Hospital Diaries Part 1

March 24, 2013

Our medical system is broken. My husband and life partner is trapped in it. So are the medical professionals who just want to help people. They didn’t sign up for this. I didn’t expect it.

We aren’t strangers to the medical system. My husband has an ongoing disease he has battled for 40 plus years. I joined his journey over 30 years ago.

We have arrived at hospitals via car and ambulance. Some of the trips resulted in surgeries; others helped us access treatments to manage his illness. The last one put it into remission for over 10 years. But this time it’s different.

As a caregiver you have to advocate for your loved ones. I get that. I’ve been doing it. It’s draining, but it must be done for the ones you love. This time is different because the system itself is terribly sick. I saw it for myself and hear it from those on the front lines.

Day 1: March 20, 2013

This is our second visit to emergency in just over a week. He came here on March 11th. He was admitted, treated and released a week later with several follow-up appointments to see various specialists. They didn’t make a mistake sending him home. We all thought he was o.k. But we are here again. And this time it’s different.

An ambulance ride to the hospital had my husband on a gurney in a drafty hallway for over an hour. The paramedics who brought us here are frustrated. They tell me the system is broken. But what does that mean?

They share their stories and frustrations with me, saying that it doesn’t matter who calls or why, they are obligated to bring them to the hospital. If they want a ride to the hospital because they don’t have money for cab fare we can’t question it, one tells me. If they have a hangnail we still have to take them. He points out that all Ontarians receive a bill for the ambulance ride, but not if they are on social assistance.

We pick up the same drunks three times a day sometimes, another paramedic tells me. They get a warm gurney to sleep on and a hot meal, then they’re back on the street. I see several in the hallway over the course of the next three days to confirm this.

All of these calls and waiting in hospital halls means there aren’t enough paramedics to deal with some life-threatening 911 emergencies. Response times are compromised and so are the lives of the patients who need urgent care.

My husband’s gurney slowly moves up in the queue but there are still several ahead of us, plus others who come in with as more emergent and he is bumped back in the queue. He came in with pain that couldn’t be controlled at home. The pain has been dealt with for now. He is no longer a top priority.

The first time he came here he was admitted to a bed the same night. This time it’s different. His room is covered by well-worn curtains – not a room at all. This will be where he stays for almost three days.

Nurses who are trained to deal with front-line trauma are tending to patients who should be admitted to a bed upstairs, but there are no beds available. We are told by one doctor that the Gastro Intestinal (GI) service (my husband’s medical team) is only allotted a certain number of patient beds and they have already used up their quota, and then some. No one knows when, or if, my husband will get a bed.

A nurse confides that they just released a woman who had been in emergency for over five days. I ask what happened. She tells me she thinks the patient was treated enough to go home. Nurses in emergency aren’t told details of care. They are not really assigned to specific patients to give care. They deal with each emergency as it arrives and keep tabs on patients who are stable.

My husband is on steroids in an attempt to lessen his pain and other symptoms, though they are not working and he has other complications that make it difficult for doctors to treat his pain until the mystery of complications can be unraveled. He is in a tenuous position where treating him further may do more harm than good, and test results are inconclusive, so the doctors are trying to buy some time. He has spent two nights in the curtained area.

Day 2 & 3: March 21-22, 2013
The first 24 hours they administer pain medications by syringe and he remains in a drug-induced state. I confer with the doctor and we agree that he needs to ask for the pain killers so they can monitor how quickly the pain comes on and the intensity (what brought us here) before giving him painkillers. I know that they will say he’s fine to release unless they see what I see firsthand.

I stay late each night and call him in the morning to let him know I’m coming up. After the second night he tells me, I didn’t get any sleep. It’s too noisy. I need to come home. He is agitated, partly because of the drugs and the noise and lack of sleep.

I rush to the hospital and speak to his emerg nurse, who I’ve never met before. She agrees with me; he should be upstairs, but she has no power to do anything. She says she will page the doctor who has been assigned to my husband’s case; the same one who treated him last week. The doctor and his team arrive. They agree my husband needs to be admitted. They make the request, but they too have no authority when it comes to who gets a bed, and who doesn’t.

After their visit I talk to the nurse, as she looks at the computer screen next to her. It just popped up, she says. He will have a room, but I don’t know when.

That evening I decide to go to the cafeteria and find something halfway decent that I can share with my husband. We both need to eat. While I’m there he sends me a text message with his room number. I rush to emergency and his cubicle is being cleaned. I rush up to his room and find him changing in the washroom. He collapses on a real bed, lays back and says he could stay there no problem. It’s music to my ears. The nurse comes in to get his history and leaves for a moment. Then it happens. The thing that brought us here rears its horrible head tenfold.

He suddenly becomes pale and starts shaking. I ask him what level his pain is (we go with 1 – not much, to 10 – intense) he starts with a five, then six, then eight and retches. There is nothing to catch his vomit. I rush to another patient’s bed and grab a small container. It fills up in less than a second. I rush to empty it and barely make it back in time. I hand it to him and lean on the nurse call button. A voice answers and I yell for them to come quickly. They arrive immediately, but I have already dumped the small container three times.

