Rough Week

Mom is not doing well. Actually, she is horrible. The Xanax keeps throwing her into panic attacks and instigating HE episodes. We are weaning her off of it, but we have to move so very slowly to avoid withdrawal symptoms that she won't be off of the stuff until well into 2014. She freaked out so much while I was at Rosh Hashanah, even with the secondary caregiver there, I had to call the cops out to talk her down. She was stalker-calling me. Ten seconds was a grace period. Crying, hysterical, terrified, demanding meds and food but not eating and not remembering she had already had her meds. Upset that everyone "blames" her when she doesn't remember doing things. She is having very big issues dealing with losing her mind. Who wouldn't?

She fell again last night. 2something in the morning. She said she was taking a shower and tripped on the tub. The shower is still broken from her big fall last month and she was in her dry pj's, so I'm doubting her story. I'm not sure if she has a concussion. She isn't making sense but is scared and panicky and won't go in voluntarily. This morning around 7, she called me on my cell and asked for Aunt Nola, then swore I called her. She thought we stayed up talking til after 2, but that was my story with my friend and was Friday night/Saturday morning. Then she said she must've heard us talking because she remembers hearing another voice, but I met them away from home. She really is...somewhere else. 

I have a plan. I'm going to ask her doctor to admit her into a rehab ward in the hospital. They will cut her off Xanax entirely, but medicate against withdrawal symptoms) she had seizures last time) and monitor her so that I don't have to worry. I think it'll improve her mental cognition drastically and improve her quality of life with far fewer panic attacks and HE episodes. Her manometry is Tuesday, so we can tackle the swallowing issue, and maybe she will be able to enjoy eating again. We are also moving forward with the Medi-Cal process. I'm hoping that will open doors for her and help is to afford her medical expenses. PLUS I talked to UCLA and there was a little miscommunication between them and the insurance. After getting them talking to each other, I can make an appointment early next week. Woohoo!!

Deep breath. This is just the beginning. 

I NEED YOUR HELP!! CALLING ALL BIG HEARTS!

I NEED YOUR HELP!! PLEASE consider donating to this fundraiser. I'm supposed to secure the venue TODAY and only have 20% raised to do it! I'm risking losing the venue altogether! :( Please go to onenightstandfundraiser.blogspot.com and donate via PayPal. It's safe, tax-deductible, and it'll let us have a great time at the charity auction where all these wonderful artists are donating their talents for the American Liver Foundation. Desperation is kicking in! Ah! A million thank yous!

Caregiver solutions

Just finished a three hour assessment with a nurse from caregiver solutions. She will write up an evaluation and make recommendations based on mom's needs. In about a month, we'll have the results of her assessment and a list of local resources that would fulfill those needs. The researchers try to find free or cheap resources, hopefully some that are covered by insurance, but the decision to utilize what they've found is our decision. I hope this pans out to more help. We'll see in a month!

It was weird, when mom was talking to the nurse. Time was turned upside down for her. She swore her sister died in the 80's (she passed in 2008), and that she had a relationship and a fall a year ago (I was a child). She's had her moments where time is morphed and stories are mixed up, but this was worse. I tried to tell the nurse that this was confused, but I'm not sure I got the point across. I was trying to tread carefully as Mom was already in her post-xanax grouchmode and hating everything I had to say to the nurse, even when I agreed her. She even chastised me for apologizing to the nurse when I squeezed by her to get to the kitchen; she accused me of apologizing on her behalf and demanded to know what she did wrong. She took grouchmode to the next level, which requires expletives to define. =P

GREAT NEWS!!

Lots of steps before we get there and no guarantees, but every journey starts with that single terrifying step. I'm thrilled and feeling so blessed! Mom is panicking - she feels like it's coming too soon and it is major surgery. Understandable. Hoping she will see how amazing this is and keep going with the process. Cautiously optimistic but celebrating this small win!

Moving Forward

Unfortunately, we have to put my mamadog down. That's sad enough (I got her when I was 17...she's my baby mama), but it costs so much that I can't afford it. I've reduced the prices of some things to try to get the money. Nothing so far. I really hate the life Stubbs is leading right now. She is medicated for pain, but I can't stop her from having episodes of syncopy between her heart murmur and CNS problem. I feel horrible and it sucks that she can't be her happy puppy-like self. The meds make her sleep most of the day, and I keep her separated from the other dogs so they don't incite an episode. 

I'm also moving forward with the One NightStand Fundraiser. I need to raise about $400 to pull it off, but the first step is the insurance and venue (which will take half that budget), so I'm looking for sponsors and donations. Anything helps. 

fibered life is now on Etsy. Please stop by and check it out, share, love. I really need some money to come in, so pimp it like you mean it! http://www.etsy.com/ca/shop/fiberedlife

Still waiting on UCLA. They asked for blood tests, which we did Friday. Cross your fingers and pray they let us move forward with the transplant route. 

No Jackassery Tolerance Policy

I finally got rid of the migraine from last night, so I was feeling pretty good today. However, I'm in a mood where I've simply lost patience with people who don't treat each other right. I have a no tolerance policy for being a jackass.

First, we had to get a blood test for Mom. Some gross guy, wreaking of stale cigarettes and poor personal hygiene, made 3 very loud phone calls in the waiting room, oblivious to anyone around him and their constant "what?"'s from his booming slur in their ear. I asked him to take his conversation to the hall. He was shocked, stated, "it's a business call!", as if that would make it more appropriate, but went into the hallway. The old chicks near me said he glared at me and there were daggers from his eyes when he came back in. They were grateful that I said something; they were afraid to speak up.

Apparently I can't go anywhere, because some mean jerk of a woman pissed me off something fierce at the pharmacy. I was waiting in line when a woman got behind me in line. A girl, looked to be about 12, was with her, but sat against a pillar on the floor and listened to whatever gizmo kids are into at that age. The woman said, "Get off the damn floor and go sit in a chair!" I looked at her, because there's no reason to curse and yell at a kid for something so small. Then she yelled after the girl - "Idiot!"

Oh yes, she did. And, no, I was not having that. I told the girl that nobody should call her an idiot and she doesn't need to listen to that woman's opinion. The girl said it was her aunt, and the dismissive tone told me she always treated her like that. The aunt came over and asked what was going on, and I told her not to call a child an idiot, especially in public (though doing it in private is no better). She told me not to tell her how to talk, and I told her she was disgusting and should be ashamed of herself. She said, "Oh well." If I was getting glares from Mr. cell phone dude, imagine the glares this woman got from everyone in the pharmacy after calling a kid an idiot in public and loudly defending her decision to do so. At least I was trying to be quiet about her abhorrent behavior; she had made a scene.

I don't understand why people are so rude. Conduct yourself with some respect and dignity. Be respectful of those around you. How is that hard? Why do I have to feel like I'm an 80-year old woman smacking peeps with my purse and telling them to respect their elders? Note that both jerks seemed to be on the sauce, and I'm befuddled that they consider this normal social behavior and more than concerned that both would be driving and the woman would be with the girl in the car. Just be good people! Stop being jerks! Gah!

Tyrants and Tantrums

Last night I gave Mom her nighttime meds; oxy for pain and elavil for sleep. She is supposed to wait to take the elavil until she wakes in the middle of the night. The doc said that taking multiple sedatives at once is contributing to her HE episodes and even instigating them. Even so, Mom is so used to meds that taking what would knock out a horse barely takes the edge off the pain. The way she was acting last night, constantly asking for more meds and accusing me of withholding them, I assumed she took them at the same time and was having an HE moment. 

Nope. She came to me at 1:30am and asked for elavil. I told her I already gave it to her, but she argued that I hadn't. I finally went to check and it turns out she hadn't taken it. We both learned a new lesson; she learned to listen when I'm trying to tell her where I put her meds (she was so angry that she was hearing without listening), and I learned to double check that she takes what I give her and doesn't overlook meds she has access to. She was cute, though, when she was apologizing and telling me she just has to get used to this med management thing. It's new for us and I'm trying to make sure she gets what she needs without seeming overbearing. Hard line to walk. 

Also, whatever Mom told them in the hospital instigates yet another safety visit from APS. It was so hard not to laugh when the social worker pulled up. She called the house and Mom answered (on speaker phone, no less) and was instantly irritated by the existence of a human on her property. The worker was asking if I was home and trying to figure out if she could talk to Mom alone, but Mom was annoyed at the insinuation. The worker even asked if Mom was angry at her, and Mom said no (though she was using that tone that says yes) and that she thought the worker was mad at her. Eventually, she convinced the woman it was okay to come inside, even with me home, and we had another elephant in the room discussion. The kind where they stare me down and try to figure out if beat her or not, and try to make it seem like they're okay with me, but refuse to smile at me because they don't want to be nice to me just in case I do beat her afterall. Hi, awkward. Mom kept joking about how I'm a tyrant and I make her pick a switch off the tree to beat her with and I had to explain that the lady was going to take it seriously. That sort of shocked Mom (kinda cute, really) and she started talking seriously after that. The worker got a taste of Mom's version of "talking things out". Everything the worker said that could help the way we communicate, Mom would rebut with why that won't work or why it pisses her off. In the end, we did manage to get her laughing, especially when she asked Mom to sign a form stating that she was okay with speaking in English and Mom went on a rant about how she "isn't racist but those damn people should learn our language" and "they're stealing our jobs" and "if I went to Germany, I'd have to learn German!" I couldn't stop laughing. It was so fricken hilarious. My Mom was fricken Estelle Getty for a minute there. The worker started laughing and left after that, but it did take a few minutes to get Mom calm enough to sign the one piece of paper. 

