Saying Farewell to Facebook Posts on Grief

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It was six months on December 8th since Bob Donaldson died. Half a year. It’s hard to believe. And with this anniversary I want to tell you that I won’t be posting about my grief on Facebook anymore. This decision wasn’t done lightly, but I realize that those I love most are on their own grief journey that doesn’t parallel mine. If there’s one thing I’ve learned it’s that we need to respect each person’s grief journey, not to judge it. I don’t want to cause pain. That wasn’t my intention. But how could I not cause pain when I reveal raw grief? I realize that now.

This has been an amazing experience. Writing has always been my outlet. I found some magical things happening when I posted. It began as my need to reach out and get support. It’s actually ironic and sad that my best writing is done through pain, and without Bob I have no one to talk to or confide in. You were my support system.

A true gift came when I began to learn that my posts helped others. What kept me going were those personal messages, or being tapped on the shoulder by someone on the street telling me how their experiences paralleled mine, or how they respected me so much for what I wrote. I also learned that my posts educated others. Many cultures bring together learning of life and death. North Americans try to avoid death, and the topic, so when it hits home for them, the devastation is raw and unparalleled by anything ever experienced before. I see it over and over and over again; the newly grieving who can’t stop crying. That was me and sometimes still is, but less often now.

Thank you to all who have called me, sent cards and gifts, who have come by to be with me, shared your private stories with me and posted words of wisdom here. Your interactions have helped me so much. I am forever grateful for your love and kindness.

I will post my messages on my blog now and put the links here so you can choose whether or not to read them.

Bless you and thank you for your sharing and caring.

Painful thoughts after he is gone

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The world is upside down and backwards. I am in a bubble surrounded by a haze. I don’t want to push it. Reality will seep in and take over.

I am sure I will wake up and find that this is a cruel joke. You will walk by and say “Hi Sweetie Pie,” and I will say “Oh Bob” and laugh.

Instead I cry every night. As the the days grow shorter your lack of presence is more pervasive. Pain slips in easily behind the darkness at the day’s end. And when I think I am done crying I start again.

My emotions rule me. I am not in control. Today I had to go to a hospital. I walked through the doors and my heart was pounding. My breathing erratic. I realized it was the first time I had been in a hospital since I left you there.

“This isn’t the way it was supposed to be.” That’s what the grieving always say. Now I understand what it means. There is no normal. Routine is gone. This isn’t reality just a cruel joke; a horrible nightmare. When will I wake up? I bounce back and forth. I am so tired. It is easier to allow my emotions to control me. I can’t control them. I give in to the sadness because fighting it is just too hard.

I am so afraid to continue this journey called life without you. I am strong, but am I strong enough to go on without you? Most days I feel like a leaf being pushed around by invisible air, never touching the ground, just brushing past it. Push and pull and toss me around. I am not grounded without you.

I don’t know if these words will help me through this. I would rather believe that you will be here with me when I wake up. We will know that every moment is precious. We will be comfortable in our silence as we were.

But now the silence is forever. Your voice is in my mind but not my ears. The bubble is starting to fall apart. There are small cracks as pain seeps in and the haze that was my buffer is pushed aside by the knowledge that this is not a dream no matter how much I wish it was.

I know that I will need to face reality that you aren’t coming back, but I can’t do that right now. Not yet.

 

Three months after he was gone

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This blog will seem disjointed as you read it. My thoughts are disjointed, but I think it will all come together if you read through to the end.

September 8th: It is three months now since he has been gone. I have cried, sometimes totally bereft, but not as often as I did before. It doesn’t mean I don’t miss him. I miss him every day, hour and minute. It just means that life goes on. When he died I thought it stopped, at least for me. But it didn’t.

I realized one day this week that we all have two choices. We can get up out of bed every morning and put ourselves out there to possibly face ridicule or we let good things come into our lives. But it seems easier some days to stay in bed and curl up in a ball. It was the day I had this epiphany – not really such a prophetic realization, but a simple thought that stayed with me that day. It was that day when I encountered the most hurtful and painful anger.

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Bob was a family man. His parents, children, siblings, granddaughter, nieces and nephews were most important to him and me of course. Forgiving transgressions has always been part of our family’s culture. We don’t always agree with decisions made by others, but do our best not to judge. And when a family member is in trouble we are always there to help.

