There are days in which I wonder why Canada has a secret service when we have a health care system whose administrators contain, twist and alter information with the skill of the 1960’s glory day spies.
Okay, the meeting in my living room: First I had second ‘attack’ after coming home Thursday and was up till 2:30 a.m. and then slept until 7:30 a.m. at which point I fretted.
If there were Olympic medals in fretting, my mother, I believe, would outfret any of your mothers; it is a twisted pride. But I like to think I could win at a local level in fretting.
I had called Juan de Fuca the previous night to find out about H. who was coming. So the night scheduler and I gossiped and I found out that D., the other sub manager, who was obsessed with clients sexual orientation (including mine) had moved on. But I wanted to know exactly what H’s job title was. It was RN Supervisor. This meant that she was an RN and that she administered the LPN’s and the care workers and that the only person above her was Robin. I called my case manager and found out that the meeting which caused this Friday meeting at my place was a round table VIHA meeting and that it was sort of brain storming and that for instance the O.T. thought there might be a device to help me take pills with limited hand function.
Meeting time arrives. In comes E. from VIHA and H. from Juan de Fuca. Now E. is the RN for VIHA and has to authorize anything medically from the case manager. So, effectively, if E. doesn’t want things to happen, they don’t. So I start with H. and say, so you are H. the RN Supervisor, right? And she says, no, not really.
Me: “You are an RN right?”
Me: “And you do have the LPN’s below you to administer.”
Me: “And the only person above you is Robin, right?”
H: “I talk to Robin, yes. Robin is in charge.”
Me: “So why isn’t Robin here?”
H: “This isn’t something Robin would do.”
Me: “So then what are you in the structure exactly?”
H.: “An administrator.”
See, what I mean, why is it a big secret what her job is? Anyway, the meeting progresses and E. who is representing VIHA starts doing a trick of my grandmothers, which is telling me things SHE felt but coming from other people like, “Your doctor said that he doesn’t want any care giver administering pills to you during the night.”
What my doctor had said to me the previous day: “They called up, I couldn’t go that day, I send what I had written up about the oxygen and the cooling and since I didn’t remember anything about the medication, I sent nothing at all.”
I asked about what the OT had thought, since I had heard there was a suggestion about help there.
E.: “The Occupational Therapist was invited as a formality because they had seen you more recently than others, but really had nothing to contribute.” (Which contradicts what my Case Manager said, however, the case manager can only ‘advise’ the RN E. It is E. who meets with H., the RN from Juan de Fuca and determines what care is actually given.)
So, what had they determined? They determined that the CISL grant, which I asked to apply for six months ago and was told if I did I would have my care removed was now something the ENTIRE team felt was the BEST OPTION for me. And everyone wanted to work with me to get me on the CISL grant (The Grant means I have to hire my OWN staff, inlcuding doing the pay and deductions for them and vacation and all them but the upside is......I don’t ever call H. again and complain). The problem was that every concern I had was then replied to, “Well, when you have your own caregivers on CISL, you can take that up with them directly.” For example, “What about clients with ALS, they must have problems taking pills in the middle of the night, what do they do?” Answer: “Many of them have a CISL grant.” Me: “Okay…but what do those who don’t do?” Answer: “We find most your age end up getting a CISL Grant.” Linda asks, “Are you going to help us find a similarly experienced night person for after Feb. when our person leaves?” Answer: “Once you are on the CISL grant you will be able to find your own night person.”
So, effectively they want to dump me but if they are going to give me a grant to have at least the same number of hours (or I don’t lose the hours I have if I apply and get rejected) then fine! It did seem however that VIHA and the OT, and the PT and the RN and the rest were like: “Get her a CISL grant and we won’t have to see her again.” Which kind of worries me as, hey, likely will still need an OT signature for adaptive equipment. Also, any time a entire group wants me gone THAT badly, I get...well....an odd feeling of 'where is the love?'
E. however, as the VIHA representative was relentless is somehow making the entire care process MY problem. For example, the application of cold to avoid heat which H. had said was a Task 2, well, due to advice from my GP and Cheryl the EMT from Death Valley, I wanted to move to a cold pack instead of a ice pack. E., the RN had talked to my GP and agreed though she wanted a wet towel. I said that since one of my concerns is incontenence, I see a problem in covering my body repeatedly with wet towels while in bed (Long stare). Like I don't see how sleeping in wet water will solve sleep problems. (Long stare) “Any suggestions….” (E. gives long stare) “Couldn’t we get a cold pack from the fridge?” (E.: “We have determined a wet towel is the best”)
Then E. tells me that since a wet cold water towel is not frozen, it is NOT a task 2, and will not show up on the task care sheet.
