
Shoshana Ungerleiter
We were obviously prepared for the end, but not prepared that day. I'm Dr. Shoshana Ungerleiter and this is Before We Go episode eight. You think you have time. This episode is brought to you by Amazon. The holidays are here and you know what that means. It's time to get your friends and family the gifts they deserve. Take the stress out of shopping with Amazon's great deals and low prices on a huge range of items from toys to tech and much more. Whoever you're gifting for Amazon has great prices on everything you need this holiday season. Shop Amazon for all your gifting needs.
- [05:37]
Ariel
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- [06:13]
Shoshana Ungerleiter
In those final months of my dad's life, there was so much to do. But my family was better prepared than most because we'd talked through end of life issues so many times before. So my dad had actually written out his advance directive and his wishes around end of life years before. This was like a conversation that we had had probably four or five different times before he got sick. We revisited everything when it was much more pertinent. You know, it was right there in front of us.
- [06:49]
Ariel
You know, he talked a lot about maybe being buried in New York where his family of origin was buried, but then ultimately decided he didn't want to be buried there. He was just like, I want to be somewhere where you'll come visit me. I want people to come see me.
- [07:04]
Shoshana Ungerleiter
So we sat down and we shopped cemeteries, looked at pictures online and figured out where the best place was that had a Jewish cemetery. We opted for a place within about an hour, an hour's drive, that had green burial practices that were sort of environmentally sustainable, which was important to him. But there was something else that we could have done to prepare for what was to come. And I really wish that we'd done it. So right after my dad was diagnosed, I was sitting outside in the sun and his partner Joanna walked up and sat down next to me and asked me a question that I that was seemed off the wall at the time. And you know, she said, so is it time to call a death doula? On the one hand, I was proud because I knew Joanna had learned about death doulas through endwell. A death doula is someone that provides non medical support to someone who's dying and their loved ones like a birth doula, they can spend time talking about legacy and what you leave behind, if that's what you want. And as someone is in the dying process, they sit vigil and can help family members and other loved ones to know kind of what comes next. But when Joanna suggested it, my dad was still so alive, it didn't feel like the right time. And by the time we thought about it again, it was too late. Maybe her upstream thinking about all that, you know, was right. I think a death doula, spending time with our family, walking the journey with us and explaining kind of what's normal and how to really get prepared for active dying would have Been so helpful for everybody. We just didn't think about it at the time. We did have help from hospice, but as I've mentioned before, hospice does not provide 247 care. And a whole lot of really complicated work is left to families and other loved ones. So the hospice agency that we worked with sent their nurse, and she came out and provided my dad's partner, Joanna, with a kit of medicines and showed her and the family how to use them. And they said, we'll be back in a few days and call us if you need us.
- [09:48]
Ariel
I felt like this was so not my area of expertise. I mean, I'd never been around someone who was in this state, so I don't think that hospice really prepared us well for getting him around the house, to helping him get up and down, to on a walker in a wheelchair, helping him go to the bathroom. And I think we probably relied on you way too much.
- [10:15]
Shoshana Ungerleiter
But while I've witnessed hundreds of deaths in a hospital setting, taking care of my own father in his home was so much more difficult than I thought it would be. We called that nurse advice line many times. Even I did. And I am an expert. The experience is really, really hard, and no one is prepared for the stuff that comes up. It was a lot. And so we took help from wherever we could find it. Soon after starting cancer treatment, my dad, who wasn't religious, surprised all of us by asking to speak to a rabbi. I happened to know someone who lived nearby. He was the rabbi, Rabbi Steve, who married my husband and I a few years before. You heard from Rabbi Steve Finley very, very briefly in episode one, you may kiss the bride. As it turns out, we share a wedding anniversary.
- [11:15]
Rabbi Steve
I told my wife, Yaffa, hey, I got a great way to celebrate our anniversary. Let's go down to San Francisco, and I'll officiate.
- [11:22]
Shoshana Ungerleiter
And Rabbi Steve and Yaffa stayed for the reception and my dad's toast.
