Look Out Networld; Mom is Online

I'm teaching Mom how to use a tablet. It's slow-going because of her condition, but she did a lot better than I thought she would. She gets frustrated that she can't search for all the things she wants, but she's getting the hang of searching. I'll keep her searching for a little bit and then show her how to journal using the tablet. The mic function is an awesome way for her to be able to journal without having to type. We set up an email account for her tonight and I'm hoping she'll be able to read this blog, maybe blog some herself, join meetup to meet some folks like her, and maybe even facebook. She tires easily, so it looks like she'll have a time limit of an hour or so for now. I think that might just be the way things are. Her eyes get watery when she gets tired and she won't be able to focus on the screen. But don't be surprised if you (eventually) see a post with bad grammar in the voice of my dear Mom. The mic function doesn't use punctuation. =P

Best comment of the night? When Mom was searching for low sodium cheese, she said, "5 used!?!...Amber, I don't think that's cheese!" 

They were cookbooks.

Surprise Dinner for Mom :)

Tonight, I played with a recipe and made Mom some yummy friend chicken (nearly KFC-flavor) that was low in salt. I know, shocked me, too! But it was actually easy and it worked and she loved it! I like making her smile. With potatoes and veggies, she had a balanced, low-sodium dinner that she actually enjoyed. Score one for frying everything in oil! =P

Her belly is still huge and full of ascites. Still leftover from the hospital stay. We increased her water pill dosages, so we ran out water pills faster than expected. I ordered them from the pharmacy, but it took them 3 weeks to get it to us, so she didn't have any for about a week. Her feet keep swelling every time she walks (the fluid goes to her feet), and it's putting a lot of pressure on her hernia. I think she needs to be tapped, but she's scared of it and it hurts, so she's refusing. The liver doc said get tapped or increase the pills, so we increased the pills. It'll take a while longer for her belly to go down, and she's in pretty bad pain, so maybe she'll change her mind about being tapped. We'll see.

We're only a few days away from meeting the new doctor. I'm trying to prepare things for him; medical histories, medication lists, referrals that need to be extended or changed or requested, etc. We'll see if he's willing to take on the challenge that is Mom. I'm hoping he'll at least give us the scripts for the meds she's running out of until we can switch to another doctor. Her old one is so incredibly spiteful that he's refusing to write her scripts. She still got her blood test at the lab, and they sent the results to the old PCP, and his nurse did call and tell us they had them. She said she's sending us the results from the past few tests, but I doubt it. That office is coming down with multiple complaints from multiple places - patients, insurance, and providers...I don't know how he'll stay in business for much longer. I really hope the new guy becomes our saving grace. I'm crossing fingers.

Other than all the insurance crap, life is pretty much the same here. It's the off-season for shows, so I won't be at any craft fairs for another month or two. I'm making custom orders, so hopefully that will yield more caregiver money. I'm also carving out a plan on how to reduce the clutter and clear out the house of Biogran's estate. I'm starting with the office. The living room is going to get crowded, but the office is going to get organized, and then the dining room, and then the living room. We have quite a bit to sell, and a lot of it needs to be researched and priced, so it'll take me some time. But I'm hoping it'll keep me busy for a while and keep us in caregiver funds. 

Big party at the caregiver's on Tuesday - it's a tri-birthday celebration. I'm hoping Mom will have a good time. She loves the caregiver and has become quite attached to the people at her church and is really trying to read the bible. Actually....several bibles. She has a few devotionals and different versions, large print, King James, New International...she's not sure which one to read, so she reads a little bit of each on any given day. She had an eye appointment and got glasses, and it's the cutest thing to see her reading with her glasses on the very tip of her nose and her eye mask on top of her head. I laugh every time. The glasses are only for seeing close up, so she puts them on the edge of her nose so that she can read and watch TV at the same time, but then she always forgets that an eye mask is not a normal fashion accessory. I have to take a pic one of these days. 

Don't forget to sign up for the walk. Tell everyone about it! I'll be asking for donations to get me to my goal after the new year, but for now, I'm asking people to walk with me. I found a wonderfully nice woman, a survivor of life, who's founded a non-profit sober house for women and children. I told her I'd try to help her any way I can. I don't have money or a whole lot of time, but I have a little bit of time and contacts. You never know what tiny thing you know or can do that might open someone else up to something amazing and change everything for them. I love seeing people helping other people, and I love helping them do it. So you'll be seeing ads for a family fun night up here soon.

