Wednesday, March 15, 2017

Transitioning

Mom has been at Kaiser for twelve days. I've worked ten of those twelve days. It feels really good to be able to earn money again while knowing that mom is safe and properly supervised. She has a 24 hour sitter. They've moved her twice. I'm assuming that is to give each crew a break after a few days. The longer she is there, the more they understand why I refused to allow her to be discharged to my care again. One person cannot take care of her. It is physically impossible for one person to be awake for that many hours every day.

I practically had to throw a royal fit in the hospital to get them to take me seriously. I went as far as threatening to take my own life if they insisted that I taste her home. I said that I had no desire to harm her, but, since there was no one else to care for her, I might need to drug her. They put me in a secured room with no access to a phone. They took all my belongings and sent me to John George, the local psychiatric hospital. I spent the night there, about six hours, and the morning psychiatrist released me after a very brief interview. I'd spoken to so many people by that point that there was really no indication that I would be a danger to anyone. It was pretty clear that I did not belong there. John George, by the way, strikes me as the type of facility used as storage for people who cannot be trusted in society. I sincerely doubt that anyone would go there to "get better". I was warned not to say those kinds of things anymore, regardless of how frustrated I become. I was also advised by some of the staff there that I should refuse mom's discharge over the phone or simply stop answering their calls and force them to do whatever they'd do if she had nowhere to go.

I took their advice. I even blocked the hospital from ringing my phone so I wouldn't be tempted. I let that go on for almost a week, and then my brother started losing it. They were harassing him constantly. I didn't feel any sympathy for him, but I did worry about the house since it's still in her name with that ridiculous reverse mortgage hanging over it. I called the Kaiser social worker and left a message, but I got no response. I decided to take a chance and visit her, hoping that I hadn't been placed on some black list. She was well. She was actually happy! She was on some good drugs, and she had someone to talk to all the time. She still refused to exercise, but that's not my problem anymore.

Mom's doctor has officially listed her as physically and mentally incapable of living independently, which I'd been pushing for almost a year with no progress. Now that Kaiser has to care for her, all the adjustments to her medical records are swift and easy. The new social worker assigned to her case is ready to help me in every way she can. If I can get the VA application moving forward, she'll be all situated asap. I don't know what that timeline looks like in this land of seemingly endless red tape, but at least there is progress now. I kept getting turned away when I was trying to do it all alone. Nobody wanted to help me. Now she's their responsibility, so they're being polite to me because I am technically helping them.

For the first time since I took over her care, I feel optimistic about the direction in which things are going. Although the process may take a while, I can see an achievable goal. 

I started driving a Lyft rental last weekend. I'm making decent money for something that requires no training. I'm not loving it, but I am grateful for it. I'm still tired, but I am not plagued with worry like I was two weeks ago, and I can sleep at night. Omg I can sleep! I wish I had more hours to sleep and screw around, but I gotta get these bills under control. I'm hitting it hard. It feels good. I don't care about the long hours. I just want to clean up and organize this mess.

Since I am in the car so much, I've already finished three audio books. One of which was a beginner's guide to tarot. Despite the mediocre quality of the recording, I felt inspired. As depicted in today's card from my hauntingly beautiful Mary-El deck, 3 of Swords, the peaceful dove summons the courage, strength and energy to carry the burden of power through a storm. Although it appears to be small and laboring, the intense struggle is transforming it into a mighty eagle. I never thought of myself as a dove, but to this dove I can definitely relate. The job looks impossible, but she's doing it. That's my girl.





Monday, February 27, 2017

Any minute now

I took mom to Kaiser emergency again in Saturday. After two calls with the advice nurse, I was instructed to just go to ER for a respite. They kept her overnight so I could go home and sleep. I got about seven hours that night. She was prescribed a sleep aid that normally isn't recommended for dementia patients, but it works without compromising her coordination. I'm adjusting the dementia medicine back down to a half dose tonight because she is sleeping a lot, and I'm concerned that she could be too drugged up. I know that she needs a few days of long sleeping hours to make up for the past week of terrible insomnia, but I don't know how strong the effects of the meds are (together or separately) because both are new.