Bob wanted to protect his family from harm or hurt. He wasn’t authoritarian. So if he got mad his children stopped and listened. Sometimes they just did what they wanted anyway, even if he disagreed. Kids are like that. But they always thought twice about something if Dad didn’t approve.

*****

People often say to me, “Bob would have wanted” this or that. I don’t know what he would want other than to be with us. He wasn’t ready to die. We weren’t ready to let him go. But I do know he would be hurt and angry if his death created a chasm between his loved ones. I saw that happen this week.

*****

We all grieve in different ways. We go through the stages of grief – denial, anger, and somewhere down the road comes acceptance. But from what I can see the danger is in the phase of anger, and anger, like all the phases of grief, can arise over and over again, alone or in conjunction with other phases of grief.

I have tried to understand and give leeway to those who are also grieving Bob’s death. I don’t feel my grief is any more important than anyone else’s. I don’t judge how others grieve. I’m not angry at them. If grief separates us for a while, that’s o.k., as long as we come back together. But what happens when grief becomes anger that festers? What happens when things are said that can’t be taken back? I don’t think there are a lot of things that can’t be taken back with “I’m sorry” and a hug, but if the anger is so vile and ugly and hurtful it may take on a life of its own. I saw that happen this week.

Bob loved all of us and trusted us to stay strong together. He would not want us to hurt one another or judge or be spiteful.

Our grief and grieving is not about ourselves, it is about the loss of someone we loved. Some people choose to move more quickly. Others are more pensive. No one’s grief is more important or sacred than anyone else’s. We must be tolerant of everyone’s grieving process and forgiving, even if we don’t share the same feelings as someone else mourning our loved ones. Judgment of another’s grieving process at this fragile time is dangerous. Words can be said and deeds done that can’t be undone.

I have felt so much loss these three months, but never so much hurt as I felt this week when anger spewed its ugliness at me. What would Bob say now if he was here? Knowing who he was I am sure he’d be mediator and smooth things over. I am sad to know that his death has caused a divide that will be hard to mend. I will try to forgive but it will take time to forget.

Hugs for healing

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I have learned that hugs are healing and I am trying to share that message now. I do it with people I know. I share it with strangers. I will share two stories about hugs here. 

A few weeks ago I was purchasing a new piece of technology. When I was working with a tech guy in the store to get my purchase up and running I turned around and saw someone I knew. He was really an acquaintance. We had seen one another at group functions and waved hello and that was really it. We never really talked. We are friends on Facebook, which has significance to my story about hugs so I’ll share this first.

I use Facebook to post some of my thoughts about what I’m going through, mainly on days when I just can’t handle the grief on my own and I need an outlet. But in return I have had some amazing public and private responses about how people believe that what I post has helped them. Some people even say it’s changed their relationships with significant others and their priorities in life. One person was going through a prolonged illness with a family member who eventually passed away. They wrote me a message to say that my posts and blog had helped them prepare for their grief. So it may sound crazy but I am so gratified to know that my pain is helping others. Releasing it to the world is helping me, at least to some degree.

So back to the acquaintance. We never really talked before except to say “Hi.” But soon after we saw each other in the store, he came over to me and told me he had been reading my social media posts and said “I wanted to tell you that I think what you’re doing is brave.” I thought, how can I be brave when I feel so weak and alone but I thanked him. Then I asked him, “Do you know what helps?” He looked mildly confused. Then I said “hugs,” and so we hugged. And I did feel better with the embrace. It’s something that I’m learning as I journey through this dark grief. And I hope that he passes this message on to others and that he can ask for hugs when he needs them too. But hugs are also a message to those who don’t understand how to deal with someone who is grieving. They stand a distance from you and mumble “my condolences,” or “I’m sorry for your loss,” then they are lost about what to do next. So I am telling people that hugs are healing and that they help everyone who needs to be propped up for any reason.

The acquaintance and I talked briefly, then he went back to his purchase and I went back to working with my tech guy. I briefly explained to the young man (during our discussion about my purchase he mentioned that he was 23) and I told him that I had lost my husband to explain that most North Americans would consider strange behavior – hugging random people. After we finished I thanked him for helping me with my new purchase. I put out my hand to shake his and he opened his arms and hugged me, a big, warm bear hug. I thanked him and I thought “This is so great. I hope he pays my message forward and shares the importance of hugs for healing too.”

