Made Myself Snicker...

I just realized that I can solve two problems at once if I lay the unread newspapers on the floor. It would help with the leaking and give the papers purpose. Haha!

Holy Crap in a Handbasket

Mom is so incredibly stubborn and blind to her own limitations that she thinks she fixed the washing machine just by taking my clothes out and putting her clothes in. So don't anybody worry- she's got it all covered. Oh and she went black widow hunting this morning, climbing on a step-ladder and leaning into the cupboards in the kitchen, despite me asking her to leave it alone as I had already sprayed it. Her shaking and history of falling, coupled with her impaired vision and reluctance to use a flashlight, made me fear for her safety on the step-ladder. But, as she said, she can do anything. If I didn't know any better, I would swear I'm living with a bipolar person in a manic episode.

She just told the dogs to "listen to the washer and see what happens." It sucks that she is so spiteful. I know it's the HE, and I know my patience is thin because I really do need a break, but wow, she is seriously being the biggest jerk in the history of dumbassery. My good friend lost her grandfather the other day, and all Mom could do was tell me about how I neglect her yet jump through hoops for my friends. This was in response to me texting my friend while getting dressed and asking Mom to give me a moment. Really, the weekend can't come soon enough. I know it's not her, but whatever evil zombie took over her body is on my last nerve and just might have to be sedated. I feel pity for the respite caregivers who will have to deal with her majesty this weekend. This is no way to treat people.

Although it's still somewhat amusing to listen her babble about how she thinks the dogs are feeling or thinking each day. Rather complex and confusing emotions, those little furry things have. Drama, drama, drama.

We Rise & We Fall

It's been so busy, and we are fairly desperate for help. I don't know where to begin.

Mom's new doctor is trying his best to keep up with the complicated mess that my mother is. His office is being incredibly patient with Mom and I, calling and clarifying, and confusing the staff as Mom tells them different information than I do. Hopefully over time and with review of her medical records, they will see which history is more accurate. I am having an enormous problem with Mom giving false info wherever she goes, and becoming even more stubborn about "being right."

Case in point, the wireless and cable bill, which will now cost us $50 more per month, but she believes it will save us $5 per month, and she utterly refuses to fix the increase in cost of the DVR. We have been charged $39.99 for it for the last 8 months or so, but it was and should be $31.99 per month after the first year of promotional pricing. In addition, she ordered the newspaper again. I canceled it a few years ago because she never read them and they would pile up on the lawn and them go directly into the recycle trash can. She said she would order just the weekend papers, so of course, we are now getting newspapers every day. She has no idea how that happened, and this is also falling into the "let her hit rock bottom" theory so that someone who can make a difference can see she needs someone else to make her financial decisions. When I ask why she doesn't read them, she scoffs at me like I'm an idiot and says, "Because I'm SICK, Amber!" To which I usually reply, "In more ways than one, Ma."

She had an appointment with her new urologist, which was quite impressive. This doctor knew her stuff. She keeps up on current research and literature, and is very experienced in Mom's condition. She fitted her with a catheter to give Mom a break, and prescribed medication that we were told didn't exist by her old PCP, and learned that her had been mistreating her bladder condition the whole time. He was going based off of old data, which he seemed to do a lot. I hate the idea that Mom was suffering with constant pain for the last several years just because he didn't have the time to keep up with new information. I love the idea that she might be able to find relief with this specialist. However, the catheter bag is uncomfortable on Mom's leg and she keeps having accidents. I'm not sure if the bag leaks or if it's user error, but it's hard to keep up with and now she needs her bed changed and I have a broken washing machine that will not clean her sheets.

Since I am totally overwhelmed and have been needing a break for quite some time, the alzheimers association is being wonderfully incredible to me and allowing me to spend this next weekend with my cousins. It is a much needed (and, frankly, much deserved) break from chaos and Mom's emotional instability. I have a sore throat today, likely from the stress of the last several weeks and being constantly behind, and having Mom walk behind new and literally saying negative things in my ear all day long. There is so much to do and so little time, and I simply can't keep up with it all. Mom is more needy than ever, and even the dog had surgery and had to be babied for two weeks. The other caregiver is still out sick and we're trying to prepare for another craft fair. My car tags are due and I have no money, Mom ran up the credit card and won't tell me how, and some days are spent entirely on the phone fixing something the insurance confused or Mom confused or getting medical records from point A to point B. It's all just overwhelming and more than one person can do. I can't wait for the weekend and this sore throat better back off, because I will NOT let ruin the first break I've had since 2010.

We see her new GI on monday. They say that GI also means hepatologist, but I have a feeling that they will deem her too complicated and refer her back to the specialists at the hospital. The sooner, the better; I think that a lot of her mood swings are caused by HE and that it's still not under control. I have been able to let her mean comments go, but that seems to upset her even more. I think she wants to know that what she says matters to me, but then when she says something mean from HE, she cries over regret. No way to please her, so I'll just go on my little vacation and not let her craziness make me crazy.