- [11:27]
Steve Einstein
I don't have to brag, but if you don't mind, I will.
- [11:31]
Rabbi Steve
I remember meeting your dad, and I just remember him being full of joy.
- [11:36]
Steve Einstein
I think Shoshana Ungerleiter is the first and maybe only baby who came out with a book or perhaps a baby kindle in her arms.
- [11:47]
Rabbi Steve
A very important guy full of. And I say this with the most respect, right? That he was full of joy, full of laughter, and a little bit full of self, right? Because you know what? He earned it. You know, he's very successful, and he had beautiful daughters and a beautiful family, and it just seemed like he was the Top of his game.
- [12:13]
Shoshana Ungerleiter
When Rabbi Steve got my call looking for someone who would come talk with my dad. He says it was pretty clear that my dad did not have a rabbi of his own.
- [12:22]
Rabbi Steve
So I figured that he's not religious, and it's not uncommon, I'll be quite honest, Shoshana, for me to step into such a life cycle event as death and dying with someone who's not religious. You know, we have human instincts that we really can't explain, and sometimes we just have a need.
- [12:44]
Shoshana Ungerleiter
And so Rabbi Steve made the drive from Sonoma, where his congregation is, to Healdsburg, which is about an hour away.
- [12:51]
Rabbi Steve
I do remember preparing myself for what I might see, because Steve, father of the bride that I met, we were both kind of overweight at the time, but you know, what we call Father fat. You know, we just, you know, you gain some weight, right? So he lost all of that. And that was my first. Wow. So this guy really is ill.
- [13:16]
Shoshana Ungerleiter
But the change to my dad wasn't just physical.
- [13:19]
Rabbi Steve
No longer beaming, beaming with joy. Now he was concerned, had a sadness about him because he was saying goodbye to the family that he loves so well. He was truly looking forward to many more years and building many more happy memories and seeing his daughters and sons in laws get older and of course, as their kids get older. So he was sad to be having to check out so early.
- [13:57]
Shoshana Ungerleiter
Rabbi Steve met with my dad many times over the last months of his life.
- [14:01]
Rabbi Steve
I think the first time I walked in, he had still another eight months of life. No one knew at the time, right. There was a lot of hope, praying for a miracle, and I'm all about that. And then the last time I walked in, I believe it was the day or two before he actually passed away.
- [14:19]
Shoshana Ungerleiter
Rabbi Steve says that sometimes when he visits people facing the end of life, they just want to have a normal conversation, talk about football or the weather. But that wasn't the case for my dad.
- [14:30]
Rabbi Steve
I do remember him just wanting to talk serious talk.
- [14:34]
Shoshana Ungerleiter
And so Rabbi Steve and my dad talked about religion and spirituality and what might happen to us when we die.
- [14:41]
Rabbi Steve
I remember, you know, not vividly, but as is my habit is just to open that door a little bit to see if that's something that in this case, your dad would want to talk about. But I always follow that with, when you hear that word, God, what does that mean to you? Right? Is God the creator? Does God intervene in our lives? Does prayer work? And if so, how does prayer work? You know, I just remember him keeping that window of possibility that, you know, God does exist. And you know, I tend to talk about what happens after we die is returning back home to God. And I choose to think that it's a very good, positive place.
- [15:30]
Shoshana Ungerleiter
So my dad's final day with us. Walk us through it.
- [15:35]
Ed
We talked to your dad the night before. We had dinner. There was like several of us, I think it was you, Joanna. And we had a great time and he was joking and you know, later that night he was getting a little more confused and was getting a little like scared. And I remember it being a hard night. And by that morning when we came back over there he, he was asleep, but he was not peacefully sleeping. At least I wouldn't describe it that way. We were trying to move him in the bed to like help him get comfortable. He was so skinny.
- [16:09]
Shoshana Ungerleiter
He was doing this very labored, rattly breathing thing that freaked everybody out.
- [16:17]
Ed
I was really not prepared for how loud it was going to be and how, from my experience, how uncomfortable it would seem.
