Monday, July 14, 2008

Keio Bento and other surprises

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 know...with HUMAN LIVES!


cheryl g said...

Aaaah the bento lunch surprise is so sweet and you are so lucky! true love indeed.

Yikes, I hope you get through tomorrow's appointments OK and I hope the fever and nauseau go away soon.

My disgust with Beacon and VIHA continues to grow long after I thought it could grow no more. I think Linda and I need to sit down with you and come up with ways to increase the safety margin on you receiving meds from the untrained. I'll think about it.

Perpetual Beginner said...


The sad thing is that, in my experience, the higher ups don't actually want the aides to know very much, because then they start getting all uppity.

While I have no medical degree (BA in Cognitive Science), I've worked in hospital and research labs, and been peripherally involved in medicine my entire life. So I count, in my own estimation, as a very informed lay-person. Upon encountering a client who was supposed to take 42(!) pills a day and discovering that she was (understandably) unwilling to do so on most days, I requested a list of medication priorities. Because I knew, just from eyeballing her cabinet, that a good third of her medications were for treating side effects of other medications. I.e. if she didn't take the iron pill, I shouldn't be giving her the stool softener. The response from on high was "give her all the pills".

Well, as a PCA, I was legally not allowed to do more than hand her pills, but apparently they thought I had magic powers. So rather than give me some kind of information to work with, they left me to sort out for myself as best I could, which medications were dire, which were okay to skip on bad days, and which sets went together. Which I did, consulting with Dad (how do people survive who aren't related to physicians?), and spending much off time in the local medical school library to sort it out.

I was then reprimanded for attempting to leave a suggested priority list for the other aides. The standing order was to make sure she got all 42 pills, even if she was specifically rejecting them (she was fully mentally competent), and I was in the wrong for even suggesting that other aides might not be able to do so.

This was the same place where I was commended for calling my supervisor when I showed up for work and discovered that the prior aide had locked the apartment door with the immobile client inside (along with the key). I was commended because most of their aides would have simply gone home and not let the agency know that the client was trapped - but somehow they would magically persuade the same client to take 42 pills she didn't want to take.

(Frankly she was horribly overmedicated and really, really needed one doctor to go over her entire medication list and crop it down to something reasonable, but that wasn't going to happen, since the only people suggesting it were the aides and the lady herself. Why should anyone listen?)

In non-ranty mode, that is a seriously cool Bento box. I love the shade of blue.

yanub said...

BEACON, Beacon... what could it stand for?

Bad Employees and Careworkers On Notice

Break Each Aid Contract Over Night

Banal Evil Agency Continues Off Note

Do you have any idea what these new tests are supposed to be for? Haven't they taken all the blood they need? I just don't get it. Why do they keep looking at your blood instead of your noggin?

Well, at least there was a lovely bento box and a loving wife.

Lisa Harney said...

Okay, yeah, the pain pill thing alone is enough to give me anxiety attacks right here and now - I mean, my liver's slightly touchy (as in fatty, non-alcoholic steatohepatitis)and I get paranoid about a single dose of tylenol.

Just the thought of someone else giving me medication when they think it's time and not knowing the proper schedule, or possibly even picking the wrong pills just pushes my buttons. That's just pure horror waiting to happen. :(

SharonMV said...

Dear Beth,
Sorry that you're feeling bad today & that you have to face the blood draws tomorrow. Hope you are sleeping now.

I got my lovely postcard! Thank you so much for the card, it's pretty decorations and most of all for the note you wrote me. It made my day.

I was in bed most of the day too with a fever & sinus infection coming on & the flare up of joint & other pains that accompany every illness.

Will be thinking of you tomorrow. Hope the appointments & tests go OK. I had to do the 24hr urine collection thing too. I'd just rather not have a huge jug of urine in the fridge.


Shea said...

I am so sorry. It must be very difficult to have such a fear of needles. I was very much like you as a child. Then I became a nurse and it got easier. I did my own tb skin tests and allergy shots. I'd much rather draw my own blood too, but they would look at me weird if I did that. I still think I'd hurt me less than someone else. It was very nice of Linda to make that lunch for you. It sounds as if you are pretty lucky to have her in your life. It's the little things that really make our day isn't it? I also share a little frustration about your in home care or actually the whole way your country is doing things. I'm not sure what the real solution is for health care, as the US has its whole set of problems as well. I previously did home care for disabled children though, and I like to think I was a bit more compassionate than some of your workers seem to be.