And now, time for hot chocolate with a peppermint candy in the bottom. :)

ONLY TWO DAYS LEFT!!

Click the link above to register for the Liver Life Walk 2013 while it's FREE! You can always register after the 1st of the year, but why wait? I know some people don't know what their schedule looks like in May 2013, but I say register anyway and save yourself a spot. Don't miss out on free registration and FREE ZOO ENTRY while it's being offered on a silver platter!

Donations are always welcome! My personal goal is $1500 to raise by the time of the event. I can't do it alone, so help a girl out. Every dollar raised helps move research forward to find new treatments for my mom's liver disease. This means so much to me! If that one dollar sitting in your pocket could be one of the dollars that improves the lives of the over 30K liver patients in the US, what are you holding onto it for? That dollar yearns to be put to good use. It cries at night when you don't hear. Trust me on this. Let it do good work. Set it free to sponsor the liver life walk and make it's dollar-dreams come true!

I know that was corny. Did it work?

Christmas Shopping With Mom!

The last few days were pretty good. Mom made me laugh quite a bit. She's in so much pain and her stomach is doing summersaults, but she's been going with me and even cracking jokes. She complains THE WHOLE TIME. Yesterday, I lost her in Costco for 20 minutes. I had to pick up some medication and she had to use the restroom, so when she was done, she was to meet me at the pharmacy. But she forgot, so while I sat on the bench near the pharmacy, waiting for her, she was wandering up and down aisles trying to find me. She got distracted by a box of dried fruit and thought I might have used the restroom, so she took the fruit in there. So lucky she didn't get busted by an employee. A few employees helped me find her, and she didn't know what my problem was since she thought she was shopping fine on her own. She was so sweet, though, picking out gifts and making yummy desperate noises at foods she can no longer eat due to the salt content. I almost snapped a pic of her when she picked out a lovely bouquet of flowers for the caregiver. 

Today we went shopping for the kids gifts. We can't spend a lot this year, which makes Mom so sad, but that's not what the holidays are about anyway. I keep reminding her. We picked out some cute stuff the kids will love and kept it low cost. She was so distracted BY EVERYTHING in Target today. Usually, Mom pushes the cart to help her stay balanced and act as a walker, but she can't push by herself. I pull near the front on the side. I kept turning around to find I'm pulling the cart by myself and Mom's wandered into another aisle. I really want to put a leash on the woman. She wants every toy for the kids, checks every price, looks at every food product for at least 3 minutes at a time....she kept saying that this was like a field trip for her because she never gets to go shopping anymore. She hates that it's so hard on her to just walk around - she tires so easily. But she did it, and she got out of the house, and she likes the toys we got the kids. And she made me laugh quite a bit with the weird crap she says. She was really into those stocking stuffer dollar sections. Hahaha.

An anecdotal example of Mom's hilarity: On the way home, Mom was telling me about a book that her friend gave her. It has restaurant/fast food items listed with their sodium contents. She said, "I checked out that book, and BOY you wouldn't believe the CRAP we've been eating lately!" Made me laugh so hard. I still need respite (oh dear heaven, I need respite), but it's been easier the past few days. She's been *mostly* pleasant and we've been working on being nicer to each other. 

I hate HE. It's so infuriating. Nobody knows about this illness, so I can't just tell people she has HE and be done with it. I have to give a mini bio lesson and description of symptoms. It's so much like dementia that I just tell people that's what she has when I don't have time to outline the difference. She hates that I say that...it's like a personal insult to suggest she has dementia. I think it's fear of losing her mind and herself...but either way, when I'm looking for her in a large warehouse like Costco and describing her clothing and why I'd have to search for my 56-yo mother, it's 20x faster to say she has dementia than go through the lesson. It's something we end up fighting over. I'm tired of walking on eggshells and watching what I say in case it hurts her feelings. It is what it is. It's HE and mimics dementia to the point where I think it IS dementia. Dementia is like a symptom (a group of symptoms, really), but not an illness. The illness (the cause) can be a hundred different things, and in Mom's case, it's HE. I know it hurts her feelings, but I'm really very tired of the "make sure you tell people it's not from alcohol" and the "make sure they know it's not Alzheimer's" and the "but this time I'll remember" or "I'm not in denial about the HE, but it's not all in my head." This is life for us now. She forgets stuff. She gets confused and lost easily. She gets scared easily. She can't follow simple directions. That's not ideal, but it's life and we just have to accept that it happens from time to time, handle it when it happens, try to find ways to improve her cognitive function, and keep living through it. It's like she's lost her legs and is in a wheelchair but gets mad if you mention the chair or moving her or that she needs to use the big stall in the bathroom or that she can't reach stuff on the higher shelf. I guess the problem here is that I've accepted her loss of function and her diagnosis and she hasn't yet. I realize it's much easier for me to do that, and in her vulnerable state, it will take even longer for her to accept it. I'm trying to be patient, but she does start fights over things like me telling the employees that were helping me find her that she has dementia. 