Before she was moved to an observation room on Saturday night, I spoke with the social worker on duty. We stepped out of my mom's room and into a semi-private space a few steps down the hallway. My mom yelled and pitched a fit for the entire time I was out of the room. The tantrum continued even after I returned. She said that she wanted me to help her scream at the ER staff. I refused. The nurses were very helpful and polite. One of them brought me a sandwich and juice after mom's dissatisfaction with the two meals she was given. Mom watched me eat the sandwich with a strange look on her face. She asked me if it was good, and I told her that it was basic. It was basic, but I was tired and hungry. She asked, "You're just going to eat whatever they give you?"
   "Yes."
  "Why?"
   "Because it's what they have. This is not a restaurant."
She looked at her food again (the second meal they brought her), ate a few more bites and quieted down. She said she still didn't like it, but she didn't scream anymore after that... at least not while I was there.

The next morning, I spoke to the new nurse on duty (barely an hour into her shift) twice within fifteen minutes. I could hear mom in the background insisting that I immediately appear. Although I skipped making breakfast and coffee, opting to go straight to the hospital instead, it took me an hour. An hour is an eternity to her if she's waiting. She thinks thirty seconds is ten minutes. She has a lot of difficulty with gauging time and reading clocks.

Her dementia is overwhelming. It's a 24 hour crap shoot. I never know when she's going to be herself, a vacant husk or somewhere in between. We've been burning through the disposable underwear at an alarming rate. I have to get her into a facility before she becomes completely incontinent. I don't know how much time I have left. It's all happening so fast! I pray that getting enough rest will help mom recover some of the independence she had just a couple of months ago. I need to be able to get out of the house to make money. She can't get any services for free, we have nothing left after paying bills from her fixed income, and a few bills go unpaid 2-3 months at a time.

I'm applying for adult day care and requested to be reactivated as a DoorDash driver. I signed up for Instacart too. The day care hours aren't long enough for me to drive Lyft, especially since I need to drive a rental. I'm not sure what else I can do with a few hours every other weekday, but I hope I come up with something good soon.

Sunday, February 19, 2017

Breaking Point

It has been 19 days since mom was released from the physical therapy rehabilitation nursing home. What was initially her conscious, annoying preference to have assistance with everything and be super clingy and chatty, brought on by the attentiveness of the nursing home staff has developed into a genuine helplessness. Mom's dementia is the worst I have ever seen it. At first she just refused to exercise because she didn't want to listen to me. Now, she's so weak that her arms and legs tremble after five minutes (or less) of activity.

Here's the problem: she won't sleep. I'm not sure what is happening in her dementia-wracked mind, but it must be nightmarish. She will only close her eyes for a few minutes before opening them again and sitting up. I tried giving her the Norco that she was prescribed, but she still won't sleep. The drowsiness just makes her weaker and more confused. It seems to also make the unpleasant stuff in her mind worse. Without the sedating meds, she needs help finding and using the bathroom when she gets up at night. During the day she usually knows where she is going although she often needs help getting there. When sedated, she can barely get out of bed, but she still tries it. She doesn't know why she is getting up. Sometimes she has to go to the bathroom, but she has to be both convinced and assisted. She's so unsteady on her feet that I've had some close calls avoiding injuring myself to keep her from falling. I can't sleep at night because she needs to be monitored so closely. I am also becoming a safety concern as my sleep deprivation builds up.

I sat with her at dialysis for the whole three and a half hours yesterday. She has a cold with a nasty cough (which is definitely not helping the insomnia). Since her dementia is so bad and she's so exhausted already, combining those with the energy drain of dialysis treatment makes her a loopy, frail mess. She often blows her nose into her hand, spraying and dribbling mucus everywhere and spits wherever: ground, floor, garbage, any cup within reach and often onto her own clothing or bed linens. I had to assist with the nose-blowing and spitting, distribute snacks, keep a germ mask on her as much as possible and clean everything up. That's, of course, in addition to keeping her relatively calm through her episodes.

