005: When a Parent Tells You to Let Them Go: A Daughter’s Journey – Nancy Noever

Marty Stevens-Heebner: (00:00)
Have you ever considered what it would be like to carry out a loved one's wishes at the end of their lives? What if they don't want extreme measures taken to save them and would rather that you let them go? How do you face this kind of situation? My guest for this episode of, How to Move Your Mom will share her own experience with us

Marty Stevens-Heebner: (00:26)
Moving your mom or your dad or yourself isn't just about moving things from one place to another. It is much more complicated than that. As are so many things having to do with later life. How to Move Your Mom and still be on speaking terms afterward provides in-depth conversations with professionals, older adults, and their family members who shared their stories with warmth, understanding and humor. I'm your host, Marty Stevens-Heebner and here you'll find answers to many of your questions, as well as different perspectives that I hope will inform and inspire you. Welcome, Nancy, to our podcast. I'm so glad you're here.

Nancy Noever: (01:08)
I'm so glad to be here. Thank you. I'm really honored for you to have me on as a guest.

Marty Stevens-Heebner: (01:13)
I'm honored that you're my friend and shared the journey you've been on for the last year and a half.

Nancy Noever: (01:21)
It's been a crazy one. And I want to thank you, being a friend and helping me and supporting in that because I don't know where I would be without the support of you and several others.

Marty Stevens-Heebner: (01:31)
Yeah. Our Saturday group, the six of us. Really wonderful. So let me first tell you about Nancy, a little bit. Until recently Nancy was a Los Angeles based production manager and line producer in the entertainment industry. That's been her career for 25 years. Not that you'd know it to look at her, but more importantly, her mother's death, the pandemic and her desire for change a big career change, all converged in February, March of 2020. And that all set her on a completely new and unfamiliar path in a new city on the other side of the country. It's been a remarkable journey for you. And so let's go back to February, March 2020. One thing, obviously, anybody hearing this thinks, "Oh, COVID." Yes, but there was so much more going on for you.

Nancy Noever: (02:21)
My mom, all of a sudden had a stroke on February 11th, and I was in the middle of a job and my mom had had a transient ischemic attack. And it's basically a temporary stroke. And she had blacked out and had gone to the emergency room and then had called me as the Oscars were going on saying, "I love you" kind of thing.

Nancy Noever: (02:44)
And then on Tuesday, which was two days later, then my mom had a massive stroke and it was one that she lost the ability to use for right side of her body. She couldn't speak and she couldn't really move. So my brother found my mom and we figured out by what was on TV and her normal schedule that she'd probably been there a couple of hours. She wasn't able to really communicate very well because she lost use of language, but she was pretty adamant, "I'm in trouble. I know this."

Nancy Noever: (03:26)
My brother did the normal reaction 911, ambulance going there. The emergency room, they're trying to figure out whether it was a cardiac event or what it was. And then it becomes a thing of, "We need to intubate her." And my brother was like, "Okay, we need to figure out what this is." Because that's part of the problem with a stroke is you don't know how bad it is. We didn't really know what was going on. They were doing all the tests. Then we found out it was a stroke and then it was like, "I need to come out there." Because I'm like I said, the executor of all of that. And we'd been through this with my father, who'd had a stroke and my brother had had to deal with that. And my father was like, "No, I'm going to be fine. We're going to work on this."

Nancy Noever: (04:07)
Well, it was five years that he survived, but he was in full nursing care the entire time and bedridden. And because of that, my mom was just adamant. She was like, "If something like that happens to me, I'm done. Let me die." By the time I got to Huntsville I was a mess. And I didn't want to see my mom in that situation. And it was past visiting hours anyway, because she was in ICU at that point. So I went and slept at-

Marty Stevens-Heebner: (04:34)
You're in Huntsville, Alabama now?

Nancy Noever: (04:37)
Yes.

Marty Stevens-Heebner: (04:37)
As opposed to Los Angeles. Just to give people an idea of the geography.

Nancy Noever: (04:41)
And then the next Sunday morning, I went in to see her. And mom's, they were trying to take the feeding tube out or the intubation out, trying to see what state she was in. She had a couple of days that was by, that was Sunday. And as soon as she... So they put you under a tranquilizer in order to get the tube out, then they need to start slowly bringing you out. So as soon as they did, my mom took my hand and just started hammering it and just basically tapping it and giving me that "mom look." It was like, "You know what needs to be done."

