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…

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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.
12 comments
  1. My prayers are with you, Suzanne, and your husband. His situation is unconscionable. The bed shortage, by the way, began 15 years ago or more, as I recall my late mother in serious condition at that time forced to stay on a gurney in a Toronto hospital for several days, more than once.

    But also, health care has become unnecessarily bureaucratic, therefore inefficient and, worse, counterproductive to providing the proper health care that ought to be given.

    Individuals who find themselves and loved ones in such appalling situation need to map the circumstances, as you are doing, Suzanne, and such details sent to an ombudsman, as well as politicians and news media, to make noise. Sometimes doing so can make a difference when enough people, in what is supposed to be a participatory democracy, speak out to make waves.

    In this season of renewal, may your husband’s health be renewed. Blessings, Sandy

  2. Oh Suzanne I feel for you and your family. Been there, done that, and it is horrid!

    You are very right about one important thing – you must take care of yourself first. Remember how, on airplanes, when they do that safety chat prior to take off? They tell you to put your oxygen mask on first and THEN help others? This is the same situation so put your own oxygen mask on – even if it seems selfish – and find a little teensy bit of time just for you to take a deep breath, take a short walk, enjoy a bath and that glass of wine – and screw the guilt!

    Our medical system is broken from coast to coast. I heard one idiotic pundit blame it on all the ‘old’ people in hospital beds – i.e. because there are no nursing home facilities for them. Duh. It’s not the patients’ fault. There is too much bureaucracy and too few people with the fortitude to make some tough decisions to fix the situation – and unions and executives be damned!

    • Thanks Ceci. I don’t feel guilty but ‘m not sleeping very well anymore. I try to swim (my workout). I am now thinking: It’s the doctor’s job to keep him healthy and my job to keep him happy. My job is turning out to be difficult as we get new curve balls often, but we will make it through this. In the meantime if I can help just one person through the medical maze it will have been worth it.

  3. Suzanne: I’m so glad you’re sharing your experiences about this on your blog.

    I have the feeling that the posts will be made into a wonderful magazine article that will receive widespread publication and will help change the system in some way (be it large or small.) The fact that you are documenting your frustrations makes us all realize how widespread this no doubt is, and how important it is to talk about it.

    I’m glad Bob now has a proper room, and I hope things will work out soon so that he can be on the mend. Stay strong, my wonderful friend. I am there with you in spirit.

    • Thanks Doreen. I haven’t had time to keep up with the blog timeline. We are hopefully in a holding pattern waiting for results of tests and response to treatment. He will be there for a week, probably longer. You are a good friend. I feel lucky to have support from everyone’s positive thoughts and blessings. Thank you! I write about this because I have to. It’s my way of dealing with issues in my life. I do hope that something good comes from my writing about our journey.

  4. When the time is right, name names. Hospital, hospital CEO, docs, etc. Sunshine list was just published last Thursday. But first, stability and improved health for your husband and some rest and peace for you, Suzanne.

    • Thanks for your comments Janet. At this point in our journey I don’t think it’s necessary to say where it is. We all know it’s Canada and, to be more specific, I’m in Ontario. But people are writing me from all over the country saying they’ve had similar experiences. I am still all for a medical system to treats every individually equally and where an illness won’t bankrupt a family, but there has to be a way where we can put something into the system to help out; be it support or whatever is needed for both the patient and the hospital staff. I don’t have the magic answer but I know we need to fix this. Thanks again!

  5. Suzanne

    I am so sorry for the stress you are experiencing with your husband, his health and the healthcare system right now. Please know my thoughts and prayers are with you as you navigate these turbulent waters.

    And while I recognize the healthcare system is in trouble I do want to point out we have had several experiences with the system in Saint John, NB, at the regional and St. Joes and have been well taken care of. Not to say it was always perfect but certainly no horror stories as others often share.

    May your journey become less stressful and Bob heal quickly!

    Trudy

    • Thanks Trudy. It is getting better in that I’m not having to advocate as hard but I still need to be present and looking after his best interests. Not that hospital staff don’t do that, but they’re just too busy to look at every patient in detail so somethings need to be pointed out. But as we stay longer (three weeks tomorrow in total) minus two days at home, and staff see me every day they are now inquiring about how I am doing. The caregiver isn’t really looked after we must look after ourselves. That’s a reality worldwide.

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