After he was gone – 11 months, I am…

touch fingersIt’s been 11 months since I touched his hair, smelled the cologne on his shirt, traced his fingers with mine.

I haven’t marked every month through writing, but I instinctively know the day. It smacks me in the face unabated. No warning. A song plays and tears streak my cheeks. For me the pain is good. It keeps his memory alive.

I remember someone telling me that it’s o.k. to keep telling your story because every time you tell it, it’s different. I’m now keenly aware that each time I share our story it’s becoming more of an abbreviated version: “On March 11th, 2013 my husband called me from work to say he had to go to the hospital. On June 8, 2013 he died.”

Sometimes I invite the listener to check out my blog, if they want to know more, but really, I write about my journey for me. It is catharsis. Like tears, writing purges my anguish. It’s a temporary liberation from sorrow. Re-reading the words brings him back to me, for a moment.

In addition to going to a grief group, I started seeing a therapist. I was desperate the first time I walked into her office in the midst of another bad week that came out of nowhere. “One more time telling his story…our story,” I thought. I’m so tired of telling it over and over again.

TearsI start to talk and words tumble out on top of each other. The tears are embedded in the narrative. “I don’t understand why this keeps happening,” I say, about these days that side swipe me out of nowhere. She explains the ebb and flow of grief and that it’s natural to feel all these emotions weeks, months, years later. “Years? Really?” But I realize my desperation to keep his memory alive. Feeling pain is my tribute. Forgetting him isn’t an option.

This week she gave me homework: “Exploring sense of self by completing the phrase ‘I am…’ (or related phrases).” So I mark 11 months since he was gone by looking at who I am now.

  • I am…no longer someone’s wife. And this starts the tears again. I lost that definition the day he died. I hate the title “widow.” I’m not that…but I am.
  • I am…not who I was. I was me, but I was also Bob’s wife. I planned my days around “us.”
  • I am…not as bereft as I was months ago but still missing him terribly.
  • I am…lonely but getting used to being on my own. But I am still lonely. Everyone went back to their lives. Mine is shattered and unrecognizable.
  • I am…reinventing myself. Without being a wife and losing half of me when he died I’m an emerging as new person. My acts and actions aren’t always predictable.
  • I am…unpredictable.
  • I am…stronger than I was 11 months ago. I’ve learned to do the jobs he did – get propane for the barbeque, putting up curtain rods, painting, reaching that top shelf (he was 6 foot 2 and I’m 5 foot 2)…but that doesn’t mean I like doing these things on my own.
  • I am…trying to be a good mother, but I am not the same mother I was. You must try to hide your feelings from your children (sorry if they’re reading this). My journey isn’t theirs.
  • I am…truly happy that I chose to move from “our home” to “my home.” I feel safe here. I brought pieces of Bob with me to create a new place for us. I don’t live with his ghost, in a physical sense – seeing him in a spot in the house where he used to be. But he is here with me in a positive way.
  • I am…living a dream. I would like to believe that this chapter in my life isn’t real. I am watching it from outside. I will wake up and he will be next to me. But it doesn’t happen.
  • I am…not over it. I never will be. Slowly the pain will fade, but the loss will always be there.
  • I am…grieving, and this is what it feels like.

One month after he was gone

Our Wedding

Today marks, by the calendar numbers, one month since he died, June 8, 2013.

Last week I didn’t cry. Instead of finding solace in not crying I worried my lack of tears meant I wasn’t a good wife/partner. I worried I had cried all the tears I could. What is that saying about Crocodile Tears? According to Wikipedia they are “superficial sympathy…a false, insincere display of emotion.” I am trying to make them come but they don’t.

This week they are back. I am in denial again. But now the denial isn’t as shocking. I just look at his side of the bed and think “He’s not there.” Tonight I cleaned the kitchen table. I went behind the chair he always sat in and thought “he’s not here.” And that was it. Would that be acceptance? And yet I can’t accept this. It’s still just a bad dream. It’s me wanting it to be just a bad dream.

