Some Things Are Worse than Death

In the first part of Episode 3, Carrie describes a dream involving a skywriter with a less than uplifting message. She uses this dream to describe a little of what it was like to be raised by a mother who wanted to make sure Carrie was prepared for the challenges of real life. 

In part 2, the tone is more serious as Carrie shares the complex struggles her mother endured throughout her life, but especially during the last five years leading to her death. There is a strong focus on chronic illness and it's impact as well as unhealed trauma. Carrie also discusses the challenges of balancing the therapist parts of herself that hold great empathy for mother vs the daughter parts of herself that hold some feelings of anger in the context of grief. There is some discussion of intimate partner violence as well as gun violence that may feel unsafe for some listeners. 

If you have a question for next week's mini episode and Who Asked Me segment, or if you have a story you'd like to tell, send me an email at carrie.always.talking@gmail.com. I'd love to hear from you.

Facebook group- www.facebook.com/groups/carriesalwaystalking/

Transcript

Hello and welcome to episode three of Carrie's Always Talking. This is a podcast all about stories and connection. I believe that people telling their stories to one another is one of the main ways that we build empathy and humanity. And that's something I believe that the world could use a little bit more of right now. I'm your host Carrie McNulty. And as I said, this is episode three. Thank you so much for joining me. For any of you that have been listening and following and sharing, I really appreciate it. This is something I've been so excited to do. And I love that I have the outlet to do it and that I have people who are willing to listen. It's a real gift. Today is going to be a longer episode. I've been going back and forth between a mini episode and a longer episode, and today it is a longer one. So buckle in if you're going to join me. The theme of today's episode, again, it sounds kind of heavy, so I apologize about that. But I do promise that all of these stories are not going to be so heavy.. And I do promise that other people are going to come on as well. It's not just gonna be me telling my own stories, but this one today is important to me. And it's one that when I thought about doing the podcast, I knew I needed to tell and I needed to do it for me. So today is going to be about my mom and her health, especially in the past five years of her life while she was living and way that her mental health impacted her physical health and vice versa throughout her life. I think it's a very important story and it's definitely one that's meaningful to me and the theme of it, let me get back to that, is there are some things worse than death.

 I know that sounds really not great but I do think that it's again important because hers is a story of chronic illness and I think that what she went through was her whole life was really difficult, right? For many different reasons. And we'll talk about some of that, but the health aspects of it and what it was like to live as somebody with a chronic illness and to have your world become smaller and smaller. I think that empathy and that understanding is definitely something that we need to have more of moving forward in the world. And if you are somebody living with a chronic illness, I'm hoping this is helpful to you if you have a family member who struggled and maybe it was difficult at times for you to help to care for them or the relationships were complicated I'm hoping that maybe this story will help you too and if nothing else I hope that you'll at least find it interesting. some warnings I'll kind of give right off the bat we're going to be talking about some more challenging topics and some things that could be pretty triggering to people so I'm going to give a little list of what those things are. I will say nothing is going to be looked into or spoken about in great detail, but I would be remiss to not give warnings that there will be some discussion of intimate partner violence. There will be some discussion of firearm use. There will be some discussion of weight issues and body image concerns. There may be discussions of specific foods and some numbers, which are not things that I typically talk about in my day -to -day work and job, nor do I think that they are always helpful things to discuss. But in the context of her story, I think it's useful information that helps to sort of round out the picture that hopefully you'll be building as I go along and I tell the story.

 So yes, know that those things are all gonna be a part of the podcast today. And if those things are more challenging for you or too triggering for you, please don't feel like you need to listen. And like I said, I just feel like it's the right thing to do to give that warning ahead of time. So before I get into the main part of the story, I always like to tell a little story first. And I think it helps to give you a little bit of an indication, just tiny little piece of what it was like to be raised by Jackie. That's my mom's name.
So the first one is a little story about me and my husband. So we were dating for, I would say about two years before discussion of marriage was coming up and proposing and getting a ring and planning all of that. And I had been married once before, so I didn't need or want it to be anything big.

And I knew in a roundabout timetable when he might ask me, but I didn't know exactly when that part was going to be a surprise. And how this relates to my mother is that being raised by her was a gift in many ways and a challenge in many ways. But one of the things that she instilled in me was that you should expect that life is not going to be easy, that there are going to be a lot of challenges that saying why me is probably not worth your time. And you need to be prepared for that. Don't assume that everything is gonna go your way. Assume you're gonna have to work for it. If you want something in your life, it was always very much a realistic viewpoint of everything. And that was just drilled into my head, basically. And you know what? It set me up, it prepared me. I've handled a lot of difficult things with understanding that why not me? know, anything could happen. Unfortunately, that message really was so ingrained in me. One night I had a dream, I'm a very vivid dreamer. And this was during the time period where I was thinking at any point that John, that's my husband, might propose. And so I was having this dream that, you know, he and I were on a together in this car ride

 You know, I'm looking out the window and it's really pretty and everything is green. know, we get to this destination. It's up on this mountaintop and I'm like, my gosh, this is amazing. I bet you today's the day. I bet you this is when he's going to ask me. I'm so excited. So, you know, he gets out and he opens my door for me. That's not something we really do, but in the stream he did. And, you know, we go over and we're over this overpass and we're looking down into this valley and it's just so beautiful. And he's like, look up and I'm like, my gosh.

