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WRESTLING THE MONSTER: LIVING WITH HEPATIC ENCEPHALOPATHY

September 16, 2019


Ok so Jenny your relationship with your daughters Yeah, we do things together. Again what did you ask me? I can’t remember what you asked me just now. It’s very hard to understand what I’m trying to say. Do you understand that? It’s like being lonely I mean and I don’t want that. The real day that I knew that any moment she could die, was March 2nd and I was going to a swim meet. And then I forgot my phone and I remember she had it. So I go, “Mom where’s my phone?” And then she just kept saying “What, what?” But she wasn’t like being responsive to us and I got really scared. Very surreal moment when you have to sit your 11-year-old down and tell her uh – explain to her that people die from this disease and that we’re doing everything we can to – to help mom. Last year on my birthday the doctor told me that I had cirrhosis. My liver got so bad and deteriorated, that i was told that I needed a liver transplant. In hindsight my wife had symptoms of this prior. We just weren’t aware of – of, you know, what was actually going on. I remember she would always like put everything away and then she’d say, “Zoe, where does it go?” I’d be like, “What? Don’t – you do this all the time.” I’m like, “Don’t you remember?” And then she says “No.” And there were things that I totally still don’t remember. I couldn’t help myself anymore and it was hard. So I kind of relinquished control. They help me ’cause I can’t help myself. At any cost I will do whatever it takes for my family. I didn’t expect um – all the emotions uh – that impacted me and my daughter. As the primary caretaker, the breadwinner and in some cases mommy put an enormous amount of stress on me. $1,200, $2,199. Here’s one for $87,445.00. They paid $2096.00 So how much, uh – I mean we’re behind what? I have to look at the explanation of benefits and what they paid and what they – what – what’s left over. I see you getting frustrated and, alright? No, I’m good. Okay. I’m not going to have a heart attack over this. Alright. Not today. Um – I’m just going to put everything together, put it on a spreadsheet, look at it objectively and um – and then we come up with a plan. The important part is you’re here, so. My daughter Zoe became most distant. You know, her social behavior changed. She was becoming depressed. She had developed a pattern of out of sight out of mind. Um – everytime we had to go to the hospital she wanted to stay home. The less she saw of it uh – the more comfortable she was. Trying to not let her fall into a total state of denial was a challenge. If I lost Deborah, I mean I’d be lost. However, as a parent I still have to be a parent to try to manage, you know, an 11-year-old little girl whose mom’s real sick, you know, whose dad’s heart’s broken. It’s tough. I woke up about Five o’clock in the morning in such severe pain that I couldn’t take it. It just felt like my body was shutting down and there was nothing I could do. I got in the car and we’re driving to the hospital and I just felt so weak and so at my end that I knew that I was dying. Had a liver not become available that day Deborah would be dead. My mom always tells me that I’m the reason why she’s still alive ’cause if I wasn’t there she would she wouldn’t have held on that long. Before HE I spent a lot of time working. After HE I spent a whole lot more time, uh – looking for time for activities, making time for activities with the family, Treasuring the – the moment. My Dad’s always – always with me And he’ll always be there. August 1st, Deborah will be 50 years old and to be honest with you we didn’t think she was going to make it. But I’m throwing her a surprise birthday party this Sunday and we are celebrating her life at 50 years. SURPRISE! Happy 50th birthday, baby. Oh my god. In reality not a lot of us thought she was going to make it to 50 and she did. She pulled through and it’s a blessing. Happy birthday, babe. Mike, can you tell me what caused you to call the ambulance? I can’t remember. What’s the last thing you remember? I don’t know. You don’t know? Okay. My Dad needs a new liver and that’s all I know about what’s wrong with him. I’ve heard people that were alcoholics before they die they go crazy. They put them in an asylum, you know, back in the days. I never heard of HE. I have HE. My ammonia levels go way up and it makes me crazy ’cause most of the time when they’re way up I don’t realize what’s going on. I’ll be doing something and I’ll kind of forget what I was doing. You can’t concentrate. My mom is really stressed out a lot of the time. She looks stressed out. She acts stressed out. She sounds stressed out. I think my dad’s stressing her out a lot. Being married to someone with HE is scary. You don’t know how they’re going to be from one day to the next. [YELLING] Smack you upside your head! This is typical. You’re typical. Typical bitch. And they get totally out of it where they don’t understand how bad they’re being and they won’t go to the hospital. He knows he’s dying. He’s not in denial about it. Okay, this was my living room this morning. It wasn’t like this. Mike was looking for something in the couch and this is what my living room looks like now. Taking care of Mike probably takes 75% of my time because Mike drops things, spills things. He blames everything on Joey. Joey did it. I don’t like waking up to someone laying on the floor or laying in the bathroom in a coma. You don’t know, Sandy. I know! Don’t take care of me no more then. You can’t take care of yourself! We don’t want to sit here and watch you die. Your son most definitely doesn’t want to sit here and watch you die. And that’s one reason he isolates in his room. He doesn’t want to see you like this.
