The Patient’s Wife

There are studies showing the effect of care-giving on spouses, and they aren’tpretty. But they miss the heart of why it sucks to be the spouse of someone who’s dealing with a severe illness, no one is interested one whit in how they feel or how they are doing.

While healthcare professionals of questionable intellect, and dubious interest, carted Rob thither and yon today as though he were just another carcass, I rated nowhere near as important as meat on a rolling slab.

Never did I even see a doctor. The only nurses I encountered either ignored me or made it clear that I was wasting their time, though I can honestly say I didn’t see a single nurse above LPN status doing anything other than visiting with other staff members.

Granted, I was not ill. Rob was ill and seriously so with blockage that required a stent to correct. But I count. Regardless of my healthy status, I am deeply affected by anything that threatens my husband’s life and having had one die on me already, I have no illusions about it being impossible a second time.

Dr. Fortune Cookie had come and gone by the time Dee and I reached The Fort Hospital, a place I hope to never have to utilize again because there are one, maybe two tops, nurses on staff who seem to have any idea whatsoever of what is going on.

Exaggerate? Not I.

The nurse who helped load Rob up for his trip to the Royal Alexandria Hospital in Edmonton didn’t know that Dr. Fortune Cookie hadn’t shared any of Rob’s test results with Rob or me and that I had never even spoken to the doctor. She was slightly (emphasis on slight) surprised to find that neither Rob nor I had any idea of what test he was going to have once he got there or that we would even want to know that.

Earlier I’d asked Rob if it was typical of Alberta doctors to not bother to discuss things like what’s wrong with you or treatment options with patients and their families.

“It’s the nanny state in action,” he said. “We simply surrender to the void.”

Void is a good word for it.

Dee was a weepy mess by the time the EMT’s had loaded Rob onto the ambulance. As she and I stood there at the back of the ambulance bay waving goodbye, one of them jumped out and gave her a teddy bear – she was that distraught and I could tell it was making the EMT’s uncomfortable.

To their further credit, the EMT in charge attempted to explain Rob’s labs to me and update me on the angiogram he would be having.

EMT’s are apparently not required to take the same “patient’s and their families are incidental to the great health care process” course that RN’s and Doctors receive in the Great White Socialized Medicine North.

And I am not knocking the idea of universal heath care in general. Rob and I will never see a bill regarding his heart attack, treatment or follow-up care, but the system only sorta works. And the people who make it run on a nuts and bolts level are as big a part of the problem as the politicians who continually under-fund and slash health care budgets.

Half way to the hospital, my cell rang – and yes, I answered it because my husband who just had a heart attack was having an angiogram and god only knew what else because I sure hadn’t been briefed.

It was the nurse at the cardio-cath lab. Rob had asked her to call and give me an update. She told me that he was just going in and that the procedure would take 45 minutes to an hour and that we could see him after at the Digital Imaging Recovery Unit. She even gave me directions.

She would turn out to be the ONLY one who told me anything.

Dee and I found Edie and Mick in the waiting area. We dutifully waited for close to an hour before I questioned the receptionist – who unsurprisingly didn’t know squat. Couldn’t even find Rob’s name on the list of scheduled procedures and just waved me toward the recovery unit with instructions to “ask someone there”.

Just a note about the reception desk at  the Royal Alec imaging wing – it says “someone will be with you shortly”. Dee, Edie, Mick and I came in and sat for nearly an hour – were they only ones there – and the dimwitted receptionist never once asked if she could help us or who we were waiting on. Perhaps it is not her job, but it is the only waiting area for non-patients in that area.

Not only that, the doctors who treated Rob didn’t come out after the angio to let us know that it was over and that all was well.

I was told by the two nurses behind the desk in recovery that Rob was on his way to admittance.

“He’s being admitted?” I asked. I’d been told he would go back to the Fort Saskatchewan hospital – even if they ended up treating him. “Why?”

No reason was given and they dismissed me with instructions to meet up with my husband in admitting.

Needless to say, he wasn’t there. But a kindly young registrar made a couple of phone calls and at least tracked down his unit and room number for us.

Of course when we got to Unit 24 – the cardiac wing – he wasn’t there either.