We can't change the medical group retroactively, so we don't have a doctor for Mom until January. The nice thing is that a lot of the specialists she sees now are in the new group, too, so she won't be changing *too* much. We will still lose her liver specialist because he's moving to another hospital and it's much too far for her to make that drive. But another one will come in and hopefully be just as awesome. If not, I have a great referral to one south of us. She's still having problems eating and is experiencing a lot of nausea. She keeps shaking and says her bones are frozen, and then asks for ice water. I give her cold water, but I'm not giving her ice when she's literally shivering and says she can't get warm and turns up the heater. Otherwise, things are the same. Keep on truckin'.

New Doctor, Old Drugs

So after many conversations today, I do believe it necessary to procure a handsfree headset for the house phone. Or have it surgically attached to my head. Whatever the cheaper option is, let's go with that.

The doctor's office called and said that they hate us so very much (how dare we complain when they won't do their job!) that they refuse to treat her or write prescriptions even to get her through the end of the year. They tried having a conference call with the insurance company to get Mom a new doctor. It was the doctor's wife (yes, the same hostile woman who hung up on me) who tried conferencing with the insurance company. Mom told them that if he wasn't going to be her doctor anymore, she didn't want the doctor's office on the phone to know her business and that she'll talk to the insurance company sans conference call. GO MOM!! I had to laugh at that - my obstinate Mom is still in there and ready to kick someone's booty. Since she is confused, stressed, and forgetting everything, she told them to talk to me to work it out. The insurance company called without the doctor's office on the line, and since we haven't seen this doctor this month and he's refused any kind of service (again, I cannot sufficiently express my dissatisfaction, frustration, and outrage at the ridiculously unprofessional way in which this office conducts themselves nor my shock at what a BAD doctor he has become over time..simply disgusting), we may be able to get the insurance company to retroactively change her to a new doctor effective December 1st. If not, we'll have to wait til January 1st, which means that Mom has no doctor to name during the next two weeks. If she has any issues, we have to go to urgent care. Same with meds - and urgent care may or may not prescribe them. 

The good news is that I've finally gotten through the maze of the insurance company's website and downloaded the formulary for 2013. The only drug I don't see covered is any sleeping pill of any kind, but since they are so common, I'm sure I must be missing it. It's 240 pages long, so I'm sure I'm just not looking in the right place. I've tried searching various drug names, sleep aid, insomnia, etc, and nothing. So I'll call them again and make sure. It also has lots of helpful information as to how we can ask for exceptions. For example, we can ask for an exception with her migraine medication. She must take brand name because generic does not work on her at all. Brand name is a higher tier, which means it would cost more, but we can ask for an exception to be charged at the lower tier, since it medically necessary and not by choice that she is restricted to name brand. It also looks like some of her meds have dropped tiers or that generics are now available - which means cost savings for us. I have no clue who told her that her liver meds weren't covered or that they'd cost $4K/month - that's insane and I have a hard time believing that anyone told her such things. However, she got this stuck in her head and has been weeping so much that she's caused her stomach to cramp again and she's moaning in pain in bed right now. I think we need to get her back on buspar. She was having fewer crying spells with it. The anxiety is going to kill her before the liver disease has a chance to.

The insurance company was genuinely shocked at the behavior and attitude of Mom's previous PCP. The rep told me that she completely understood that we'd need a new doctor because she has never spoken to an office as rude as this one. She said she was only trying to figure out what happened, and they were so rude to her that she wanted to hang up, but to help my mom, she didn't. I got a good laugh out of that. It's vindicating to hear that other people have the same problems with this office. Since they blamed me and called me names (btw, his wife said I'm a bitch, but we already knew that, and their actions were causing physical harm to my mother, so you're damn straight I'll be a "disagreeable woman"), it's a relief to hear that everyone else who deals with this office has the same problems. It allows me to put it in perspective. It's very difficult sometimes to decipher if I should be sweet and nice or persistent or demanding. It was very difficult for me to tell this doctor, who we'd been seeing for over a decade and previously loved and regarded as an excellent diagnostician with a generous heart, that he was not doing his job. Sometimes, as caregivers, we're told that we need to stand up to doctors who pass us off and don't treat the ill. That the squeaky wheel gets the grease. But it's terrifying to think that your squeaking led to your loved one not being treated. That I pissed them off by speaking up and made things worse. I hate the idea that this doctor is treating patients with this same attitude and lack of care, but I needed to know that it wasn't *me*. 