After dialysis, she was in a state of inconsolable misery. Physically, it was much worse than sedating her. Most of my safety close calls occurred during that time. Around 7pm, her groaning and whining escalated to loud wailing and calling for Jesus's mercy. When I asked her what was wrong, she couldn't tell me. She just kept repeating herself. When I asked if she was in pain, she said yes. I asked her if the pain was bad enough to go to the emergency room, and she said that it was. She NEVER wants to go to the ER! I usually have to either threaten her or trick her to get her into the car for a hospital visit of any kind. Although we can't afford another ER visit (so far we're at three visits since rehab with a $75 copay each, and, without me earning a single dollar for the past two weeks, we are literally on the verge of losing everything from transportation to housing), I knew we had to go. A few miles into the drive, Controlla by Drake came in the radio. Her groaning ceased, and she sat quietly for the rest of the trip. After taking the hospital exit off the freeway, I asked her how she felt. She said she was fine. I asked her if she was still in pain, and she said no. I asked her if she still wanted to go to emergency, and she said that she didn't care. Since we were already there, I told her that I would at least pick up her prescription refills. Well, I couldn't afford them. I had $11 in my bank account, $7 on her credit card (I had to order a new card for mine because of a weird charge last week, so I don't have one at the moment - even if I did, I only have $50 available credit left). She needed her blood sugar pills for today. Luckily, the co-pay for that med was $10. I would've given them a roll of quarters from my trunk for those pills if I had to. One of her prescriptions is over a hundred dollars! How on earth am I supposed to pay for that?

So, anyway, here we are. I have about $50 in change that I can coinstar for food. I have to make the fuel in the car last as long as I can. I'm still riding around on a spare because I can't afford another new tire. A friend loaned me money for that, but my bank hasn't posted the PayPal transfer, which I initiated on Thursday. I can't drive for Lyft in my car until I get my scheduled maintenance and safety inspection ($800+). I suppose I could deliver DoorDash or Instacart in a pinch if it was safe to leave mom home alone for a while, but it simply is not. I want to use the money, whenever the hell they decide to post it, to rent a car with the Hertz-Lyft partnership program, but I will need to be out of the house for long hours. That's really the only way I can see to earn enough money to start making a dent in the massive debt we're accruing and have an acceptable quality of life.

The government program (Medi-Cal is the gateway to all the senior care and support services) won't help us because her retirement income is a couple hundred a month higher than what they consider low income. My lack of income while I am primary caregiver doesn't even come into play, which is such bullshit. I can't even get her a damn wheelchair!

My February car loan payment is overdue because of the double blowout. I was driving for Lyft on the last few days of my last valid safety inspection in an effort to make enough money to pay for that and a rental, but I instead ended up spending more than I made. I had to buy a new tire so I could go pick mom up from dialysis (almost three hours late). The second flat is still in the trunk. I know that I'm not supposed to ride a spare so long, but... no fucking choice. I have nine days until my March car payment is due, and I haven't yet paid February, and I have no income.  My car insurance is due tomorrow. I will pay it late from mom's SSI when it posts Wednesday. I don't know what I'll do about the car loan payment yet. I will also need to pay my cell phone.

Last night, after a brief, wonderful few hours of lucidity (which I used to get some much needed rest), mom went back to the crazed insomnia and coughing. She had a bathroom accident just before 6am. She almost got there in time. If she hadn't been so confused and combative, we could've made it. However, there we were, both exhausted and irritable. She could barely stand while I cleaned her up, but we somehow got through it. An hour prior,  I helped her go pee. An hour later, I had to calm her down and assure her that she didn't have to get up because it wasn't a dialysis day, and she wanted to discuss the music I was playing for her (yes, I've had the Bluetooth speaker on in her room ever since the Drake incident, but she seems to prefer Billie Holiday and others from that era over newer tunes). An hour after that, she wanted breakfast. It's noon now. Neither of us has slept since the bathroom accident. Her coughing has gotten much better. I gave her Mucinex Friday night despite my reservations about drug interactions because she just couldn't breathe and she was suffering so bad that I was desperate. A trip to the ER the night before was fruitless. They wouldn't help her at all. They just ran a bunch of tests and told her to drink more water. The Mucinex worked pretty well. I sat with her for a few hours and urged her to close her eyes every time she opened them. She slept for a while that night. I tried repeating the same process again after dialysis yesterday, but it didn't work. I don't think she needs any more medicine IF SHE WOULD JUST GET SOME SLEEP. I'm tightrope walking on my last little tender nerve. I keep explaining to her that she needs to go to sleep because the body and mind need sleep to heal and function correctly, and she does this crazy, delirious debating that doesn't even make any damn sense. Grrr. Go to sleep!

