Hospital Diaries Part 2

Day 3 cont’d.: March 22, 2013
I am tired and lying in bed, but feeling hopeful now that my husband has been admitted to hospital and has a real bed (not on an emerg gurney) and nurses to document his pain and look after him. I hear the familiar beep alerting me to a text message. It’s probably just one of many people who’ve been texting me to find out how we’re doing, I think, but then again, it could be my husband, and it is. He says he’s been moved to another room. I text back, Good night. Get a restful sleep. I turn out the lights and fall to sleep, physically and mentally exhausted.

Day 4: March 23, 2013
I bolt out of bed at 7:00 a.m. I instinctively know I have to call my husband. I dial and he picks up. He’s agitated. I can almost hear him pacing the floor. I almost took a taxi home after they woke me up and moved me here, he says. I ask about the room and my even-tempered husband rants: There’s no running water! There’s no bathroom! He says he was told he can’t use any nearby patient rooms because of infection transmission to or from him.

This is a huge problem. Someone with his severe GI issues, who sometimes gets less than a moment’s notice from his body to find the washroom, must get out of bed and, moving slowly, due to fatigue and pain, walk down a long hall, past the nurses’ desk, around the corner and use the public washroom. And he is susceptible to infection because he doesn’t have any white blood cell regeneration, but he has to use a public washroom?

Concierge BellThen, he adds, there is no call bell – just a concierge bell (ding) that can’t be heard down the long hall where the nurses’ station is located.

I need to get out of here, he tells me. You have to come and see this. I can’t stay here.

I try to be calm and rational, telling him I will get this sorted out but I’m absolutely hysterical inside. I hang up the phone and fall apart. I walk in circles trying to figure out what to do. I pick up the phone and call my brother-in-law, a retired public-school principal. He has a great sense of humour but if push comes to shove his presence and calm demeanor, stating the facts in an even-toned authoritative way, has people jumping quickly.

TearsIn between my sobs I apologize, then quickly assure him that we are both o.k. so he won’t worry (he knows the situation and has been visiting us in hospital). I explain that I’d go there but no one will take a blubbering, hysterical wife seriously so I will do more harm than good. He says he’ll be at the hospital in a few minutes.

I know I have to calm down and get to the hospital but I’m having trouble focusing. How much more can he take? How much more can I take? When will this nightmare end?

I call my step-daughter (I have promised to keep her in the loop, but have warned her this is a very scary ride; she has assured me she plans to ride it out with us and has kept that promise). She says she will meet her uncle at the hospital and tells me to call my neighbour to help me calm down. I call her and she runs over. She is looking for things to do to help but I just need someone to talk me down from hysteria. She suggests that we contact our daughter, who lives out of town (a 90-minute drive away) to see if she can come stay with me for a few days.

Heart StressThough I’m reluctant to tell all my children about every detail, because it changes from minute to hour and back again, my typical day now isn’t so typical anymore. I am not eating. Despite the fact that the clock has stopped ticking for me, that every day is one unpredictable rollercoaster ride, the realities of life still exist. I come home every night exhausted from the hospital and deal with paying bills, doing laundry so my husband can have clean PJs and trying to do the bare minimum to keep up with life’s demands. Then I shower and drop into bed and fall asleep. I am back at the hospital the next day. It’s a vicious circle and I’m getting worn down. Soon I will be as sick as the health care system that is hemorrhaging uncontrollably.

I call my stepdaughter. She is heading into the hospital. I tell her about my neighbour’s suggestion to call our daughter. I ask if she can do it because I can’t think straight.

My neighbour has managed to talk me down. I am more clear headed. She leaves. My brother-in-law calls and chuckles saying, we have a plan. This becomes our code joke in the days that follow. He has spoken to the nurses and, in his very calm and measured tone states, these are the facts: no washroom, etc. – and if we don’t deal with it you will have to deal with his wife who is really upset. The doctors are paged. He states the facts again and asks, would you agree this isn’t the ideal setup for someone this sick? They concur.