I've been typing this on the tablet, in the car, with a dog on my lap and Mom in with her therapist. Things will be better. This too shall pass. Until it does, I'm hanging on by a thread.

Why POA is necessary with HE

Because HE doesn't allow people to properly assess a financial situation or even perform simple mathematical calculations. And now, I fear our cell phones might be shut off because of her actions.

How to Eat Low Salt Cheese

Apparently, it's not with english muffins and eggs. 

Add Ginger Tea, Subtract Ice Cream

Mom woke with extreme pain again this morning. Her pain is getting worse, and I really think it's time to go to the hospital. She says she can't sit up in the chairs in the waiting room with her back the way it is (osteoporosis, slipped discs, and pinched nerves...oh, and mild scoliosis). I get it, but doing this every day isn't getting her anywhere. I think she needs to be scoped and tapped. I think they'll find undigested food in her stomach that won't pass and isn't allowing proper digestion/absorption of food and ascites that's pushing on her hernia, which, by the way, is growing quickly. It's now the size of her new favorite fruit - the clementine. 

She's still extremely sensitive and highly emotional. She was in too much pain to get her blood test today, and that's when I had planned on filling the scripts that the doc gave us yesterday, so I forgot about them until too late. I'll drop them off tomorrow morning and should be able to pick them up the same day. I'll give the buspar a week to calm her nerves, but she really needs more than that. I called the insurance company, again, and got another half dozen names of therapists who may or may not try to help. So far, all of them have said that she's "beyond their scope of expertise". That's shrinkspeak for "wow, that's a lot of issues/drama/time I'd have to spend...here's my therapist-shaped hole in the door from running away so very quickly." BUT I also got the phone number that providers would call to get hooked up with the insurance she has, and I've already spoken to a doctor that specializes in cognitive rehab to regain some of the cognitive function she's lost and they are very willing to go through the process to get themselves on Mom's insurance and see her. There is HOPE on the horizon!

In other great news, we'll meet the new group of folks next week. This group is a support group of people with autoimmune disorders. Mom's main issues are chronic and painful, and I know liver disease isn't necessarily autoimmune. However, she does have fibro and CFIDS, and her fibro is a big fat deal considering it accounts for a lot of her pain, her low pain threshold, a good portion of her fatigue and a good portion of her depression. She is so very lonely - I couldn't even focus on the office today while the caregiver was here because she wanted attention so bad - and I know she'd benefit from a group of peeps who understand her chronic crappy-feeling and might be able to offer her suggestions to relieve the pain or at least an "I'm there with you in the same craphole" kind of comradery. Now that she has her own email address, I can hook her up with these people (they meet both online and off, how great is that for the whole good days/bad days roller coaster?), and a facebook account, which I know offers support groups and friends on a level she's not had since becoming disabled over 12 years ago. Slowly but surely, she will become an internet addict. Haha. It's good to have goals. 

I should probably explain the title of this post. Mom's persistent nausea is such a huge issue. She has zero appetite with it and burps acid all the time. It's horrible. Ginger is known for its anti-nausea properties, and Mom's friend was wonderful enough to give us a few ginger tea bags for her to try. The caregiver suggested chamomile to calm her mind and body, since she's so very agitated, but I know that some herbal teas have interactions with medications. I think I'll use that new app I just got (epocrates) that the new doctor used yesterday and check with interactions before giving her anything like that. But ginger and jasmine tea is good. The not-so-good is that she spilled the tea I gave her, so she burned herself. So frustrating! I know she didn't spill it on purpose, but she refused to put an ice pack on it. Her skin was already so red from it after five seconds and she STILL wouldn't use it. She said it would hurt worse than burning. She said her skin always turns red...I said so does mine when it's burnt. She didn't get the point. I'm going to have to keep an eye on the area for blisters. I have aloe with lidocaine if necessary. And the ice cream? She says she hasn't been eating enough to survive (and I know she's having problems digesting food and that she feels starving constantly, even right after eating, even when simultaneously full), but she ate a whole carton of ice cream in just about a week. That's a lot for her, and a lot for someone with lactose intolerance and a special intolerance to ice cream. It makes her gut hurt more than any other kind of dairy product. I told her no more ice cream. I think she's causing a lot of her own intolerable pain, and that's giving new meaning to being her own worst enemy. I think between the stress, the ascites pushing on the hernia, the ice cream, and whatever's stuck in her stomach, the combination is causing the extreme pain. I think all of that would be solved by going into the hospital, being tapped and being scoped, and actually getting a diagnosis. But here I go again thinking my mother might actually listen to something I say. Silly me.

Today I heard her tell the caregiver, "Amber was right..."  I don't know what I was right about, because those were the only words I heard as I came into the living room, but I was celebrating them. The caregiver told me to cherish them, because Mom's never going to admit that again. Wise woman, that caregiver. 