Tuesday, January 31, 2017

Forward One, Back Two

Mom's returned home from her two weeks at a physical therapy center. She lost her balance during the weigh-out at dialysis and fell on her hip. She seemed to just be bruised at first, but she began to lose mobility in the opposite leg over the next couple of days. I took her back to the ER, and I insisted that the doctor observe the way she walks. Nothing was broken, but she appeared to have pulled something. It looks like a hip flexor injury to me. I suffered a similar strain during my failed attempt to climb Shasta. She couldn't safely climb the stairs to enter the house. I had no plan of taking her back home again until she could do so. She has very good health insurance.

It was two weeks of heaven. The family ate dinner together almost every evening. We had homemade pie for dessert. Every food that mom can't eat was consumed at some point. I cleaned the kitchen, living room and her room. I disposed of useless clutter and organized most of her possessions. I removed the frame from her bed to make it short enough for her to get in and out of it unassisted. The energy in the house was much improved as we crossed into the new lunar year. I bought a few Chinese good luck charms and placed them according to feng shui recommendations. It took two days to complete the project to my satisfaction. On the third day, Chinese New Year, I fixed the gate that had been lying broken on the side of the fence for two months and opened up the player piano to figure out why it no longer worked. That was another relatively easy fix. On day four, I went in for my last day at the bakery. I was exhausted, but I managed well enough. That is, until, at the final farmers market stop, I locked the keys in the delivery truck when I went to the restroom. After that, it all went south. I reassigned myself to have the longest last day in record, en bring with a company bowling party. Sunrise, sunset.

I'll be looking into driving a Lyft rental until I've saved enough to pay for my car to get scheduled maintenance and my mom's property taxes. It'll be a long, boring stretch.

Monday, January 9, 2017

Me Time

I felt like I needed a break from the Song of Fire and Ice series, so I browsed the psychology section and happened upon Shahida Arabi's Becoming the Narcissist's Nightmare, an eye-opening collection of personal stories, scientific research and detailed descriptions of a type of toxic personality. The book jumped out at me because of my mom. I knew early in life that she was cruel. I just didn't know the degree of her cruelty. I don't think I really understood its depth until very recently. I had no idea that it was even possible to be the kind of person described in the book. I mean, I knew that narcissists were completely self-centered, but I didn't know that they could also have a complete lack of empathy. How could someone, who isn't a sociopath, completely lack empathy? How can a human being understand empathy well enough to imitate it without actually feeling anything? That is what confuses me. I can't. I can't manipulate people without having some kind of remorse - I even think back to interactions in the past and wonder if I said or did something hurtful that could've been avoided. You mean to tell me that every time my mom made me feel bad for something, it was a calculated strategy to provoke the desired response? I yelled at the recording a few times. Shock. Disbelief. Then, I got really quiet as I listened to hauntingly exact descriptions of manipulations my mom used on me my whole life. Now, I'm not even angry. I spent 40 years wasting such draining levels of emotional anguish and frustration on someone who never had any interest in me beyond what I could do for her. I threw away so much to be here right now, my entire life. I just didn't know. I feel used, but I know that she doesn't see herself as an exploiter. She thinks that she's just making her way in the world as best she can, just like anyone else. I believe that she even thinks that other people are the same as her! That's sad. I can't change her mind. I can't change her at all. Forty years is more than enough time to dedicate to that. Everything I do from here is only for me. I can do some of this to make me feel better, but I feel like I have done enough to move on with a clear conscience. There is a lot left to do in the transition to getting mom into a senior care facility, but at least I no longer need to feel like I am abandoning her. I understand that my life and happiness never held any value to her. She would leave me in financial, emotional and psychological ruin with no remorse. She would even criticize me for being too weak to endure it. This is my parent. This is the woman who raised me. I don't know how I managed to live through that. I must have someone watching over me.

As I listened to more of the book, (I spend a lot of time in the car, so I often buy audio books to entertain me when I'm not with a passenger) another person popped up as a strong toxic force in my life - my boss. Sure, I only work one day a week at his business, but, after realizing that this toxicity may be the reason why I can't stand to be around him and feel uneasy just thinking about him, that one day seems even heavier a burden. It's no secret that I have been ready to give up that one day a week for quite some time. In fact, I've told him and everyone else working there that I'm ready to leave. I'm not sure why he's not looking for my replacement... or maybe I am. If he is a narcissist, he needs to tell me when I can leave, not vice versa. Well, that doesn't work for me.