 What's happening? Is it happening now? And so I do, look up and I see this plane. And it turns out that the plane is a sky writing plane. And I'm like, yeah, this is it. my God. He's gonna ask me. He's asked me right now to marry him. This is amazing. This is so cool. I can't believe that he came up with this idea. This is wild. And the plane starts writing and I'm watching and I'm waiting and I'm paying attention. And I'm like, my God, this is very cool.

 You know, I'm getting all ready and I'm watching and the plane spells out, life isn't always easy. And that's it. He didn't ask me to get married. He didn't propose nothing. It was just that he hired a skywriter to tell me that life isn't always easy. And so I woke up from the dream and I thought, well, no shit. Like, I know this. I've been knowing this for my whole entire life. And I can't help but think that, you know, the message that she kind of drilled into my head over the years is why I would have a dream like that. Now, yes, he did eventually propose it wasn't via Skywriter or anything like that, but it's just funny to me that that message was there to such a degree, you know, that Jackie's, you know, really drilled it into me, that life isn't always easy. So much so that I had to have a dream about it during an important time. So that gives you somewhat of an indication of what it was like. And I do look back at that fondly and I do think it's funny.

 On a more serious note, if we're going to get into the main part of the story today, I've sort of come up with this timeline in my mind the best I can in working on what I wanted to talk about and how things unfolded for her. So it may be a little rambly at times. I hope not. But I'm going to do the best I can. And as I said, I think this story is an important one. And if I'm going to tell the story of her health and the story of her mental health and the way that she struggled with both,

 I need to tell some things that happened early on in her life. I want to make it clear that I am not in any way judging my mom or judging anybody else. Well, there's one person in this that I might judge. But I know that she did the very best that she could and that she didn't have a lot to work with in terms of resources for her, even at the start of her life. So when my mom was 19 years old, She left her parents' home to get married and she married somebody in the military and this person is not my father. This was the person she married prior to that relationship and she was 19 years old as I said so she moved to New Mexico with this person.

 It ended up being a very not safe relationship for her, you know, physically and emotionally. And this is sort of where the intimate partner violence comes into play and also, you know, the gun violence. And when I tell the story, know that I'm using language that she would have used and I'm going to do that throughout. So the way that she talked about her body, I'm going to be doing that as well, just so you know. So if there's certain words that I'm using that you don't quite understand why I'm using it, I'm using the word she used to describe her own body and to describe her own situation. She was in an abusive relationship and this had gone on for some time and she got to the point where she had finally decided that she had enough and that she wanted to leave. And the way that she told me the story was.

 I knew he was away. And when he came back, he was working when he came back, she had made the decision that she was going to go to the movies with a friend, which meant she really was going to leave. And he had caught onto the fact that she was leaving him. And he said to her, if you walk out that door, I'm going to shoot you. And my mom being my mom was like, you know, okay. So she walks out the door and unfortunately what happens is my mother was shot at close range with a shotgun in the stomach that she was 19 years old. So what happened after that from the way that she shared it was that the bullet entered through her stomach and sort of exploded through her back. And she had to be life -lated from New Mexico to a hospital in Texas. In terms of what happened to that person, when I said that I don't blame anybody, I do blame him for the situation with her because that was a choice that he made that forever changed the trajectory of her life and her health and her mental health. So she ended up doing something that I think would be very hard for anybody to do. And that is that she had to spend a whole year in the hospital in Texas learning how to walk again and basically being put back together again in whichever way they could. She had an ileostomy for a while and eventually that was reversed. She only had one working fallopian tube after that and everything was kind of put together and back in her abdomen, however they could make it work for her. and all of this while trying to learn to walk again, being very sick, having to rely on people that she didn't know, being so far away. We're talking Pennsylvania to Texas. She's there by herself for a whole year, trying to figure out how she's going to put her life back together physically and mentally. And she ended up contracting MRSA while she was in the hospital, which is not very uncommon to connect or acquire a hospital born illness, especially when you're there for that long. So she had that, which was complicating her healing. And eventually she made it back home after that year. And the way she described her body after the fact was that she was crippled. So she had her left leg, which she would call her bad leg. And there was significant nerve damage to the lower part of her leg and her foot. had dropped foot.

after that too, meaning that she oftentimes needed to wear, in my early years, she wore a brace on her foot and eventually she got to the place where she wasn't needing that for a while, but she always walked with a limp and sort of needed to drag that foot a little bit. And that was just sort of one of the things that mainly affected that leg and the nerve damage. And also then, you know, she was sort of off center and sort of one shoulder was higher than the other and she sort