- [16:27]
Shoshana Ungerleiter
This is when Ed googled death rattle and came across those videos by our friend hospice nurse Julie. The death rattle is the most normal thing and to be expected at the end of life.
- [16:37]
Ariel
However, if you're not used to hearing it, it can feel like the scariest.
- [16:41]
Shoshana Ungerleiter
Thing you've ever heard. It doesn't mean the person is in distress. It's very distressing to everybody else. But I had questions the Internet couldn't answer. There were times when I couldn't quite tell how he was doing because I couldn't ask him. I was very used to taking care of people in a hospital setting where you can evaluate them differently. You have more data typically, whereas at home you're kind of making assumptions and that's sometimes harder. And I was reading the instructions that the hospice nurse had given us about how often to administer the medication and it just seemed like he needed more, like more often. And obviously being a doctor, I know how to evaluate, you know, people's responses to medication and I kind of was second guessing myself. Julie to the rescue again. I think I maybe a text message her or maybe it was an Instagram dm, which seems crazy that I'm saying that, but Julie asked a couple of questions about how my dad was doing or at least my interpretation of how he was doing. I shared that he looked uncomfortable and I wanted to give him more medicine. And she said, yeah, absolutely, you know what you're doing and if your dad needs a little more medicine, like that's absolutely okay. He's on hospice. That was just really Validating, it's what, you know, the medical advice I would have given. I just needed someone to tell me that was okay. We'd all taken turns kind of sitting with him. He had a hospital bed in his bedroom.
- [18:28]
Ed
I just went in and put the piano over next to him and talked to him and told him that I loved him and just played.
- [18:49]
Shoshana Ungerleiter
Ed took his phone out of his pocket and recorded the last song that he'd play at my father's bedside.
- [18:59]
Ed
I just kind of like improvised peaceful music that I would hope if he heard it, would help him feel calm.
- [19:08]
Shoshana Ungerleiter
And at what point did you decide to record it?
- [19:11]
Ed
Oh, immediately. It was instantly like, this is a special moment and you should try to keep it so that you can share it with the family later. Like, I was thinking about you and Joanna and your sister.
- [19:31]
Shoshana Ungerleiter
And. Have you ever listened to it back?
- [19:34]
Ed
I've listened to it briefly and I do not like listening to it. I was. I was pretty upset by your dad's, like, last several hours. And I don't really want to listen to it again. So I don't.
- [19:59]
Shoshana Ungerleiter
I don't. I don't know how much he was suffering in the very end. I like to think that everything we were doing to help comfort him with medication and other support was helpful. But because you can't talk, I mean, I couldn't talk to him. I didn't know. I don't know. And that's really hard. In his last hour, I sat with him by myself and just said, I love you and it's okay to go. I just kind of said those things over and over and had his hand in mine. And then around 8:00 at night, it was dark out. It was a rainy night. His breathing shifted and it started slowing down. And I thought maybe I was just tired and was wrong. But after a few minutes, I called my husband and Joanna into the room. They'd gone to eat some dinner.
- [21:21]
Ed
The two of us ran upstairs together. And I remember him kind of faintly moaning. And Joanna got right up next to his face and told him how much he's loved. And Joanna's right there with him and is rubbing his eyebrows and is kissing his face and telling him how much he's loved. And she has one of his hands. You have his other hand. And I got his foot. And I remember holding his foot and just telling him that we loved him.
- [21:55]
Shoshana Ungerleiter
Yeah. My sister had gone home, so we called her on the phone and put her on speaker so she could say goodbye.
- [22:05]
Ariel
I don't remember exactly what I said But I remember just feeling a huge sense of relief for him that this ordeal was over. He didn't have to be in pain anymore, that he could kind of just pass peacefully. That I wanted him to know he was really loved.
- [22:30]
Shoshana Ungerleiter
I, being a doctor, grabbed, you know, his wrist and was checking his pulse, and it turned slow and then thready at first and then just went away.