RXThe head of the team asks the nurse, how do we get him a new room? And that, right there, tells us again just how sick our healthcare system is. A doctor, who once had the authority to decide what is in the best interest of his patients, must now wade through the bureaucracy that is part of a broken health care system just to find a very sick man a decent bed in a hospital.

I arrive at hospital and my brother-in-law says, the plan has fallen apart. I feel my heart drop through the floor. He then assures me a room will be found, but not by 12 noon as originally promised. He has to go. I thank him, many times, then sit with my step daughter and my husband, who is now calmer, dozing in the bed. Soon after our daughter arrives.

A nurse comes in and asks if I have spoken to the coordinator. I ask who that is. That’s who I go to if I have problems, she tells me, though doesn’t elaborate about the role of this mystery person but I agree. Is there really someone there who will help me advocate?

Soon after a woman arrives and introduces herself, saying she’s the weekend coordinator and I recount our story. She is sympathetic and agrees this isn’t the ideal situation for a patient like my husband. And I quickly realize that we are the unwitting hostages, yet again, in this broken medical care system.

We don’t have enough rooms for all the patients, she tells me. In my husband’s case he was put in a ward for heart surgery patients. That’s where I left him. But an emergency post-op needed the bed so they moved him.

We usually use this room for people who will be discharged next day or palliative care where family needs a private area to say goodbye to a loved one, she tells me. This was probably the only room available when they had to move my husband.

Hospital GurneyShe explains this makeshift room – a meeting room with a blackboard and TV, plus the hospital bed and temporary privacy dividers – is not considered a patient room by the government so the tab for patient stays and care in rooms like this – and there are more – come out of the hospital’s budget. She agrees this is a Band-Aid solution but at least he’s in hospital. They are waiting for a private room just a few steps away, slated to be vacated at 5:00 and cleaned by 6:00 p.m.

She hands me a pamphlet entitled Patient Relations. I immediately notice that one of the Patient Relations Specialists (PRS) listed is someone I know from my early days when I first started freelance writing. The brochure talks about services for ‘families and caregivers’ in the local hospital system (see below for the seven areas handled by the PRS). I wonder why everyone isn’t given this when they are admitted to hospital. I also find out that the coordinators are on every hospital floor. Their job includes overseeing staff issues that come from staff themselves and from patients and their families.

Maybe there is a way to maneuver through this system, I think. Then I wonder what do other families do to advocate for their loved ones? I feel like that’s all I do right now. If I didn’t have family to help me to advocate for my husband I would be on my own. If he didn’t have me he’d be on his own.

At 6:00 p.m., as promised, we are moved into a private room with running water, a toilet and a real call button.

DrainedI am emotionally and physically exhausted but hopeful; still I ask the nurses several times if he will be moved and they assure me this will be his room. I go home and pour myself a glass of wine. Forget what mom said about not drinking alone. I won’t sleep unless I stay calm and I need my sleep to continue to be strong. Tomorrow is another day and I have no idea what new adventures await us…


Patient Relations Specialist (PRS)

[HOSPITAL SYSTEM NAME] is committed to learning and improving upon our health care service with the input we receive from our patients, families and visitors. The PRS offers patients, families and caregivers the following services…

  1. Addressing Concerns – in a supportive and respectful environment. Follow up on concerns so that management, physicians and staff are aware of issues and can address them in an appropriate manner.
  2. Facilitating Communication – between patients, family and appropriate members of the health care team.
  3. Answering Questions – relating to services, policies and procedures.
  4. Listening to Comments.
  5. Implementing Suggestions – that serve to improve the services, policies and procedures.
  6. Investigating Issues: with the intent to review and investigate all relevant issues, facilitate communication and resolve conflict.
  7. Receiving Compliments – with the promise to share these with all members of the health care team.

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…