For reals, I think I snorted laughing so hard. 

UCLA is still trying to get records to make their decision. Loma Linda oddly sent them records from 2009, but not any other year. Mom's GI sent her records, but maybe I got the fax number wrong, so I gave the phone number to UCLA to see if she could figure out where I went wrong. I talked to ALF yesterday, and they're totally in for the One Night Stand event and I'll talk to them about it more at the liver conference at the end of September. They did give me some dr names that I'll meet at the conference and that work UCSD, which is closer to us and our GI's first choice to send us to. I'm wondering if the problem with the records is G-d's way of saying we should try again for UCSD. My heart does drift in that direction already, since synagogue is there and the hospitals are amazing and the liver life walk is held at the San Diego Zoo...just seems to be a liver disease-aware community. This area, not so much. And UCSD is a good two hours closer to us; I really don't know how Mom would be able to make the drive to UCLA in one piece. I don't know. More prayer before I make a decision on that, I guess. Oy. 

FYI, Mom's med schedule is exhausting for both of us. She takes something at 6, 7, 8, 9, and 11am, then 3, 4, 7, 8, 9, and 10pm. And that's if she sleeps through the night. Trying to not combine sedatives is very difficult and her aciphex can't be taken with anything else. I hope the upcoming dr appts tomorrow and Friday help us figure out a better schedule. I can barely function on the sleep I'm getting. 

Act Now While Supplies Last!

Mom is being so sweet, I hardly know what to do with her. She's babbling, but it's mostly positive babble. She wants to be the face of liver disease and help other patients. She thinks that she lost herself when she lost the ability to help folk and started to need help herself. She also said that she needed to learn how to accept help (shocker). She's letting me dole out her meds and not seeming bitter about it.

She also said she has a tick in her pee and a screen door in her brain. She specified that it was an old-fashioned screen door and not a security door. She's telling a social worker (on the phone) that she wants to show people that they don't need to be homeless and eat the dirt off the ground. So...ya know...no idea if she knows what she's saying or how long this will last. Get loved while you can, it might be a limited time offer!

I Hate You, I Love You

After a while, Mom came to me this afternoon, very talkative. It appears she had a spiritual awakening in the hospital and decided that we're both crazy and, while we may be mean or "do bad things", we've always loved each other and still do. I'm not excited about the way she makes us sound like a married couple, but she's being sweet and cooperative and seems to be okay with me monitoring her meds. She even said we could balance her checkbook and take care of the bills together tomorrow.

I'm starting to think that there may have been an invasion...of the body-snatcher variety.

I made some snacks for her to have in the middle of the night. Put them in her fridge. I should really keep an eye on that thing. She had one and a half pb & j sandwiches wrapped in a towel that was horribly gross and appeared to be the same towel she keeps cleaning up spills with, another sandwich in a gallon-sized bag with an entire pack of provolone cheese that had been opened (note: Mom doesn't like provolone...she stole my cheese) and already started growing something that belonged in a lab, and *my* peanut butter. Mom has her own peanut butter - Simply Jif - and it only has 65mg of sodium per serving. Skippy's mine! That hooker stole my peanut butter.

She just admitted to hallucinating. She doesn't know what's real and what's not. She said whatever is wrong with her is "not gone." Methinks it's time for her to go to bed.

Home Again

Brought Mom home from the hospital this afternoon. She is more than a little irritable and her mood is very unstable. I don't think she should be home, but I don't have a medical degree, so my opinion means nothing. 

I was hoping the hospital social worker would arrange solutions for home, but I'm told that is not her job. She arranged for home health to come out to the house, and I've been informed that Mom's meds will be managed by whomever they send. I'm tired of the ignorance here. This is not, I repeat, NOT a "family dynamic" issue. This is a medical issue. If Mom had simple dementia from Alzheimer's, the medical team would never question if she needed help with money or meds. They'd be offering help left and right and she would have more care and more understanding than she would know what to do with. But she has this mysterious illness with a long name that her non-nurse daughter talks about as if it's real and all they do is fight. So it must be a family issue, right?

She was weepy on the way home. Apologized for "doing what [she] did after [I] said we were in this together," even though she won't tell me what she did. She said we have each other, apologized for my life revolving around her, and all sweet until we got to juice it up. Then she thought I yelled at her (I didn't) and demanded an apology, and didn't make it home before throwing a hissy fit. The bag with her shoes from the hospital fell into the trunk from the back seat (I have my seats down from the last craft show), and I told her I'm going to look for her shoes, but I only have so many hands. Somehow, she thought I said, "get the f#%k out," and started screaming about how I don't give us a chance. Then demanded three sedatives at once. I gave her one, she threw another fit. 

I don't know when this med manager is coming, but soon would be nice. I'm always the bad guy. Btw, nobody will do anything about her money management. That must be a "family dynamic issue." 

I haven't told her that Mamadog had two medical events while she was in the hospital. The meds aren't working, and I can't see her in pain and terrified of what's going on, so I'm afraid it might be fair to her to put her down. I'll hold off on telling Mom for another day or so. She has enough stress from imaginary HE-visions, I don't need to add reality immediately. 

Reminds me; I need to delete that Cupid profile. Dating would be lovely, getting to know another human and have fun and maybe hold conversations above the third grade level. But how can I, in good conscience, pull some poor fool into this whirlwind mom-centric hospital-familiar sanity-not-required life I lead? And the chances that he'd be Jewish are pretty slim. Maybe in another few years, after Mom's transplant and given that I recover well afterward. They say 50 is the new 30, so I've got time, right?

Oh just lie to me. I need it today. <3

Hospital and Home

For those who don't know, Mom was admitted to the hospital monday through the ER. Technically, it was for "altered mental status." This is the third time in less than a year. Aft this point, she didn't even make it four months before being hospitalized again.

Lab tests showed her potassium level around 2.8, which is low enough for a heart attack. They also found that she had applied two fentanyl patches, which could have killed her. Her GI believes (and I agree) that her xanax triggers HE episodes and exacerbates her liver condition.

They gave her potassium and monitored her meds, making sure she takes her kristalose. Her potassium level is back to normal and she is *mostly* back to herself. That means her ammonia level is coming back down, but we've observed that her xanax causes her to become groggy, then seriously grouchy and straight up hostile. She was back to her pleasant self today, but after her xanax nap, she started getting angry at me and threatening again. It was also sundown, and I think sundowner's does play a role.

The doctor plans on releasing Mom tomorrow, as long as her labs are normal. We're trying to work with a social worker. I'm demanding medication management and money management (if she won't let me do it, *someone* has to protect her. Otherwise, we're just going to come back after she takes too many pills or puts on too many patches again. This cycle will repeat until her luck runs out. I don't know how much longer every doctor, social worker, physiologist, insurance home health care aid, etc, can pass the buck and expect this woman to survive. I'm so tired of this crap I can't see straight.

Hoping for a brighter tomorrow!

Dread

I've been wandering around today, trying to figure out what to do, how to help, how to feel. It's hard to focus, hard to plan. I feel the crushing weight of the inevitable.
I feel like there's been a cave in. We are trapped, have already screamed for help. Our throats are hoarse and the air is thin. I feel like we are just waiting for the oxygen to run out.
Dread. I feel dread. Finally found the word that fits the feeling.

Honestly, that sucks. I'm making calls tomorrow. I'm taking mom to the doctor and we will sit there until they do something useful or forcibly remove us. I'm going to call the resource the mpd gave me and see if they can do anything. I'm going to call ALF and see if they have an educational program for emergency response teams to recognize liver disorders and hepatic encephalopathy. I'm going to take care of mom and plan for this to not happen to someone else's daughter.
It's 3:30 am, I'm exhausted, and I just decided to take on the concept of an entirely unknown and misunderstood class of illnesses. So maybe bed first, before all the ass kicking.

