Sundowner's...My Old Foe

Hello, midnight talkative hungry mom. Sure, I'll be happy to make you an English muffin pizza. I have a ridiculous infection and have to be up early, but sure...Oh you want to chat, too? Sure, dear...call me again and tell me about how you don't know what you don't know and talk in nonsensical circles. Please, stand at my door and sway like you're drunk and tell me you're dizzy. Yup. That's how I want to spend tonight.

Oh I do hope she's down for the night.

Anger Lowers IQ Points, Example # 27962

Mom threw a fit this morning. Long story short, the conversation led to her hating herself, unjustly, and me praising her, but her anger wouldn't let her hear me anymore.

Me: You're a great mother.
Her: What!? [very angry]
Me: You're a good woman.
Her: You think what you want! [in a snide tone]

She proceeded to her bedroom and slammed her door shut. Point is; we tend not to listen when we're angry. =P

Down Doggy

Yet another rough day in this house. I've only been upright for about five hours and am already totally worn out. Mom was super sweet today. She even made me "breakfast"...at 4 pm. She scrambled some eggs and reheated potatoes that the wonderful caregiver cooked. And that was it for her....she started gagging and hasn't stopped since. We were going to have the PT guy over, but mom can't stop gagging and throwing up bile. Due to her roux-en-y in 1995, she can't really throw up like normal folk. Sometimes I wish she could. I wonder if it would help stop the nausea.

We're sort of pathetic, but I'm happy with how we're dealing with this. We're trying to take one step at a time, and helping each other. I got the clothes out of the dryer, and mom said she'd try to fold them tonight, so they're on her bed. It's like I have no legs and she has no arms. A sad little duo helping each other, holding each other up. I am too sick to drive, so I didn't get to run the few small errands I was supposed to, but maybe tomorrow will be easier. I wish this cough would stop. I feel it in my chest but it's just not coming out. Feels like I'm drowning. Sucks.

No neuro today :/

Mom has been gagging and vomiting bile all day. Had to reschedule the neuro appointment, again. They threatened her that if she doesn't show next time, they will refuse to see her. I'm gonna have to set them straight on that, because it wasn't her choice to cancel the last several time. It was her jerk doctor who refused to do his job and get the referral, and that's not on mom. I'm losing patience with folk making my mama feel bad and threatening her with stuff.

Neuro appointment has been moved to the third week in march. That was the soonest they had available. We need an EEG to verify if what she had in the hospital in november were seizures and if they caused any damage. We're also trying to figure out why she has the hard blink, if her babbling is part of HE or not, and coordinate with the neuropsychologist to define or at least estimate the extent of cognitive impairment already caused by HE. From there, we can work with psychologists and neurologists to help mom regain some cognitive function that she's lost. It's called cognitive rehabilitation. She'll never be the same person she was, and she'll never be as functional as she once was - no more solving mysteries for her - but I hold out hope that she'll be able to make informed decisions easier and have a clear understanding of them. I also hope she'll feel (and be) more independent and not be tricked or scared so easily (especially in reference to those aforementioned folk who like to threaten, harass, and scare my mom with their lies).

I'm feeling a bit better and getting some of the gross out. Which is good, because I'm off to find some ginger tea for mom. Seems to be the only thing that helps settle her stomach.

Hi to the new folk!

It's amazing to me how simultaneously unknown and common liver failure is in today's society. Every few days or so, I find myself explaining HE or liver failure to strangers in public. Completely random, and I don't preach on a soapbox, but when people hear my mother is essentially bedbound at such a young age, they naturally ask the nature of her disability. It never fails that someone walks right up to me with a story of their own; their mother, their sister, their friend, went through hell with liver disease. And they always nod at me, saying something like, "he was a like a different person", "the mood swings were so weird!", or, "it was horrible, what it did to her." And every one of them saw how it affected the family, not just the patient. So far, I had only been carrying small scraps of paper with this blog site on it. I'd give them a scrap and tell them to check it out. Now I have actual business cards. Yay. But the point is this: you are not alone. And neither are myself and my mother.

So welcome, new readers. Hello Trinda, who sells really fun jewelry. Hi random teenage girl from Staters, whose mother was gifted with a transplant just in time (isn't it always JUST in time?). For whatever reason, people don't comment, but I promise it's allowed. And if you want to share your story, feel free. And if you want to support liver research, take a walk with me and the American Liver Foundation at the San Diego Zoo in May. Just click the link at the top of the page to register. Can't wait to see you there. :)

My Cat Loves Me...I Hope...

When does the licking change from kitty kisses to tasting in case I die in the night?