Marty Stevens-Heebner: (05:27)
That must've been so hard for you.

Nancy Noever: (05:31)
Yes and no. Yes, because I realized my mom was going to die, but that had already sort of happened in one sense, because I knew the path that she was going to be, she was going to be miserable and that there wasn't much. My mom would be there, she might've survived it. Although I don't think she would have been, because she couldn't really swallow. So it would have been a feeding tube and a bunch of stuff that my mom would have hated.

Nancy Noever: (06:04)
She was also very, very practical. And at the point when the cards are stacked against you then sometimes it's time to fold your hand. And my mom had lived a very full life and there wasn't much more she wanted to do. She'd always talked about quality of life and that being much more important than quantity of life. And my mom was 82 at the time. So she'd had a very large quantity of life. But at that point then they were bathing her and they ended up to clean her face and then they unbuckled the strap. And when that happened, my mom spit the tube out on Sunday night. Because that's how much she was like, "I'm not doing this."

Marty Stevens-Heebner: (06:53)
That's quite a clear statement without words. Yeah.

Nancy Noever: (06:58)
And so the doctor were apologetic and were all really sorry. And you know, what's not the way the proper procedure of how it goes. And I'm like, well, it's pretty emphatic at what she wanted to do. And then it was a question of, okay, but she's still having a lot of problems swallowing. So we're going to put a feeding tube on her. And I was like, "No that's not what she wants. And that will not be what she wants." The three of us, I think a nurse and a couple other medical people were there and the doctor was like, "Well, she can't really swallow. So are we talking now about palliative care?" And I was like, "Yes we are." And it was a very easy decision because my mother had been very, very clear in what her wishes were.

Marty Stevens-Heebner: (07:45)
That was such a gift to you.

Nancy Noever: (07:47)
Absolutely, absolutely.

Marty Stevens-Heebner: (07:49)
Both. My parents had made it clear to me too. And it's still hard to let them go for the obvious reasons, but when they make it clear to you and you realize it's really for that's what they want and it's for their benefit.

Nancy Noever: (08:02)
Right? So after we told the doctors that, and then they're talking about moving her out of the ICU because she was no longer on intubated and into palliative care. My brother and I went down into the lobby of the hospital.

Marty Stevens-Heebner: (08:20)
That must've been a tough conversation.

Nancy Noever: (08:23)
It was, and it was because then we started doing the second guessing thing, "Are we doing this? Do you want to have one more conversation with her? Do you want to have one more, whatever?" And then we started doing the practical thing of, mom's not going to be able to do this and mom's not going to be able to do that. And it's sort of one of those things of it's accepting reality as opposed to imposing you want to happen. And my mom really died at that stroke and we don't deal very well with death in our society. Currently, we all-

Marty Stevens-Heebner: (09:09)
That's an understatement

Nancy Noever: (09:11)
And we all kind of have this because I think we're not connected to it in a way that our previous generations did where-

Marty Stevens-Heebner: (09:18)
And I think we refuse to be. Nobody wants to talk about the end or that anything's going to end, or even God forbid getting into your later years.

Nancy Noever: (09:26)
Yeah. And that's tough. And again, a lot of people who are older, I've talked to, are like, getting old is not for the faint of heart. It's the aches and pains and the things you can't do and the way people respond to you. And there's a lot of difficulty in doing that if you take the dark side of it. So my brother and I in the lobby, then we kind of went through or like, all right, let's think this through, let's look at all that my brother and I were debate partners in high school.

Nancy Noever: (10:01)
And so we kind of like let's step back for a second. Let's lay it all out like we used to do on my dad's chalk board and this is the argument. And then we would take those sides of it. And we were both kind of saying, all right, then this is kind of what we have to do. And then it becomes the logistics sets of all of that. And my brother is a scientist and he's was really great at figuring out options of treatment. He was really instrumental in doing the all right, whatever our options are. And then mine was really kind of, I'm the logistics person. So now that we've made this decision, what do we have to do? And my mom had signed a DNR-

Marty Stevens-Heebner: (10:52)
Which is that do not resuscitate order. Yeah.