A few days later I went to visit my sister. She lives near Washington, DC and so I flew there. On my way home, as I was waiting to get through security at the airport, there was a young woman standing ahead of me. I’m guessing she was in her mid-20s. She was wearing a long sundress and I remember thinking she had some amazing tattoos on her arms. She was pushing a stroller with a toddler in it. Then I noticed she was crying. I asked if she was o.k. She said she was so sad. She wanted to stay because her family was there but she had to go home. She had come for her father’s funeral.

I asked her if I could ask her a favour. She nodded and I asked her if I could give her a hug. She nodded again. I leaned over and put my arms around her and whispered in her ear, “It’s o.k. I just lost my husband. I know this is hard but you will be o.k.”

She returned the embrace and then thanked me as we were pushed up through the line and into the security section.

As I was gathering my belongings from the X-ray belt someone came up and tapped me on the shoulder. It was the young woman. She said “can I ask you a favour?” I said “yes.” She said, “Can I hug you?” And of course I said “yes.” She thanked me for helping her during her difficult time, and then we parted ways.

I thought a lot about hugs on my way home that day. If everyone hugged someone to give them strength and if we hugged each other without feeling constrained by uncertainty, but moved instead by love and caring, how wonderful would that be? In my mind the world would be a better place. Well, maybe that’s just being too idealistic. But for the moment I will just concentrate on receiving and giving hugs and spreading the message that hugs can be healing.

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One month after he was gone

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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.” http://www.youtube.com/watch?v=c-Ai4SUrj8w. 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.

Post Hospital Diary – After He Was Gone

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I stopped writing my blog about our journey to what I thought would be a healthy outcome for Bob. I look back and see that I needed all my strength to help him fight for his life. My husband left this earth on June 8, 2013, just a few months shy of our 28th year anniversary. I may continue writing our hospital story but I have to start writing about my journey without him now too. It is painful and raw. I am forlorn and though people reach out I feel so alone. A part of me is gone. I have never felt so much pain in my life. But today I woke up and for the first time since he left I thought ‘I will get through this.’ I know the pain will diminish. Some memories will become foggy. I don’t really want that to happen, but without our ability to go on we are stuck in a time of desolation, a place where it’s impossible to live with that much pain.

I wanted to write something to share with others about Bob at his funeral. I was tired and not sure that I could, but I did. My message was simple. It wasn’t about all the details of  his life, it was about the man he was and how he touched others. I read this at his funeral service and saw a sea of faces as they listened.

My man was loved by so many people. I know he would have been overwhelmed. Here is my simple Eulogy. I hope this will help you know more about a fine human being who has left many people saddened by his loss.

For Bob
BobI really wanted to write something to honour Bob because I’m a writer and that’s what I do. But honestly I am tired. This has been a whirlwind from the day he called me from work, March 11th to say he was going to the hospital until his passing less than a week ago.  And though I tried I wasn’t able to write much because I don’t know what to say. But I think that everyone else has said it for me so I’ll share with you and what we have learned from others about him; some things we already knew, but there were some amazing surprises.

Bob was a simple guy. He was honest and had a strong sense of right and wrong. He had more integrity than anyone I’ve ever met, or probably ever will meet again. He was a man of few words. He didn’t get mad often but when he did everyone listened.

I have heard this said over and over during the past few days as people shared their stories about Bob. What I don’t think he realized was just how well respected he was. I have seen that firsthand over the past months as people came to see him in hospital, sent messages, sent healing prayers, and so much more and seeing you today and so many people here yesterday as well.

I was amazed at the outpouring of love but even more at how much people needed comforting because they had lost someone they admired, respected and loved. They shared their stories and their heartaches about losing a very good friend and relative. And by comforting them, I was also comforted.

Bob wasn’t a social person. He didn’t have a lot of friends calling or coming over. And yet, since his passing, I have had hundreds of messages from people telling us how much they miss him. When a person is missed it means they were loved and they touched the lives of others in a special and meaningful way.

The most important thing in his life was his family and children. He was proud of being an electrician and took pride in his work at Presstran as a lead hand. But until he became sick I didn’t realize what an impact he had on the individuals he worked with. First a gorgeous plant and get well card arrived. Then his co-workers came to see him. They regaled us with stories that had us laughing until we cried. When they left Bob would tell me he was amazed by the outpouring of concern for him by his colleagues. He would have been totally blown away to know that when we started this remembrance at 11:00 a.m. Presstran shut down production to honour him. Please know that his family is overwhelmed by this gesture of respect.