- [22:49]
Ed
On tv, they really make it seem like there's this, like, really clear line between alive and dead. And I remember just being struck by how he. How he left over the course of, I don't know, 10, 15 minutes. I mean, it was like, I don't know when he left, when I got there, when you called us in, I felt like he was still there. And 15 minutes later, he was totally gone.
- [23:21]
Shoshana Ungerleiter
And then it just got really quiet in the room, which was, after all that, what sounded like labored breathing. It was really nice to have it quiet and peaceful.
- [23:32]
Ed
There was such a feeling of love for him. And given how hard the last day had been for him and how hard the last months had been for him, it was beautiful and sad and calm.
- [23:59]
Shoshana Ungerleiter
You're listening to before we go. I'm Dr. Shoshana Ungerleiter. We'll be right back.
- [24:07]
Ed
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- [24:50]
Shoshana Ungerleiter
Maybe it was the rain or maybe it was change of shift. But after we called hospice, it took a couple of hours for someone to show up.
- [24:59]
Ed
So we sat with your dad for a long time. Yeah, and laughed and cried, but I think mostly laughed, told stories and just sat with him. And the hospice nurse showed up. And his name was Steve.
- [25:22]
Shoshana Ungerleiter
Yep. In case you've been counting Steve's. This is our fourth and final Steve. He just happened to be the nurse on call that evening. And he was also Jewish.
- [25:32]
Ed
Steve walks in and, you know, it must have been. He'd been there for five minutes or something. And he said, well, I don't want to be presumptuous, but I couldn't help but notice that there was a mezuzah on the front door. Would anyone, by chance, happen to be Jewish here? I'm like, you're in the right place, Steve. It's not a random mezuzah on the front door with Shoshana and Arielle. And he said, oh, I, Steve Einstein, am also Jewish, and I am very well versed in the rituals around the end of someone's life. And if you would like to do those, we can do those.
- [26:12]
Shoshana Ungerleiter
It was almost like he was a hospice nurse rabbi.
- [26:15]
Ed
He was a hospice nurse rabbi. I mean, maybe not intentionally, but he definitely was.
- [26:22]
Steve Einstein
I kind of think of myself as a secular Hebrew Kaddisha.
- [26:26]
Shoshana Ungerleiter
That's our hospice nurse, Steve Einstein. We only met him that one time, but we tracked him down for this podcast.
- [26:32]
Steve Einstein
The Chevra Kaddish is the Jewish ritual burial society that comes to do the washing of the body and to follow certain, you know, traditions and rituals as.
- [26:44]
Shoshana Ungerleiter
Have been practiced for years after my dad died. And I know you didn't know us well, so it's okay if you don't remember, but we called hospice, and you were the one on call, and you were sent over to help us with the next steps. What do you remember of that visit or anything about our family?
- [27:01]
Steve Einstein
I remember what a beautiful house your dad lived in.
- [27:05]
Shoshana Ungerleiter
Yeah.
- [27:06]
Steve Einstein
Holy Tomoli. What a house. The other thing that I remember was the very warm vibe that I got in the house. It felt cohesive, and it felt warm. It felt, of course, very respectful. Also, some people are very matter of fact, and some people are kind of, well, what. What do I sign here? And what do I do? And. And I got a different kind of deeper vibe.
- [27:33]
Shoshana Ungerleiter
I couldn't imagine a better person to have shown up in that moment.
- [27:37]
Steve Einstein
When I have a Jewish patient who's died, I'll offer to say Kaddish if they want.
- [27:44]
Shoshana Ungerleiter
You did that with us.
- [27:45]
Ed
He knew the prayers. He knew the ritual washing of the body, the. I mean, and he led us through all of it, which was really beautiful.
- [27:56]
Shoshana Ungerleiter
I tried to tell Steve how much the bathing ritual had meant to us as a Jewish family, but he said it's something he offers to everyone, regardless of religion.