And the nurses chattering happily away to each other behind the desk were in no mood to make a quick phone call to see where he was or if he’d come through the angio okay or if he was being admitted because something further was amiss or had gone wrong or he was going to need surgery.

Do I sound frantic? Ready to drop-kick lazy nurse ass all over Unit 24? Because I was.

“Go down and wait by the elevator,” the nurse waved me off like Queen Elizabeth shooing the help away. “He has to come that way sooner or later.”

And so I paced and was furious – mostly because I was worried.

I still didn’t know what had caused Rob’s heart attack, the extent of the damage, what the treatment would be, how long he’d be in hospital. Nothing.

36 plus hours after he landed in the emergency room at Fort Saskatchewan Hospital and going on four hours into his disappearance into the bowels of the Royal Alec in Edmonton and I knew exactly nothing. Had spoken with not a single doctor and been treated like a nuisance by all but one nurse – and she was the first one back in the Fort ER on Thursday morning, an exceedingly kind woman who answered questions and treated us like people.

The girls offered to go on the hunt for their father. It beat waiting and watching me pace in a futile attempt to quell the rising tide of fury and fret.

They’d been gone about ten minutes when Rob arrived.

He looked better than he’s looked in weeks – all summer really – and I was in such a tizzy all I could do was hiss at the women pushing his bed.

Where had Rob been? What happened? And didn’t anyone think I needed to know any of this?!

I wanted information. I cannot deal with being marginalized and treated as though what ails Rob has zero effect on me. The bed-pushers patted my head – which did nothing to improve my mood – and move on into the now off-limits ward.

Rob had no idea I hadn’t seen a doctor after his procedure by the way. He planned to call my cell if I wasn’t on the unit, forgetting, of course, that I had taken his phone before they hauled him into the city. He was actually expecting to see us there and was confused by the fact that I was upset.

The unit had closed for its two-hour “silent time” when I noticed that every patient who was ambulatory or allowed a wheelchair fled to havens unknown.

The girls arrived and as they were planning to head to the family reunion if the news was positive, they needed to see Rob pronto. It’s a long drive north and they were already under the gun to arrive before the sun set.

I sent them in despite the “closed” sign.

“Just look menacing,” I said. “No one will shoo you off then.”

I was past menacing, in case you missed that. I radiated displeasure and staff that went in and out, ducked their heads and scuttled around my pacing dervish self.

At that point, I wouldn’t have spoken to anyone had someone bothered to approach me with information. In fact, when Dee and I finally saw Rob – almost two hours after our brief reunion in the hall – I ignored the nursing staff entirely. I’d taken the information that Rob had given me and called my BFF in the states. She is a home health care nurse, and she filled the details in for me.

Dee and I visited only a little while with Rob. He was tired. Hungry too because Dr. Fortune Cookie had needlessly starved him with a clear liquids diet back in the Fort – it wasn’t necessary for his procedures. And Dee and I were worn to a nub with waiting.

They put Rob in one of those horrid little quad wards that I noticed on a previous visit to the Royal Alec. I think it’s an English thing. They remind me of the psych ward Will ended up on before the doctors finally admitted that I was right and they were wrong and stopped treating my late husband’s illness as mental.

Which brings up the bigger point. Although my Canadian experience was worse, in some respects it runs par with what I encountered in the early days of Will’s illness back in the states. I was ignored and made to feel as though my stake in what was going on was negligible. My spouse’s illness was none of my business because it didn’t affect me.

And to that I say  – “like hell”.

“If I ever get sick,” I told Rob, “do not ever bring me to this place.”

“Stop, ” he admonished. “That’s not being very yoga.”

“No,” I said, “it’s not at all and I don’t care.”

“All that ground lost,” and I could see he was trying to get me to smile – and after a while I did – but I still will never willingly be a patient at the Royal Alec.

The least scungy looking areas in the Royal Alec are the main atrium and the food court.  Everywhere else: the wards with their double and quadruple occupancy rooms, the nurses stations, the Digital Imaging Recovery Room  – every washroom I was forced to use – ooze age in a weary day labourer pushing past middle age kind of way.