I mean, she learned how to walk again and she made it work, but she wasn't running after that. That's the one thing that she couldn't do. but pretty much everything else that she, she could do physically is just, she had a lot more pain and it was a little more complicated for her in life. So after that, she stayed with her parents when she came back home and eventually she met my father who ended up living right across the street from her. And, she got married and had my brother pretty soon after that. And the doctor said to her, hey, you know, don't think it's a good idea for you to have another child. And she didn't listen and decided that she would somehow with one fallopian tube. And she got pregnant again. And here I am three years later after my brother. And that was her main goal in life. She would always say is I wanted two kids. I always wanted to be a mother. I wanted a boy and I wanted a girl in that order. And that's exactly what she got. So to her, she felt like, you the ultimate thing that she wanted ended up happening despite what she went through to try to get it. Fast forward a lot, because like I said, I want to make this about the last five years of her life, but I think it's important to talk about what sort of started the health issues for her. Not necessarily the start of the mental health stuff because she ended up leaving to go be with the person that she left to go be with at 19 because her home life was really tough and she had a really hard relationship with her mother.

 I don't really want to make it a ton about my grandmother and her relationship, but she didn't really ever feel good about herself. My mom had really, really low self -esteem, and I'm going to cover that a bit more at the end in the last story that I'm going to tell about her.

 We're going to go to, and this is tough for me to think of on a timeline, but there was a point in which she had a job working for a university where it was a very physical job, and she did janitorial work, and she cleaned.

 And was very hard on her body. And that was always something that she took a lot of pride in was her job and what she did in her work and working in a team and how she was viewed for what she could do, despite the fact that she had these physical limitations. She was working that job. one night when she was out, she fell and hurt her foot. And I'm trying to think about what year this might've been. Cause I don't exactly remember the year that she had to retire, but she fell and she hurt her bad foot and there was a wound on this foot. And she had a habit of what she would call doctoring it herself. She was going to take care of that on her own and not say anything to anybody about it. And she was sure that she could, you know, heal it up and it wouldn't be an issue. The problem is there's very little circulation in this foot because of all of the nerve damage and it did not heal. And she in fact ended up developing a pretty significant infection in the bones in her feet or in that foot. And she ended up needing to take time off of work and be on IV antibiotics for about, I want to say at least six weeks. I think she needed to do more than one round of that in order to clear it up. Clearing infections for her was always hard after the MRSA diagnosis from the hospital. She always had problems with healing and this was no exception. So she was on these IV antibiotics and they were Levoquin and Cipro, unfortunately.

And if you know anything about those antibiotics, you know they have what's called a black box warning. Basically stating that there's the possibility of instantaneous tendon rupture and ligament issues. And she ended up, unfortunately, with those side effects pretty soon after the infusions ended. She went back to work. And again, this being a very physical job, she already had significant osteoarthritis. She went back to doing this job and in no time.

she started, know, tendons started to snap and especially in her bad knee. So what was already a bad situation became much worse. Her knuckles and wrists and elbows, everything became incredibly swollen and there were fluid filled sacs developing in her elbows and in her wrists and her finger joints were really painful, swollen and difficult to deal with. And then with her knee, the tendon in her knee,

Basically what happened is when she would walk after this occurred, she would take a step and her leg would go in to her knee and then turn out at a completely opposite angle. So it almost looked like an inward triangle that almost looked like every time she took a step it was just gonna snap. So you can imagine how painful that must have been. My was prescribed some pain medication to take and ongoing, that's kind of what happened throughout her life. There were multiple different medications that she took to keep herself going. And there was no issue with getting those prescribed for her. And she still kind of tried to push it as long as she could. And eventually after that injury and what happened with those medications, she needed to retire. And then her world got even smaller. I think I failed to describe the level of trauma that she went through and having to stay in that hospital for a year, having to, having to try to rebuild her life after somebody tried to take her life and having to trust people that she didn't know to do what was in her best interest and being completely vulnerable and completely at the mercy of the people who were working at the hospitals. And so she became very good at making those quick connections with people and doing what she needed to do to survive as safely as she could.

 That impacted her for the whole rest of her life in that she really didn't let many people in. People didn't know how much she was struggling or what kind of pain she was in. She never wanted to be in the position to have to rely on people to that extent again. And I can't overstate that enough. Her trauma was such that she told herself that no matter what

You're not gonna end up in a hospital again completely at the mercy of anybody else. You're always gonna have to be able to take care of yourself and you need to figure it out. And I really feel where this is where that drive to doctor herself came from. And I say that now because we are going to start talking about the last five years of her life. So as you recall, maybe, or maybe not depending on if you listen to the first episode, when I was in Belfast, I saw the palm reader and I was worried about her because she had just had a hysterectomy surgery. I was worried about that because she was such a poor healer and she did end up having issues and complications with healing after that surgery. The doctor she had that she had been working with had confidence that he could clear up all of her scar tissue.