I hope the new doctor lives up to his reviews and is willing to take Mom on, or at least to maintain her until we find a doctor willing to try to *help* be healthier and live comfortably for however many years she has left. As sick as she is, she's only 56 years old, and other than the HE, she doesn't have anything life-threatening. I've always said that my mom doesn't get the illnesses that kill you - she gets the ones that make life suck. The kind where you're in pain or limited in some way, but it just won't kill you. That's not what G-d had in store for her, for whatever reason. So, HE notwithstanding, she could live for another two decades as long as she has a doctor that actually treats her. It would be marvelous to find one that wants those years to be comfortable.

No Meds for Mom in 2013?

We've been going through this doctor switch for a few weeks now. Quick recap: her PCP literally gave up on her, so we tried switching to someone new for an interim, but he wouldn't even see her, so we had to go back to the worthless doctor to ask for prescriptions, and now the insurance company told Mom that her liver meds aren't covered in the new year.

I can't decide if I'm shocked or not that the doctor we tried to switch to wouldn't see Mom. On the one hand, she's complicated and we did read a review on this particular doctor which said he did this before. On the other hand, I'm almost certain it's illegal and I know it's morally repugnant. He came in to the room, said he was sorry that he can't help her and to go back to our old doctor. I told him we *can't* go back to her old doctor as he refuses to treat her. He said he doesn't have time for all her medical problems and to go back to her old doctor anyway. In the meantime, Mom needs meds that have run out, and no doctor is writing prescriptions. Frankly, all this makes me glad I go to a free clinic. (Which, BTW, the doc that refused service to Mom has a low-income clinic, and yes, his office is mid-ghetto.) We have a switch set up for January 1st to another new doctor, but he has good reviews and I'm hoping he will at least keep her stable until we find another doctor willing to take her on. The one I prefer is willing to, but Mom doesn't want to drive 27 miles to see her. I think it's worth it, and may be our only shot at someone who will help her and actually care how she feels.

After this blog, I'll be calling the insurance company...again...The instructions they gave me to look up the drug formulary for 2013 were not quite right. I couldn't find anything like what they were describing on their website, so I'm going to call and see if they can't walk me through it. They're very nice on the phone and try to be helpful, but they get confused easily. Which ought to say something about insurance policies - if they confuse their own employees, how are patients supposed to understand their rights and limitations? 

On the bright side, we have about a month's worth of caregiving left in the fund for now. A gift from family, the last few shows (not much profit, but it's something, and I used the iPhone that was gifted to me with the card reader for the first time!) and the few t-shirts I've sold thus far give us enough to hold out until about the second week of January before we're out. I'm hoping to sell more things before then. I have a few orders to complete before Christmas, so that will help get us another few days.

On the less-than-bright side, I'm so headed for burnout. Mom's incessant babbling - about nothing...I could go with it if her conversations had a point, but they don't...they're just words strung together, sometimes without a topic or even nouns - and her constant forgetfulness, the constant need for *something*, the lack of a half-dozen of me.....there's just too much to do and it's getting to me in a big way. I need respite, and I don't know where to get it. I contacted someone who might be able to help find me something. Hopefully I'll hear back. At this point, I'm jumping every time she opens her door (she refuses to let me WD40 the hinges that squeak so loudly) because I know she's going to come out and irritate me or ask for something I can't give her or insult me six times over. Generally, she's putting me in a fowl mood and I'm wanting to run to Mexico. I guess that's my barometer; if I feel the need to run to Mexico, it means I need respite.

Appt today!

Neuropsych assessment today. Waiting room time means I can finish some orders. Hope this lady can help us figure out what's up with Mom! Assessment leads to testing and testing leads to diagnosis and diagnosis leads to treatment!

Loving the Liver!

Two very positive things to talk about today! Mom's latest liver appointment update AND register to walk with or sponsor TEAM KATHY at the San Diego Zoo! Let's get straight to it, because I have blankets to knit.