I can't wait til someone else takes over Mom's stuff. She thinks that she got an approval for a hernia surgery...not a consult...surgery. Hasn't seen a doctor about it, hasn't had any pre-op anything or even discussed it, but she says the insurance company approved both the consult and the operation. Riiiiiiiiiight.

Oh and she's mad at me for not being able to make verizon give us a $100 plan for $70. How dare I. I mean, I have all these magical powers and don't lift one fantastic pinky to force a company to be as confused as she is. I have to say I find it hilarious that she thinks I can make everyone bend to my will, considering I can't even convince to take off her jacket when she's cold in the car. She just turns the air conditioner on higher. That woman's gonna freeze me to death.

And that's when my cat will eat me.

Tattle Tale

Mom somehow convinced the physical therapist to go to the store for her. Conversation as follows:

Mom: I'll probably have him get me ice cream, so don't go telling Aneita.
Me: Did you just ask me not to tattle on you?
Mom: No, just don't tell her.
Me: Why would I tell her?
Mom: Because you tell her everything! You run to her and tell her every little thing and I don't need her telling me what to eat and what not to eat.
Me: I do not run to her and tell her everything. She tells you what to eat and not eat because she's a caregiver and she cares about you and you're lactose intolerant with a growing hernia and building pressure in your belly. Doesn't ice cream give you gas? Seems to me that with all your GI issues...I wouldn't poke the bear is what I'm saying. I'd we happen to have the same opinion, that doesn't mean I ran to her. It means we both care about you and want you to feel better. Maybe she saw you eating it, or the empty containers in the trash.
Mom: I only eat it at night. And you know I'm going to quit soon.
Me: Wait, wasn't it the last time she was over, you were saying how I had to go shopping because you were out of ice cream?
Mom: I could have meant popsicles! She doesn't know!
Me: Popsicles are not ice cream. Hahaha! I think you're just trying to think of a reason to get mad at me.
Mom: I am not! You keep your mouth shut!
Me: Okay....I won't tattle on you to Aneita.

Mom stormed off into her room, angry and hollering something about how we don't care about her. She gets grumpy when it rains; her pain is greater. She was really angry that I didn't cancel the physical therapist even though she told me to. She was upset that I didn't listen to her. She couldn't admit that, though, because she did feel better after pt and if I had canceled, he wouldn't have been able to get her precious ice cream. So she found another reason to gripe at me.

Aneita's going to love this story. Mwahaha!

The Hokey Pokey

I'm very sick right now. Likely just a simple cold that teamed up with my weakened immune system to form a sinus infection. They're my specialty, it seems.

Mom is struggling to take care of herself. She can't find food and we're getting random people to get her juice it up and yogurt. She convinced her physical therapist to go get her yogurt and me some imitation nyquil. Yesterday, it was my bff that drove a half-conscious me to get juice it up. I'm grateful for the friends and people in our lives that bless us when we're in need. The house looks like one on buried alive, I can't smell anything, but I'm sure the litter needs to be changed...I'd air out the house but it's raining. Mom's bones hurt in the rain, and honestly, so do mine.

I'm sure after some rest, I'll be back to normal. Well, normal for me. Normal, I've learned, is a relative term. For instance, most people don't celebrate when their mother has a bowel movement, but life offers endless opportunities to adjust your perspective. I've been evaluating those things recently, in fact - opportunities and perspective. I was most recently involved in organizing a nonprofit event. It was an opportunity for personal and professional growth, and I learned far more than I expected to. Though the cause was more than worthy, and the passion was there, the customers weren't. It was financially a flop, but I choose not to see it a failed venture. I learned so much and spoke to so many new contacts that it was worth it at face value. I also found that I truly love nonprofits with heart. I gained a lot of knowledge from the effort I put into the event, but the big fat hairy deal is that I really loved doing it. The cause...I pictured women wanting to get clean, trying to remember how their life turned into the complete disaster that surrounded them. I saw them look at their children, wish for a way out, and know of none. To choose between your kids and getting clean...yes, this cause was worth it. It still is. And in time, this misadventure will prove to have been a minor bump in the road, at worst, and at best, a wonderfully enriching experience meeting great people and opening doors that will eventually see the sober house to fruition. It's perspective.

I think I want to do this for a living- a liaison between nonprofits and the people and corporations they need on their side. It's very exciting to have a new goal in life. To find my niche. My place.