from her previous surgeries and he was like, I'm gonna make it look beautiful. And he was very sure of himself. And unfortunately she knew and had warned him like, hey, this is not gonna go as easily as you think it's gonna go. And it didn't. She ended up having a lot of complications and it took a long time for her to heal after that hysterectomy, which was why I was concerned. So just to the point of this was an ongoing thing for her with her body not being able to heal. We get to the year 2016, we'll start there. My mom also was a person who had a lot of body image issues. And so that's where this starts to come in, where I'm to be talking a little bit about numbers and a little bit about food choices and things like that. Throughout her life, starting in high school, she was in a larger body and she was given a very hard time about that, especially in the home that she grew up in. And so my mother never felt good about her physical body, never felt confident about her physical body. And that's something that she dealt with her whole entire life. Throughout her life, she would yo -yo diet, she would go on a very restrictive plan and then she would end up starting to binge and regain weight and then that cycle would continue and that is something that happened many, many times throughout her adult life. In 2016, she went on one of her restrictive diets. Mind you, now at this point, I had been working in eating disorders for about five years and so I had said to her, know, I'm not really sure that this is a great idea. I don't think that, you know, you want to get too restrictive with this because I think she was seeing all of these results from doing it and she wasn't really having hunger cues anymore. She didn't really want to hear that. She wanted to keep doing what she was doing because she was seeing the results of doing it. And she did. She went from probably, and this is where I'm going to talk about some numbers. So if this is triggering for you, I do apologize, but I think it's important in the context of her physical health. She went from probably around 180 to 150 pounds and she was really proud of that 150 pounds number. And she made it to that 2017, the very beginning of 2017 that put her body in an incredibly vulnerable position because she did not have the nutrition that she needed in order to help her if she would end up with any kind of infection to which she was prone. And unfortunately that is exactly what happened. Somehow I don't know that there was an actual open wound in this situation as there was with her foot but somehow she ended up with an infection in her bad knee as she would call it and

 It was very swollen and very red and hot to the touch. She also somehow developed an infection in her right wrist and in her hand at the same time. And that was her dominant hand. And by now, again, she's already got these knuckles that are all swollen and fingers are twisted and she's got this incredibly horrible arthritis issue going on already as it is. And now we have this, her arm and wrist were huge and swollen. This had been going on for some time and she hadn't said anything to anybody because again she was trying to doctor it and take care of it at home on her own. It got bad enough that my stepfather eventually said something to my aunt who went to the house and saw her and was trying to help my mom because she was so out of it. She had also developed this really horrible UTI and so she was seeing things that weren't there because that can happen withand she was completely out of it and my aunt was trying to help her to get her dressed and having to like lift her and it was really bad. My mom was really not present, we'll say. And my aunt said, you know what, we can't do this. We've got to call an ambulance. so an ambulance came to the house and they took her to a regional hospital that was about 20 minutes away from their very small town. And this is where I started getting a lot of phone calls from the doctor at this hospital.saying, hey, because I was the point person then at this point, I do know a lot about health stuff. I'm really aware of my mom's medical health history and they really needed somebody who could help fill in the blanks about what medication she was on. They were initially just going to give her Tylenol. I was like, you can't do that. She's been on pain medication for this number of years and this dose. We're going to end up with an issue with withdrawal on top of, you all of these other medical things we have going on. So I was kind of the person trying to help to fill in the blanks the most. And he had said to me, I'm really concerned. I don't think we can treat her here, but I'm also concerned that your mom's gonna end up losing her hand because the infection is so severe. I mean, when I tell you that it was swollen, I mean, it was like the skin was about to bust and I'm sorry to be so graphic. I do have pictures of this stuff and I would never dream of trying to put them up to show anybody because it is pretty traumatic to even see the photos.

 is she had kind of let it get to that point at home where it was so bad. And she wouldn't really let my stepfather do much about it. She kept telling him, no, no, I got it under control. got it under control. So they decide they can't treat her at this regional hospital. And they transfer her to the city where I live, about two and a half hours away. And they put her in the major hospital system here. And then, unfortunately for my mom, this is where in 2017 things really started to unravel for her with her health. She had already had to give up her job because of her health, which was something that was a huge point of pride for her. And after that, her world became very small. And a lot of that was by choice.

 But she was content enough because she could clean her house and she could, you know, do the little things around there that she needed to do, even if it meant that she had to scoot on her hands and knees and on her butt to clean the floor in the kitchen, she would do it. Like she was content with that. But in 2017, that is where all of this changed. I need to go back a little bit to say that there are a couple of things that were her ultimate worst fears. Okay. One of them was ending up in the hospital again for an extended stay where she had no control over herself and her life. and she was very vulnerable. Another was ending up in a wheelchair and not being able to walk and not being able to be mobile with this bad leg. And the ultimate fear was that she was going to have to end up having an amputation of that leg. So keep those three things in mind. As I tell you, she goes into the hospital. She is septic at this point. The infection is really bad. They have her onmultiple different broad spectrum antibiotics intravenously. She's still trying to fight the UTI. They get that under control, but they're having to pump her so full of fluids that her blood pressure is completely out of control on top of the fact that they are checking her and checking her and her numbers are still so bad. Like this infection, they cannot figure it out. They know that it's in her wrist and they know that it's in her knee and they have cultured these areas and the antibiotics that they're using to treat it should be helping to take care of it. And it's not, it's not doing