Bob leaves a huge legacy behind. I see the best of him every day in his three children and granddaughter. He is loved by his three brothers, sister-in-laws, nieces, nephews and other family members and friends. I am proud to be part of his family and to have been with him for over 30 years.

And though I know he would not want me to be maudlin or sappy, and I can hear him say “it’s enough to gag a maggot,” as I am speaking, I hope that he knows just how much he truly is loved and will be missed and what an amazing tribute we are giving him having all of you here today to honour his memory and celebrate his life with us. I’ll always miss you Sweetie Pie. 

Hospital Diaries Part 5

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The second bone marrow test for MDS is set for May 10th. We are told we just have to wait two days (until the 12th – the Friday) and we will finally get results.

Hosptial 5On April 10th, as I predicted in my head, I get a call in the morning from the specialist’s office asking where my husband was. Despite my asking each GI head doctor if they would stay on top of this, someone dropped the ball. This meant no one told the hematologist in hospital that Bob was still there and that he had to do the bone marrow test himself that day.

I call Bob and told him he’d need to get in touch with the hematologist there and tell him that he was still in hospital and see if he could get the bone marrow test done.

The hematologist comes to see Bob and says he will try to do the bone marrow test on Thursday the 11th or, at the latest, on Friday, the 12th.  Now have to wait until Monday for a definitive answer. The test was done on the Friday.

woman head in handsThen, just when you think you can’t take it anymore someone else throws a punch to your gut. My husband was in bed and my step daughter and I were in his room. The hematologist comes in and sits down in a chair next to the bed. He is gentle but has confirmed this with a colleague and he feels compelled to let us know (better we should not have to wait through the weekend – and to that I would agree). Bob has MDS – medium to aggressive.

I can see Bob’s chin quivering. I go to his bed and lie beside him and hold him. I start to cry as the doctor explains the diagnosis but I am bereft and can’t hear what he’s saying. Then I’m sobbing uncontrollably. Bob is whispering to me that it will be o.k. as tears well up in his eyes. My poor, strong stepdaughter is also visibly upset but takes over, asking questions. The doctor leaves at some point and one of Bob’s friends walks in to visit him. My stepdaughter and I ask if he will stay with Bob for a few minutes and he does. They start chatting and I can tell he’s making Bob feel better, or at least Bob is up to putting on a brave face.

My stepdaughter and I leave the room and I fall apart. She grabs my shoulders because I’m sure I will collapse. Bob’s nurse – an extremely competent young man – leads us to an area called the Quiet Room. He sits and talks to us. He brings us water. My stepdaughter tries to comfort me, and her, because my husband, her father, will be living with this blood disease for the rest of his life. If the specialists can’t start treating his MDS (myelodysplastic syndromes) quickly it will, definitely, become Leukemia. In the end that will probably happen anyway.

Roller CoasterThe problem  is that Bob’s pain is still a huge issue. He needs an operation or to stop eating and be put on TPN for months until the white blood cell count is within normal range. Until then surgeons are reluctant to agree to surgery. It is too high risk. It could cause an infection he can’t fight off and he could die. So we move into the weekend with few doctors available to talk to and a diagnosis that will change our lives, most of all Bob’s. And Bob continues to eat because Doctor Number 3 is still pushing food at him.

We think this is the worst that can happen, but we’re wrong. The roller coaster ride just keeps on going.

Hospital Diaries Part 4

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Hospital signI realized a while ago there was no way I could make this a daily blog. My days are full – waking in the morning with worry followed by doing the bare minimum to keep a house in order. I pay bills and feed the cat. The phone rings constantly and e-mails drop into my inbox asking “How is your husband? Please give us an update.”

We are actually in our third admission to hospital now. Since March 11th my husband has been home a total of six days:

Timeline:

  • Initial hospital admission March 11th 
  • Discharged March 18th 
  • Readmission March 20th (my husband and stepdaughter’s birthday)
  • Discharged April 29th
  • Readmitted May 3rd
  • Today is May 11th. He is still in hospital.

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There is no continuity of care. Every one to two weeks a new doctor heads up the GI hospital team. I have asked and been told that it is the same with many other teams. I asked and was told that it is not because this is a teaching hospital. This happens at most hospitals. I don’t have statistics but I can say I believe this lack of continuity in care puts patients in jeopardy. I believe that lives can be lost because of it. I have talked to doctors who believe this too. They ask me to speak out about this; to tell our story. So that’s what I intend to do. I will start by telling you this: There were times I thought my husband would die. He lost 20 pounds in hospital until the day his own, personal GI doctor rotated onto the team for one week. In that one week he saved my husband’s life.