Nancy Noever: (10:55)
And she had all the paperwork and had gone to the lawyers, which was all really great. And so I had all the documentation that I had all the authority to it.

Marty Stevens-Heebner: (11:03)
But let's talk about the difference between medical care and palliative care, which is mostly with regard to hospice.

Nancy Noever: (11:11)
Yeah, well, palliative care basically says you make people as comfortable as possible. So you're not going to do extraordinary measures. So in this case, extraordinary measures would be to put up my mom on a feeding tube and then start the whole series of physical therapists going through there and occupational therapists and treatment to see how much movement and swallow tasks and all of that. And at the point at which we said, no, we're going toward palliative care, then it's about making someone as comfortable as possible and seeing how the body naturally will heal or not.

Marty Stevens-Heebner: (11:47)
How it will react.

Nancy Noever: (11:49)
Yes. Because sometimes you go into palliative care and gives your body a breather and the natural healing parts come through and you are then make a different decision that it is time for other paths that was not going to happen with my mom. They're still trying to do a lot of the things that you want to have doctors do which is try and save you. But the doctor, when I was having the conversation with him was look, he basically said, "I can't kill her." And I'm like, "I'm not asking you to kill her. I'm asking you to let her be comfortable." And he was like, "Well, we don't want to speed it along." And I was kind of saying, you're not doing anything.

Nancy Noever: (12:32)
If your idea is to give her comfort and to help her, this is not helping her. This is not the decisions and the wheels are already in motion. And so let's figure out how we can get her to hospice and let's figure out how to make her comfortable and to follow her wishes. And I really had to be very, very adamant about saying that my mom, she valued her voice. She valued her ability to be able to express her opinion. And she spent hours and hours quilting, which required the use of both of her hands. She was not going to be able to do any of those things. And that's what gave her joy. So that was not, he was not doing her any favors by extending this period out.

Marty Stevens-Heebner: (13:26)
That's social and people don't realize with hospice that it doesn't mean that you're going to die. It's just, you have a condition that may eventually lead to your passing, but people recover in hospice and go off hospice. So it's really about making you comfortable and still taking care of you, but just not going to extraordinary measures, right? Like a feeding tube, intubation that sort of thing.

Nancy Noever: (13:56)
Right. And it's about also preparing you for what the next stages will be.

Marty Stevens-Heebner: (14:02)
Let nature take its course and as comfortable away as possible, that makes sense?

Nancy Noever: (14:08)
Yes. And that was, using just tranquilizers and things to calm my mom down as this process was happening. And it was, I was there through pretty much every shift change because there were so many nurses that took care of my mom. It was talking to them all the time about what was going on. And then the hospitals there, do you want food? Do you want? And my mom's not eating anything, I don't want anything. And so, and I don't want the smell of the food in the room. And then, somebody was coming through and played music for her. And it was a... I took one of her quilts and brought it in and put it across her. So then it was a couple of days to try and get her into hospice. We got to hospice, I think by about 3:00 or 4:00 in the afternoon.

Nancy Noever: (15:02)
And I hadn't had anything to eat because I'd been waiting on them to do the transfer. And the transfer was about somebody signing off on what the contents of my mom's purse. And once we finally got that done and the ambulance there, then we arrived, my brother arrived. We kind of hung out for a little while we were, and then I went to go grab dinner. I just pulled into the parking lot of a restaurant. And the hospice nurse called me and said that your mom had passed away. And my brother and I, before we had left, the hospice had a conversation with the nurse there saying, do we think we're 24 hours away? Do we think we're moments away? Do we think we're three or four more days away? And she was saying that usually it takes someone between seven and 10 days to die.

Marty Stevens-Heebner: (15:56)
Your mom had an, should I call it an itinerary or a list?

Nancy Noever: (16:02)
My mom was ready to get on with it. So again, and she'd also said the nurse had also said that your mother is in active dying. And that usually is I think 48 hours.

Marty Stevens-Heebner: (16:13)
On both ends of life, there's kind of a gestation period coming in and going out, which is painful and unpredictable, which is really fascinating to me because there is this process at the end of life. And again, hopefully people need to start talking about it so they're more comfort with it.