 So they end up, even though she's in this vulnerable state, the knee needs a minor surgery to clear it out, to clean it out. And that ends up doing wonders for that area. And unfortunately with her hand, it was much more complicated by the time they ended up deciding to do surgery. And though she did not lose

 She ended up having to basically have it cut open to such a point and the skin was infected and necrotic to the point where she ended up losing a lot of functioning in her hand and her dominant hand was really hardly usable to her anymore. She required a wound vac and an eventual skin graft on that. And the wound vac was on for months. I mean, it was just really, really awful to clear that

 So we were able to have those surgeries, before that there was another area, there must've been another area of infection the doctors were saying that they couldn't find. And I was with her every single day, for the most part up at the hospital because I lived in the city where she was and nobody else did. So I was there talking to people, trying to figure out what was going on and trying to be there for her, which was really hard because again, she wasn't the normal parts of herself. She was the most traumatized versions of herself. Right now she's watching something unfold that is the last thing that she ever wanted to happen to her again in this whole world. She is at the mercy of other people and her body is betraying her again. She has no control over it whatsoever. And it was really hard to be there for her because she was not doing well with it. So I'm there and I noticed this area in her collarbone that's really red and is hot to the touch and hard. And I said to the nurse, I'm like, this does not look good to me. This does not look right. Can we please talk to the doctor about this and see if, you know, what they think. And sure enough, this was the third area of infection, which was why her blood work wasn't clearing up. And this was her clavicle, her collarbone. There was infection and it was a different kind of infection that was in her arm and in her knee. We have no idea. Again, there was no, you know, if it was the entry pointwhen things started to break down with her hand and maybe some other bacteria got in, we have no idea how it ended up being two separate kinds of infection for her and that it manifested in her clavicle.

As I said to you, my mom really did not have great body image. She had a lot of scars after her surgery when she was 19 and this was an area that she was very vulnerable. One thing she loved about herself was her neck and her upper chest area. She really, that was the one part of her body that she would have nothing negative to say about. And unfortunately, this area of infection was so bad that she needed to have multiple surgeries to debrid -that bone in that area and a chunk of her collarbone needed to be removed. And again, she needed a wound vac there, which was incredibly painful. And especially when they would have to replace the wound vac and then do the surgery again. And again, that might have happened for her, the surgery upwards of 10 times. And it was traumatic for her every time she had to go out and every time she had to have the surgery.

So she ended up having to have, and I'm just going to be honest when I say that they did not do a great job with this area. She ended up needing this skin graft and they closed her up and they made it entirely too tight. So she had no way to flex, like she had no flexibility and it was very painful and so painful. In fact, sometimes it would make her vomit not to mention the way her body physically changed yet again.

I will also say that while she was in the hospital this time, they diagnosed her with not only osteoarthritis, but rheumatoid arthritis. And that was something that she can never get on board with. She didn't want her treatment to change in terms of the pain medication that she was getting. And she just didn't believe that that was something she was dealing with, although they were able to confirm it with both blood work and by just looking at her fingers and toes and her elbows and wrists. mean, she no doubt about it had that, which again, makes her more susceptible to infections. So it's really a perfect storm of she wasn't nutritionally And then she has, you know, this autoimmune issue that's making her more susceptible to infections. And again, her worst nightmare is happening because she was in the hospital, I want to say for about five months. And then she was transferred to a skilled nursing facility for another five, six months. So it was almost a year away from home again. And I'm sure at some point she did not think she was going to get back. And it was actually very difficult to get her back in the house. because she could do very little for herself. She did not have use of her dominant hand and she really struggled to get herself back up on her feet and she ended up in a wheelchair that she never was able to get out of. She could stand briefly for time periods holding up to the sink or something like that but she really was confined for the most part to this wheelchair and now she's having to adjust again to her world getting even smaller. and her worst fears are actually coming true, And that is never something I think that she would have anticipated. However, in hindsight, you could say, well, it sounds like she kind of making choices to not go directly to the hospital or directly to the doctor when she was having a medical issue. And that's where the trauma piece comes in because she was never going to do

 She was never going to do that for fear that the thing that actually ended up happening would happen. And I'd like to say that that was the last time this whole scenario occurred, but it isn't. She stayed at home until 2019. So I would say she probably got maybe a year of being at home, living at the house. And unfortunately, she developed an infection in her bad leg, in the lower part of that leg. and some pretty significant bed sores from being wheelchair bound, both in her back and one in her stomach area.