If I can get my stuff together and kill this headache, I'll be posting links to stuff we'll be selling. We have a lot of big bills coming up very soon and no way to pay them. But I did find a lot of stuff we no longer need or use in what is slowly becoming an office again. Things like LP records and players, 8 track tapes and players, books, 3D painting/image thingies, legos...so we'll be selling. I also have a few orders due in February, so I have to get those done in a timely manner, but I'm hoping to be able to pull it off without pulling out my hair. For now, I have to go nurse this headache. Even whilst I blog, Mom is telling me how stress is not her problem and that today is something weird where she feels hungry and full at the same time...have I ever mentioned that I hate HE? I think she just stepped on a dog in the laundry room. Yup, she stepped on Shady. I think that's my cue for bed now. Tomorrow is another day.

Doctor To the Rescue...

Today we met the new doctor. He has great reviews and even a patient in the waiting room told us how awesome he is. I think we overwhelmed him a bit, but he handled it well and wants to treat Mom. He wants to make some changes to Mom's medicine regimen and send us to his own local liver specialist before our preferred hospital 50 miles away. Change terrifies Mom, and the idea of not having pain meds and seeing a local liver doctor make it worse for her. She isn't quite as optimistic as I am about this new doctor. The hard truth of it is that she is on too many medications that are harsh on the liver and that she's built up a tolerance against. In short, they only hurt her and she shouldn't be on them. I agree with his logic and I know it would be better for Mom to stop her opiate pain killers, but I think the psychological dependency will be extremely difficult for her to overcome.

He is referring her to a pain management group, a liver specialist in-network, and a GI. He also ordered her weekly lab test and wrote scripts for meds that I think will help- buspar for anxiety (no more xanax) and fentanyl (no more norco). In reality, he isn't leaving her without meds...he is taking her off the ones that interact and do harm without benefit. He seemed to appreciate that I was organized and on the tablet and that the caregiver and I are working as Mom's advocates. He likes the "team" idea. Very happy about that! His staff is already working on the various referrals she needs to continue care in the direction we were moving in before her old PCP damn near killed her. He couldn't believe that she was on so many medications that interact so severely. He said that some of her symptoms might be attributed to the interactions and not really symptoms of HE. I know we came at him with a lot today and overwhelmed him, but I think once we get back on track, he can really be an advocate for team kathy. I'm am cautiously optimistic. I was before the appointment, and it looks good so far. I just hope he hangs in there with us and realizes that it won't always be so frenzied. It's the switch at such a critical diagnostic point that makes everything so urgent. It will take time to catch up, and I wholeheartedly blame her old PCP for wasting this time and making Mom suffer longer. But for now, it's a sigh of relief that this new doc is willing to take on such a case as my mother and never even mentioned that he could choose not to. We were told he has a good sense of humor. We didn't get to see it today, but being overwhelmed with so much information and Mom's tangential conversational style and emotional outburts (she was sobbing through a panic attack by the end of it) I certainly can't blame him for not being cheery. I promised him we will laugh at the next appointment and that I am actually really nice to work with in this capacity. I am hopeful.

We were also able to make an appointment for next week for free physical therapy with a certified personal trainer. He is so nice and sounds like he really knows his stuff. He is clearly educated, ran gyms before, and wants to open a gym for at-risk youth in the area. He considers helping Mom part of his ministry and wants her health history to be able to design a plan just for her. I am really hoping that Mom likes PT, or at least feels like it's good for her so she doesn't shoo him away. She would feel worlds better if she worked her muscles a little bit, and it would help stop her muscles from withering away. Convincing her of that is an entirely different and difficult task.

We will be scheduling little classes for me to teach her how to use the tablet. Hopefully next time we can get her a facebook account and she can start being social. It's all coming together! I have to remind myself to have patience. I am far too eager to get Mom feeling better and enjoying life again. I guess if you're going to be eager for something, that's not such a bad cause to be eager for.

Another blood test and more calls to make tomorrow. I have to keep tabs on her neuropsychologist so we don't waste time. I know today scared Mom, but I think it was an overall successful day.

New doctor(?)

In just over an hour, we have the first appointment with a new doctor in a new group.  I have all the paperwork (medical history, medication list, referrals we need switched over, goals for this appointment and the upcoming ones). This doctor has good reviews on vitals.com, so I'm cautiously optimistic that he'll be willing to treat Mom and see this as an opportunity to be team leader. With the secondary caregiver and I as Mom's advocates, I hope he will see that he would not be solely responsible for her treatment and follow-through and that we can improve her quality of life together. Go Team Kathy? Wish us luck! <3

Mom is "one of those people"...

Thought I'd share something funny. Mom and I were at a tri-birthday party yesterday, and I'm so glad she was able to come and enjoy herself for a bit. She was talking about dogs with another party-goer and how much she loves her babies. I told them that she takes the dog-love a bit far. When we got home, she told me, "I know you don't believe in this kind of stuff - that some people can talk to dogs or feel what they feel - but....I think I'm one of them."

Mom thinks she's the dog whisperer.