Nancy Noever: (16:33)
That's true. And that's something that nobody really talks about is what all this is. And so as soon as I heard, then I called my aunt, who is my mom's only surviving sibling. And they were very close and then talked to my brother and my brother came back up and we both sat with my mom for a few minutes, but my mom wasn't there. I mean, that's the thing is the, I didn't feel her presence there. Mom was ready to get on with it. So I stayed there for a little while. And then I went and found a quiet place in the hospice and my brother had done the same thing in a different place. And then we kind of after about half an hour or so we found each other and just kind of started talking a little bit.

Marty Stevens-Heebner: (17:21)
Let me ask you in that time by yourself, what was going through your mind and your heart?

Nancy Noever: (17:31)
It was a lot of ums there, it was welcoming. It was basically saying mom have a safe journey. And it was me telling her in my head how much I loved her and how much I was going to miss her, but how proud I was of her to have the courage to do what needed to be done and a little sadness for not having the couple of months that we had, maybe I could have prevented some of the things leading up to the stroke, which is kind of silly. Strokes are not something you can prevent, but-

Marty Stevens-Heebner: (18:21)
Also you can't see a pandemic coming necessarily, so there you go.

Nancy Noever: (18:27)
No. Well and that's the irony too, is that if the stroke had happened three weeks to a month later than the time I spent with my mom and being her advocate so she could die the way she wanted to, I would not have been able to do it.

Marty Stevens-Heebner: (18:48)
They wouldn't have let you in the hospital, that's right.

Nancy Noever: (18:52)
So they would have put a feeding tube into her. They would have done extraordinary measures to let her physically survive, but they would not have... She emotionally wouldn't have survived. And she certainly wouldn't have been in going into full-time nursing care, which is where she would need to be to do recovery. So my mother would have died miserably in that.

Marty Stevens-Heebner: (19:18)
And alone.

Nancy Noever: (19:19)
And alone, yeah.

Marty Stevens-Heebner: (19:22)
One of the things that I thought was very impressive was how well you and your brother worked together during all this.

Nancy Noever: (19:29)
My brother and I have been close since we were kids. And we were, as I said before, we were debate partners together. So we're used to working a problem together, and we've always been able to communicate on some level and know each other. And I think trust each other really well. So, as I mentioned earlier that my brother is a scientist and he was really good about investigating, what our options were and doing some really deep dive into what probabilities of recovery were and to be able to translate some of the medical and scientific stuff in a really good way. And then I'm the one practical one that gets us from point A to point B. I mean, the critical points were when we're sitting there talking to the doctors and saying, so what are you saying? Are you saying palliative care?

Nancy Noever: (20:18)
Are you saying, put the feeding tube in. And I'm very clearly saying, no, we're not putting the feeding tube in. And so we're going for palliative care and I'm like, I'll sign whatever you want to, because I have had multiple conversations with one mother and I know this and they were like, okay. And I'm like, I had the papers that said I was the executor and that I had the directive and that it was within my powers. So in doing that my brother and I had had some conversations too, of she has a directive, but she's always wanted to fight. And I'm like, yeah, when there's a possibility that she's going to come out okay on the other side. And I think that's what all of us want. If there's a possibility that you can go back to normal, absolutely you want them to try whatever they-

Marty Stevens-Heebner: (21:05)
Of course. But in a way, she was fighting to make sure that you knew, and that's a gift. She was making it clear to you, I want to go. My mom died when I was only 26 and she was only 58. She had colon cancer. And somewhere along the line, the New York times had an article about, you need to talk to your parents or parent about the will. And I read through that and I thought, because we have some family dynamics going on in my family. We'll just leave it at that for now. And the next time I was home visiting my father, we went on a little walk around the neighborhood in Buffalo. I believe I started by saying, "I'm going to ask you a question, dad, kind of a difficult one. And I just want you to know, I only care that documents are made out and you know, there won't be any squabbling when you're gone.

Marty Stevens-Heebner: (22:02)
So I just want to make sure have you set up your will? Is it airtight, signed everything." And this is before I was in the profession I am in now, but I now hear so many stories about finding wills or trust documents in a drawer and they haven't been signed. that sort of thing. I said, I don't care who gets what? I just want to know that there won't be any legal fights. Because it's going to be hard enough to lose you. I will miss you terribly. And he really seemed to appreciate that and started saying, "Oh, it's all taken care of. It's split up between the three of you girls. And you'll each get an equal part." I said, dad, "I don't need to know that. Thank you." But that's not my biggest concern. I just don't while I'm grieving, losing you, I don't want to also be having to fight my siblings.