The Neverending Day

Mom just keeps getting worse by the day.
Yesterday, she couldn't stay awake for more than five seconds. She slurred all her words. She feel asleep on the toilet again. I asked her how she felt, but she was non-responsive. She just stared at me. This is going to get worse, and I don't know if it'll get better afterward.
I called the EMT's. They came - she was still on the toilet, forty minutes later. She screamed at them that she was okay and to get the expletive out of her house. They obliged, saying, "when she passes out, call us back." When she passes out, it'll be a coma, and there will be no waking up.
I moved her sedative medications from her bedside to the kitchen. I'm afraid she's taking too many pain killers and she seems to be confused about what her sleeping pills are for. She was also warned several times about taking all three at once, but I think she still does it without thinking, which continues to her foggy mental state. She demanded her meds back. I refused. She called the cops (after a struggle to figure out how to use the phone). They came, we all talked, and they gave me a pamphlet on a program for caregivers that they said could help. They said it was clear that this is a medical issue and that I didn't actually take her meds anyway. They even declined to tell her that the meds were on the kitchen bar. Mom now thinks I have "buddies" on the force.
It's so odd, the way she carries a conversation. She threatens to kick me out, then asks if we can "talk it out", then demands something that doesn't make sense, some gibberish (ex: she said she knows that I think she's addicted to door knockers), then gives me thirty days to move, then a week, then asks me to figure out how to use her cell...at one point she said she was going to break my door down (which was unnecessary because I was in the living room and my bedroom door was open), and that she was going to call the cops to tell them that she'll break down the aforementioned door, and she'd call them until I'm "blue in the face." There was such an internal struggle. She was nice, then threatening, then sweet and aggressive, then confused and angry and asking for help. She said that she felt I had stopped loving her because I've been giving her things she isn't supposed to have (i.e. restaurant food, fast food). She found her meds near the end of the night, asked me when I gave them back, and refused to believe that they were there the whole time. I prayed she'd wake in the morning, but I really felt like tackling those sedatives away from her.
She woke today around 8am, asked if I was moving out, then went back to bed. She's been just as sleepy, but today...she's wandering. She's lost. She said she felt weird and asked if I would take her to the hospital later if she didn't feel better. She didn't, but I asked every few hours if she felt she needed to be in the hospital. She said she knows she needs to go, but she's scared, and made me promise that I wouldn't let her go without meds and go into withdrawal seizures again if she went into the hospital. She kept stalling, saying she'd give it more time to feel better.
She took her regular meds at the wrong times again. I think she gets the alarm confused with the cell phone; she takes pills in response to a ringtone. She said she feels stupid and that she doesn't understand how it keeps happening. She said that if this keeps happening (I think she was referring to the confusion and forgetfulness), that she was going to take herself out.
Logan came over, spent just a minute with her, and left to get his daughter. I worry about what she may have said. Maybe he really was just in a hurry, but he never rushes the way he did tonight. Practically ran out.
After Logan left, she decided she was feeling okay and didn't need a hospital. She hasn't eaten since this morning. She's starving, but won't eat anything I give her. She gives it back, says she's hungry and needs to find food, stares in the fridge, then wanders. It took her twenty minutes to put ice in her water jug, then tried to put two lids on the jug. This is not okay.
I'll be calling her doctors in the morning.

The Giveaway, Take Two

Okay, third time's the charm for the blog? Maybe? Maybe not? Let's see!

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Soap Sock Giveaway...Hopefully...

I'm trying out a new app to be able to have promos and giveaways on facebook. This is the test run. Win a soap sock! Every like/share is an entry. Thanks!

http://bit.ly/14gF1rb

And she fell again...

That giant thunk I just heard was Mom falling face-first into her shower. She said her legs gave out because she couldn't feel them. My thought is that she fell asleep on the, um, throne, and not all of her woke up. Doesn't look like she broke any bones, but I'll see how she behaves in the morning.

We will, however, be needing another shower curtain rod. Somehow she not only bent, but ripped the metal bar.

Deep Sleep

I think I figured out why Mom has been exhibiting HE behaviors - she has been taking neurontin after the doc told her to stop. He prescribed it as a sleep aid, to kill the fibro pain to allow her to sleep. She has been using it far more than that. As PRN meds are one of her independently-controlled things, I have no clue how much or how often she takes it. Now she can't find the bottle. Oy. 

Trying to convince her to stop taking it is difficult. It means sleep and less pain. It also means that it compromises her cognitive function, which is both why I want her to stop and another reason she doesn't understand why I would want her to stop. It doesn't appear to help her pain, but exacerbates her tardive dyskinesia (the restless leg, tremors in the hands, involuntary muscle movements). It really messes with her mind, and I think it makes her HE worse. I think this is one of those meds that her liver can't clean up after, and those toxins stay in her system and sit on her brain like a cloud blocks the sun. 

Almost Human

Oh, how I've missed having a real computer! I finally figured out how to fix the laptop...sort of. The screen is still broken, so I've hooked it up to another monitor, which flashes pink sometimes...and I can't store *too much* on this thing because Windows is taking up so much of the memory and there's still some kind of funk causing a lag/freeze thing occasionally...but it's up, it's working, I'm online and typing and was able to fiddle with the blog layout, the store look, and all sorts of other shiny new things, so it's all good. Did I mention I'm on tumblr now, too? Yup, under yarnsmithamber, of course. One of these days, I'll break and have a pintrest, too, but for now, I outright refuse to become addicted to one more site. Tumblr is just because people are on it. Google+, too (same name). 

Trying to be everywhere at once is exhausting. Tomorrow, I shall upload FO's to Ravelry like a mad woman, create a zillion online ads for the businesses, menus for Seraphim, and oh, so much more. And without the stinky public library where the computers freeze with old browsers and the old dudes get on their cell phones and the young kids listen to music way too loud for a library. Sigh. I am content. Tired, but content.

Come ON!!

WHY OH WHY won't doctors pull their heads out of the sand and give me the legal rights to mom's affairs??

I just helped her with the tv remote, as she kept using the channel button instead of the volume button, and the number 2 instead of favorites. She also still believes the tv is broken as it "goes into Chinese" when she changed it to Spanish-speaking channels. She means Spanish, but isn't that even more reason to help her?!

I also helped her dial the phone to call the bank to check her balance. She kept dialing the account number at the bottom of the checks. OH MY GAWD. It took me another five minutes to explain that you need to use phone numbers for phones, and I don't think she got it. 

One Night Stand Fundraiser Update!!

OCTOBER 27th!!! How's that date for the One Stand Fundraiser?? Thoughts?
This is the only available weekend day available in Old Town Temecula in October. Moving dates means moving the venue out of OTT Courtyard. #fundraising #alf #art

[Insert Title Here]

Finally got the X-rays and ultrasound the doc wanted (for me, not Mom). Mom woke with a migraine and rescheduled her appointment with the new therapist. She is resting and groaning in pain and can't seem to wake up today. 

I think I figured out why mom has been so much worse lately. Yesterday during her pain clinic appointment, she said she has been taking neurontin. She told me she stopped three weeks ago. The pain doc said it could mess with cognitive function. He suggested stopping it, and I told mom to stop, but she is so confused I think I have to take the bottle from her room. At least it is a better explanation - easier fix - than rampant HE. Take the good when it comes. 

=(

Mom is on the phone with Verizon, explaining to them that her tv keeps "going in Spanish." What's really happening is that she is turning the channel to Spanish stations on accident, either by pressing the wrong buttons or by holding them down (so channel 2 gets changes to 22). 

This would be hilarious and one of those things I laugh at, if it weren't the third time this week and she wasn't showing a ton if other signs of completely losing her cognitive function. It's scary to see her dementia get worse. I am not enjoying this. Could also be the night terrors I had last night had to do with mom losing her mind entirely. Wrong dream to come true! 

Prayers are so incredibly welcome, I'm begging for them. 

Look Out Dr. C!

Mom's in super-dragon mode. I neglected to bring her ice water (though she had water and isn't supposed to drink cold liquids while eating), so she screamed bloody murder and told me I'm not "in G-d's life" and that I'm a phony for watching services and then not doing anything for G-d the rest of the week. She made her throat hoarse from screaming. 

My meds are working! I had a thought this morning that my anti-depressants and sleeping pills are really just to handle my mother's illness. If so, does that make them like vaccines for crazy? So I don't catch her insanity, which could be very contagious? See? Sense of humor and I'm not all weepy or taking her screaming to heart, especially considering that my conversion to Judaism is such a touchy subject to the dementia'ed out Mama. Good advice from my great therapist and good meds make this just a tad easier. :)

Of course, the ill peeps in the waiting room at her urologist's office don't have that advice or those meds, so....good luck. 

The Joys of Codependency

I was cleaning my room (which I had neglected so long that stuff on the floor was starting to learn our language), and mom came in and laughed at my cleaning efforts - and something to do with me crawling around the floor and sticking my butt in the air to get stuff under the furniture. I told her I'd have to stop and take a break after taking out the trash, as my back can only handle so much. She said no; she required sandwiches. I was denied a break, but she kept talking and following me around the house like a puppy as I put various things where they belong (i.e. not under the bed). After about 15 minutes of conversation and joking, I was done and ready for my break. Again, she told me no. I asked her why she can follow me around and stay walking and standing for so long, yet be unable to make peanut butter and jelly sammiches. She said she wore herself out by following me and talking. She said she'd have to lay down, and after some debate on whether I was starting a fight or not, she screamed that she'll starve to death and stormed into her room. 

I brought her everything she needed to make her sandwiches, and left it with her. 

She is soooo pissed. I'm sorry, but that that's funny. She can't stand to do anything for herself anymore. Some families have to kick out their drug-addicted kid or criminal element sibling to show some tough love. My family makes you make your own pb & j. 

Holy Crap Weasel, Batman!

Got a haircut today while Mom was finishing her Survivor's Club Luncheon, and her friend gave her a ride across the parking lot to the school (hair dresser schools have cheap prices - $12!). I only learned she was there when I went to pay and she screamed my name. Screamed at the employees, screamed at me, even dropped the f-bomb. Said they ruined her day. She scared one enough that she didn't want to talk to Mom, and asked me to ask her a question.

Why does she do this only with strangers? Can she go ballistic on people we know so it's not just me? So maybe it doesn't sound like I'm making this stuff up?

On the bright side, Juice It Up seemed to cheer her up. Brittany always puts her drinks in so carrier with straws and hand-delivers then to us, and the now-famous Art gave her a hug. Such a sweetheart, but he also totally have credibility to the joke that the Art-crush goes both ways. Hahaha. I think he cured a bit of her bitchability (new word, kind of like irritability, but worse).

And now, I hook. 45% done with the elephant (knit), 75% done with the HK magic doll (crochet). :)

Pneumonia...again

Another doctor's appointment, and this time, he heard wheezing. Pneumonia again. Antibiotics again.

