life as a caregiver

Lying Right and Left


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The reality show known as the GOP debates produced a lovely but somewhat disingenuous meme the other night. Moderator Wolf Blitzer (who has to be hoping that someday he can escape back to some semblance of his cooler “scud stud” days before he dies a tool of the main stream media) asked candidate Ron Paul one of those delightful beside the point questions that involve hypothetical scenarios from an alternate United States timeline,

Headline meme’s on Facebook and Twitter embellished the lone gunman’s “yes” response to Blitzer’s “should society let him die” to GOP Audiences Cheer as Ron Paul Proclaims that the Uninsured Should be Left to Die. Which is not what the man said at all, and to be more fair, the audience cheered him on his rather wishy-washy “personal responsibility” point and not about letting a man in a coma die because he didn’t have health insurance.

Personal responsibility is a red herring catch-all phrase in the United States that allows people to safely distance themselves from the reality that many people are responsible and are still caught by rock and hard place scenarios from which only a government  safety net can save them. It’s a word we use when we don’t want to acknowledge that we are really heartless fucks who don’t care about anyone outside our personal circles.

Regardless, the meme spoke and it came down on the side of slightly twisting the event to make Ron Paul, the Tea Party and the GOP in general fit the storyline, which is that people on the right are cold, soulless bastards who want to make over the American government in their heartless, bible thumping, Ayn Rand loving images.

The reality, which is that Blitzer’s what if missed by a country mile, is that most uninsured Americans can’t afford health insurance and that Ron Paul lives in a fantasy world where churches and other charities still take care of these people. This, however, wouldn’t have made as compelling of a soundbite. It certainly wouldn’t have fit in a Tweet.

In keeping with their newfound zeal to fight half-truth and blatant lies with more of the same, the energized Left pounced all over The 700 Club’s Pat Robertson yesterday with a similar eye for clever editing and disingenuous headlines.

Robertson does this quaint Q&A during his broadcast. Viewers send in questions, and he plums the depths of his holy man status to advise them.

The Crooks and Liars (and they couldn’t have named themselves better if they tried) website quickly and crudely edited this gem*, which sped about the social media like new gossip in a high school lunchroom.

Pat Robertson Says Divorce Terminally Ill Wife went wild to the point that the mainstream was forced to pick it up and repeat the nonsense.

Nonsense because that’s not really what Robertson said. In a rare compassionate take on his own brand of Christianity, he admitted that wanting to move on from a marriage that has been effectively ended by one spouse’s dementia is an ethically difficult one, but that he would not judge someone who did. In his opinion, a man who wanted to do so should make sure his wife is well-cared for and divorce her though he admitted that perhaps an ethicist  would be the better person to ask.

I have little patience with hypotheticals that aren’t really. People die from lack of health insurance all the time. Spouses are effectively widowed by dementia all the time. Let’s not play with this scenarios as though they aren’t thorny and real. Just because you may have avoided some tragedy or other doesn’t make it just another thought exercise.

Anymore I can’t distinguish between Left, Progressive, Right, Moderate, Conservative, Liberal. It’s all shrill. Or half-lie to “make a point”. Or making light of the very real lives of very real people to make a point like the Robertson meme in particular. It’s mostly bullshit that distracts from the work that needs to be done to solve the actual problems that are crushing the democracy right out of the country.

A Facebook/Twitter friend, who suffers from a life-threatening illness, took understandable exception to the overlaid implication that abandoning sick/terminally ill spouses is okay. She comes at the meme from the opposite side of the equation from myself. In some ways, the sick person has the upper hand because they are, rightly, awarded the lion’s share of the sympathy, but speaking as the former spouse of a man who had dementia, there are two sides to every story regardless of how tragic it is.

She was appalled by Robertson’s stance that dementia leaves essentially a “walking dead person” in its wake, but that’s exactly what it does. And just because it makes you uncomfortable to “go there” doesn’t make it less a fact.

First they become a complete stranger, Then they devolve into a stranger who doesn’t know you. Finally, they become a breathing corpse. A simplified version. There is more, and most of it is sad, lonely and soul-crushing, so I will spare you the finer points.But “walking dead” is a good, if stark, analogy.

Like Robertson, I don’t fault anyone who wants to cut and run. I’d have run a hundred times if I’d had the opportunity. I am not a better person because I didn’t.

Loyal spouses are patted on the head for their exemplary capacity for self-sacrifice just as the terminally ill who fight tooth and nail, even when they and their families would be better off if they didn’t, are given posthumous gold stars for “courage”. It’s textbook. It’s Hollywood. And it’s beside the fucking point.