- [28:05]
Steve Einstein
Well, I'll always offer a bath. Probably in half the instances they say no. She got a bath this morning. I think she's fine. Or I think it'd be better if we didn't move her body around, leave things as they are. And others that are reluctant to take part in the bathing but want you to do it. And others for whom I can just stand by and feed the washcloths. And the towels and let them do it because they find it meaningful or when whole families take part in it. You know, another important thing is to give people some tasks at that time because they want to be helpful.
- [28:43]
Shoshana Ungerleiter
Steve did that for us, too.
- [28:46]
Ed
This is one of the things I learned about hospice nurses is just like, you're a surgeon. I mean, this is another day at the office for them. I know what to do here. Like, oh, let me drive. Here's what we're going to do. Like, here's the people we need to call. We need the people to come and pick him up. You go get some clothes for him that he would like to wear you. And it was really nice to feel like there was someone in the driver's seat.
- [29:10]
Shoshana Ungerleiter
Steve helped us gather my father's medications and dispose of them, and he encouraged us to find my dad's favorite Olympic jacket and dress him in it. Steve knew exactly what to do, as well he should. He's been a hospice nurse for 30 years.
- [29:26]
Steve Einstein
I'm one of those people that got a new career in the middle of life. I lived in Israel for many years, and when I came back here, I had to figure out what to do. And nursing ended up being a good calling, maybe in part because that's what my mom did.
- [29:42]
Shoshana Ungerleiter
His mom also played a part in his decision to work with hospice.
- [29:45]
Steve Einstein
My mom, she was a very early hospice patient in the early 80s. Her cancer came to a point where it couldn't be treated anymore. And she was one of the first hospice patients for Steve's mom.
- [29:59]
Shoshana Ungerleiter
And for a lot of hospice patients, a lot of care is provided by the family in the home.
- [30:05]
Steve Einstein
I came to be with her. My brother and sister came around as well to care for her. And it was a very, very meaningful six months that we cared for her until her death.
- [30:16]
Shoshana Ungerleiter
And so when Steve was helping my family say goodbye to my dad, he was repeating something that he'd experienced himself many decades ago.
- [30:25]
Steve Einstein
I remember when my mom died, and she was, you know, she was carried out in a gurney, and then the gurney kind of clanged as it was shoved in the back of the van like they used. And then I saw her drive away, and it was the last time I saw my mom. So that very final thing, it's very touching for me to be on the porch of somebody's house with a family as they watch the van go off and they see mom leave for the last time.
- [31:03]
Shoshana Ungerleiter
There was so much that my family appreciated about Steve and the care that he showed us that night. And we especially Loved his more personalized touches.
- [31:13]
Ed
He said, if you were open to it, I have something I'd like to do with your permission. And I don't think we knew what it was at the time, but he was driving and was. Clearly knew what to do. So we said, okay. And he said, can you name off people that loved him?
- [31:33]
Steve Einstein
I like to kind of take a tally of all the important people in somebody's life. You know, how many grandkids were there, how many kids, how many brothers and sisters? You know, I was. And then I come to a number with them.
- [31:47]
Ed
He's like, there's you three. And we said, oh, Ariel's husband, the grandchildren, you know, his sister, his brother, you know, we named off several people. And he's writing them all down. He says, okay, like, all right, 14. 14 people. These were, like, the closest people that loved him.
- [32:03]
Steve Einstein
And then I like going outside and picking that number of flowers for somebody and lying those flowers on the patient's body, because often all those people aren't present, and yet they're very much present. So I want some kind of symbolic representation of all these other key people in somebody's life.
- [32:25]
Ed
And he went outside, and I was like, steve, it's raining. Are you sure you want to go out there? And he went out in the rain, and it was March, so the flowers had just started blooming. And he came back in with this beautiful bouquet. And he took those flowers, had your dad's hand up on his chest, and tucked the flowers in there. We had him in his Olympic shirt that he loved. And it was so. Oh, it was just so wonderful. It was so nice to feel like there was a bit of us going with him and to see your dad so peaceful.