I was put in my place by mom's therapist at the hokey pokey clinic. I asked him if we should talk, to give him another perspective on mom's behavior, since hers is so skewed by her memory and cognitive impairment. He asked what information I could offer that would help him to help her and I told him how she tells the doctor that the anxiety medication isn't working, yet she hasn't had a crying spell in over a month, so it must be doing something. He said he didn't think that would be helpful, because if he was feeling anxious and someone was telling him that he wasn't, he didn't know how he would respond. I earned that bruise on my ass myself, thank you very much, by falling off my high horse. I am humbled and reminded to put myself in my mom's shoes. Should've seen it coming. I'm too old to behave like such a jackass.

My place seems to have shifted yet again. In my thinking, which is a lot of what I do when I'm sick, because I haven't the energy to do much else, I thought about this blog. The original purpose was to keep my family apprised of Mom's health, as she was on hospice and I was attempting to keep a straight face while working, wondering if I would come home to her on the floor again. Over time, it's become a place to disclose mom's condition, raise awareness to the general populace of these illnesses called liver disease and hepatic encephalopathy and the destruction they wreak, and offer a daughter's perspective on how they affect our lives on a daily basis. I've realized this blog was always for myself and not so much for mom. We're in it together, for sure, but "Kathy's Page" doesn't seem to be an appropriate name in this light. I haven't yet decided what to call this page, but it'll have to change, and soon.

As far as mom is concerned, she isn't well, but she never is. Her hernia is growing too fast for my comfort zone, so I addressed it with her primary and he referred her to a surgeon for a consult. She's gaining weight, which is weird. After several years of her losing weight for no apparent reason, she's actually getting a little chub. She had her catheter changed, and this one feels much better than the last one, but the bag is the kind that twists closed. Which means there's an in between "open" and "closed", which means that sometimes mom's knee pees. People don't get the humor, but you have to laugh at this stuff. It's the perspective. Some people will read this and think, "ew, there's pee where pee shouldn't be and how embarrassing." Those with an altered perspective (i.e. those with a twisted sense of humor and morbid outlook on life) will read this and think, "hey, at least it's a change from pooptalk, and now my prom story doesn't sound nearly as bad, and I can tell my uncle that someone else also pees into a bag and sometimes on the floor." Plus, there was a little rhyming there, which reminds me of Dr. Seuss, whose imagery fits our lives in humorous ways. This illness leaves no room for pride, no time for privacy. Medication makes choices for my mom that she wouldn't. I choose to stand by her when she squeaks in public. I choose to clean up after her when she makes a mess. I choose to let it go when she's a jackass in public and people look at me and wonder how I put up with that attitude. It's because they won't be there when she says something that makes me laugh so hard I wish I had a pee bag of my own. I choose to be open to learning from her and listening to her, and being put in my place by her therapist. My mom is far from perfect, and I may be farther, but in the grand scheme of things, perfection is overrated and I can't recall anyone laughing at perfection.

I'm hacking up a lung, so I'm wrapping this up now. Ow.

Logan Makes It into Mom's Sleep-Convo

A few weeks ago, I attended what I call a dirty girl party. Turns out I'm a prude, so I went with comedy and developed an imaginary slutty version of myself and answered as she would have. I was describing the fun at the party to Mom after I got back, which was around midnight. Conversation as follows:

Me: we played a kind of bingo where we picked 5 numbers between 1 & 20, and then write down a phrase you say during sex. So my phrase was, "it happens to everybody..." That's funny, right?
Mom: it does happen to everybody. That's funny we were just talking about that.
Me: wait...who was talking about that?
Mom: we were. You were just saying how it's medication and talking about it.
Me: ok, I don't know what you're talking about anymore.
Mom: about the facebook.
Me: what? OK, I think you're way too tired and should go to bed now.
Mom: you were just saying how Jenny wrote on facebook that she was your caregiver and talking about it.
Me: what?! Ok, I said none of that and you're not making any sense. Go to bed Ma.
Mom: are you getting up early tomorrow?
Me: why would I do that? It's 12:30 am and I'm so sick I'ma die.
Mom: well sometimes when I'm up late I get up early because Logan said about the referrals.
Me: okay, so I'm not getting up early and you are going to bed now. Goodnight.
Mom: goodnight...I can't get my pen to work.

So you see, it's important to keep a sense of humor. Mom has no recollection of this, but I actually typed the convo out at the time and saved it as a draft until now. I've been very busy lately, but things are picking up again for the show season and I'm even getting business cards for Mom's blog! Remember to join team kathy at the liver life walk. Just follow the link at the top of the page. Witness feeding time at the san diego zoo and feel warm fuzzies for the good deed you've done for those in liver failure who can't walk themselves. Be good to each other.