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DoctorThough he didn’t know my husband personally, Doctor Number 1 keeps my husband comfortable (drugged up to dull the pain) while the doctor tries to catch up on many caseloads. In my husband’s case this means going through charts dating back 30 plus years. Because of the complexity of the situation he consults with specialists – GI and Hematology. He is unsure of treatment because the low white blood cell count that complicates things. He is supportive. Then he is gone.

March 25th Doctor Number 2 rotates on. I was concerned about this lack of continuity of care, which is why I asked the nurse to contact the team the night before (see my last post – Part 3). But no doctors arrived that day.

The next morning I go to the hospital and stop at the nurses’ station to ask if I can speak to the weekday coordinator. She is standing there. I introduce myself. She says she will come down to my husband’s room.

She arrives and I tell her our story to date, particularly about the issue of the inappropriate hospital room and the issue with the nurse the night before. She is supportive.

PaperMarch 26th
I pick up the brochure about the Patient Relations and dial the number of the woman I know – The Patient Relations Specialist. I leave her a voice-mail message. Later that day she comes to my husband’s room and we have a long chat. She documents the details of our situation. I ask for a family meeting with his medical team. She says she will set one up.

The meeting is set with the new GI doctor, the floor Coordinator and the Patient Care Facilitator. Both our daughters have come from work, out of town, to be present at the meeting. The doctor begins by outlining my husband’s case. I try hard to bite my tongue. I know the case. I need him to know what’s going on and we are the people who can bring him up to date quickly. He takes a breath and I dive in.

I tell him the issues quicker than a resident can update him. Some of the details he knows. Some he’s not aware of. I ask if he will be available to talk to me twice a week. He tells me he will and that’s always how things go. The coordinator looks at me and nods her head. So I tell him about the incident the night before and the fact that we waited all day and no one showed up. His composed demeanor is obviously rattled then states he will be available. And he keeps that promise. I see him a few times over the course of his two weeks on the case.

PhoneMarch 28thEaster weekend is approaching. My husband is getting weaker. The pain is escalating. I call him in the morning and he mentions that one of the staff is talking about whether he will be sent home for Easter weekend. I freak out again thinking they are going to discharge him and he’s too sick. But it is a misunderstanding on my part. I am assured by doctors that he will not be going home.

April 2nd – My husband can no longer eat by mouth. The doctors decide to give his stomach another rest. But this time he needs nutrition because he is losing ground quickly. I look at his once thin but healthy frame. His eyes are ringed with dark circles. His legs are like spindles. He sleeps a lot because he is on so much pain medication they can’t seem to keep up with the pain anymore so they’re giving long-acting medication plus timed injections and “breakthroughs,” an injection in between the timed injections.

IVHis veins are collapsing from all the IVs and they start a Total Parenteral Nutrition (TPN)  This will sustain him without food by mouth. But it is a thick concoction and is difficult on the veins, especially my husband’s that are already in poor shape after weeks of medication and saline solutions via IV . Eventually they have to stop giving him TPN via IV as the area is becoming red and sore so they order a Peripherally Inserted Central Catheter (PICC) line  (which he still has as of today when I am writing this). After the PICC is inserted and TPN starts he won’t need to put food into his sick and painful stomach. Then he will gain strength. And I see this happen after less than a day. Today we are hopeful. Some days not so much. This is a roller coaster ride that just doesn’t seem to have an end. But today, he’s o.k. I think.

On Monday, April 8th Doctor Number 2 is gone and Doctor Number 3 is scheduled to visit my husband. When I go to the hospital I ask my husband if he’s seen the new doctor. He hasn’t. Later that day I ask the nurse when the doctor is coming and she says he should be around soon. Still later I ask again and a nurse checks the chart. She informs me that the doctor apparently came to see my husband then wrote in his chart that the patient was not in his room.

My husband hears this and is livid. The only time he left the room was to go for a walk and sit by the elevators to get exercise and wait for us to come up. Not knowing my husband (again, lack of continuity in care) the doctor apparently walked right by him.

