...chronicling my mother's battle to live with liver disease and raising awareness of hepatic encephalopathy, together.

Sunday, June 3, 2012

Stumbling, But Not Yet Falling

Mom was doing so well and losing so much of her ascites fluid that we worried she was dehydrated. So we cut her water pills down again (down to 50/20...this was last month). Her belly went back up in no time. Suddenly 6 months pregnant belly. So we raised the water pills again - up to 100/40. So far, she is just starting to go down very very slightly. She really is sticking to this diet and doing fairly well, though her teeth are causing problems with some foods and she doesn't want to chew them. She sees the dentist for quite a bit of work in a few weeks and hopefully that will ease a lot of her eating pain. 

Her stomach is still distended on a low-salt diet averaging 600mg/day. I have a feeling it's related to her meds. Her ammonia level went up again. Last check, it was just over 100. I've done as much searching as I can without being a doctor, and the only reason I can find that might apply is that her water pills cause her ammonia level to rise. I also read up on the Xifaxan, which treats her HE. It has a side effect of ascites. So they fight each other. Awesome. We really need to get back to the liver specialist to ask about this - there has to be a solution for this. She's following the diet and trying so hard to like vegetables and eat often, even though her stomach hurts constantly and she hates eating. But her doctor's office is taking their sweet time getting that referral going, so again, we wait.

I had a job for one week, and we had a new caregiver start that week. If you follow the math, that means we had two caregivers (one works 2 days/week, the other covers 3). I really prefer the new one. She uses much more common sense than the old one. I left a low-sodium meatloaf recipe (at least I found ONE thing Mom loves) and she got it wrong. She said she's no good at following recipes. Recently, she held onto checks for so long that I had closed the account and it bounced (I changed Mom's caregiver account from a personal ebanking account to a business account for tax purposes...keeps it separate from my personal account). Two weeks ago, she simply forgot to show up. She is ineffective at everything she does (cooking, cleaning....I can't even think of anything else she actually does...). We had her clean some of the cupboard shelves and she rearranged everything, putting high salt foods in Mom's cupboard. She literally fails at everything. I haven't fired her, even though I'm paying part of her wages, because Mom is so afraid of anyone new and paying more than what she charges. She's just scared. If we can get someone else in and get Mom used to them, it's just a matter of time before we let this moron go. She's like a frayed comfort blankie for Mom, and she's only wasting money that could go toward a *real* caregiver.

We're interviewing another caregiver tomorrow evening. I think she's too expensive for us ($15/hour with a 4 hour minimum), but she sounds knowledgeable and worth it and I think she'd be great as a back up or for Mom's doctor's appointments. The job I had was strange and I was let go (it was through the temp agency). I'm looking for another one, and the temp agency knows I'm hard on the hunt as well. I'm also trying to start the business, so if anyone has any ideas on a DBA, I'd welcome them. Everything awesome I think of has already been taken by someone else, or is too close to someone else's name who sells similar products such that our names would get confused easily and I'd lose sales to them. That's all I need and I'm on my way. No way to lose money on it, since I already have the supplies and I found a website that hosts indie businesses for free. I've also tutored recently, so that and my one paycheck went into the caregiver account. Haven't sold anything yet, which is disappointing (from Biogran's house), but I'm going to keep on that until stuff sells. 

Our new neighbor wants to help mow our lawn, so that's nice. Mom has a bit more energy these days, so she's going outside and even came with me to visit her grandkids (and stayed longer than I expected - I had to call it quits before she did so that I could tutor on time). She wants "phone friends" and to learn to be on the computer for "chat buddies". I don't know chat rooms that are appropriate for her, but it's a good sign that she wants to be a bit more social. She even sat in the living room and watched Avatar with me. We spent mother/daughter time together instead of caregiver/care-recipient time. She actually wanted to sit in the living room and just talk to me to talk.

We also had a pair of social workers out from the Office on Aging. They want to help us sign up for programs they know about that we don't. One of them is similar to the LifeAlert product, which means I won't have to spend my tax return on that (I found a company that charges $200/year if you pay up front), and another program is a grant that pays to repair/upgrade things in the home that will improve her life as a disabled person. They have a number of programs that sound very useful to us, and it just might be possible that Mom would qualify for *some* of them. A lot are out of our league because she doesn't meet the age requirement. Cross your fingers.

I also heard back (after some stalking) from MediCal. They were missing some paperwork, which I went in and filled out, and they requested more, which I'll turn in tomorrow. Hopefully that's the last of it, and then I can actually see a doctor without it costing an arm and a leg. I wouldn't be on MediCal, but on RCHC, which is the local name for the "Obama healthcare" thing. I know that's controversial and not always popular, but if I can see a doctor and still buy food, I consider that a win for Mom and I. I know it would be a relief for her if she knew I could be taken care of medically if I needed anything.

Things aren't going *exactly* to plan, but they're looking up and we are doing better than before. Not so much smooth sailing, but at least we got the boat in the water and we're moving and not yet drowning. Again, anyone who'd like to talk to Mom, I encourage phone calls and letters. She loves getting mail, and she loves talking (now that she has the energy to), and she has A LOT to say. She needs someone other than my ugly mug to look at and talk to, as I've heard everything 17 times already.

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