I keep having replays of that scene in the movie Steel Magnolia’s where Meline (played by Sally Field) tries to come to terms with the reality that she just buried her child.

“God I want to know why?…No it isn’t supposed to happen this way…I just can’t take this.” In the end the scene takes a humourous turn, but I’m not feeling much laughter these days. That’s not reality.

I have tried to get the “cause of death” for the insurance companies but no one seems to know. I call and call and get passed off to someone else. Finally I go to see our doctor and she says she will get it. Today someone from our doctor’s office called and said the information came in and the doctor wanted to talk to me to explain it, so I went.

It isn’t easy talking about the details of how someone died but when I read the report all I could see was that recurring word “unfortunately.”

Unfortunately, this pneumonia progressed…Unfortunately, he was transferred to the ICU and deteriorated…Unfortunately, after a few days of treatment the family decided to withdraw (intubation).”

Like we had a choice? Should I have let him stay with that horrible tube down his throat; his face swollen from being propped on his stomach, then turned over, looking like he had been in a fight? Puffy features on his always slender, long face and his strong square chin. It wasn’t Bob. And when we removed the intubation and they shut off the machines, it didn’t take five days or five hours (as we were told it could). It took five seconds. No time at all.

And now the tears are back. Now I can’t stop crying when I think of him.

No one will ever know me like he knew me. No one will remember what happened when my mother died. No one will understand when I tell them something that happened when he and I were the only ones present.

Yes, I am taking care of myself. Yes, I am getting therapy. Yes, I am going to a bereavement group where others tell their stories of losing someone close, many spouses. Some can’t forget after three years or more.

I hear clichés over and over again:

You won’t get over this, you will just get through it.
Normal is just a cycle on the washing machine.
This is your new normal.

Then there are the ones that make you feel dissolute in a desolate wasteland because you can’t see or touch or hear or feel these things:

He’s an angel on your shoulder.
He’s watching over you.
He’s telling you what you should do.

Really? Because I can’t hear him. I can’t feel him.

And then there are the little things I miss. I want to touch his cheeks to feel the unshaven stubble. I tried to feel that after they unhooked  him from the machines. He was so cold and there was no stubble. I touched his face in the casket and it was a terrible feeling – makeup. No, I will never, ever feel that stubble again.

I want to hold him and feel the scar on his back where he had a benign lump removed. It gave me a sense of reassurance. It was him. We were connected. He knew my body’s quirks, I knew his.

I want to trace that one fingernail with my finger; the one I traced every day and gently chastised him about biting. He said that it was crushed at work in a machine and the nail never grew back. Whatever it was, that, and every physical, tangible connection I had with him is gone. It’s just a memory.

Today marks, by the calendar numbers, one month since he died, June 8, 2013.

Hospital Diaries Part 3

NYT PhotoI realize our story is not remarkable. Other people have been through similar or more lengthy and draining health ordeals. I am just sharing our journey as it happens, not knowing where it will lead us. I am also learning to work within and around a health care system that can be daunting for the healthiest person, let alone one that is sick and caregivers who are beside themselves with worry. Of course there’s the fact that, being a writer, this is the way I deal with issues in my life, by writing about them.

I am losing track of time. Today is April 7th. My husband has been here just shy of three weeks. Doctor team consultants change every two weeks. We will be on our third GI consultant tomorrow, Monday, April 8th. Some days are less remarkable than others but it was difficult getting here. How do you show a busy medical team that someone really needs their help? How do you stand out in a crowd of very sick people? How do you convince doctors who are so overwhelmed with patients, and new ones arriving every day, that your case really is a priority?

Day 5 March 24
PatientAccording to admissions records this is really Day 1, probably because they start counting when you get into a ‘real’ room paid for by the government, though I’m only guessing. It’s Sunday and I arrive at 12 noon with our daughter. My step daughter is sitting in a chair looking at her father. She’s visibly upset. She tells me that my husband has a virus and the doctors ordered strong antibiotics, currently being pushed into him via IV. She has asked to have a doctor come up to talk to us. She is told they are busy in emergency and it will be four to five hours. That’s o.k., I say. I’m not going anywhere.