She didn't say anything to anybody about it. She was obviously in immense pain because she had gone through all of her pain medication because she didn't want to say to anything to anybody about it. And she was trying to just treat it at home and grin and bear it. And it got so bad again. Like at that point, she was also really not encouraging me or my brother to come home a lot. And I think it was because she was trying to hide what was going on with her again. And I can't imagine how it must have felt for her to know, my God, here we go again, like I can't let this happen. I think she was in such strong denial about this happening again and this like a part of her was so unwilling to let her ask for any kind of help that unfortunately that's exactly what happened. So again, my poor aunt is called to the house by my stepfather and, and this is making my mom was very unhappy about that. She did not want anybody involved and she was very unhappy with him for finally saying something about it. But I think he finally realized that it was not something that could be taken care of at home. And quite honestly had gone way too far. She showed up again and it was awful. And she said, you know what? I can't, I'm calling an ambulance again. I'm sorry. I know you're going to be mad about this, but I got to do what I got to do. And she did.
This time she stayed at the regional hospital where she was, but unfortunately the infection was pretty hard to get under control. and the decision had to be made that the lower part of her bad leg was not going to heal. Those wounds were not going to heal up. The circulation was entirely too poor and the wounds were too significant. The infection was too severe. So she had to do the other thing that she was most afraid of in the whole world. People would say to her at times, even when she was more mobile, what would you think it would be like to have that leg removed and have a prosthetic? Don't you think that you would move around more easily? And my mom would be so offended by that suggestion that I think those people would be lucky if she ever talked to them again. That was just beyond offensive to her. And ultimately, I think the thing that was her biggest fear that she had. The wheelchair was bad enough to adjust to. This was something that I feel that she just mentally could never rebound from they ended up saying we need to amputate this leg from above the knee down and she had no choice unfortunately but to agree to that because nothing was going to heal if she

 So she had that surgery and that took care of the infections that she was having. She did need to have wound vacs for the other sores and that was ongoing because she was constantly either laying or sitting and so she always had some sores to some degree the whole rest of her life, but they weren't causing as much of an issue as the lower leg was and that's why it had to go.

And after that happened, things really changed for her mentally. At least looking back, I can see that.

 You know, sometimes it's hard to ride the line of knowing all of this and knowing how significant her trauma was and knowing that she couldn't find a way in her to make a different choice. I understand it objectively as a therapist looking at the situation, why it would have been hard for her to make a different choice than what she made. But the daughter part of me was so angry and so frustrated.

 you know, we knew that this was going to happen again if you, you know, we had the conversation, everybody, and she was very defiant in those conversations of like, if you end up with another infection, you have to get it treated, mom, like you have to do it. Like it's not going to go well for you. And she just, she couldn't do it. Right. This part of her was fighting the worst case scenario at every turn. And every time that's exactly what happened to

 And she couldn't see the connection, the connection, piece that was missing is that she refused to ask for help. She refused to say, is what's wrong with me. This is where I'm vulnerable. This is what I'm struggling with. This is what I need help with because she was so afraid that her worst case scenarios would happen and then they did.

 So she then ended up being transferred to another skilled nursing facility that was different than the last one and unfortunately she never made it home from that experience. So she was there from 2019 until she passed in 2021. And that was in the, you know, within the first year of the pandemic. And so it was not easy to go in and visit during that time.

 And her time there was, was really difficult too, because unfortunately, because of all of the infections and issues she was having, her kidneys started to shut down. And that's what can happen with chronic illness is repeated infections. You know, our immune systems are not like a muscle. They're like a battery. And unfortunately, her immune system just simply could not fight these repeated ongoing infections and her kidneys were an area of focus for that. And one became completely non -functional.

The other issue was that, you know, she just never got herself strong enough to be able to like sit up and to move and to do, you know, the more physical things that she used to and her hand never fully recovered. So she was pretty inactive because she really couldn't do anything in this body that she was left with. My mom has always had always kept herself as busy as she could possibly be because I think that she didn't really ever want to take time to stop and think about all the stuff that she had been through. She didn't ever go to therapy. She didn't really believe in that. I don't think she would have trusted anybody. It just wouldn't have been safe for her. And I think her way of looking at it was, you know, that happened, I dealt with it, I moved through it, you know, but it always stayed with her. I mean, it was like in every decision she ever made. And unfortunately, it was in all of the decisions that she made that ultimately led to the end of her life. And again, this is not to blame her because I don't think she had a choice. I don't think she had a choice to do anything differently.

