Using lines from horror shows seemed appropriate. I AM still alive. Though not awake that much, nor have I yet to be fever free for more than 16 hour for now: 50 straight days. I DO REST. I just don’t have the opportunity to totally rest often, as taking my dump of the every other day takes 3-6 hours (not a rest) and usually uses all resources creating a fever. We have found I can ‘safely’ talk about 60 minutes a DAY. More than that or speaking faster than ‘disability Beth time’ makes me use up energy, which often produces a fever, then seizures, etc later in the day. So I am still alive but yesterday overheated while stickering postcards, tried to make it to the door, did not, then dragged myself using an elbow and my abdominal muscles the 30 feet to the bathroom in 35 minutes. Turns out, that was REALLY exhausting as I slept for 13 hours. A couple days before that, I talked a lot, did a lot for seven hours and then….slept for 12 hours. This makes for short days. Still working on that ‘fever free for three days’ thing. Wish I had a counter I could html in here to put in for days like 1, 1, 1, 0, 0, 1, 2!!! – then at three there is fireworks.
To add to further problems, Beacon announced that they will no longer book overnighters for me because…..it takes to much time administratively. That due to my condition and to me a lot of the workers leaving (we were told sort of off the record that people who do overnighters want to sleep and kind of work for an hour, sleep a lot, and get $200, that’s why they do them – I am NOT that, so I have more workers refuse to come again, or quit than I say, “Don’t send”) it takes too much ‘administrative effort’ to try and book someone to take care of me overnight. So they aren’t doing it anymore. This combined with the ‘no GP’, ‘No one will administer IVIG, though approved’, is making me feel less than loved. Where are the hugs, caregiving and smiling doctors of shows and commercials? Is it a human rights case? Sure. Is that going to get me a judge in a week saying that they are required to provide caregivers for me while the case works through the system over the next couple years? NAW! But.....the Olympics are here!
When I say, ‘fever’, I mean, an inability to control temperature regulation or the effects until the blood in the brain is affected. So since my core is usually sent lots of heat, as I lose energy the external cooling becomes less effective, the energy for resistance is gone and I get a fever. If I am cooled, I will lose the fever (and then have like a 94 degree temp or go into shock). So, while it is ‘autonomic function control loss of the Central Nervous system vascular system for temperature regulation’ – ‘Fever’ is usually what happens, so lets go with that.
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4 hours ago
19 comments:
$200? A night? They should hire Linda to be your night caregiver. Two problems solved at once!
Why are you dragging yourself to the bathroom? Are you trying to walk there? Is it impossible to use your wheelchair in the apartment? Oh, I am asking too many questions that are tiresome to answer. So don't answer them. Just, be as good to yourself as you can be.
I was trying to transfer to my chair, missed, fell down, and was too weak to get back into the chair by myself - hence the one foot a minute progress.
I need caregivers because someone who caregives doesn't get full sleep, Linda has already burned out once - the night caregiving is so she can caregive the other hours of the day, since I need almost constant caregiving. Yes, it would be nice if she were paid, but even under a grant, spouses are exempt from being eligable for what they are 'supposed' to do for free. Nice of the government to mandate duties - hence the high, high rates of spouses leaving (up to 90% for males with a female who has a long time chronic illness)
Is there any way of using the gov funding for night care to directly contract someone to do the work? Like get you a team of personal assistants? I only ask because the UK system now allows you to either get care provided or get direct payments to contract someone yourself. It's complicated by you legally being "an employer" but that might be less hassle than what you already go through.
I guess if this was an option you would have looked into it by now.
In other words I am appalled and saddened that you're getting shafted on your care needs. Both you and Linda really need that input. When the agency can't recruit the right staff it somehow gets to be your fault. Grrr.
For $200 a night I would work all night (if I could work) and sleep in the day. That's some good money to be made right there. They surely pay that because it's a difficult shift because you *have to work* throught the night.
Argh. I do despair.
Shall we get you a skateboard so you can half scoot yourself to the bathroom if you miss on transfer to the chair? Perhaps not practical.
I can't imagine what effect having such a small amount of talking and doing time (before your body freaks out) is having on your mentally and emotionally. It must be hard for you to even express it here on your blog due to those very limits.
Dear Beth,
I wish the fever would go away. I've been in a fever cycle too - every day for a couple months due to Lupus & infections. But at least my body can still cool itself & the fever goes down even if it returns the next day.
Beacon is ridiculous as usual. I wish I could be there for you at night. I could at least keep an eye on you & make sure you get meds & water. I'm often up til 4 am, so could be on duty most the night. We'd need an early morning worker to relieve me.
How are you two coping with Linda being unemployed? Does she get some kind of unemployment benefits? Dennis & I are doing OK - at least not going into panic mode.
Hope you got the stickers & note
cards.
Sharon
That's a really long fever - I'll keep rooting for the fever free for three days goal!
Beacon is really falling down on the job. Wish I knew a Canadian lawyer.
I hope something improves...
*hugs*
Cute title for the post, Beth.
In a city the size of Victoria, isn't there ONE person who'd be willing to work nights and help you?
Apparently not. But I scream at the injustice.
I'm here, I'm reading, I care.
