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.

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