Gaina said...

Little Miss 'Engine that Could' needs to be reminded that she works for you therefore she does as she'd damn well told and if that includes leaving you get sleep on a little then that's what happens!

You will be fine with the needles. I'm telling you. Now repeat it to yourself at least nine times (the number of repetitions it takes for an affirmation to seep into your subconscious).


abi said...

I want to comment properly, but I do not have the words. It's just plain wrong; it's hard to believe that someone would let this happen. What are they thinking, to put money before lives? It makes me very angry. It would make me more angry if I could properly comprehend it. So very many obstacles to you receiving the care that you need.

The lunchbox was lovely, though.I am always appreciative when I come down to a cup of tea in the morning; prettily presented lunch is just SO much better!

Dawn Allenbach said...

What a groovy surprise with the bento lunch!

Stupid, stupid medical agency! Linda, if they kill Beth, you sue their asses. That kind of procedure is careless and irresponsible.

They'll either kill people, or your one day worker will just make people "work through the pain."

Good luck with your appointments! Though you're probably already there.

FridaWrites said...

That is one beautiful bento box!

I hope all the testing goes well--I will be thinking of you.

Perpetual Beginner's the kind of caregiver I would like, one who really thinks about what's needed when and perceptive enough to stick around in an emergency. I end up seriously overmedicated in the hospitals and wouldn't want someone dogmatically giving me all the medicines in my cabinet rather than my 2-3 regular meds, another if needed at the time.

em said...

OMG, the Bento Lunch of Love! What a cool surprise.

And I'm so sorry that blood drawing is a part of your day today (tomorrow? I'm a little hazy on the day.) I hope it goes okay.

It really outrages me that you pay for "caregivers" who are really "profit centers". Yeah, we live in an ethically and morally upstanding culture. Of course we do.


Veralidaine said...

Aww! Bento!

God, I have tried to type something funny or meaningful about this new SHIT Beacon is pulling on you several times now and deleted it because I am just angry beyond words that they would jerk you and every other client around like this.

I wish so much that there was more I could do.

Anna said...

Hope that the tests give some answers to what can make you better, or halt the deterioration.

Can't say much about medication, carers and so on, but it sounds really really outrageous and frustrating.

But what I really wanted to say is: thank you so much for the postcard of/by? Shima Katase...Loved the stamp of the beautiful Virgin Islands. I've put it my glasscupboard with all postcards and photos:) Sending you a postcard of my favourite redhead.

How many postcards have you managed to send so far?


Neil said...

Hi wonderful:

I got through a colonoscopy yesterday with no trouble at all, except having a hand so cold the nurse couldn't find a vein for the intravenous at first); We likes our Demerol, we does!

If I can survive the doctor investigating the bits nearest and dearest to me, you can manage blood tests. Of course, they won't LET you not survive; you might need another test! :(

Anyway, I hope it goes/went as well as possible for you.

I know what BEACON will do with all that money: they're going to hire someone for $300,000 annually to determine why they're not meeting last year's performance targets. Oh, and they'll whine to the government for more money because they're perpetually short-staffed...

The Bento lunch is beautiful. A true sign of how much Linda really loves you. But an expanation, if you please? Is the ornate thingie on the left (in the first photo) a case for the chopsticks? If so, then I'm truly jealous; I would carry chopsticks to work for some lunches if I had a way to make sure they didn't get turned into toothpicks in the backpack.

Going back to Medic Alert tags: EVERY time they were mentioned in first aid classes and in the St. John brigade, we were told to check wrists, ankles and necklaces for medical information tags. It was part of the primary examination for us. I'm quite surprised that your paramedics dont know enough to do that. Mind you, anyone who doesn't know how to read the instructions and squeeze a cold pack to activate it...

Manymany Zen hugs for courage and reassurment,

Kathz said...

I can't think what to say about the horrors you face with the "caregivers". I wish you luck with the tests. And I loved the picture of the bento box - a lovely surprise and something special in the midst of all the horrors and incompetences.