Love and zen hugs,
Neil
Wow. They bounce a client because the paperwork takes time? Who ARE these people??? I guess sending a wee email to a newspaper wouldn't do much? I know... I'm naive. I keep thinking someone will care despite reading your blog about how the entire freakin' island you live on has done its best to prove otherwise. Fuckers.
Sending cooling (but not too cooling) thoughts.
I'm currently doing some occasional overnight care, on an informal basis, just being on call at night, for my 94-year old neighbour. I can definitely vouch for the fact you can't do night care AND do a day job. I've been trying - and failing - to do just that. I've now said I can only do night care at the weekend, when I don't have to go to work the next morning. Because after two nights of being called out at 3am and 5am I was really struggling at work. After 2 nights like that I certainly wouldn't have been safe to drive...
So yes, Linda has to have her sleep, if she's going to be able to go to work and earn the next dollar.
It's absolutely appalling that you can't get night carers, though, as you obviously need the care, and Linda obviously needs the sleep. I really can't imagine how hard it must be for the both of you to cope. It is an abuse of your human rights, pure and simple.
Love & peace to you both
It may be a problem for Earl that you are still moving but personally it makes me happy. I am sad that you don’t seem to have any reserve and the fever is still there after so many weeks.
Too much time administratively?!!!! What a crock! They are a health care provider agency. That is what they do and they should bloody well be doing whatever paperwork it takes. As an employer I would tell any employee who wants to be paid $200 a night to work for 10 minutes and sleep the rest of their shift that they can seek employment elsewhere. If you are being paid to be a night care giver then it is your job to give care and be awake for as much of the shift as is needed. You should work from the assumption that it is an awake shift and if you get a nap that’s a bonus. What a messed up company.
I've run into problems with caregivers & agencies before. Sometimes, they are really sticks in the mud.
Rest as often as you need to, and go slower when you aren't.
NDY.
And, we are still here.
I was partly joking. But only partly. The fact is, when they bail on providing the care you are supposed to get, it falls on Linda to do it. They ought to have to give y'all the $200/night. Plus whatever money would be spent on benefits. With that, you could get your own carer, and Linda would at least be reimbursed for her time on nights that no one comes. It just isn't right that Beacon should be able to escape the burden of paying for a home carer when it isn't like you can escape the burden of needing it. I wonder if they generally balance their books by not providing services whenever it may be convenient for them.
We noticed this with my grandfather--that the night nurses expect to sleep. Uh, they're there so we can sleep. That is horrible for you.
It continually hurts me how Beacon and the doctors and the Canadian system treats you and other seriously ill people. It's just not right. Hang in there--I know that's easier for me to say than for you to do.
I remember well from when I was in the bin that night staff will ignore anything which might interrupt their kip (short of screaming or waving sharp things around), but you'd imagine that there must be *some people willing to do actual work for that sort of money.
& that there must be some sort of duties on agencies to provide what is needed.
Sometimes, in this country, an MP has some leverage in such situations (all sorts becomes possible when an MP gets involved). If needed, your readership could probably write secretary-annoying letters for you. (Because secretaries determine what the MP pays attention to, of course.)
It took me years of expensive training and gruelling experience to make $200 a day flying airplanes, and I was often called upon to work a twelve or fourteen hour "day" that started in the evening and went until dawn. I wasn't allowed to sleep for even a minute of that time. If someone is going to be paid $200 of MY tax money to look out for someone's safety and basic needs, they damned well better be doing that for the whole time they are there.
Care agencies, even in the US, will make up bull---t excuses to not give you care if they aren't getting something they think they should. An agency who gave me care for two months last summer refused to send anyone when I came back in December. They said it was because the people who helped me last summer were "worried about the dogs." The real reason, I think, is because Medicaid won't pay them the amount they think they deserve -- every single person who came here last summer spent a minute or so before leaving to pet the dogs they were supposedly so worried about. Most people who ar afraid of dogs aren't going to pet them.
I wish there was something I could do. I wish I could come up with an idea that would work. I wish I knew someone who would hire on with Beacon and specifically ask for you.
There's GOT to be a way . . . .
How can this be legal? I know, it probably isn't but they know you don't have the resources to fight it, but still... there has to be something that can be done. Can we write letters to someone? A local TV station?
I don't know about Canada, but in the US there's always a market for a sensationalist story about a government benefits system that is corrupt... "Dying Woman Denied Care Because Workers Expect $200 to Sleep All Night?" If it made the nightly news, maybe they'd find someone who would love to make $200 a night and WORK for it...
Ugh. It's just not fair. There should be a law that if they can't send you a caregiver, the $200 for that night must be deposited into YOUR bank account instead, to be used for your care at your discretion.
This is just wrong--damn...If I lived nearby, I'd do what I could...Anyway, still here and still also reading ZED...
Hugs!
And then if you do find someone who'll stay awake for the night shift, there's the question of what they're doing with that time. I've heard too damn many horror stories of nurses hired to provide night care, and doing pretty much everything but...
There has to be a better way! Thank you for documenting this--it needs to be recorded, and then it needs to get fixed, for you and for a whole lot of others affected by such absurdities.
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