A person could be coerced to look beyond appearance if  the personnel exuded dedication and love of what they do, but generally, they came off as utterly uninterested in patients beyond what they needed to do in order to get paid, and they reacted to families like they were bad smells.

Ask a question?  At best you’ll draw a blank stare and at worst a suggestion that perhaps you go bother someone else. Somewhere you will have to hunt for and walk such a distance away from the first person you queried that you won’t  have the energy to double back to the unhelpful sot who knowingly sent you on a snipe hunt.

And back to the doctors. I am still not convinced they do anything other than phone in and it’s even possible they are urban myths.

The most important thing in the end is that Rob is going to be okay, and that he won’t be trapped in that disappointing, underwhelming medical experience for too long.

13 responses to “The Patient’s Wife

  1. Haven’t read all the comments, but in general, I haven’t found health care to be a profession that cares much about customer service. I don’t think it matters that I’m in America, or you’re in Canada. People, unfortunately, seem to be the same across the world in this regard.

  2. I occasionally drop by here via the link from “Dan, in real time.” Very sorry to hear of Rob’s heart attack and the stress that you’re under, Annie. I’m a little surprised that the hospital care and doctors aren’t better out where you are, but maybe it’s a case of finding doctors willing to work in certain cities. I live in Ontario and any time there has been a health crisis in our family, and while my husband was being treated for terminal cancer, we had terrific doctors and nurses and top notch care while in the hospital and also with the nurses who came to our home. If anything, I’d say that things are constantly improving. Throughout the hospital where my husband received treatment, there were large posters saying that patients and family have rights and that, in Ontario, if you have any problems, just to call a certain number to report it. One thing that I think may have been a help in our hospital is that patients and families are encouraged to fill out a nomination form if you think a nurse or doctor has done an outstanding job of caring for you. I don’t know how this works, but if there are enough kudos, the hospital gives out a special pin to those individuals – something like “Medical angels” awards. I noticed that many of the staff wear their pins all of the time – and from our experience, all deserved them. So much of the time, I wonder if certain hospitals are just run by very poor administrators. At the hospitals in our city, I know that quite a few in the administration are ICU nurses, etc.. who have taken those positions after many years in the OR and on the wards. Anyhow, I hope Rob is on the mend and that you don’t have to make use of the crappy hospital system there for much longer!

    • That’s interesting about Ontario.

      I have no doubt that some of the problems here have to do with Alberta not being desirable. It’s a huge, spread out place that it takes hours and hours to drive from here to there. Even though Edmonton is a “big” city, it’s not what a person would call cosmopolitan.

      Rob tells me that much of the problem now goes back to 1993 when the Klein govt slashed the healthcare budget on the backs of RN’s and that LPN’s are still favored over them b/c they are cheaper. if you ask older folk, they will point to it too. That, however, was nearly twenty years ago and nursing (no pun, though it’s a good one, eh?) the grudge is just hurting patients.

      I don’t think things will change. The DR’s have a strangle hold that prevents all sorts of money and time saving things from being implemented. I lived in Iowa back in the states. Hardly a cutting edge place, but whenever I am forced to go to a doctor or hospital here I feel like I am stepping back in time to my childhood – that’s how antiquated things are here.

      I tell Rob all the time that sometimes I wonder if anyone here really understands how backward things and inefficient things are. In Iowa, my primary care “doctor” was a nurse practioner. I could avoid the ER seven days a week b/c of the clinics that were open. You could make appointments and see a doctor within 30 to 45 minutes of arrival. I didn’t have to make an office visit for a prescription refill for maintenance drugs – I just called and they faxed the script to my pharmacy, whose numbers was part of my computer file record. A lot of times, I didn’t have to call at all – the pharmacy took care of it. Hospitals were sparkly and nurses were always asking if you had questions, could they help, was everything okay?

      I’ll tell you what the Royal Alex really reminds me of – a nursing home. My late husband spent a year in a nursing home and though physically it was not quite as run down as the Royal Alex, the few RN’s and nearly all the CNA’s that worked there had the same “Don’t bother me; I have real work to do; Can’t you just take care of it yourself?” attitude. And the doctors on call didn’t listen and were never available.

