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.