So it got to the point where these infections were so prevalent that she was having to go back and forth to the emergency room a lot from the skilled nursing facility. And they came to the conclusion that her pain medication was one of the things that was dropping her respirations and her heart rate to the point of her needing to be taken to the emergency room to get oxygen and to get her going again. And at this point, she didn't want to accept the fact that things were heading in the direction

She wasn't going to be on this planet anymore. And she got really angry with anybody who would try to discuss that with her. And one of the ways she could have continued to get her pain medication, in fact, the only way was what if she would have agreed to go on hospice and she did not want to do that. She got really angry and would say, like, so you're saying I have to agree to die in order to get medicine for my pain. And without understanding that if she did that, her pain medication was dropping her respirations and her heart rate so much, there was no way to do that safely for and she was in a really tough spot because I do believe that her medicine was one of the ways that she got to escape from the reality of her situation. If you can imagine all of the things that you have ever wanted to run from in your life that you had never dealt with, all of your traumas, they don't go anywhere. They stay there and wait for you. And they were waiting for her when she had no way to be busy to outrun them when she had no ways to mentally escape or dissociate from them it was all there the mirror was right there in front of her face and i think that anytime she had to look at her choices in the situation she got really angry and unfortunately in the later years of her life that anger was it was directed my way a lot

You know, towards the end, wasn't allowed to speak to her medical team and I wasn't allowed to be in the loop. She had made that decision for whatever reason. And when you would ask her about it, she would deny it. And I mean, when people would say to me, you know, I'm so sorry that you lost your mom. would say, I lost my mom a long time ago. She was really left operating from the most traumatized vulnerable parts of herself. And again, as a therapist now I can look at that and understand it completely, but as a daughter.

 That's a much different thing. You know, it's very hard to want to be there for somebody who makes it impossible for you to do it. And it really caused a lot of challenges in our relationship towards the end. And I really distanced myself. I had to. I think not only because I knew what was coming, and maybe that's, I would like to think subconsciously maybe why she did it too, but I don't know.

 She did thankfully make very close relationships with the people working in the facility where she was at and that was important. And you know what? That's an old skill that she knew how to do. And in her mind, I think it was really like, well, that was her family then, you know, because that was her reality. She was very good at adapting to what was happening in the moment. And then when it wasn't in vision or in sight, that was out of mind. And we weren't unfortunately in the loop of everything that was happening. one, because of the pandemic and two, because of the state of the relationships that we were left with because of all of this. So there was this talk at some point about her doing this major surgery to try to salvage the one functioning kidney that she had, but it was going to be like an eight hour long surgery. And in actuality, I think that was reconsidered pretty quickly and the doctors came to realize that she would not survive. doing that surgery like that and the possibility of it making a huge difference was very slim. She was also having these recurrent UTIs because she couldn't get up and she couldn't move. so eventually what ended up happening is that her body, I think, her kidneys ended up shutting down. And although it was never specifically clarified how and why her respirations obviously were very low when she would sleep at night. And eventually I think it was because of infections that she ended up passing and I did get to see her. the night that she passed, again, we're in full mask and gown and shield and everything because this is in 2021 in order to be able to be in the facility to see her, they had to make exceptions because she was at the end of her life. So she ended up passing during that time. And that's...

 for her, you know, no relief really ever came, but she had said to me the week that she passed away, the week before, unfortunately, her roommate had passed away and that was really upsetting for her. And understandably, because she had gotten close to the people that were there and I think it made her really afraid for herself. And I think it made it become more clear to her that this was what was going to happen to her and probably sooner rather than later. And she said to me, one way or the other, I'm getting out of this place. I'm not going to be here next year.

 One way or the other, I'm done. I'm getting out of here. And the next day she signed her DNR and said, don't take me to the emergency room anymore if my heart rate becomes too low or my respirations become too low. And within that week she had passed. So in true Jackie fashion, she fought it and fought it and fought it. And then once she made her decision that she was done, she was done.

 I swear she did the same thing with smoking when she was 13, she started smoking and at 50 she decided she was done. That was what she was doing for her 50th birthday. And that's just it. The woman did it. She was done. There was no, you know, no discussion of withdrawal, no discussion of any of that. She was just done. And that's how it was.

It's really hard that in the last years of her life, everything had become so small and she had become so angry and she had become so alone. And it makes me sad. And I feel like it didn't need to happen that way. But then in other ways, I feel like there was no way it could have happened any other way, if that makes sense. mean, my friend Courtney, who you will be hearing on this podcast, the first guest I have, it's going to be her. And she's a palliative care nurse practitioner.

 One thing she said to me that really helped me in that time was she said that people die the way that they live. And sometimes they become more of who they are at that time period in their life. There's usually not any big epiphanies or big apologies or anything like that. It just becomes more of the same thing. And I think that that was helpful to hear because that's kind of exactly what happened for my

 Her story is important for many reasons and she shouldn't be reduced down to just these parts of her because there were many, many other parts of her that were great.

 She just didn't get to access all of that towards the end of her life. I think she was really afraid to die. And I think that's why, you know, she fought it. I mean, think about it. It's the ultimate loss of control. And this is a woman who so wanted to be in control of everything, so much so to the point that she kept making these same decisions over and over again that caused her to be out of control. And that's how parts of us work sometimes. We'll say, I'm never letting this happen again. I'm never acting this way. And then we get into a vulnerable position and we do the exact thing that we say we're not going to do. And that's what happened for her repeatedly. But dying is the ultimate loss of control. And she really fought it with everything that she had while making choices that led her there, which is so interesting to me.