      I don’t understand why people put up with they way medical professionals treat them here. I personally avoid Doctors and hospitals like plague. Rob’s company occasionally threatens us with a transfer to Texas and though I can’t imagine a more frustrating place to live in terms of attitudes and culture – it would be nice to have access to better quality health care.

  3. It sounds pretty awful- moreso than I would have expected, but still unsurprising. I can imagine your coiled and lashing fury at being marginalized.

    If veterinary clinics/ hospitals ran like that, we would be out of business so fast… Although I am not a fan of private healthcare, I absolutely loathe the lack of accountability that comes with pubiicly funded care.

    Glad to hear that Rob is home and healing. Hope you and Dee recover in due course, too.

    Hugs- regardless of whether you want them…

    • It’s the lack of interest in patients as people and I know that people here will blame the government because they dole out the funds, but you go into healthcare here knowing it’s going to be a grind. The long hours and budget cuts are not a secret. If it’s going to be too hard for you to deal with patients on a personal level or put yourself out when people are confused/frightened and in situations where they are not going to be their best – then go work on the rigs or start a business where you can call the shots.

      If I had treated parents and students like we are treated, I wouldn’t have been in the classroom too long.

  4. I am glad Rob is well now or on the road to full recovery. What a scary experience for you all.

    While I had my own visit to the ER which had its highs and lows (http://konniehill.blogspot.com/2009/12/healthcare-investigation.html), I will say that my experience with Canadian healthcare has not been “high handed dismissal” and I do not consider myself “surrendering to the void” .

    While I do think you should have been briefed, I think the way healthcare dollars are stretched, the system does not necessarily allow the up to the minute updates. When patients are in transition (between diagnostic imaging and ward), it can very much be a waiting game. I would assign much less blame on the health care providers are much more on under-funding. My experiences w/ nurses has been much more empathy, but they are generall not the ones charges w/ revealing test results etc.

    And I am glad you did not have to take out a second (or fifth) mortgage to pay for the care.

    • I get the feeling a lot of times that doctors “work to the contract” b/c they are miffed by the money-making limitations on the system and that the rank and file (nurse/technicians/etc) believe that if the average patient gets fed up with their lack of enthusiasm and disgruntled attitudes over funding and staffing issues that people will “rise up” and demand more.

      The problem is that most that the majority of people will only use the doctor for very minor issues and sporadically, so all that matters to them is that it’s free. It’s the folks who end up “in the system” with serious issues who are at risk.

      The BC health system must be better than ours. I have yet to find a DR whose English is good enough that we can both understand each other or even a DR who has an actual practice, rather than the hit and miss of the Medicentre’s. And a lot of the doctors we get here are male and from religious/cultural backgrounds that predispose them to having little regard for women who ask questions.

      And I am used to having way more input and freedom to guide my own health than the system here cares to allow – but I blame the physicians for that for the reason I stated above.

  5. Ugh, the doctors sound awful. Their skill at medicine had better make up for their attitude! Hope Rob is feeling better and recovering at home soon.

    • Even the DR who performed Rob’s procedure (and I am being generous b/c what he really did was oversee some intern as he did it) never bothered to follow-up. Some random cardiologist read at Rob from a chart in a hard to follow approximation of English.

      He is home and resting and doing quite well.

  6. this is an astonishing tale – 1960’s ‘doctor knows best’ medicine. in the hospital where mom has cardiac treatment, they give us pagers in the waiting room, and tell us when to expect to see the doc. i used to stalk the docs when my dad was in the hospital – sleeping in his room to catch them on the 6am morning rounds if i really needed info – but in general, we could get answers….

    i’m glad that Rob is going to get this behind him, and that the ‘roto-rooter’ procedure has already started him on the way to recovery. with any luck, tomorrow will be a better day for you as well… it’ll be far better when you’re back at home, and less at the mercy of the medical machine…

    • Everyone has tales of the Royal Alec. Horror stories usually that make mine pale, but according to Rob, this type of high-handed dismissal is typical of Canadian doctors in particular and medicine in general.

  7. Wishing Rob a speedy recovery, and for you a good night’s sleep. I think it’s almost harder to be the one not sick because you don’t know how it feels or what you might do to help.

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