Mom's very unsteady on her feet. Forgetting words, using the wrong words, etc. She doesn't understand most of what I say to her. She's also having problems with time. For example, the doctor wanted more blood tests, and I had lost the last order so I asked for a replacement copy. They gave me one, and we left the office. Mom then asked if I found "the thing [I] was looking for," and told me she thought that I was given a copy before realizing I had lost the first copy. Minutes feel like hours to her, and she keeps asking for cookies that no longer exist (Keebler hasn't made flaky flix in years) and not understanding why I "won't" buy them for her. Her coughing is horrible. I've been instructed by the doctor to keep visitors to a minimum and only the healthy folk.

Blood taken today, more tomorrow. Tomorrow's results will let the hospital schedule her tap, which is when they'll draw the accumulated fluid off her belly and send it to the lab for testing.

Crockpotluck Wednesday! I made black bean chili from 500 Low GI Recipes (Dick Logue), with a few tweeks for Mom's no-tolerance spicy policy in her own mini crockpot and meatless for the girls tonight. We're having ribs.

I'll be calling again tomorrow for the One Night Stand. I know everyone wants more details, but I don't have any yet. I'm looking for a corporate sponsor to help pay whatever expenses come up for this, and really hoping to get some live music. October is art month, so let's take advantage of that.

2am & I'm Wide Awake...

Mom finally went down. Now I can sleep. Hopefully she stays down for the rest of the night, because once I take my meds, I'm out. If she wanders or paces, I won't know it.

Her headache dwindled down, but her speech is worse. She also had an issue reading, but it was also midnight, so I don't know that it had anything to do with HE.

Some light reading:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3246134/
http://www.brookdaleliving.com/sundowners-syndrome.aspx

Um...Uh...The...uh...um...zzzz

Shaking, unusually harsh migraine, stuttering, forgetting words, clumsiness, lethargy, illogical speech patterns (i.e. changing topics mid-sentence, connecting two ideas or concepts that don't belong, a la, "I have a migraine because the dog licked my glasses")....

Yup, looks like a hospital trip is imminent. Mom doesn't see it, though. Shocker. She has agreed to go in voluntarily if she starts throwing up, but if she starts talking gibberish, I'm calling 911 folk and she literally can't tell them no.

Amazingly, the second I told mom that I wanted her to go to the hospital, she said her migraine was "almost gone." I must be a healer of some miraculous kind. Y'all should jump on this band wagon before my healing powers are exhausted.

Paper Table Cloths

Mom felt like pizza tonight. It came with this little plastic piece that keeps the box from squishing the cheese. Why did I snap a pic it? 

When I was younger, we were just as poor as we are now (give or take inflation). I wanted a dollhouse, like every other little girl, but we couldn't afford one. We made due with what we had; an old cardboard 4-drawer dresser without the drawers became my 4-story apartment complex, and these plastic things became tables. I even made table cloths from paper and taped them around the plastic. I had that makeshift dollhouse for years. 

I wanted to post this to remind myself of who my mom once was. She loved me, with everything she had. She did her best to give my brother and I everything we wanted (and we did get everything we needed and most of what we wanted). She had a huge heart, was creative and sweet, and I thought she was superwoman until I was ten years old. It's important to remember the sweet times. Not just to honor them - which is a good reason anyway - but also to cope with the crap dished out these days. Mom isn't who she used to be. I said this a few days ago, and I believe it more now than ever; It is a testament to how awesome of a person my mother was that I continue to put up with the monster she has become. 

I made an appointment with a therapist that has fairly extensive experience with elderly person's disorders and cognitive rehab. I pray she can help. I pray she can guide Mom to let go of her intense fear of being hurt and let me help her (i.e. trust me when I tell her to take more meds or that her HE is showing, or that maybe she shouldn't keep taking cash out on the credit card, or ignore her doctor's orders). My hope is that we can manage the HE as much as possible and avoid episodes most of the time. It's not something that can be entirely controlled, but if she would listen to me sometimes, and see the signs and be proactive about it, we can really keep the episodes short and less severe. 

I pray that she can get a transplant to get rid of the monster for good. I know she loves me, but the monster doesn't, and it's mutual. I want to remember these happy memories of cardboard dollhouses and paper table cloths. I'll try to post more tidbit memories like this, to remind myself where my goodness comes from. <3

It's 2345, Actually

People sometimes ask me why I get so exhausted when talking to Mom. Allow me to educate through torture. :)

I was telling Mom about a party for a friend. She likes to write these things down so she knows where I am, which is better than having her call me in a panic attack because she assumes I'm dead in a ditch if I'm not home.

Me: It's on the 3rd from five to eight.
Mom: I thought end already had an appointment on the 4th. [yup, she means july 4th]
Me: Mmkay, we don't have appointments on the 4th and this is on the 3rd.
Mom: Oh, right. Okay, so we have one on the 3rd and the 5th?
Me: Well, you have appointments on the 2nd and 5th, and this shindig is on the 3rd.
Mom: Okay, so what's on the 4th?
Me: Um...Independence Day?
Mom: Oh. Well...okay. So I'll put this in my book then. The 2nd at 3 o'clock.
Me: The 3rd at five o'clock.
Mom: Right, okay. Got it. I was thinking 234, but it's 345.
Me: Um, what?
Mom: It's, ya know, 345....you don't have to get it. As long as I know what I'm saying.
Me: Okay. Sounds good.

At that point, Mom walked into her room to write it down. Two minutes later, she called my cell from her cell.

Me: Yup?
Mom: Okay, so I have item down for the 5th at 3...
Me: 3rd at 5.
Mom: Oh, okay. And what's her name? Lucia?
Me: Yup.
Mom: How do you spell that? L-U-C-I-A?
Me: Yu- [interrupted by Mom]
Mom: Or L-U-C-H-I-A?
Me: No, it's L-
Mom: What? Is there the H or another C?
Me: [now I yell over her] L-U-C-I-A! You had it's right the first time!
Mom: OKAY! Geez! I got it.
Me: How do you expect me to answer you questions if you don't shut up long enough?

Another example-
Mom: What's on the floor?
Me: I have no idea.
Mom: Well, what am I walking on?
Me: Carpet?
Mom: No, something sharp.
Me: I have not a clue.

Later, she told PT guy that it was an argument and that she got in trouble for not using the right word. She thought I had a problem with her calling the carpet "floor", when it was really just that I didn't know what she stepped on.

This is typical HE conversation and false recall. She doesn't comprehend much of what's said, doesn't retain it, and remembers false memories, which sometimes change over time.

That concludes today's lesson on the insanity that is my life with Mom. I have to go rescue a coupla friends and liberate them from italian dessert.

Pill Popping & CT Scan

First, a Mom-convo, for your amusement:
Me: Did you take something? You're suddenly talking very slowly.
Mom: No...I'm just...tired.
Me: Are you sure? No oxy? Xanax? You didn't take anything?
Mom: No...Amber...I talk slow...when I'm tired...you know...that.
Me: Okay then.
[3 minutes later]
Mom: I know you....hate talking...me talking s-slow...a-and I hate it, too. [pause] Reminds me of Larry....and I can't stand Larry...makes me wanna...cut my tongue out...so I don't talk like Larry. (Note that when she says "Larry", it's with a tone of disgust and hatred, kind of like a kid when pouting.)
[And now we're getting snickers from the waiting room from those who have been trying not to stare at the woman slowly leaning on her purse for a nap.]
See, Mom can be hilarious. It just takes a while to get it out. =P

And now, the other reality:
Mom's pain is worse, which I'm sure accounts for some of her grouchy behavior and her emotional vulnerability. Her pain management doc put her on gabapentin (otherwise known as neurontin). She was on it before for tardive dyskinesia (think restless leg syndrome, but Mom also had involuntary muscle movement in her face....we call those mouthfarts). She tolerated the medication well in the past, so I'm hoping it helps her pain - and her mouthfarts - without many side effects.

She also has the CT scan today. She doesn't think she can handle the barium contrast drink, so they're giving her something they give cancer patients. We have to show up an hour and a half early, but I'm just going to consider that yarnsmithing time. I have to go wake her now, though. She isn't going to like that, but she can't eat past noon for the scan, so she better eat now.

I'm trying to figure out how to get some rest, some time to myself...some sanity. I'm going on walks to help reduce stress (and the fatness) and I'm going to have to move some furniture around to set up the loaned computer, but then I can do a lot more online and post some of the old records for sale. I have ricky nelson, nat king cole, and johnny cash. Those ought to be worth something, right? And a record from disney...that one I need to get sold. If we can figure out how to test the second electric wheelchair, we could sell it, but I'm not comfortable selling something like that without making sure that all it needs is batteries, especially to a person who would rely on it and is probably shopping used because they can't afford much.

Shout out to Art & Don at Juice It Up, Village Walk Plaza. Don's always helping us learn the best way to get nutrition through juicing, and Art is "such a sweetheart" - so says Mom. She likes how happy he seems when she comes in. Something about the way he says her name when he greets her. Hilarious. Maybe the crush goes both ways? BAhahaha!

Still pushing on.

Here we go!

Mom news:
Step 1: figure out how bad the hernia is in order to determine if it requires immediate repair. CT scan is scheduled for Thursday afternoon. Let's pray that it's considered minor so we can focus on getting mom a new liver.