Elizabeth McClung said...

Okay, the fourth and final appointment for today is DONE. Now I just have to sleep.

Three blood draws, two urine, and one 24 hour urine test, which they woke us up from a nap between draw number 2 and 3 to tell us to throw away and do TOMORROW. I is tired of peeing in dixie cups. Also, initial draw was for...wait for it - 20 vials of blood. That it turns out is a LOT of screaming.

Laura said...

Unfortunately, I have a feeling that the money that Beacon thinks they are going to save by implementing this new policy is going to be just a drop in the bucket when it comes to their liability in any wrongful death. I just cannot fathom its legality. Do you live in a "Third World" country? Who oversees their accreditation? I don't think that this bodes well for them either. I am just floored by this stupidity.

Linda, that was really sweet. My kudos go to you for making Elizabeth's day like that.

Hugs to you both,

Raccoon said...

Beacon... is that even legal?

I have done this, periodically, both at home and in the hospital: I will ask the person giving me medication first, what is it and second, what it's used for and third, why should I take it.

If they can't answer all three questions, I won't take the medication.

Of course, I don't have to deal with pain medications like you do...

Elizabeth McClung said...

Cheryl: I am lucky, and she stayed with me through my hell day today with the needles and urine.

I think the fever was just loss of reserves.

Yeah, anything to not have "Dead by incompetant accident" on my tomb.

Perpetual Beginner:

Well, when the RN told me that "Care giver observations don't count as they aren't trained" and my night care giver works in the lung ward at the hospital and knows a hell of a lot more about my oxygen problems than her....

That woman is lucky in that a) you care enough to say, "Gee 42 seems like a lot" and b) that you DO have someone to consult - isn't that the job of the RN's at the care agency?

I am sad, that this isn't the only one this is happening to but sort of glad that I am NOT crazy and this city is normal - or am I REALLY sad about that, I think the latter.

YEah, cool bento box!

Yanub: Right now I call THEM the Mob, because they are the only game in town and no rules seem to apply to them.

I HAVE no idea what the tests are for, except the HIV one, becuase of my clearly dangerous lifestyle.

Lisa: Yes, considering they need to give it before the previous batch ends, like pain pills so they decide when to wake me up and I just swallow, I don't know if it has been 4 hours or 2 hours?

SharonMV: Really glad you got the postcard - and I REALLY hope I didn't send your stickers back to you (that would be um, the stroke if that happened).

This is my second 24 hour collection thing, the last one was a year ago and showed I had a tumor on my adrenal gland. No one has done anything. I have been begging them to redo it and see if the results are the same and DO something - well I am at least getting the test, whether something is done or not, I can't say.

Shea: A lot of people have fears of needles but people with Trypanophobia tend to not. For example I have one nurse who can't have needles, and she is an RN, in the hospital, but she passes out if someone says she needs to give blood. (Vagovascular, the most common). There are dozens of deaths a year because of it, and some medical journal articles on the deaths but the problem is that the medical world is SO USED to needles that they cannot concieve of being more afraid of a needle than say, a loaded gun or jumping out of a third story building. Even though the article is written by a doctor who had a dislocated knee for several months until he could find an anestheologist who would use gas to put him out.

For most people it is impossible to "overcome" you just learn how to channel the terror into a way that doesn't damage too much. But for instance, people choosing to die rather than have a shot of insulin is a classic example of Trypanophobia. But medical staff just can't believe it but "phobia" means an unreasonable and unreasoning fear - oddly, the MRI department has learned that claustrophobia exists, but the rest of the medical world is a little slow on needle phobia. Sorry, it is just I have had about 40-60 times where people have said, "Oh I used to be like you." and then they see someone try to give me a needle and go, "OH!!!! you have a NEEDLE phobia! I get it now!" So this isn't directed at you, it is just after 3 different attempts of phobia programs, and 10 years of working at a protocol, it never gets one iota easier, not even this last year with a couple sticks a month. Not one of them was easier. So instead of feeling that I am gigantic failure in the needle department, I think there are just phobias that sometimes never get solved - what makes me unusual is that I simply refuse to give up, often I will be the first needle phobic an entire hospital will have treated (and thus do not know the standard protocol to have a crash cart nearby as death by heart attack/vagovascular is the number one cause of death). Thanks for the positive sympathy. After getting down my protocol, I did my dental work, and all the rest.