Okay, since August 2007 or earlier, I have been TRYING, and BEGGING H. at Juan de Fuca to get the care givers to cool me down. But H. says, “No, because hot or cold application is a task 2”, now, on Feb 1st 2008, over six months later, E. and H. have decided that cold water towel application is NOT a task 2. Why exactly did not H. or ANYONE say, “hey, as long as the water isn’t frozen, we’ll just add that to the task sheet and you don’t need to spend time with three doctors and two case managers trying to get that added on as a task 2.” It seems oddly that they might care MORE about the procedures than actually, um, helping me with my pain and heat intolerance?
I mention my concern to them about this CISL by March thing as in MY experience NOTHING happens in home care much less government grants in a month. E. looks at me and says, “The timing will be determined by how long it takes you to fill in the forms.” (OW! Got the SLAP DOWN!)
I said, I have an appointment with my GP on the 11th, if you get me the forms, they will be completed including GP portion by THEN. (Back to you E.!)
E. gives me a long stare. (she is really good with that stare thing.)
Then I am informed that E. has ordered a training session for my oxygen. Horaay! Until she tells me she has ordered several workers to come to my place next Friday at 1:00. Seriously E., do you think this is an VIHA building because that is the second meeting you have “arranged” and informed me of without yet checking with ME! Where I come from (Earth) we call that: RUDE.
I bring up the whole, it took five weeks to get a shower, why? It wasn't originally on the Task Sheet. Okay, can we NOW look at the task sheet and maybe add some tasks that might occur in the near future? E. and H. look between each other. “I think with the CISL grant, that is something you can take up once you hire your own staff.” Round and round it goes. Ahh!! I feel that I am in a ring having one of those “catfight” wrestling matches and these two are COMPLETELY coated with vasoline. I can’t get a grip on them anywhere. I even try to get them to have the workers CHECK my temp as I can't feel my own core temp so they can know WHEN to apply the cold. Nope, "That is not something that we feel is in the assessment level of the workers."
Anyway, the news is that I can have cool applied to me, but that for some reason, I always could but H. kept it a secret from me so I passed out lots instead for six months and was in pain a lot (remember my secret service comment): and that there is a training session for Juan de Fuca staff at MY apartment next Friday. During the meeting, my case manager called to set up a meeting on Monday for giving me the CISL paperwork.
I’m sorry that was so surreal but since I lived it, now you can too. I now have meetings: 2 on Monday, one on Tuesday, one on Wedsnesday, one on Friday, one on the following Monday and Tuesday. I don’t know WHAT the meetings are, I can’t remember that, but I am having them. So, I don’t see my Zombie view of life getting better any time soon.
The good news is that I was NOT able to get to sleep this afternoon because the people in Vancouver regarding disability tech support who we (Triumph and I) had decided yesterday was NOT going to work, Vancouver had talked and decided that a) THEY ARE SENDING ME A DISC OF Dragon 9.1 so I can put in on my laptop. And b) They are sending me a computer which I will make a LAAN/LAN (?) connection to my current desktop and use both as a co-desktop and I am authorized because I am a “special case” to put ANY programs on the computer they send me that I might need, or want. Which left me with two problems, get ahold of M. my case manager at Triumph and get her to NOT call the Vancouver people telling them we weren’t going to use them and also figure out what a LAAN/LAN thing is and how I do it with my computer. Luckily, my EMT experience occupied M. yesterday until about closing and she wasn’t in today so I left an urgent message about her NOT calling Vancouver Monday and deep sixing all the equipment they are sending me for FREE (in 2-4 weeks).
At which point in today, I had fallen over about seven times and was so sick that I had to lie for 30 minutes to get well enough to sleep, and then I fell over twice more upon getting up.
After getting up, I turned on the computer, which made strange fan noises, very loud before making a “Whump!” sound as the screen went blank and the computer went dead silent.
So, I guess, all in all, a kind of average day around here. Even with the VIHA people who took five weeks to authorize a shower because it wasn’t “on the task sheet” telling you that YOU are the slow up to the CISL grant THEY decided on Wednesday you need to apply for (but didn’t tell you).
I guess my only real complaint is that when Alice was in Wonderland with the Mad Hatter, at least SHE got a tea party (I want CAKE!).
Also, I am planning to go insane, but only once I clear my schedule in order to have enough energy.
13 hours ago