Fundraiser news:
Still searching for a good venue for the One Night Stand. Really hoping for October in Old Town Temecula. Time to run down some leads. :)

Any artists participating in the One Night Stand, feel free to share your progress along the way. Pics and links, even brainstorming are more than welcome. It's great to see something transformed from blah to holy-crap-that's-awesome.

The "T" Word

Mom and I have been running around all day today, starting with a 10:30 appointment with her GI. Keep in mind, that's early for her.

I had a few minutes to talk to the doc before she came into the room. I told him about this last weekend, Mom's many "blackout" moments, where she isn't herself and doesn't remember the episode later. I told him that I'm not sure if it's the HE or not, but she gets very aggressive and hostile and even abusive, and doesn't remember it, doesn't believe me, and it makes it very hard to care for her. This weekend, she threatened to kick me out, shut off my cell, and tell the cops I stole her car, all about three minutes after telling me that she hates to see me sad, and that she wants a normal life for me, and that she's sorry to put me through this. Being that I've already been very much overwhelmed as of late, and that I know I can't continue at this pace because I'm worn out and the to-do list doesn't get any shorter. This Sunday was pure hell, and I found myself terrified by my own mother for the first time in my life.

The doctor said this is HE, and he recommended tertiary care - a hepatologist at a transplant center that he knows well and used to work with. He's sending us to UCSD. He tried explaining it to mom, but she didn't understand how the loma linda doctors said she's not so bad, but this doctor said she's very sick. He actually said, "your liver is very sick." He was gentle, but there's not much you can do to soften the blow that you need a transplant and could die soon. He said that the ascites occurring even with diuretics is a bad sign of end stage liver disease, and so are those missing blocks of time. He said she's shouldn't be limited to 1g of salt a day and still be gaining water weight. I guess her body has been giving us signs that we didn't know how to read. He said that 70% of patients with uncontrolled ascites die within 2 years. She's already beaten those odds, which makes it less likely that she'll continue to do so. His office is scheduling her for parascentesis to remove the fluid in her abdomen, sending it to a lab for testing (he thinks the fluid might be infected), calling off the hernia repair, scheduling a ct scan to see how urgent the hernia repair might be, and sending us to UCSD. Mom immediately started crying, saying she's not ready to die.

The rest of the day was hard for us. Traffic, labs, x-ray, waiting rooms, cath change. Mom couldn't find her pain meds, so she took anti-anxiety meds. I've told her a million times that these are different meds for different things, but she doesn't remember or understand, not sure which. She nearly fell asleep during the cath change (awkward) and had a hard time walking from tne car to the house, stumbling twice and falling on my car.

So, the "T" word. I refuse to get my hopes up and dare to think that she'd get a miracle transplant that would make everything better. I am, however, expecting an initial denial from the insurance company to send us to UCSD, and I fully expect to write long and expressive letters to describe exactly how much a referral is necessary and exactly how determined I can be. This disease is making my mom a monster (have you seen the documentary?) and if they deny her treatment, I'll send her to live with them until they change their minds.

I finally made contact with someone who might be able to help with the one night stand fundraiser. It looks like we might be able to hold the auction in old town temecula. I'm hoping to join another artsy fundraiser in october. There's going to be a great street art festival there next weekend. I plan on visiting and seeing what artists might want to join the cause. It should be fun, and families are welcome to come get some chalk and some asphalt and make their own art. Everything is supplied for you, except the creativity and camera. Tomorrow is the summer bazaar at the temecula valley museum. I'll be there with Shelly (In Stitches by Shelly B. on facebook) and the incomparable Miss Aneita B (Seraphim Catering on facebook). We'll be by the concession stand, selling handmade jewelry (Shelly does great work with vintage buttons), knitted and crocheted awesomeness, antiques, decor, and collectibles. It should be huge. I hope to earn some money, enough to...you know what? It's been so long since I could afford anything, I don't remember what I might have needed. Caregiver time would be nice. A haircut, maybe. My shoes are wearing so thin you can see my socks through them. Oh! I know! Gas in the tank to hit moreno valley for that x-ray of my shoulders to see why my arms keep hurting so badly. It's good to have a plan.

Pneumonia? Surgery?

Please don't mistake blog silence for calm waters. Mom has been needing more care since coming home from the hospital...so much that I don't have time for anything. Between doctor's appointments, tests, and family stuff (birthday parties, graduation, etc), I barely have time to shower. Mom can't even get her own water lately. I've even had to empty the cath bag because she couldn't get out of bed.

Her mood is swinging. She loves me, she hates me, she's weepy, she's silly. I'm living with a freaking lifetime movie. Her memory sucks the same as it always does, so at least I think she's coming out of the episode (high ammonia levels/HE). She's still having problems breathing - shortness of breath, gurgling, coughing, choking at night. Saw her doctor yesterday, and he said that it takes months to get over pneumonia. He ordered a ct scan to check, since mom has magic pneumonia that can only be found with one, but we don't know that the insurance will approve it. He said the choking is more about her sphincter in her throat isn't working the way it should. It doesn't open all the way all the time, which is why she chokes on food and it gets stuck. We see the GI next friday to figure out what to do about that. As soon as we confirm the pneumonia, we'll schedule her hernia repair.

Finally done with her bladder treatments, for now. Mom keeps having moments...she said she thought I'd get mad at her for dirtying dishes, so she hoarded them in her room. She thought she was hiding them. She cleaned up, and handed me a trash can bag filled with dirty dishes, vitamin water bottles, and 7 up cans. Not everything was empty. It's a disaster. She also can't quite figure out how to use the plug and cath bag. Lysol is my friend. I carry alcohol wipes, paper tape, and gloves.

She calls every ten minutes, literally. I have no time for anything. She hasn't needed this kind of intensive care in a long time. She went from needing me to cook, clean, and drive, and whatever else to needing me to bring her every little thing and tell her which meds to take when, even with alarms. I'm exhausted. I have three applications to fill out that need things like her taxes, utility bills, and birth cert. I've been carrying them with me, but haven't had time in the waiting rooms to fill them out yet. My hair it's so long that it's very heavy and causing migraines daily. Mom says she has money for me to get a haircut, but she keeps spending without thinking and I'm worried about praying bills.

I'm trying to organize the one night stand fundraiser, but...ya know...time...sigh. I'm trying.

Local small businesses needed!

I'm still searching for donations for this weekend's raffle. I'm looking for service-based donations - house cleaning, facial, lawn care, massage, etc. I'm waiting on call backs and managers, but so far, I only have one cert for car repairs/oil change. This is the last weekend that any raffle money can count toward the liver life walk team. That doesn't mean I won't do other fundraisers for the american liver foundation, but it doesn't get our team the "look what we raised, neener neener" feeling.

If anyone can donate their time or talents, or know anyone who would be interested, please let me know. Remember, donations are tax deductible and generate attention for your business! :)

Are you sure I don't have a child?

And the pouting begins...

Let's not tell her that the silent treatment is a great break for me. Hahaha

Let's go back to last night...

Last night, Mom was so sweet. Today, not so much. I think her ammonia level is back down, but she's feeling the residual long term damage of confusion and memory loss and can't cope with it.

If anyone has any ideas on how to talk to a person who forgets everything or gets confused all the time without pissing them off, I'm open to suggestions. I've been told to let it go and not let her think she's remembering correctly, and I do that when I can. It's easier said than done when we're talking to a doctor and she's giving a false medical history unbeknownst to herself, or refusing to pay for prescriptions she needs because she doesn't remember the doctor prescribing them. Then she gets in a horribly defensive mood.

She is having sharp abdominal pain, which no doubt is the hernia ripping through her abdominal wall, so I called the surgeon to schedule the repair now that she's been medically cleared. She threw a hissy fit, said they were supposed to run a cat scan on her lungs to check for pneumonia, and that she'd die on the table if she stops breathing. I asked her if she wanted to go to the hospital (of course not), and the pcp and surgeon both said it was unnecessary, but she won't budge in her mind. She thinks they are still trying to approve a cat scan (this is the forgetfulness...they both denied it already), and that I'm trying to kill her. I asked her what she was expecting if she won't even allow them to diagnose an illness she thinks she has, and she said she wasn't expecting to die. She added the sarcastic "Thanks" for me killing her. I said she's not dead yet, but with her attitude, it could be arranged. =P

The hernia looks awful and really needs to be fixed. Especially when dealing with a woman who doesn't remember not to bend over until she already has.

Oh the inappropriateness...

There is a phenomenon amongst the chronically ill, and especially the elderly, wherein they appear to either lose all sense of social sensitivity or they simply don't care if they're rude. Whatever the cause, my Mom has a terrible habit of being wildly inappropriate in public. Though I'm not responsible for my Mom's actions, I do feel bad for those subjected to special kinds of attention today. Therefore, I feel the following is necessary to cleanse my conscious, even though the people it's addressed to will likely never read it.

I apologize to the following people for my Mom's behavior today:
To the mother with her daughter at the pain clinic, I'm sorry Mom tried to mumble that there "is something wrong" with your girl and that "it doesn't look like Down's syndrome." I'm also sorry she no longer knows how to mumble.
To the man at the pain clinic, I'm sorry Mom kept scratching at her pants in such a provocative area. She spilled grape jelly on them this morning and tried to clean it up, but I'm sure you weren't aware of that when she scratched at her inner thigh and said, "it's crusty..." I thank you for your jovial attitude, though. Even though Mom was falling asleep, you now know how to do a russian join. Go you. :)
To Ben, the pharmacist, I'm sorry Mom mentioned her fear of running naked in the street as a side effect of her new sleeping pill. I hope you don't have nightmares.
To the cashier and customers surrounding the candy selection of the pharmacy, I'm sorry Mom kept saying she "just needs something to suck on at night." I've told her that this is not something you say in public...many times....I'm just not getting through to her.