April 10th: The hematologist came to talk to us on March 21st when my husband was in emergency. We are told the results of my husband’s bone marrow test, to see if he does have MDS,were inconclusive. There are four separate tests. One said Yes. One said Maybe. Two said No. They will have to do another bone marrow test after the medication he was on is fully out of his system. This should be four weeks from when he stopped taking the medication (March 11th). It is scheduled for April 10th. The GI Team says they will let the hematology doctor know if my husband is still in hospital and they will do the test  in hospital April 10th and we will have the results of the test two days later – on the Friday so no waiting over the weekend. We have been counting the days (I will explain more about this in my next post).

Most days I ask to see Doctor Number 3 and am told he will be there in the afternoon. This goes on during the course of the next two weeks. The doctor never comes when I’m there. I am not doing my due diligence as a caregiver. I should be insisting on seeing him but I can’t because my days and nights are physically and mentally occupied trying to keep my husband from the torture he’s enduring.

Hospital bedFor the past two weeks I have been lying next to him on the bed to help him until the painkillers kick in. It becomes our daily ritual as we hold hands and cry together. He whispers “it’s o.k. it will be o.k.” over and over and over again. And we cry. This is the first time in over 30 years that I have ever seen him cry. It won’t be the last time.

Doctor Number 3 has told my husband that he can start eating again. He tells my husband he can be discharged when he starts eating 1,200 calories a day. But each mouthful sets off the pain. And every day we watch the same horror story repeat itself over and over and over again. My stepdaughter implores him not to eat the food but my husband feels he should follow doctor’s orders.

One day a full roast beef lunch arrives. He eats it and gets violently ill. The pain is so bad there are several breakthrough injections. I beg him to stop eating. He finally relents because he can’t take the pain anymore. So we agree that he won’t put anything past his lips that needs to be chewed. And I hope that this will help him.

April 15thDoctor Number 3 is gone. We are told that my husband’s personal GI specialist will be heading the team this week. I come into the hospital to find my husband in pain again. All he has had is liquids. The nurse brings pain medication. I lay on the bed with my husband. I look at the nurse and say “Can you page the GI team? Can someone please see what’s going on?” She says she can’t. They’re busy.

They’re busy. They’re busy. They’re busy. I hear this all the time.

child coloringI think about when my daughter was in grade school. She was a wonderful student; so smart and sweet. Her teacher was overwhelmed with a large class and one problem student in particular. She thought my small child could help her tame the wild child and she put their seats next to each other. My daughter came home bruised. I asked her what happened. She said the boy was hitting her. She said it was o.k. I said it wasn’t. I went to talk to the teacher. I asked her why my daughter was sitting next to this boy who was beating her up. She told me my daughter was a good influence on the boy. I told her I didn’t care about any of the kids in her class except for my daughter and she had better move my daughter out of harm’s way immediately.

The doctors are busy. I don’t care. All I care about is my husband. He is sick. He is dying. Yes, you can die from pain and I know that he will if someone won’t listen.

My husband is lying on the bed his left shoulder on the pillow his right arm draped over the bed railing.  I am holding him whispering in his ear to hopefully give him strength. He can’t talk. I look up. I think no one could have timed this more perfectly. I asked for this and it happened! His personal GI doctor is standing there. He looks at us. I see four residents. Their mouths are opened. They are staring. The doctor looks at my husband and says, “Robert, you don’t look very well” (yes, my husband has a name, but he prefers to be called Bob, but this doctor always calls him Robert – which is fine because, finally, someone who knows him as a person – not a patient number – is here). I look up and say, “the last doctor thought it was a good idea for Bob to eat 1,200 calories.” His doctor looks at us and says “then I don’t think you should be eating.”

I have a small amount of hope now. Someone who has seen my husband a few months ago is confronted with a man who has lost 30 pounds in total since they last saw one another. He knows my husband. He is busy but he cares. And he cares because he knows my husband as a patient AND a person . But I think, if he didn’t come there at that time Bob would have died because the medical care system is broken and continuity of care is no longer a priority.

So I will say this now and I will repeat it again because this has to stop. Continuity of care is imperative. Without it people can die, may have died, because the lack of continuity of care. We were lucky. Some people aren’t so lucky.

Our story isn’t done yet.  I have struggled for weeks against doing this; writing our story. I am tired. I feel most days like I can’t do this anymore but I keep doing it because I have to. I have to keep advocating, and I have to write about it too. The universe is somehow telling me that we can’t finish this journey unless I document it. And there is so much more to tell because our journey isn’t over yet.

Hospital Diaries Part 3

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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

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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.