Nancy Noever: (22:56)
Right. And I mean, that was the because of mom's experience, then we also had my dad do a directive, which was very helpful when he had a stroke for my brother and the legal stuff we had to do. My father wanted to be, lived to be 100. And he literally fell out of his skin as he was dying. And his optimism was, I'm still going to break this. I'm still okay. And the Parkinson's had gotten to the point where he was having hallucinations. And so it was becoming difficult for him and for us. And that was another thing of my father might've physically been there, but the father that I knew, and I still loved him obviously, but the person that... I had five years to grieve my father because he had died really the father that I knew had died when he had the stroke five years earlier.

Nancy Noever: (24:00)
So it wasn't all bad, but there were also some, my dad was bedridden and in diapers and it was not, my father had been driving and living alone up until the moment that he had the stroke and he was a golfer and he was, a lot of things that he was not able to do in a 10 by 20 room. A 10 by 12. I lost both my parents within a two year period, so and other, and that's been the last three years. So it's still very fresh and there's still lots of things. I'm like, "Oh!" And my mother was a women's history teacher and this was the 100th year anniversary of women getting the vote. And I was like, oh, I wish I'd asked her about this. But there's all these things that you don't get a chance to, to talk about until they're gone and you don't even think of the questions.

Nancy Noever: (24:53)
And that's one of the things I'm doing with my aunt. My mom had delved really deeply into family history and done it from a historical standpoint, as well as the family history part of it. I think it was really important in that conversation we had in the lobby after we had just made the decision, because I think in talking, in hearing other people's stories, that was a critical moment because my brother and I were in agreement that this is what we were doing. And that this was the right thing to do as opposed to one or more of the family members saying no, but she's got to survive and she can still live through this and all that kind of stuff that you have of people not being able to let go. And once we've made the decision that mom was going to die, then it became all right, how do we make her comfortable? What papers do we need to sign? She wanted to be cremated. So it was arranging that.

Marty Stevens-Heebner: (25:55)
What people don't realize is, as soon as someone passes, there is this enormous list of things that instantly need to be taken care of. The funeral arrangements, the obituary.

Nancy Noever: (26:07)
My mom was, and she had been a teacher in Oklahoma, but she didn't have a huge number of friends here in Huntsville. And so it was, she didn't really want to have a funeral. I think out of part of a fear that no one would show up which the irony of how many people were affected by her death and how they rallied around me said that, that she was more loved than she thought she was. And then I also, and the mom was like, my ashes need to go to Pensacola, Florida.

Marty Stevens-Heebner: (26:36)
Why Pensacola?

Nancy Noever: (26:39)
My mom loved the ocean. And so that was, she would go, there were several points in her life where she would go and spend several weeks to several months,

Marty Stevens-Heebner: (26:48)
Spending her next evolution, whatever that may be on the beach or near the beach. So not a bad thing.

Nancy Noever: (26:58)
Yeah. And my mom, I don't think there was anything really left unsaid because on our family, it was short. It was always, you should spend time with people while they're alive. You should express your feelings with them while you're alive, you should do it not for special holidays, you should do it every day. And so we've sort of been living that way for the last several years. So there wasn't much that was left. I would, every time I left the hospital room, I would say to my mom, I love you. And so in my heart, I've been saying it.

Marty Stevens-Heebner: (27:37)
Nancy, I want to thank you so much for being this open with us about your whole experience with your mother's passing. It's been so touching and also I think really informative for people. Thank you for your courage. In the next episode, you will hear about Nancy's journey as the executor. That was a year and a half ago that your mom died and you're still dealing with some things and Nancy will be here to speak about it in her remarkable way. Thank you so much for being with me.

Nancy Noever: (28:07)
Thank you.

Marty Stevens-Heebner: (28:11)
Thank you so much for listening to, How to Move Your Mom and still be on speaking terms afterward. Please visit howtomoveyourmom.com for more information about this episode and for additional podcast episodes, featuring other extraordinary guests and conversations. Until next time, this is your very grateful host, Marty Stevens-Heebner.