But first, I’ll back up to explain…
For my husband, a virus is potentially lethal. Though he is admitted to hospital because of pain, during his first admission via emerg the usual blood workup found that he had a dangerously low white blood cell count. This essentially means he doesn’t have the ability to fight infection on his own. The hematology (blood specialist) team was called in to consult. We learned that, in my husband’s case, there are two potential reasons for the low white blood cell issue:

  1. The medication he had been on for many years, that may be why his GI issue has been in a 10-year hiatus, has been known to supress white blood cell regeneration, or
  2. He has myelodysplastic syndromes (MDS, formerly known as preleukemia). I have tried not to freak out since they told us this. He was given a bone marrow test but the results had, basically, been inconclusive to date. However, at discharge after his first stay in hospital we did receive a package of information about MDS and were given an appointment with a specialist, to see as an outpatient (but that had to be cancelled because my husband is no longer an outpatient now).

PillsThe specialist would be doing a second bone marrow test, which the doctors feel would be more accurate since he will have been off the medication for four weeks – what they consider the maximum time that someone with the slowest metabolism will get this medication completely out of their system. So whether he’s in hospital or out his second bone marrow test is schedule for April 10th (the day after my birthday – he was in emerg March 20th – his birthday and his daughter and eldest brother’s birthday too). We are told we should have results by April 12th.

Back to the present…At some point my husband starts to feel the pain again. I press the nurse’s call button, then lay on his bed talking to him to get his breathing back to normal before he either passes out from hyperventilating or vomits. The latter happens quickly. I dump the first huge bowl into the sink and fill up another one, and so on. When the nurse finally arrives with the painkiller he is feeling somewhat better. I am given a stern look and admonished for dumping vomit in sink instead of the toilet, through a door beside the sink. I apologize but the nurse turns on her heel and huffs out of the room.

RNThis is the first time I have felt that we were not being treated with respect. Nurses are busy. I get that. But honestly, that was the last thing on my mind as I ran back and forth while my husband begged for the bucket to puke in. Couldn’t she just nicely tell me what to do next time? Then I think, am I just being too sensitive?

Soon after custodial staff come to clean up and I apologize many times. They say it’s no big deal and seem to understand.

At 5:00 p.m. I insist that my step daughter go home to her family, telling her that our daughter and I will talk to the doctors when they arrive. She reluctantly leaves, though I can see she’s feeling wrung out like a dishrag after watching her father at his most vulnerable for hours.

By 7:00 p.m. my husband is resting comfortably and my daughter and I are exhausted. I go to the desk to ask my husband’s nurse when the doctors will arrive – it’s been eight hours, not four or five. She says they are very busy. She asks what I want to speak to them about, adding, is it the virus? Yes, I tell her, but I have other questions. She says she will page them again.

patient 2A few minutes later the nurse and another nurse walk into the room and stand near the door. They both have their arms crossed and I know this isn’t going to be an amicable experience. We are told that the doctors are too busy to talk to us. I feel unable to express my concerns looking at their crossed arms and stern demeanor. I say I am just looking for some answers and given that the GI Consultant on his case is someone new the next day, I’d like to confer with the staff that will be leaving. My husband’s nurse finally says she will talk to someone about getting a family meeting set up and they leave.

And I think, you can request a family meeting? Why didn’t I ever hear about this? A meeting with the doctors and family members and some staff? Really?

Our daughter has been quiet. She rarely gets angry (like her father) but she is obviously mad about the way we were approached by the staff. I tell her she should speak up. She was afraid that I would think that she was interfering. I let her know that I need support to support her father. She agrees and says she will speak up if needed. 

I tell her we’ll get things straightened out tomorrow. We go home tired and hungry, eat and go to bed.

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…