You let it sit in the bowl. What? Your oatmeal! I ate my oatmeal. Stop fighting! Shut up! I wish that he would not yell as much. I hope that I don’t end up acting mean like him. Joey acts out and he hits. He’s angry, really angry. He has a problem having any friends. It’s really sad for Joey because Joey was the happiest, cutest little boy there was when he was little. I get lonely sometimes. My biggest fear is he doesn’t ever find happiness in life because he’s never happy now – ever. Joey, he’s not real open. I know that. Yeah I’m hard on Joey sometimes. I yell at him a lot. Maybe I shouldn’t yell at him as much. All I can do is keep trying I guess. If Mike wouldn’t have got sick he would have been a really good dad. I’ve seen him with other kids, he’s you know, years ago and he’s really good. I want to be what my father was not. I want to act a little better because my dad has a disease that makes him act like that. I want to show my kids how good of a father I can be and um – just be what I did not have. Maybe when he gets a transplant, he’ll be a totally different person. That’s what I’ve heard from other people. They said they woke up and they were a whole new person. Maybe that’s what I’m hoping for. Hey Sissy. Hey. Did you talk to mom yesterday? No. Did you talk to her? No, but I’m on my way over there so I’ll see how she is. Alright, I’ll call her right now. When she doesn’t answer the phone it freaks me out. It makes me nervous. Your first thought is, is she okay? Hello? Hi Mom. [UNINTEL] Mom, you don’t sound good. I’m confused right now. Yeah? Uh, yeah. It’s okay, Sissy’s going to go over there right now and check on you and if you don’t feel any better then we’ll go meet at the hospital, alright? Right. I – I had a smile that would get me in trouble always and I miss that. Not to be able to smile. I can remember my mom being funny and dancing and just this really strong woman, you know, raising us, raising our kids and being active, having an active life. She used to be the one driving everywhere. She would drive my grandma anywhere. She would drive my girls to school. I had a little car and here we go. Life was much simpler before HE. You know, my mom was able to do for herself, take care of herself and she was her own independent person. I remember that – that – that – that – point just him saying this is something your mom’s going to die from. And we’re just like we thought this was a bleeding ulcer. We were in the hospital and um – my mom was just being mean And that’s just totally not like her. And at that point the doctors had to get straps and they told us you know, we’re – this is for her. We have to strap her down. Where did my mom go? You know, we brought her home a totally different person. Since the first episode. my mom has been hospitalized numerous times, I don’t think that I can count. It’s like my life is being controlled and I don’t want it controlled. I don’t want it to be like this. I want my freedom. I think my oldest, kind of is aware of what’s to come and doesn’t want to get too close with my Mom. I think she’s afraid to get that closeness because she knows that she’s going to not be there at some point. And I think my middle one wants to make her better. From the littlest to the oldest they’re aware okay, we need to call 911 if grandma doesn’t wake up. My mom works I think 8 hours. Full time. So that kinda makes us responsible for watching over her. Say your grandparent is like sleeping in til like 1:00 in the afternoon. It may be small like for right then, but it could turn into something really big. Like it could mean that she’s going into a coma. HE is really serious and you need to know what to do like in case something happens and no one’s there. It’s scary because you never know what’s going to happen. I took my mom out to eat one day and two adult women followed her into the restroom and they come out, they are laughing. They said “oh, did you see her face? Oh my gosh. Did you see her? She didn’t have any teeth!” “Did you see that?” and they’re laughing. And she just came, she sat down and she ate her food. She never said anything. She just looked down at her food the whole time she was like so sad. And to me it was so hurtful. I’m going to get my teeth it’s going to open my doors back. I’m – I’m going to be able to smile at everybody. What do you think mom? What are you thinking? I don’t have to hide. You know, amongst all the awful things with her disease it’s definitely on my list of great things that have happened in our life. Hey you guys. You know me? You never know what the day to day is. You don’t know if you’re going to wake up and, you know, she’s in the hospital or you don’t know if, you know, if she’s just going to be gone. We saved her body, but now mentally, she’s not there anymore. Whatever days that or months or years that my sister and my family have with my mom that’s all is to enjoy it. We’re just going to enjoy the rest of the time we have. Today is June 21st 641 – no. It’s like minus 2 Sometimes you want to take away numbers and add to it. 4 and 2 is 6, so I said 642. But I know what I’m talking about as far as what time it is. There’s a tick tock. There’s only that one sound in here. Oh god, who does that with the horn? I was working at a job for 13 years in payroll, HR I managed hundreds and hundreds of employees. Highly functional. Highly multitasking. I started hearing feedback from coworkers and other peers, you know, Lynette you kind of asked the same question a couple times in that conference call. Is everything okay? Is everything alright? I would tell them I was tired, or tell them, you know, and I knew otherwise, but I didn’t know what to call it. I just knew I was slipping. Something’s changing at work. I’m having to have post-it notes all over everything. I’m having to do different – something was changing, changing. Fatigue, disorientation, aggression, depression, insomnia. oh my god. This is exactly what I’m talking about. Since when did tolls go up? 75 cents. 50 – I mean 30 30, 75, 30 oh my god. 45, 6, 75. Oh my god. Well that raised it. HE, it stole everything and continues to progressively take from me. I don’t think she needs to be alone anymore. I think she needs a caregiver, 24/7. I think she needs to be driven to every appointment she has. When she wants to go to a grocery store, I think she needs someone to be with her and drive her to the store. Because of HE Lynnette has kept me from her doctors. She didn’t want me to know. I come here and I’ve absolutely threw down the fact that I don’t want anybody coming. I know. This is my first time here. In 4 years. I know that. And you’re my right – you’re my wingman. Who wants to show the effects of HE? No one. You’re locked within yourself, and your family can’t unlock you. It’s like something else is taking over my sister, that’s not my sister. 3 to 4 and mute. To 6 to 7 minutes. Till are you okay, Lynette? You okay? [WHISPERING] How long has this been going on behind closed doors? Is this the worst or is this just one episode that I was allowed to see? What is she not telling us? What is she not able to tell us? What does she not remember? Those are my concerns; uh – what HE is doing to her behind closed doors. I want to be there for her, but sometimes you wonder what do I do now? Now what? The monster is not – is not the root of me. The monster is the root of HE. It’s not going to end tomorrow, it’s not going to go away. We’re always going to have HE in our life, and we’ll take it, but it’s definitely forever.

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