 So that's the story of her health in the last five years. But the last thing I want to leave everybody with, with my mom, is this. There will be some people likely who knew her who will say she would have hated the fact that I'm telling any bit of her story because she was so incredibly and immensely private. And I will say.

 Yes, the unhealed parts of my mother would absolutely have hated the fact that I am sharing any bit of her story and anything about her. She really cultivated this wall of security around herself. She was in control of what was shared and to whom, and it was very important to her to keep things secret and to be as invisible as she could possibly be. She did not want people to know her business, but where that came from was her trauma. and from her unhealed parts that needed to be in control of how big her world was, who was a part of it, and who knew what in order to keep herself safe. That was 100 % trauma response.

 And that is not all that my mom was. And I think the parts of her that would be okay with me doing this are the parts that wanted better for me than what she had. And I will explain that a little bit more.

 As I said to you, my mom had incredibly low self -esteem, incredibly low, and it informed a lot of her decision -making, not only from who she picked as partners to be within her life, apart from my stepdad, because he's been pretty consistent and solid and good in her life.

But to how she felt about herself and how she related in the world, it was a big deal. And she always wanted that to be different for me. And she would tell me all the time how pretty I was and how proud she was of me and how much she loved me. And I believe that a million- million percent. She didn't always have the best way of showing it. She maybe couldn't always be the most validating, you know, you get a couple minutes to feel sad about something and then you got to move it along because if somebody wasn't trying to kill you, then you have no reason to be upset. That's basically how I grew up. You know, she was hard ass like that. She just was, but I know that she loved me and I know that she wanted better.

I think she also would want me to heal. She would want me to be able to ask for help. She would want me to be able to do what I needed to do to move through something. And that's what telling her story is for me. It's healing.

 The version of my mom I'm doing this for is the version of my mom who, and this is another little story, who, as I alluded to, I was married one time before my current marriage. for 11 months and I was 23 years old when I got married. My mom worked very hard her whole life when she was working to be able to buy house. That was another one of her ultimate goals and she met

It was a $50 ,000 house. She had so much pride in this place and she kept it immaculately beautiful. In order to pay for my first wedding, she had to remortgage this house. And I carried an immense amount of guilt about that because she did work so hard for it. And like I said, it only lasted 11 months and I felt terrible that she had to do that. I got to the point of unhappiness where I had to...say something to her about it. And I remember going there and taking her outside and sitting on the deck and saying to her, mom, I am so unhappy. I don't know what I'm going to do. I don't think I can keep doing this. And she said, Carrie Anne, who am I to tell you that you have to stay in an unhappy marriage? I've been married three times and you need to do what you need to do to be happy. And I support you in whatever that is. And she said, do you need a check?

for $75 to pay for your no fault divorce. And in fact I did, I didn't need the check. And so on that day, my mom wrote me a check for $75 for my no fault divorce after having to remortgage her house not even a year before for my wedding. That's the mom that I'm doing this for. you know, the one that would want what was best for me and want me to be happy.

So if you have any doubts about why, what my motives are, it's all because I care about her and I loved her and this is healing for me. Having to think about her story and work through some of the emotions has been really good for me over these past few days. And I've been able to feel some emotions that I haven't been able to get in touch with and I think that's been really good.

Working on sharing her story has allowed me to acknowledge a lot of the dialectics and how I can feel about my mom and dialectics, meaning that two things that are on opposing sides can be true at the same time. One of those things being that I carry this immense amount of empathy for her and everything that she had to go through and the trauma that she had to face and the decisions that she had to make and the loop that she got stuck in that she just couldn't make a different choice and being able to see. And on the other side of that dialectic is some of the anger that I carry as her daughter and the frustration around her not being able to make a different choice and the way that the things that happened to her impacted our relationship. And the fact that she didn't feel safe enough to get help at any point during her life, you know, to balance both of those things and to hold them at once and to know that one day I might feel more strongly one way and one day I might feel you know, more strongly the other and that all of that is okay, that's a part of grief. The other dialectic I think of when I think of my mom is that she is simultaneously the strongest woman that I've ever known and on the other side of that also the most fragile woman that I've ever known because she could put up with an immense amount of physical pain but when it came to the mental stuff she really struggled to sit with it and to try to work through it and she was complex just like we all are

And so in being able to share this story with you, which I really do appreciate, I've been able to work through some of the things that I feel about her and continue to feel about her. And it's been a really good process. So I appreciate you joining me all the way through and I hope that you got something good out of it. Cause I know I did.

 I'm not going to do a who asked me segment today. This has already gone a little longer than I thought it might. But if you do have any questions or if you have any comments or if you found this helpful or if you didn't, I want to hear from you. You can send me an email. That'll be in the show notes. I also made a Facebook group for the podcast and I'm planning on eventually at some point making a TikTok as well. As always, I appreciate you listening and if you stuck with me this long, then man, you guys are really great for doing so. I hope that you'll be well and take good care of yourself and I will plan to see you next week for a mini episode. Until then, be well everybody. Bye.