Sometimes I understand perfectly why Obama always looks like a middle school teacher just after his worst class of the day. Are there any grown-ups left in the room down south anymore?

 

*You can see the clip in its entirety here.

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Tales from a Canadian ER


They call it “emerge” here. It’s Canada-speak for “emergency room”, and it confuses me in the same way that “ah” sounds are “aaaa”. Paaaasta versus pahsta. Just off enough to make me pause for a moment so my brain can catch up to my ears.

But whatever. When medical situations arise, Canadians go to the “Emerge”. And so went Rob and I on Friday just shortly before noon because he’d slept late and woke feeling light-headed and slightly heart-attacky again.

“I hope we don’t have to wait long,” he said as we walked in the front entrance of the Fort Saskatchewan Health Centre. Not hospital. It’s not big enough to warrant the title and that’s not my opinion only but the provincial health system’s too.

“Just mention the chest pains and follow it up with the fact that you had a heart attack three weeks ago,” I suggested. “I’m pretty sure that will warrant queue jumping.”

If there is one thing that Canadians pride themselves on it’s queuing up for health care. No one jumps the line. No. One.

Incoming patients are evaluated and served according to the seriousness of their condition but for the most part, everybody waits.

And waits.

I have yet to go to the doctor for any reason and not sit for at least two hours before actually being seen.

And absolutely everyone gets the same slightly understated care.

“Hi,” Rob greeted the admissions clerk, a big haired woman with that “another one” look on her face that they all have.

“Alberta health card please,” she asks even before inquiring what brings Rob to the centre that day because not having that card means that the next question is “and how will you be paying today? Cash or credit?”.

“I was here three weeks ago and had an angioplasty,” Rob tells her when she finally asks the nature of his visit.

Rob still has trouble with voicing the heart attack thing.

“And you’re here today…?” Because “angioplasty” doesn’t clue her.

“I’ve had chest pains …”

To her credit, he doesn’t get any farther. She directs him to the ER intake and asks me to come back for his paperwork.

Chest pains opens doors and makes hospital folk look attentive and even behave in a way that makes one feel as though perhaps their attention has been adequately captured.

That’s just an fyi.

We walked through the packed waiting room. I noted with interest the young punk-ish woman sitting between two RCMP officers manically chatting away for the alarming edification of all. A mother gathering her brood ever closer as the girl babbled.

“I told the operator that they could come get me and bring me to the emerge or send someone for my corpse.”

More on her later.

To gain admittance to the emerge wing, you go through triage which is manned by an EMT trainee – always – no exception that I have ever seen. You don’t see a nurse or a doctor until the trainee has practiced on you.

Rob assumes the position in one of two chairs they’ve set up for patient triage and the young man glances about with a slightly vacant but confused enough to convince me he is tracking mentally look on his face.

“Do you have paperwork?”

Protocol, people, it’s all about the proper paperwork.

“He’s having chest pains,” I explain, “the woman at admitting told me to bring him here and then come back for his paperwork.”

Big eyes. Falters slightly and then he begins intake while I head back for Rob’s passport to health.

At the desk the clerk has finished admitting Rob. She and her co-worker express horror at the fact that Rob is just 48. I am calm. That’s how it goes. Your spouse suffers from something that most people cringe away from and you are calm. Like there is another option, but people, by and large, find it hard to wrap their minds around. Been here before but forgot to get the t-shirt.

Meanwhile, the wild-eyed looking punk girl in the lobby is regaling the officers with her manic tales of suicidal intentions. As I listen, I gather that mental health services here are no better than in the States. The girl had been trying to get help for some time but units are full and the only way in is to suicide or state an intention to do so. She’d called the police, threatened to kill herself and they sent officers around to pick her up and get her admitted. She reminded me a bit of my brother when he is in one of his demonic up periods. I didn’t blame the others in the waiting area for seeking seats far away from her.

It took less than ten minutes to get Rob checked in and into a room. Chest pains rate a room as opposed to sitting in chairs that line the hallway. Which turned out to be good because an hour or so later, they brought a young man in on a stretcher and left him in the hallway – just across from the chairs – and he spent a good 30 minutes violently retching into a basin. Followed by another 15 or 20 minutes hacking up phlegm. I never did discover what happened to him though I knew that when Rob hit the 5 hour mark, the young man was still there. He’d been put in one of the cubicles and was no longer vomiting but they wouldn’t give him so much as a glass of water to rinse his mouth out because they were still waiting on test results. Canadian health care is big on assuming that anything could lead to surgery and therefore, no food or liquids.

Because of his history – Rob has a “history” now and it’s still something we are adjusting to – they followed the standard protocol.