- [33:04]
Shoshana Ungerleiter
I just remember it being such a beautiful experience of closure. And he was just the funniest, most interesting, perfect guy, like, to come to the house when he did. I think you had a conversation with him afterwards. Do you remember? What did he say?
- [33:22]
Ed
So it's very late at this point. I mean, it's probably like one in the morning. And we tell him, hey, we've got food from New York. We've got great sandwiches. You want a sandwich, Steve? And Steve says, yeah, I'd love a sandwich. And we go in the other room and we're hanging out and talking, and I tell people how I'm feeling. And I said, steve, I have to tell you, this flower's tribute, this ritual, this was really meaningful for me, and I want you to know how grateful I am for this, because this has been A hell of a day. But what you did is something I'm going to remember forever. And I'm just so grateful to you for bringing that to us, and thank you. And he's taking a bite of his sandwich, and he laughs, and he said, oh, I'm so glad to hear that, because not every family gets it. Just yesterday, I was in Santa Rosa. I tried to do this with the family. I went outside, I got the flowers. I brought them in. They look at it and say, flowers. He doesn't care about flowers. And they threw him on the floor and said, send him away with this raider's blanket.
- [34:29]
Shoshana Ungerleiter
Oh, geez, I remember that.
- [34:31]
Ed
That was so good.
- [34:35]
Shoshana Ungerleiter
You made such a big difference for us. It was such a wonderful, serendipitous fit, given your background and the way you approached our family with so much care and sensitivity around my father's death. I just. We're just really grateful.
- [34:52]
Steve Einstein
Well, I'm appreciative of that. But you should know that I was at the death last night of a guy who died alone and had nobody. And I hope I afforded him the same respect and dignity and honor, you know, and staying with him a little while. People die in all kinds of different ways, and we. We need to be equally respectful.
- [35:27]
Ed
I can see clearly now the rain is gone.
- [35:34]
Shoshana Ungerleiter
At my father's funeral, Ed played I Can See Clearly Now. It was a song that was really meaningful to him and my dad. Do you remember the musical guest that dad had requested?
- [35:45]
Ariel
Did he want, like, Lionel Richie?
- [35:48]
Shoshana Ungerleiter
Mm.
- [35:49]
Ed
I was not aware of this at the time, because I would have played Lionel Richie.
- [35:53]
Shoshana Ungerleiter
No, no, no, no. He wanted Lionel Richie.
- [35:57]
Ed
Of course he did.
- [36:01]
Shoshana Ungerleiter
And unfortunately, sorry, dad, we didn't. We didn't make that happen. We made a playlist.
- [36:07]
Ariel
I think it was perfect, and I think he would have loved it. And we also had fun party favors that we gave out to everybody, which was his collection of trinkets and Olympic pins and things. And I think people loved having a parting gift to take home with them to remember him by.
- [36:33]
Shoshana Ungerleiter
But some of the days since my father's death have been harder than others. About a year after my dad died, his partner Joanna, pulled me aside and said, I have to talk to you about your dad's final day. She said, I feel so guilty that somehow the medications that we were giving him through hospice, like, made him die. This is actually super common. So many people have a lot of guilt, but in reality, when someone's on hospice, they are dying. The underlying illness is what is killing them. And the medication that we provide is about supporting them and making them more comfortable. That is the entire goal of hospice, is comfort. Sometimes the side effects of those medicines can hasten death, but they're dying of what they're dying of. I was the one that gave my dad what would be the final dose of medication, and I even had the same thought of, oh, my gosh, did I just end his life? Of course not. But that's how natural and human it is to ask those questions. And I explained all that to Joanna, and I don't know if she fully understood it or if that took away some of that guilt. I think it's just really hard. I just think there needs to be more conversation about what those final days and hours and moments look like, really to prepare people. And giving someone extra morphine, for example, if they're short of breath, is absolutely the right thing to do, even if it's their final breath. Looking back on everything that we went through with my dad, do you have any regrets or things that you wish we would have or could have happened?
