A belated farewell to Robin Williams – sometimes it feels like it’s about me

Robin William’s death was beyond tragic. If I could have been with him I would have told him how I struggled with this myself. I wrote a few blogs about a recent bout I went through. One was a suicide note: After he was gone: Darkest Days.

A friend  wrote me an imploring e-mail reaching out to me. I changed the wording after I had settled down… a bit After he was gone: Darkest Days 2.

I obviously have a strong affinity for those who are left behind after the death of a loved one. When Williams’ wife posted about allowing them privacy during their “profound grief,” I was struck again by my own personal journey. I have used that exact phrase in my own blog. Ironically (not in a funny way), I recently posted a blog about my grief journey and my own battle with depression: My new reality.

Sometimes I wonder if anyone even reads my blog (save for a few good friends). A few people post on Facebook and other social media, and some tell me they read it. Some say they don’t read it. Fair enough. But without the tangible feedback those in the world of their own depression feel alone.

Reaching out is scary. No one touching you when you reach out is worse.

The other night I had a friend over. I read my bog post My new reality to her and she cried. I realized that it’s too painful for people to read. So if they find it too painful to read about other people’s struggles then it’s no surprise that we keep our demons to ourselves.

Rest in peace Mr. Williams. Your demons are purged. You are missed profoundly by those who loved you most. but you aren’t in pain anymore.

After He Was Gone: My new reality & my old demon – depression

I haven’t written a blog since May: After He Was Gone: Darkest Days. It was just under a year, the long weekend in May, when I had a breakdown, actually one of two, leading up to the one-year anniversary since Bob died, June 8, 2013.

Image courtesy of FrameAngel / FreeDigitalPhotos.net
Image courtesy of FrameAngel / FreeDigitalPhotos.net

I found myself sitting with my doctor in her office, another blog in my hand: After he was gone – 11 months, I am. I’d been crying for two days. I felt like I was going through the first days of loss all over again. It was like being violently thrown back in time and crashing against the grief wall, living the first days of loss over and over and over again.

She read my blog, raised her eyebrows ever so slightly, then said “O.K….” We talked at length, actually, she talked. I cried, in between getting out a few straggling thoughts of depression and hopelessness. After what seemed like an hour, and having assessed my state of mind enough to feel she could trust me not to do anything rash, she asked me to increase my antidepressants and made a follow-up appointment.

It takes a while for the medication to kick in, but when it did I finally realized it wasn’t a place I wanted to be either. I was numb. I couldn’t cry. I didn’t care about anything. There was no sadness, but there was no joy either. I was existing in a fog of daily to-do chores. I could work because I could focus again, but my creativity was nil. I went back and told her I needed to decrease the medication. She agreed, but continues to monitor me. I am on the lower dose now and started to feel emotions again. It actually felt like relief when I cried again. But I wonder why I’m doing this balancing act with antidepressants.

*****

For me, there is a hairline difference between existing and living. It’s called antidepressants. Given the right dose I feel ‘normal.’ When I go off them I find myself in a deep, dark cavern. It’s been going on for years. I have not found the antidepressant antidote that works for me. I must stay on them, even just a low dose. I’m not crazy, but they make me feel, well, ‘normal.’

So what is normal, or abnormal? Our Western society, dictates that we must smile and be happy. No matter how far we fall, we need to get up, brush ourselves off and move ahead. We need to “get over” anything that happened in the past and focus on the future.

Things get more complicated when you set out on a grief journey. It changes life in a way you can’t imagine. I try to learn as much about it as I can, and about ways to get through this, because I know that I will never will get over it. One of my lessons has become a new buzz phrase in Western society: “being in the moment.” It’s done through conscious effort but has been used in meditation for decades. It’s a place where you don’t think about the past or future. If your mind wanders back or forward, you need to pull it into the present.

Image courtesy of Arvind Balaraman / FreeDigitalPhotos.net
Image courtesy of Arvind Balaraman / FreeDigitalPhotos.net

It’s often a fight to get the busy (sometimes referred to as ‘monkey’) mind to settle down. Even those who have been meditating for years still find their minds wander. But the entire act of control over your mind and where you focus is achieved with repetition. The idea is to bring the practice into your present life. Don’t think too far ahead. Don’t focus on what happened before. Live each moment as it comes, every day.

In grief this is the biggest challenge. When we lose a loved one, we are thrown into a frenzy of making arrangements for their burial, or whatever our tradition requires. We are surrounded by family and friends who hold us up. We console others on their loss of our loved one. Then, suddenly, we are left on our own. Life goes on for everyone else. The grief-stricken don’t have a life as they knew it. Being in the moment means pain.

*****

As time moves on we move further away from the intense grief but there are times when the loneliness of our new reality makes us apprehensive, fearful and sometimes depressed. For me it’s long weekends. I am alone, not by choice. So I post on Social Media, hoping to connect with someone out there:

“I don’t like weekends. I especially dislike long weekends. Why? Because I feel like everyone is with family hanging out or getting away, especially in the nice summer weather. Not that my preconceived idealist notion is true, but it feels like it to me. I don’t have my guy, or cats…or anyone to be with, consistently, throughout the weekend. I used to, but not now. Yes, I do try to make plans but sometimes it seems like a lot of work. I never had to do this before. [This is] Another part of my new reality.”

I am greeted with support. Some say they feel this way too. Others say this is a revelation to them. Over a year ago it would have been a revelation to me. But not now. And so I continue on my journey, after a year has passed since he was gone. I will be on pills that make me try to feel normal. I will smile and some days I will feel happiness, but nothing is the same, or will ever be the same. There is a huge gaping hole in my heart, but I’m the only one who can feel it. I didn’t sign up for this, but this is my new reality.

*****

As I write this it’s the last day of a long weekend. I have seen some friends. I have spent time alone. It feels like it’s been a week, but I made it.

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.

After He Was Gone: Who will I share my stories with now?

Today was a good day but (the BUT) I want to post something about what I’m feeling. It is more of an information piece to get you thinking about who you share things with in your life.

I had a great day teaching my first class for a new course. I would normally share that with Bob. That, in itself is frustrating because I can’t. But something happened that only he and I would understand and I kept thinking “I want to tell him” then, “Oh, I can’t.” I started thinking “Who can I tell?” But then I knew no one else would Really ‘Get It.’ He knew the people who’ve been in and out of my life for over 30 years. He knew me better than anyone. I wouldn’t have to explain it, just say “Did you know?” and a brief sentence and he’d say “Wow! That’s interesting!” And maybe we would strike up a “remember when” conversation. But this isn’t going to happen.

It’s really frustrating when that happens. It’s like wanting to punch a wall but it keeps disappearing. Argh! Another milestone, so to speak. But (the (BUT again), anyway, it was a good day.

Three months after he was gone

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.

*****

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.

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.” 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.

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.