The bento box proves that I am VERY fortunate to have Linda in my life.

Gaina: I could not agree more, unfortunately these people seem to think that they work for BEACON and they will "humor me" if they feel like it.

Hahahahaha! Repeat after me: bullets don't kill, say it nine times. Then "Jumping off cliffs don't hurt" hahaha!

Thanks for the hugs and positive thoughts. An irrational fear cannot be reduced in such a way I do however use: visualization therapty, proximity therapy, self hypnosis, sound therapy, control therapy and oversensation therapy as well as being held down by someone I trust. That works for about 60 seconds if you scream a lot.

Abi: I agree, I didn't know when I moved back that Canada had become an HMO - and that there was a death/profit margin.

It really was a very pretty lunch - Linda is so nice!

Dawn: Yeah the bento was cool - she took one to work and impressed everyone there too.

There WILL be deaths, the question is how many and how soon. But unless it is a politicians mother, no one will care.

Fridawrites: Total great bento, thanks - and you are right, I SO much want Perpetual Beginner as my care giver!

Em: Good nickname, Bento box of LUV!

Yeah, it was a hell day, I posted about it.

And yes, a LITTLE concerned about the quality of home care and the management. When ALL the trained medical staff are used as management, who is left to see if medical standards are being kept.

Veralidaine: Thanks, the bento was good and yes, Beacon sucks - but thankfully, tomorrow is another day postive is supposed to go here!

Anna: Yes, I really hope the tests HAVE some point to them? But since they KEEP finding problems they don't treat, I am sort of in surreal testing land.

Glad you enjoyed the post card. Really glad. Oh good, a red head. Um, I guess that I am past 200 by this point, I had a few good weeks. I only did 20 so far this week, but I have 100 new post cards coming in this week so I have something to write with while I can still write. Please send the word around if anyone else wants a postcard!

Elizabeth McClung said...

Neil: I am glad you are done but sorry they didn't put you out entirely - that is standard in some places (demand it next time!). But still, done is done. And I am sort of mostly done!

IT made me laugh, because you are so right, they probably will commission a report on why they need more money with the funds.

Yes, that is a chopstick holder and you put it in or next to the bento box which also has a wide elastic around it before it goes in the bag (remember, Japan is a VERY pro-Bike nation).

It is a great Bento Box - now where can I find you one?

Kathz: Thanks - I need the encouragement. And I like how Japan trip just keeps giving, with help from Linda.

Laura: They are exempt from liability, actually I and WE the people being cared have to sign a form which says that if the employee trips WE are responsible for their "work space" - Beacon puts liability on the individual workers, thus, sort of on no one.

VIHA who funds them, lowered the rate paid by 10% last year, everyone EXCEPT Beacon went out of business so VIHA and BEACON are sort of co-conspiritors, if they turn on each other, no one gets any care, but then the press keeps showing how people keep dying anyway. Dunno, no matter what happens no one ever gets fired!

Raccoon: I have no Idea - right now I am on "Self directing" - the problem with the seizures is that it leaves me unable to move or talk so that means if I have seizure meds or other meds, they could give them to me while helpless to resist. Something I will have to deal with in the future. Right now I am more concerned the number of times I have passed out or had seizures and NO RN or 911 has been called. But then neither has a priest for an exorcism either - so a plus there.

Neil said...

About the colonoscopy: I was awake when they started, but I now realize that I mut have fallen asleep during the procedure, since I don't remember the end; I do vaguely remember being ut back in the room whre I started, and being told to stay on my left side and don't try to hold the gas in. I must have said that my stomach was hurting, beasue the nurse brought a heated blanket for my stomach, which helped the gas pass. They inflaed the colon somewhat for the procedure. Whee!!!

I have decided that he worst thing about the whole procedure was the laxative in preparation. It tasted of far too much orange, and medicinal. Then 14 hours of diarhea to clean things out... After that, the Spanish Inquisition would have been welcome!