Today, I had a BIG surprise, because remember long ago that package so carefully gift wrapped by Keio Department Store in Tokyo?
I didn’t. So when my lunch arrived by home care, tada! I had my very own Bento Lunch.
It turns out that I had bought MYSELF a deluxe Bento two tiered lunch box from Keio the day we left Japan. It can even be microwaved. I had forgotten about it but Linda had not. And along with my deluxe chopsticks and holder (chopsticks are actually quite good for eating with limited hand function, once in place just use shoulder muscles, you can even get a little device to hold them for you and then put them between your fingers). So I opened up the little carrying/warming case to keep the box all toasty (little rabbits on blue).
What surprised me the most was that I was fairly sick last night, and up until 4:00 am. I had been running a fever since late afternoon and so when I woke this morning I stayed in bed until the last possible minute. But someone had to let the home care in (the manager won’t allow a lock box for entry, something we will have to address again, now that I am in a vastly different state than last year). I was so punk that after a full Gatorade I was going to go back to bed….only my home care wouldn’t let me. She is the one that is all about the “person trying.” Well, she is supposed to come for showers but I get assisted showers other days because I need someone who will ASSIST me, not watch. And this woman needs to learn the new reality. There will be some days I will spend in bed, and it has nothing to do with trying or not trying: it depends if I feel so bad I think my organs are dying or my body wants to invert itself through a hole in space. Not long after she arrived I knocked, but I was in a fetal position and had knocked for help from there. I got oxygen and pain pills (the breakfast of well, not champions, how about addicts!) and felt good enough to sit up.
This is when I got my next surprise, I have medical appointments for the next three days, starting tomorrow. Tomorrow I have THREE appointments including two where I give blood. That’s right, it is dreaded needle time (I have Trypanophobia, it is even on my med-alert braclet, which means, you bring a needle towards me, I can go into a fugue psychotic state which allow me to move up to 300+ lbs with one arm - yup, happened more than once). And I get all THAT fun 30 minutes after I wake up. Super Fun! I also have to fast for X amount of hours, but thankfully, that did not include lunch. So here it is, complete with the little love lunch note on notepaper from a Yuri anime series with two girls lovingly looking at each other. Ahhh, what bliss, and Linda got up early to do after stay up with me on a horrid night with a fever spike? (LUVVVV TWUUUUU LUV!)
She had even made me a sticky rice with celery and stuff in it just for chopsticks. :)
On the bad news side, I have to collect a JAR (well more like a gallon container) of my urine and keep it in the fridge, I tend to use the large dixie cups and transfer (yeah, you really wanted to know that). And do two rounds of blood tests, one after not eating (the punky way I feel all the time now, not a problem), and one after eating (problem!). Plus I think another 7 or 8 vials of blood. Since I have needle phobia and will be drugged I then have to try and sleep the drugs off in time to make it to my next appointment where I HOPE I will be fitted or started on the road to my wheelchair with headrest. I wish I had more interesting or exciting news for you, I wish I knew why I feel so bad today my eyeballs want to drop out of their sockets. But I don’t.
On the more bad news front, in an effort to SAVE MONEY Beacon Home Care is giving all workers a “Medical Course” (two hours I think, or maybe just 1 hour?), where now instead of Task 2 with some pills, where a worker calls an RN to verify giving medicine that is life sustaining or life threatening….the workers just GIVE IT. A worker told me with another client they didn’t know a new medicine for their client and called in to find out (as they WERE supposed to do as the RN’s WERE supposed to verify the dosage and pills). The RN told her that NOW she, the care worker wasn’t SUPPOSED to know what the pill is, or what it is for, she is just supposed to administer it. Some pills are “Task 2” which means special instruction and medical training. They have eliminated that so they can get rid of half the RN’s at the agency. Think about it, do you WANT your chemo administered by someone with NO medical training, with no supervision, and where they GUESS?
If you have two different “Blister Packs” (packs of presealed pills), well then it is just Russian Roulette if you get a lethal dose because the worker will NOT be calling to verify that this is the correct dose and time anymore. Needless to say, the workers from other countries NOT fluent in English (a significant percentage), according to the people I have talked to, believe that if they DO call in, they will be fired, because it will indicate they can’t do the job (someone should tell them this is BEACON, they never fire anyone, at least according to the personal assistant to the Director of the Company). So now care workers will GUESS. Yupper, they take a guess on life threatening pills.
Now since I take a pill for pain which COULD wipe out my liver and since I am trying to UP the dosage AND since I tend to hallucinate in pain and not be able to tell time and ask for pills 1 hour after I get them….it means this affects me too. It means that a bad night worker could send me into liver failure (which kills you after three very painful days). And I haven’t even gotten to the scary level of pills yet, the ones where I am SUPPOSED to have an RN verifying the dose (you know, like they do in the hospital, instead of, for example, sending the janitor down to decide what dose you get or not!). But once I get those pills, there WON'T be an RN verifying, because the worker will have taken a couple hour COURSE. A course which doesn’t even tell them WHAT drugs they are giving and what they are for, or what complications could arise.
I told one worker that I anticipated an extra 3-5 deaths a year minimum from this new policy (oh, and a savings of $100,000 - $150,000, sorry, I forgot the important part!). And she agreed, she said that was the EXACT same statement she gave to the RN in protest to the policy. The RN told her not to call in again.
Somehow, I am not feeling the love?
Off to bed early (rise and shine for needle time!), I will have to be medicated to sleep tonight – that is the thing about having to wake to do your worst fear…TWICE. It tends to make it harder to sleep. I was scheduled to have a night worker tonight but they didn’t come. The scheduler said that wasn’t Beacon's problem and call the day people.
Linda was rather vexed, and said, “Is there a point OF your schedule? Today your schedule read that there was NO day care and a night worker and we HAD day care and now, 20 minutes after they are to be here, no night worker.” She was told to speak to the people in the morning.
The irony of it was that the person saying, "not my problem", technically, that was MY employee. I am paying them (or VIHA is on my behalf). Gosh, I wish VIHA understood the difference between advocate & employer and USELESS SUCK UP (one doesn’t pay the organization when they do a bad job, the other goes, “Oh well!”
I have asked when I can expect a spot inspection on the care I am recieving in the home. I got a strange look. Maybe that administrator didn't speak english? Or just didn't understand the idea of accountability...you know...with HUMAN LIVES!
17 hours ago