Tonight's conversation with Mom included such topics as: who I do or do not care for in my family and how that affects *her*, her request that I play pediatrician to someone else's baby, the way I say "okay" (which she's determined is not okay), her incredible fear of the hospital, the questionable gender of the plaintiff on TV, her desire to lead educational seminars about HE, to have or to not have chicken nuggets, and her wish to laugh with me. I am confused in more ways than one. I just might break my rule of "no drinking alone."
The last hepatology visit went well. It was about two weeks ago now. I'm rather impressed with this doctor. He's young (or looks it), but he knows what he's talking about. He recently published a paper on HE and actually stayed long enough to speak with Mom to get a clear impression of her ability to communicate. He agreed that her HE had become worse since her last visit with him. He had problems communicating with her, and she couldn't understand or follow the conversation well. The miralax doesn't target the ammonia, but the lactulose causes her such abdominal pain that she's not really functional. He recommended she drink 3.5 oz of lactulose every other day, alternating with 17g of miralax. Another week later, and we were calling him again. She was far worse. She started taking her medication all at once (i.e. the four different times became once a day....which means that a lot of them were double-dosed and quite a few were fighting each other). I had to remove her medcenter from her room, which caused her to throw a very big fit. Luckily, the caregiver was here to witness it. I did record some of Mom's rantings recently, but as my webcam is a cheap one, you can hear her but can only see a dark shadow human shape. I'll feel a lot better about a lot of things when we get the dropcams in. It'll relieve stress when Mom is left alone, it'll act as defense for me when she calls the cops and tells them how horrible I am, it may even allow her to see how she behaves and break that wall of denial. The dropcams will also allow two way communication through the camera. I like that because she constantly calls me and says something like "is this any good?" and I don't know what "this" is....
Her doctor said that she should go into the hospital, but she's refused for a week now. He prescribed krystalose, which is the powdered form of lactulose. It means she can get a higher dose of it with less liquid. She kept taking 3 doses at once, which can cause internal bleeding. It took a few days, but she seems to be taking less of it now. I just hope she's taking enough. She doesn't allow me to monitor her krystalose intake. She's allowed me to keep the medcenter in the living room. I was making sure she took each dose on time, but she seems to have a handle on everything but the first dose in the morning. I think she takes it in her sleep and sometimes doesn't stop at the first dose and just empties the box without really being awake. The urologist gave her a new med to help her sleep at night (it helps her to stop needing to get up as often to use the restroom). The hepatologist said that she needs a neurology consult and that she should go into the ER at Loma Linda. He would admit her and run the tests she needs done (like an MRI, neurology consult and blood tests). She can't seem to remember this nugget of information. She keeps asking him for an emergency appointment, but he tells her no because that's not what she needs. She keeps telling me that she needs a referral to see him, and that she won't be treated by her hepatologist if she goes to the local ER. In reality, she doesn't need a referral to go to the ER, and it would be the one in Loma Linda, so the hepatologist would be there to admit her (it was his plan, after all). She also thinks that she'd have to pay for the trip to the ER as if she's taking an ambulance, but I would drive her. Overall, I think she's largely confused about the hospital and what would happen, and the only thing she knows is that she's scared of it. So she won't go. I understand, but it's hard to see her hurting herself and keeping this fog on her brain when I know that a hospital stay for a few days would bring her mind back (as much as it can come back), speed up her recovery greatly and give me a break as well. She's improving on the krystalose, but very very slowly. It seems like she's reached a plateau. It looks so much like she's getting better, having fewer emotional outbursts, stuttering less, remembering more....and then she takes a giant step backwards. Such as the conversation tonight. At this point, I have no choice but to watch her and see what happens. If she gets bad enough for babble talk, I can easily force a hospital stay on her, but I'd have to call 911. If she stays at this pace, she'll probably be back to what she was (not healthy, but functional) in several months. I may be insane by then. I may already be.
At the doctor's appointment, when we were discussing the lactulose's benefits and side effects, I commented that it seems that the choice seems to be whether she wants her body to function or her brain to function. He said yes; that's what she has to choose between. What a horrible choice to have to make. It was the saddest thing I've heard in quite some time, and living here, that says a lot.
I do have good news, though. There's a t-shirt company that's willing to help us with fundraising. Once I come up with a design, they'll offer to sell shirts individually and we'll get 20% of the proceeds. If I do a bulk buy and sell them myself, we'll get another discount and get more than 20% back. I've contacted two organizations that I'd like to be involved with this, and with their support, I think it would do rather well for all of us. It would help raise awareness of HE and help raise money for the caregiver account. I'm asking for FAMILY AND FRIENDS to leave comments on the MEMORY PAGE (see the link to the right). I'd like to read them to Mom; I know they'd make her feel good. I'd also like to use them for ideas to help design the t-shirt.
At this point, we have approximately 55 hours left to pay the caregiver, and I'm still applying to jobs. I did have a Junky Trunks sale (see Junky Trunks on Facebook!) and made a few dollars, but it was the first and doesn't have a following yet. I'm hoping that if I continue, I can clear out the dining room and the office and make enough money to hold us over until I get a job. It doesn't help that our printer ran out of ink, and isn't the kind that can be refilled. We have several printers or combo machines in this house, and you'd think one of them would work, but they're all either dried up or have a computer error that makes them useless. I found one in the shed that I'm going to clean off and test, but in the meantime, I have to print applications at Office Depot. There aren't many employers that only accept applications in person anymore, so at least I don't have to go often.
Mom just told me she took out $500 from her credit card to give the caregiver for a week. I have to figure out how to get her to put the money back on the card. I have to stop blogging right now, but I'm hoping to do this more often and get a following that will help raise funds as well. I'm rather hopeful that Mom will be comfortable with video blogging when we get the dropcams, which will help people understand what it feels like to have HE and might bring in followers, too. She seems tempted by the idea, but scared of it at first. We'll see. But for now, I have to figure out how to explain to her that 12 hours a week doesn't equal $500. God save us.