I am a crazy, beautiful wreck. It's kind of a mess. I want to wander this world with my heart open and connect with strangers. I want to be kind. I want to be helpful. Unfortunately, that makes me a target for those who see others as disposable resources. It's difficult to tell the difference between the real and the imitation sometimes. I spent my entire life being deceived. Wow. Just wow.

Tuesday, January 3, 2017

Turn the page

I began 2017 with an awful virus that is still plaguing me. This is not at all surprising when I consider that I began 2016 almost exactly the same way. I didn't cry this time. I just took it like a grown-up, and I continue to do so.

A few days before I came down with the illness, I had a couple of passengers receive the same message from the universe on the same day. "Be thankful for what you have." They both said the same exact words. They were so different from each other, but they were both tuned in to the same wavelength. I knew then that the message was also meant for me to hear. It was the day before Christmas. I had no money for presents. I knew that mom and I wouldn't have an actual Christmas (no tree, no gifts, no one to celebrate with), and I felt like maybe I had it all wrong from the beginning. Maybe none of this shit is important. Maybe it doesn't really matter whether we exist or not. Maybe this is all for nothing. Who will even know we were here? What is the point? Then, I received the message. Be thankful for what you have.

I have an extremely comfortable bed. Sure, my bedroom ceiling leaks in two places when the rain is really strong, but it stays warm. I have a comfortable car. It smells like burnt oil after driving more than ten miles because I'm 9000 miles past the scheduled maintenance. The front passenger side tire has a slow leak, but it's still nice for a short ride and it helps me get mom to and from dialysis just fine.

I have to drive at least two long days each week (of the three I have available) to keep the few luxuries we have. I'll need to drive many many more hours to make enough money to do the scheduled maintenance on the car. I mean, once I've recovered from this awful virus I can taste that into consideration. I'm still not making enough to pay my school loan, credit cards or taxes. I'm not sure which of those is going to screw me first, but it's all on the horizon. I don't sleep at night. I mostly just worry about shit. When I do sleep, I dream about it. Then I try to work more hours, and I get sick. It's a vicious cycle slowly and surely killing me. I'm aging very quickly inside. In all my obsessing, I still haven't come up with any solutions or relief.

What I have come up with, during the last four days that I've been too sick to work, is the undeniable importance of my wellbeing. I have been neglecting my needs so badly that it's a wonder how I've managed to function this way for so long without going completely psycho. I have accepted that I'm in this position because of my own choices. I wanted to make sure that my mom is properly cared for. I wanted to be here for her because it made me feel better and less guilty for being happy (wow, that's so cracked). I am not doing this simply to be a martyr; I wanted to show her that my heart, the same generous heart that she constantly criticized me for all my life, is my greatest asset. The thing she tried so hard to destroy is what saved her ass in the end, and that makes me feel pretty invincible. Whatever comes of this debacle, I can handle it. This is the most difficult and challenging thing I have ever lived through. If I can do this, I can fucking rock anything.

It's not to say that I haven't struggled. My word, have I struggled! Like I said, I can't even get a good night's sleep! Man, this life is not for the faint of heart. I never really thought of myself as super strong, and I have plenty of slip-ups that I beat myself up for, but I'm still a badass. I forgot that for a while. I pitied myself. I saw myself as unworthy and useless. I wanted to have it just be over, all of it. I wanted to just turn it off like a light switch. Click. Done. I wanted to off myself and leave a one-word suicide note: "mulligan". I amused myself with that thought so many times. It's just so perfect. It still makes me laugh. Sometimes I think the only reason I didn't do it is because it was so damn funny. You can't kill yourself and laugh at the same time. It's impossible.

I lost everything that gave me purpose and security. I got fat. I spend most of my time taking care of the person who made my life Hell. I really don't know what to do from here, but I'm gonna start with taking care of me. I'm gonna set aside time to do sun salutations and sit in meditation. I'm gonna go see a movie. I'm gonna dance. If I'm lucky, I'll stumble upon some solutions along the way.

Thursday, September 29, 2016