I hate to say it, but thank goodness we didn't have much conversation with anyone with a tan. I don't think an apology will cut it when Mom blurts out that "Mexican" [Spanish] gives her a headache. At least, it didn't in the ER waiting room, but she was pretty harsh when she demanded a room without "those SSO people."

Over the septic tank

I'd like to plant some trees or bushes, etc, in the backyard, so I asked Mom if she knew exactly where the septic tank and leech lines are....such a mistake. That conversation made zero sense. She said I can't plant on top of the leech lines because I'd be blocking the sun and the air from them. I'm not sure she realizes they're underground, much less where they are.

Guess I'll ask the county if they have the records. I want pineapple and maybe that maple tree that's growing by the porch can be moved to the backyard instead of just removed entirely.

Wake me at 11am...

People with chronic illness, especially when it causes diminished mental capacity, have a tendency to have problems with spatial references and timelines.

Example:
Mom has a modified barium swallow eval today at 11am. She asked when we are leaving. I told her 10:30 am. She said, "Make sure I'm up at 11." She didn't understand why I refused.

The test today should explain why she can't swallow, and we think the treatment would be simple and quick. Then she has another heparin treatment, then a visit to the pain clinic. Busy day today for her! Unfortunately, this stuff is all timed and the appointments have to be today. Tomorrow she can rest and Friday is just a heparin treatment.

I have to get ready, cut watermelon, pack mom food, change her bag, and get out of here. I'll be knitting like crazy today, hoping to get past the cowl portion and onto the pattern strips. Happy hump day!

Oh, now I get it...

Figured out why the HE monster is coming out to wreak havoc lately. Mom hasn't been entirely med compliant. She's been only taking kristalose and not miralax, so she hasn't been having any BMs. Poop is our life around here, and it's a really big deal when she doesn't clear out the poisonous ammonia.

She is currently unable to speak to me without biting off my head, so I'm going to a BBQ and she is no longer invited.

If she doesn't start taking her meds and clearing out the ammonia, she'll get worse until she starts calling cops or speaking gibberish, and we'll have to have another trip to the ER. Let's hope we don't have to go there.

Aguanga Country Fair and Fundraising!

Today was so much fun at the Aguanga Country Fair. This was the first year, but I bet next year will be even better! I only made back the vendor cost, but I did get to hand out business cards and I met a caregiver. It was fun - alpacas, puppies, a goat that liked being scratched behind the horns, and the yarn spun from the most adorable alpacas ever, plus great company! I brought watermelon and cut it fresh there. It was so good! Nothing like fresh watermelon at a country fair. :)

However, since I didn't actually make any caregiving money, I'm putting some on eBay. Hopefully it does well there. I wish I knew what to do with some of the collectible yet practically-impossible-to-ship stuff. Like the typewriter from the 50's. it's awesome and everyone was drawn to it at the show (they all said their grandparents or parents had one), but they aren't collectors and don't see the value. Whatever the reason, they don't buy. Maybe I'll get lucky one of these days, like when that adorable teenager fell in love with the 1913 sewing machine. She was an aspiring fashion designer and wanted to stare at it for inspiration. It was meant to be. Let's hope it's also meant to be that we raise some money to bring the secondary caregiver back. Mom says she's starving to death with my cooking. :/

Also, getpear wants to feature our team on their site! So hoping that brings more readers. Then awareness and participation and fundraising and research and a CURE. I'm sure I'm getting ahead of myself, but how else do you move forward in the world?

Exhausted. Sleepy time, if nighttime snacker mom doesn't want eggs and hash browns cooked or apples cut or whatever else. :)

Country Fair today! Come with!

First Annual Aguanga Country Fair this Saturday, May 18th, from 10-5! 

44620 Sage Road in Aguanga (by Cottonwood school). 

Entrance is free, tickets are just 50cents for rides and games! Petting zoo, awesome folk like Shelly and I, our craftiness, fair food, and a ton of other stuff. I'm expecting to have a blast. :)

I'm VERY grateful to the office on aging for paying for respite care and to destiny care for providing it.  Mom has someone with her at all times. :)

Monster day!

Mom is in special monster-HE mode today. I draw lines at putting up with such behavior, but I also have to be understanding that it's part of the illness and she has less control over it at times. The trick is basically to ignore the hostility as if she's nice and spend as little time as possible around her without jeopardizing her safety. How can you tell if Mom's monster is loose and attacking the village?

Perfect example conversation as follows:

Me: Can you hold this? [it was a cap to her bedside bag...I was changing her cath bag to leave the house.]
Mom: I'm not STUPID Amber!
Me: Yeah, I didn't say you were...can you chill, cause you're all kinds of pissy.
Mom: You know what?? [F*%k] you and the cloud you rode in on!"
Me: I thought it was "horse"...
Mom: Well you always have to be different.
Me: Fair enough then.

She also decided that I should be punished, so I'm not allowed to sit in on her appointment today. It's a boring and long wait, because she just has to lay there for some time and do nothing, so I sit keep in and keep her company. Not today. I'm not allowed. I doubt she realizes that I only sit in for her sake, and that I could just as easily (and preferably) knit in the waiting room as opposed to talking to her and not looking up considering that it's a bladder treatment at the urologist and I'm really, really okay with not seeing my mom's who-ha. Sometimes she apologizes later, like she did yesterday. She was very anxious and it made her very angry, and she took it out on me. Other times, she doesn't even remember being such a jerk to me. Sometimes, she remembers being angry, but she feels justified in all her twisted actions, like an abusive husband would say, "I wouldn't have hit you if you didn't make me so angry." The hardest part is deciphering if it's the HE, anxiety, legitimate, or someone else got under her skin. We all have bad days and grumpy days, but some of hers aren't the same kind of grumpy, and she has more bad days when her ammonia is raised. I try, but I'm only human, and it's hard to consistently be a patient and compliant punching bag. I tend to lump all reasons together and just say it's a monster day and avoid actual conversation and let her bitter commentary roll off my back. And I knit. Cheaper than therapy (yes, M, I want that bag).

Today is a knitting day.
Tomorrow is a show in Aguanga! I'd tell you where, but I don't know the address yet. Ha!

The really sad part is that today isn't so bad. Just a cursing mouth, unwelcome insults, walking separately from me, telling strangers how horrible I am...mostly verbal. She hasn't thrown anything, hasn't stolen my mail, hasn't called the cops or threatened to kick me out. When you lower your expectations regarding how a human should treat you, it's not so bad. =P

Liver Life Walk in 3,2,1...

Liver Life Walk is TODAY at the San Diego zoo! Check in is from 6:16-7:30 and the walk starts at 7:30. Choose from a 5k hilly route or a 1.5k flat walk. I'll be loving the hills on the way down and cursing them on the way up. ;)

I attempted to get some sleep, but even with meds, I was too excited to sleep. Passed out around midnight and got up at 2. I feel like a little kid going to the zoo for the first time. Let's see how long this adrenaline can last!

If you can't make the walk, it's not too late to support us! Click the banner above for the liver life walk and make a donation. You can make it from a walker's page by clicking the "sponsor me" button or make a donation in honor of anyone or our team at liverfoundation.org/walksandiego. So far, we have raised over $230. :)

Go Team Kathy!

And now I have to actually get ready, for a much as adrenaline won't let me sleep, it's not making me move fast enough to leave by 4 to get to the zoo in enough time to set up with ALF.

Migraine City

Second day with both of us having full-day migraines. The house is dark and we're trying to be quiet.

I better gear up before Saturday. I'm not missing the walk unless I'm restrained.

A tad frustrated with a message from one of our social workers. Mom said that our worker is upset and seems to think I haven't taken advantage of the opportunities they've presented to us. Truth be told, there are several programs that they said would help that haven't been fruitful, but I don't feel we are to blame. I'm swamped with paperwork as it is, and some of the ideas they have just don't pan out. I applied to weatherization last October, and only get 3-hr hold times and then voicemail or a disconnect when I call to check status. I can't get contractors to call me back or give estimates in order to apply for certain grants, and even the roll of non-slip stuff they gave me to put on the ramp hasn't been put to use. I haven't had time and the rain keeps coming sporadically, which would prevent the stuff from sticking, so I haven't done it yet. My biggest annoyance is that they could think that they were helping by handing me stacks of paperwork. They know mom can't do it and they know I'm overwhelmed and don't have the time to do what's needed now, let alone adding to the list of things for me to do. But then I realize that the worker never said she was upset; Mom just thinks she is by the tone of her voice, which Mom misinterprets frequently as angry or hostile. Guess I'll find out at the end of the month.

My brain hurts. :(

If you haven't clicked, please go to my previous post and click on the getpear link. It's so easy and really does help. You sign in with your Facebook username, and it walks you through everything else. You click one button and it likes the sponsor on Facebook for you. One button answers a quick survey question. Tiny things add up to cash value (credits for custom tshirts) that really do help us and it really is free. I'm going to sell the shirts and split the proceeds with ALF. The rest will help cover caregiving expenses. Maybe another body in here would get more done - like paperwork or house cleaning or dealing with Mom's meals or appointments (did I mention the 3x/week 9 week treatment mom starts on Monday?), or about a million other things I try to juggle alone and manage time for. Next person who judges for having dirty dishes in the sink gets their face rubbed in kitty litter. New rule. =P

Raffle Today!

