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.