Protocol demands two sets of bloodwork six hours apart and ecgs periodically over the span. In all, with the heart in play, expect to spend a minimum of 8 hours and as long as 12 being “observed”. And be advised that you could be in “emerge” for the duration.

There is nothing to do but wait.

We read and I occasionally broke the monotony by eavesdropping on the EMT as he admitted people.

One guy was quite interesting because it revealed something about the system here that in all ways but one is exactly the same as the plight of the un or underinsured in the U.S.*

He’d broken his arm.

A year ago.

He was in the Fort visiting his in-laws and his mother-in-law made him come to emerge because the arm was bothering him to the point where he couldn’t lift anything.

The nurse, and I, listened to his story and I suspect this is the norm for working poor.

He lived several hours away from the nearest health centre/hospital. He waited until the next day to go in because of the distance and he couldn’t miss a day of work. The x-rays revealed two hair-line fractures and he needed a cast but they wanted him to come back the next day for it. He couldn’t. A trip to the hospital cost him a whole day.

“It would’ve been seven hours,” he told the nurse. “I don’t have that kind of time to waste and the bus service ain’t that good. I wouldn’t have been able to get back until the day after.”

But as he was on vacation and in Alberta, health care works the same in Fort Saskatchewan as it does in Calgary, he let himself be talked into coming.

“i just need you to put a cast on it.”

Of course after a year it wasn’t that simple and the nurse finally gave up trying to explain it. She sent him to x-ray. Let the doctor deal with him – when he got the chance.

There was just one doctor on call. There is only one. There are five rooms and at least ten chairs plus a waiting room full of chairs. So in theory, the doctor can be responsible for over a dozen patients in varying stages of diagnosis and severity over the course of a shift.

The doctor this time – at least – discussed the situation with us and I actually got to listen in.

In the end, it wasn’t another heart attack. It turns out that the Lipitor is a hard drug and it could be that Rob won’t be able to tolerate the muscle pain it causes. Some people can’t. Some people are even debilitated by Lipitor as it breaks down muscle tissue in addition to scouring the veins of cholesterol. Lipitor actually triggered ALS in my cousin’s father within months of his starting it. He died a horrible death.

So it’s the Lipitor. The heart is okay. I am a tiny bit less worried about Rob dying on me anytime soon, but the ghost snuggled up to me in bed last night. Really. So things are apparently dicier than they appear.

*Universal health care sounds nice. You don’t have to worry about not being able to pay for the doctor visit or the trip to the hospital. But … isn’t there always? Drugs are covered. The time off work isn’t covered. And in a country where there are few big cities, many people live hours away from care. Getting to and from is arduous to impossible and that’s if they can afford to take time away from work or children. For the poor and working poor, the obstacles to care will always be. Just having access to care isn’t the end of the problem.

The Haunting in Josephburg


How does one politely tell the spirits to bugger off?

They mean well. I know this. Our dead family only has our best interests at the center of their wispy insubstantial hearts, but my personal preference is to live in psychically deaf ignorance of any coming catastrophes or even minor bumps. And I am not talking “bumps” in the night.

Or the early morning light.

I haven’t been able to get a full night’s uninterrupted sleep since Rob’s heart attack. Some of it, I will concede, is the reactivation of my caregiver’s spidey sense, but the physical presence(s) in our room are not helping.

For some reason, I am able to tune in to the frequency of the departed with nerve jangling clarity in the early morning hours. I wake nearly every night to the powerful sense of someone standing by the windows.

Thursday morning I was awakened by footsteps that started at the door and ended at the foot of the bed. I started because they were loud and opened my eyes to spy a human shape heading towards Rob’s side of the bed.

Sunrise filtered illuminated the shape and I assumed it was Rob. He is often up to use the bathroom on the main floor. I heard him ask,

“What’s wrong?”

“I heard footsteps,” I told him and thinking now that they were his, I went back to sleep.

Only it wasn’t Rob.

Later as I thought about it more – while sitting in the ER as the doctor tried to determine if Rob had suffered another heart attack – I realized that the figure was clad in light coloured clothing. Rob’s robe is dark and even when he shuns it – which he isn’t at the moment with my mother visiting – he is dark.

The chest pains turned out to be a reaction to the Lipitor, which is another kettle of fish for another day, but as I headed into town to spring Rob from the Fort Hospital – also a tale for a day soon – Metallica came on the radio.

Metallica is hardly in popular radio rotation anymore. When the rare song turns up, it usually comes at “interesting” moments in my life. As they were my late husband’s favorite band, I have to wonder at the timing.

“These are definitely messages for you, ” Rob remarked when I told him about it later.

Perhaps I should pay more attention than he did.