Had a vendor fair today. Not a great turnout, so I made no profit. BUT I also held a raffle with a ton of prizes from local places for ALF. Today's prizes were all about foodies; Chipotle, AppleBee's, Starbucks, Juice It Up, Siggy's, Big Cheese Pizza....it was great! So blessed to have so much local support! Between last week's donations and selling the frog bonnet, that brings the total cash donations to $108!

I have one week left, so please consider a donation of any amount. My personal goal is $150, and our team goal is $1,500. Two really easy ways to help are right here:
1) click HERE to be directed to our team page and donate and amount securely though paypal,
2) click HERE to be directed to the getpear.com website, click a few clicks, answer 2 questions, and earn our team points toward custom t-shirts that will be sold. Proceeds will be split between ALF and my mother's caregiving expenses. This is a LIMITED TIME sponsorship - I only have 7 DAYS LEFT to get as many clicks as possible. PLEASE click...it costs you nothing and could make a real difference.

Thank you so much for supporting us! Someday, I hope I see a treatment or cure for liver disease that doesn't require a  transplant. So many lose the battle waiting on a matching donor, and people like my mother don't even get listed because her main issues are ascites and HE, which aren't counted in the MELD score that transplant lists rely on. So little is known, and this is so common...some liver disease can be prevented and some might be genetic, but more research must be done to make any improvements to the lives of those affected by liver disease, including the fifteen thousands kids who receive liver transplants annually.

Click for Caregiving/ALF $!!

I have TEN DAYS for our sponsor Apartments.com to rack up $500 worth of custom t-shirts. Shirt sales will be split between ALF and my Mom's caregiver expenses. Share, click, and help!! IT COSTS YOU NOTHING!! Just 2 seconds and our team gets points!

CLICK HERE TO HELP!!

Another show and a RAFFLE! =D

So excited! Come out this weekend. I scored a lot of fun stuff to raffle off, and I'm going to get more today and tomorrow. And Miss Shelly's coming with Origami Owl - so get your mother a personalized locket just for her!

Stigma Buster

I saw this story on ALF's site and it's so moving and informative, I had to share! And it's so inspiring to see a former Boston Marathon runner find his wife and his purpose with ALF and be such a great role model.

LIVEr Champions

Only two weeks left!

Please PLEASE consider donating to the American liver foundation. We are so far from our goal and there is so little time left. This really makes a difference. Please click the link below and share this blog/link. I am praying for a miracle. I pray that a treatment or cure becomes available before it's too late for my mom. The only way to get there is to fund research. Thank you for reading and helping in any way.

I'll be at the river springs charter school fundraiser this Saturday promoting the walk, educating people on liver health, and accepting donations. I'm trying to gather some small bribes for people who donate or sign up (Starbucks drinks, target $5, Walmart, McDonald's, etc). Feel free to stop by and say hi. Give a quarter. Seriously, anything helps and you'd be surprised how fast it adds up.

Go Team Kathy Team Page - Liver Life Walk - American Liver Foundation

PT Guy Leads to Mom's Temper Tantrum

Our marvelous PT guy stopped by tonight to visit with mom and check on her. She was happy and joking with him. The second he left, she started throwing a temper tantrum and screaming like a little girl. She must have missed him. =P

The shingles rashes are drying up and healing. Her knees will hurt until the antibiotic leaves her system. One of the major side effects of levaquin is joint swelling and pain, but we didn't know that and the hospital has a habit of not paying much attention to what they prescribe and passing off all of her aches and pains. They blame the fibro and never really think of anything else.

We have an appointment with the GI next Friday. I'm hoping to clear up this salt issue and find a way to keep the ascites down and keep her serum sodium levels normal to avoid toxic shock.

I met with the wonderful ALF contact and borrowed the banner and got some brochures about the liver life walk and liver health to have at the school fundraiser. Some people have expressed concern about the walk in light of the terrible events in Boston. The liver life walk takes place inside the zoo, doesn't attract as much attention as the historical Boston marathon, and the zoo is only open to walkers during the walk. It's horrible that people were killed and injured, and I pray for them and their families. I do find it inspiring that the city of Boston refuses to let terror win, refuses to be greedy with supplies and help (how many stories did you hear about injured walkers being helped and even saved by Bostonian strangers?), and that the entire country is backing Boston. It seems that Boston refuses to let evil deeds force their faith in humanity into hiding. My college advisor was from Boston, and I really can't imagine anyone holding her back when she wants to do something. I hope we have a few people walk with us in May and show us how Boston does it.

They will totally pass me, btw, because I walk, not run. If I start running in the zoo, you should start running, too, because I'm being chased by some huge critter that broke free from its habitat.

Shingles

Add it to the list. She broke out in a rash in the hospital and finally got doctor confirmation today. Luckily for her, she doesn't have the extreme pain that is typically associated with it, but it explains the last several years of seemingly random pain in her back that she thought was her kidneys failing. The outbreak is almost over, so her skin is drying up and healing. Too late for antivirals, so there's nothing to do for it now. At least we know what to do next time.

Fundraising Efforts in Place!

Today and tomorrow, Pat & Oscar's in Temecula by the pond will be helping my team (Go Team Kathy!) to reach our goal of $1500 before the walk in May. Just take a copy of this flyer to P & O's and hand it to the cashier when you pay and the American liver foundation gets a percentage.

These things always scare me. What if nobody shows up? What if I didn't get the word out enough? If we don't sell more than $100 in food and drink, alf gets nothing...I have to find other ways! The good news is that I also have one of these food fundraisers set up for Sunday the 21st at O's in Orange, and I got a free booth at a school fundraiser to promote the walk. My contact at alf (Alexandra...she rocks!) is going to meet up with me and give me brochures on the walk and on liver health, and a banner for the booth. The school is expecting 400-500 people, so I hope it's a large turn out. Right now, we have a lonely $20 bill to my team's credit for the walk, and that's just not enough for me! BUT I got a local paper to put an add in and it's supposed to be put in the murrieta patch too. They say we caregivers are notorious for not asking for help. I'm not just asking - I'm BEGGING and praying!

Now let's see if I can post the flyer here. I'll post the one for the 21st soon.

Homeward Bound

Medicare made its decision, and sided with the hospital. She comes home tomorrow morning. She is still having delirious episodes that aren't consistent with HE, so I'm concerned that she won't be compliant with her meds.

I spoke with the doctor at length today. She basically said that Mom is headed to a skilled nursing facility, and very soon. She actually wanted me to put her in one now. She said that Mom can't manage her meds by herself, and since it's always a bad idea to have a family member manage them (i.e. Mom won't let me and we'll just end up fighting, cops being called, etc), and we can't afford to hire a third party for the amount of care that means, placing her would be the only option. She also said that Mom's on too much medication and mixes them in a way to cause CNS depression (central nervous system depression...low blood pressure, low oxygen, heart rate drops, etc). She said that part of Mom's delirium was caused by low sodium, that it's a common problem in liver failure because of the water pills, and will get worse over time.

I agree that Mom's overmedicated. The rest...I don't know. I don't know what to do, and it's far too much to think about right now and too large of a decision for just Mom and I to make. I cleaned up Mom's room, fixed the stuff she threw everywhere, and organized the house quite a bit. Moved furniture. I'll pick up Mom at ten so we'll be out of there by noon. I pray she's lucid enough and takes the antibiotics.

Hospital Stay 2013: Day 4

I spoke to Mom, or rather listened to her babbling, for almost an hour this morning. She is still more delirious and speaking more nonsense and exhibiting more confusion than her normal; it even seems worse than yesterday. She speaks gibberish and slurs words when she's sleepy or not quite awake, but it usually doesn't last more than a half hour. This is lasting longer and concerns me. She is still having problems swallowing, but the day staff doesn't want to admit that. It's so odd to me that they could sleep at night knowing they are ignoring a patient's complaints and problems, especially when it means she risks malnutrition and not being able to take necessary medication. They say we can just have her eat pureed food and crush up her pills. Don't they wonder WHY she can't swallow, or worry that it could be indicative of a larger problem?

The medicare appeal is being processed, but I'm not sure how long that means Mom stays. The nurse today kept saying, "you stay here for two more days," but I don't know if that means two days from today or two days from when they thought she should've been released, which was yesterday. I asked about the swallowing eval, but the nurse said she hadn't had it done and she "swallowed her pills this morning just fine." I hate intermittent problems. It's worse than having inconsistent car problems that never act up during a mechanic's test drive. I just wish they actually listened and believed the patient and the family who sees the patient often enough to establish a baseline. Mom was crying last night when the night nurse came on because she is the only one who seems to believe mom or myself, or at the very least, she empathizes and doesn't call Mom a liar. She said it just felt like a weight off her shoulders that someone believed her. Unfortunately, that nurse is neither a doctor nor will she be Mom's nurse again as she is off duty for a few days. Mom is in the hands of the doctor who, I pray, opens her eyes and ears to new information and thinks about Mom's symptoms more than once. Today, Mom told me that they told her that her tests came back negative and her CAT scan is now clear. I'd love that news if I believed it. Mom doesn't recall any tests being taken today, and I was there all day yesterday, so I know they weren't taken then.