- [39:08]
Ed
No, I have no regrets at all. I very intentionally woke up every day and committed myself to doing the best I could. And I would go on walks, and I would meditate, and I talked to my therapist, and I talked to my friends, and I tried really hard to.
- [39:29]
Shoshana Ungerleiter
Be present, to be present for my dad. Yeah, I tell him this all the time, but I am forever grateful to Ed for everything that he did to really show up for my whole family during this period of time. I mean, he was close with my dad. Yes, but he went so far above and beyond what a partner or spouse typically does in this instance. And it wasn't like I asked him to. This came from him. He just rose to the occasion and leaned into it so hard. And I think it was meaningful for him, too. Made him ask some of the hard questions about, you know, if time is short, how do I want to be spending my time? It's comforting to hear Ed say that he doesn't have any regrets, but I do. And so does my sister Arielle. She's still frustrated that my dad chose treatment at a local hospital instead of going to see one of the specialists who was further away.
- [40:35]
Ariel
I wish I would have been more forceful with him about going somewhere where he could get the best care possible and making sure that nothing stood in his way of doing that. And I don't think we. He was committed to that.
- [40:53]
Shoshana Ungerleiter
And this is one of the many things that Ariel and I disagree on. Hindsight is, of course, 20, 20 so knowing what we know now, I wish that he would have gone straight to hospice because the medications didn't work and we prolonged his suffering. I also think we should have had a more in depth discussion about medical aid in dying. I think he was a perfect candidate for that. Going out on his own terms would have been so much better for everybody. He withered away in such a way that was so painful for him and for all of us that if we could have just had a big party like celebrating his life and gotten Lionel Richie to play a concert or gone on vacation with the whole family when he was still able to move around and enjoy himself and swim in the ocean, I just think that would have been such a better send off. But we didn't know. And I have to believe that we did the right thing at the time with the information that we had. Looking back, even though my father's death didn't unfold exactly as we'd planned or imagined, there was beauty in those imperfect moments. Spending that time with him, witnessing his final days surrounded by love and music, taught me so much about offering myself grace and allowing things to be as they are. This journey has deepened my commitment to helping everyone experience a dignified end. One filled with warmth and love and the quiet beauty of presence. And in those spaces, I've come to realize it's okay for it to be messy, for us to be flawed. We're all just doing the best we can on this journey. And sometimes that's enough. I am forever grateful that I got to spend so much time with him. I mean, it was really, really hard, much harder than I could have imagined. But I have no regrets about spending those, you know, eight months seeing him almost every day and helping to take care of him. It made saying goodbye much easier in a way.
- [43:32]
Ariel
Now, knowing what he went through and how we came together as a family to support him, I'm grateful for kind of that, the love and sincerity of a lot of those moments that I think you just don't really get to experience when you're just kind of in the rat race, right? Like you're. You don't really pause to acknowledge every single second. And I think when you know that there's this, you know, terminal diagnosis, you really start to slowly capture every single one of those moments.
- [44:07]
Ed
Moments.
- [44:25]
Shoshana Ungerleiter
I just want to say in closing, you know, we're all terminal, right? Like regardless of whether we have a diagnosis or not. And so, so much of what I'm always trying to do with endwell and think about is that fact right is how can we live in the present moment? How can we operate day to day knowing that time is limited? And what does that mean for however long we have left?
- [44:55]
Ariel
Well, that is beautifully morbid.
- [44:59]
Shoshana Ungerleiter
Thank you.
- [45:01]
Ariel
You're welcome.
- [45:11]
Shoshana Ungerleiter
Before We Go is a production of Podcast Nation and Me. Our production team includes Karen Given, Abby Williams, and Madison Britt. Our story editor is Lacy Roberts. Original music by Edward Aten. I'm Dr. Shoshana Ungerleiter. If you like what you've heard, please tell a friend. You can also leave us a review on your favorite podcast app. It helps people who need us find the show. And if you'd like to see photos and videos and connect with other Before We Go listeners, visit us on Instagram at Before We Go Podcast.