Someone hands me a huge bowl, wet cloths then he’s injected with a pain killer. He still retches but there’s nothing left. His pyjamas and bed are drenched. We change him and he lies back in a drug-induced state. He’s o.k., for now, I think…

20 comments
  1. Suzanne, you write so eloquently. I can hear and feel your frustration and Bob’s pain. I hear the frustration of the paramedics, nurses, and doctors. The system is broken,and there is no quick fix. I hope that by writing this, it has given you some peace.

    • It helps but it’s not making him or the system better. Things are getting far worse every day. We are hoping that he and the system turn a corner in the right direction soon.

  2. Suzanne, I am so sorry that you and Bob are having to deal with this. I’m glad that Bob at least now has a room. Hopefully, they will be able to help and stabilize him. And hopefully you can now get a bit of rest. Bob needs you to be strong for him. Sending you love and strength, Doreen.

  3. Thanks Doreen. He has a room but there is more to the story before he actually gets the room he’s in. It involves me calling on family members to help advocate for us. I will post again when I have time.

  4. So sad to hear that this happens in a country like Canada; a developed country. Sending positive energies your way for Bob’s good health and strength for both of you. Take care of yourself too.

  5. Hi Suzanne. You have so eloquently told your story and Bob’s and it is a horrible one for you two and for the care givers who want to do the right thing.

    Unfortunately, it is not unique to Ontario or to your situation. It is true across this country from coast to coast. If we want a medical system that will work for those who are ill and those who want to care for them, we need to take a long hard look at it, rip it apart, and re-build it properly as opposed to applying bandaids here and there.

    The ambulance story you told happens here as well; people using it as a glorified taxi service to avoid having to pay for a ride to “the outdoor” and in the hopes of skipping to the head of the line over those parked in the waiting rooms. It is just wrong.

    You and your family are in my thoughts and I wish you well in your journey through ‘the system’ and hopefully home again soon.

  6. Hugs Suzanne,
    I could rant for ages at how the medical system is broken (that’s partially why I have the thick rough draft of the memoir). I am so sorry that you have to go through this, and I do hope that by sharing your experiences, that you will be a part of the movement for positive change.

  7. Sorry to hear about what you and Bob are dealing with. The system is indeed broken and all you can do is continue to advocate to the best of your ability in the meantime. Hope Bob is getting a better sleep and treatment now that he’s finally in a room. Thinking about you.

  8. Thank you for sharing your story, Suzanne. It is certainly an eye-opener, and of course my thoughts and prayers are with you and your husband. The question is what to do? If there is something I can do for you, I would love to help you. I’ll stay in touch.

  9. My heart and mind are with the pair of you, Suzanne. I am currently in the system here in Saskatchewan and we don’t fair much than you do in Ontario. I’m not sure anyone has the answer as to how to fix the system. I do know that provinces are charged with taking care of the health system on their own. The federal government is not a part of the equation (very generally speaking). Sigh… I still think that we are better off than our neighbours, though.

  10. So sorry to hear about the constant struggle you and your husband have been facing, Suzanne. Unfortunately, too many of us have experienced a similar rude awakening. Whenever I hear people rave about Canada’s health care system, I surmise that they’ve never gone through the horror of having a family member admitted to hospital during an emergency situation. My husband has Crohn’s Disease and we’ve witnessed a multitude of failures over the past 6 years. On one occasion in the ER after hours of waiting, it was up to me to change his saturated operation dressings. The nurse literally gave me the supplies and left me to it because she was too busy. I quit my job to stay by his side day in, day out. He had two operations, and spent two consecutive summers in the hospital; after my first impressions, there was no way that I’d leave him to survive on his own in there. I think that it’s great that you’re doing everything that you can to ensure that your husband is getting the care that he needs. From my personal experiences, it pains me to say that yes, it is up to us to advocate for our loved ones. Our country’s dream medical care system is broken, and in desperate need of fixing.

    • Jackie, Crohn’s is what we are dealing with now too. It has been in remission for over a decade. We were told by his specialist that it had “burned out.” When I tell the doctors and nurses this they look at me like I have three heads then say it never goes away. That was the first shock for us. I can’t believe that you had to change his dressing yourself in the hospital! We need to come together to try and fix this broken system and help our loved ones who access it, and those who work in it, so they can tend to our loved ones. It’s so complicated and scary and unbelievably sad. Thank you for sharing your story.

  11. This is so frightening. The system is top heavy with health care administrators who make huge salaries but have no idea what is going on at the front lines. It seems only the numbers matter to them and the theories they cherish rather than the reality. Health care has lost it’s way and some how the idealism has morphed into a freebie for all who need a lift, a place to stay or someone to just look at them. I don’t know the answer to solving all this, but it is heart breaking to read your words.

    • I see that you get what I’m talking about Debi. I am thinking positive thoughts. they will sort this out. That he will come back home. That things will go back to normal, whatever that might be. But how does that help the person who’s sitting in emerg right now going through what we did? I am scared they will release him and we end up back at the beginning of this vicious circle. I feel like I’m fighting on his behalf – both the disease/illness, and to help his caregivers help him get better. I am strong, but worn down. How would someone who wasn’t strong or didn’t know what questions to ask be able to do this/ And the biggest question – how do we get the system changed to help the caregivers giving them power to help the sick who are put into their care?

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