Today is about prepping the house for Mom and praying that the doctors take a second look and figure out why she can't swallow and why she is so out of it.

Hospital stay update: day 3

Long story short, Mom became delirious and couldn't walk, open her eyes, or even follow commands like "walk", so I called 911 Monday. She was admitted with what appeared to be a severeUTI that was bordering sepsis.

Yesterday's word was that she has an infection, but they don't know where. They ran a few tests, but still didn't give her any meds for her liver.

This morning she was told it is actually a minor bout of pneumonia, though it affects her to the point of hospitalization. This infection is so small that they can't hear it with a stethoscope. They had to find it on a cat scan of the lungs, and it's just a wee bit on the very bottom in the back of the left lung. I find this odd considering that she has been complaining of pain in the right lung (although she was grabbing her arm pit, so I didn't connect it). The pneumonia seems to be from her aspirating in February during the EGD. The doctors either didn't know or didn't tell us, and I'm still waiting for a report. Aspiration is basically a long word for the accidental deposit of gut fluid into the lungs. Very acidic and very dangerous. She is lucky to be alive.

The doctor tried to discharge Mom today, but she isn't well enough to be home yet. She still can't swallow half of the time, and has more delirious moments than "her normal", and they expect her to take antibiotics at home when I tried to tell them (1) she can't swallow pills without choking, and (2) she gets combative and hostile when she is in one of those moments. I'm afraid she'll get just as bad as monday again and we'll end up right back in the ER. I tried explaining this to the doctor, but it seems that once a decision is made, the discussion is closed.

I filed a grievance with her health insurance and medicare, so she is hospitalized until at least friday pending medicare's decision. I don't know how her insurance works, so I don't know what to expect there. I'm hoping she is more clear headed by friday, or that they keep her until they figure out why she is crazier than usual. It is so frustrating and infuriating to have her ignored as a patient and myself being dismissed as a caregiver. Nobody listens to me or her, she doesn't get the treatment she needs and deserves, and it's hard to maintain a calm demeanor and be respectful of medical professionals who do not reciprocate, but freaking out and yelling or tossing around threats does not motivate them to help her. I've been quite calm and respectful today, though I don't believe they deserve it, and I'm proud of myself for that. My mom deserves for me not to piss everyone off and have them take it out on her.

I do have to say that Art at Juice It Up is her current hero and the night nurse, Nurse Katie, has been awesome the entire time. I wish I could say the same about the rest of the staff. She has been denied meds even though they had me bring them from home. The first two days seemed promising for treatment and diagnosis, and now I fear they, too, have given up on her and have washed their hands of her.

I'm trying to keep her spirits up and tell her it will be okay. I'm passing out brochures for the liver life walk with mom's card attached in hopes some of them will walk or donate or join team kathy. It's rough and, franky, scary to have her so close to the end. She easily could have died when she aspirated, as well as having an infection advanced enough to cause sepsis. We are very lucky. Her guardian angel is tired.

Episode IV: Hoping for Poop

Mom has been declining since the EGD, and it's become a much more rapid descent this last week. She hasn't been eating or taking kristalose, which means she hasn't been moving anything out of her system. I tried to get her help yesterday, but she gets extremely agitated and combative when her ammonia level is this high. I called the primary doc and the GI, but the primary only refers to the GI and the GI is on call at the hospitals all week and isn't taking appointments. They said to call 911. I called the EMT's, but they are limited both in knowledge and what they are allowed to do by law. They couldn't do anything. Saw the primary today and he referred to the GI and ordered blood tests (which speaks to his lack of knowledge on the subject as ammonia testing of the blood has been an abandoned practice because it is not indicative of the ammonia level in the brain). I made an appointment with the GI for tomorrow, but mom refuses to let me take her. She has agreed to let the secondary caregiver take her.

For those who are wondering about her current symptoms, some are things we all do and that mom already does more often than others, but is now doing more often than *her* baseline. Other symptoms are those that only occur when her HE is out of control.

The symptoms that are exacerbated during an episode, and that she is displaying currently and for the past week:
• problems walking (fallen into 3 walls today, and has trouble with steps)
• memory loss (so severe that she didn't recognize her own car)
• missing time/confused time (i.e. she thinks what happened two weeks ago happened yesterday)
• stuttering and mispronunciation of words or using the wrong words
• sleeping way too much and having difficulty waking her (this is how it leads to coma...eventually I won't be able to wake her)

The symptoms she is currently displaying that she typically doesn't:
• lack of comprehension of simple questions (this goes beyond confusion...I asked if she wanted me to get her scripts and she said yes, that her phone has a dead battery)
• illogical thinking (although that might belong in that top list..but she's so far gone now that she can look straight at something and not know what it is, even her dogs; didn't understand why she couldn't make a 1:30 appointment if it was already 3:55; she took her morning and night time meds together this AM)
• she is extremely agitated and she hates my ever-lovin' guts (note last November when she told hospital staff that I took her to the ER to murder her)
• staring into nothing for no reason - I call it freezing

I plan to do the only things I can do; have the caregiver take her to the GI and hope he calls 911 and orders her into the hospital, keep her safe and comfortable at home and hide the knives, encourage her to take kristalose and pray harder than I ever have for her to poop. I don't usually go into pooptalk on here, but it's the only way to get the toxins out of her system when the liver fails to be a filter, so our lives really do revolve around poop. Sad, but it makes for some great jokes and at least makes us realize what's important and puts things in perspective. It's such a different viewpoint on life when someone is running a red light, endangering everyone around them, so that they won't be late for work, yet my mom could go to sleep tonight and not wake up tomorrow because she isn't pooping enough and medical professionals aren't familiar with her condition to treat her even though they can recognize, as one EMT stated, "she ain't right." That red light and being late for work just seems silly in comparison to poop now, doesn't it?

So love your family, take care of your livers, remember to support the liver life walk because it is all about research and education to stop things like this from happening, and pray for poop. <3

Neuro tomorrow!!

The long anticipated, repeatedly rescheduled, vitally necessary neurologist appointment is tomorrow. Finally!! The first few appointments were rescheduled due to mom's previous PCP being a complete jackass, and the last one mom wasn't feeling up to going. We've been pushing for a neuro consult since 2011, and desperate for one since her seizures last November while in the hospital.

Let's hope he can order some valuable tests to tell us the damage already done, if and how we can repair it, and how to better prevent it. I'm really hoping he orders an EEG and cognitive rehab.

Please remember that you can join Team Kathy for the liver life walk without walking. Being on the team means you support us in spirit and help with fundraising. For instance, if I can set up a fundraiser in your area, you can help by spreading the word and asking for donations or sponsors. This is the only major fundraiser for the American liver foundation all year, so please click the link at the top of the blog and click on "join team" down by the roster. We can make a difference!!

Sorry Cody

At least, I think that was your name. I'm terrible with names. I apologize to the woman I met in the waiting room. I didn't know where you went for a soda, and the moron pharmacist was useless. Couldn't get my meds and was too upset to stay. Really not a great day.

Fabrication Example #486

Yesterday, mom and I had a conversation that serves as a great example of fabrication. Fabrication is a practice of making up information. It is a symptom of HE, among other things, and it's important to note that fabrication is NOT lying. People with this particular problem believe everything they make up as if it happened in reality - it IS real to them. Many people don't understand fabrication in HE patients. Thus, I've decided to post this as an example. This is intended to educate the reader. This is not judgement and I am not angry with my mother. She honestly doesn't know she does it, which is part of the issue. People in this situation do not have the capacity to see the fault in their memory. It is literally impossible for her to acknowledge or accept, or even understand, that she does this, and it's all from ammonia built up in the brain. Conversation as follows:

Mom: Do we have any chicken soup thawed?
Me: No, we ate all the thawed stuff. We have a lot frozen.
Mom: How much?
Me: That tub in the freezer.
Mom: That huge tub?
Me: Yeah...do you want me to thaw it out?
Mom: You can't thaw that thing...it's plastic.
Me: Why can't I thaw out stuff in plastic? We always do.
Mom: No, you can't do that. Plastic melts in the oven.
Me: In the OVEN??
Mom: The toaster.
Me: What?! I'm so confused. How would I put a tub of frozen soup in the toaster?
Mom: Not the toaster...the oven. The little one. The one on top of the microwave.
Me: Yes, I know what the toaster oven is...but why would I put the soup in there?
Mom: You just said you would...to thaw it.
Me: No, I didn't. I would not put a plastic tub in the toaster oven. That is not a good idea.
Mom: Well that's why I was wondering why you'd do it!
Me: Except I never said it! I never said "oven" or "toaster" or "toaster oven"...that doesn't even make sense.
Mom: I KNOW!! THAT'S WHY I DON'T KNOW WHY YOU'D DO IT!

I asked her if she realized that she had fabricated that, and that she was putting words in my mouth. She said no and was offended that I would "call [her] a liar." I tried to get her to see that she assumed that I would do something, even though it didn't make sense, and that I told her about it, but then she called me an ass, and I realized that she would never see it. She believed entirely that I said I'd thaw a giant plastic tub of chicken soup in the toaster oven. She did realize something, though, because she was overly sweet afterwards. Lots of "thank you's" I don't usually get and a "I hope you have a good nap and a good day..."

She's on the phone now, balling someone out. Don't know who, but apparently they are liars and stealing her money and I've heard "don't you DARE pass me on to someone else!" a few times. I'm sure she's giving some customer service entity a run for their money...or a run for her money...one or the other.