June 6, 2016

How My Husband Died

It's been nearly four weeks since my husband passed away.

His death still doesn't feel fully real.

Even though I knew -- we all knew -- he wasn't long for this world, it's hard to believe that he died. That Mark actually DIED and is GONE.

I think death is just very hard for us to understand.

He had survived so much in his 47 years. We thought he was going to die four years ago, but he didn't. He fought back just like he had done so many times before.

But not this time. This time was different.

***

Late on Tuesday, May 10, after we had all gone to bed (Mark downstairs, the kids and I upstairs), my daughter heard Mark call out either "hey" or "Jen", she wasn't sure which. I didn't hear it. She called to me that she thought he needed my help, so I sat up, grabbed my glasses, and headed downstairs.

I responded to him just like any other time he needed help with something. Like, "what's up, Mark?" or "what do you need, honey?", but he didn't answer. "Mark?", I questioned, and knelt down beside him, touching his arm. It was clammy.

Clammy/sweaty skin tends to mean low blood sugar for a diabetic. I thought, he can't be low, his sugar was over 300 when we went to bed. But just in case, I tested it. Twice, because I couldn't understand. Both times the results were still over 300.

And he wasn't responding to my increasingly anxious pleas of "Mark, wake up!"

I realized this was something else entirely and we needed help. I yelled up to my kids, "Quick! One of you bring me my phone, there's something wrong with daddy and I don't know what it is, so I have to call 911!"

I heard them both scramble. I don't remember who handed my phone to me. They were now both downstairs wanting to know what was going on as I dialed 9-1-1 and hit the little phone symbol at the bottom of the dialpad.

I couldn't tell them much before an operator answered, who asked for the address and transferred me to our local agency. A man came on the line and I told him what was going on. He asked if Mark was breathing. By this time my son was kneeling down beside him, trying to wake him up, so I asked AJ if he could tell if daddy was breathing.

Through fearful tears he said, "No, no I don't think he is!", which I relayed to the dispatcher, who told me I needed to start chest compressions.

I told AJ he had to move, I handed the phone to him and told him to put it on speaker. Then I knelt on Mark's left side, placed my hands one on top of the other between his nipples and started pushing. "One, two, three, four. One, two, three, four", the dispatcher made me count with him. I began to cry. He reminded me to keep pushing and counting. I said, "I am!" and he said, "out loud".

I turned my head to look at Mark's face and demanded, "What is this, Mark? What are you doing??" Then I cried at the dispatcher that, "they need to hurry up!"

Mark's body jostled with each compression. He gave no response.

I yelled to the kids to unlock the front door. They opened it. We heard the fire truck pull up. I muttered, "come on , come on" as I pushed, still counting one, two, three, four. An EMT entered and knelt on Mark's other side. I yelled, "they're here!" at the dispatcher and moved out of their way.

I ran to my kids who were crying, hovering around the bottom of the stairs. I wrapped them in my arms and cried with them. They took turns imploring their dad to wake up and be OK. They cried, "please don't die." I whispered, "This might be it" and they shuddered, "No!".

The EMTs worked on Mark, doing both chest compressions and shocking his heart, for at least 5 minutes. I was honestly surprised when they got a pulse. They said they'd get him ready for transport to the hospital and asked if I needed to call anyone.

I realized my phone was still by Mark. AJ retrieved it for me and I immediately called a friend who I knew could get up and come over. Then I tried to call Mark's mother. She didn't answer the first time or the second. I tried his sister. She didn't answer either. I couldn't believe it. I knew at least my MIL kept her phone near her at all times, just in case of a call like this. Next, I heard my SIL answer, but she couldn't hear me. I kept trying both of their numbers until we finally got a clear connection.

I cried into the phone that Mark's heart had stopped, EMT's got it beating again and would be taking him to the hospital. They said they would be on their way.

I didn't think I'd be going with Mark to the hospital because I didn't want to leave my kids. They were so scared and it was nighttime. How could I leave them? But they insisted. My daughter said that she would take care of AJ and that daddy needed me, they would be OK, she could handle it. I reluctantly agreed, knowing my friend and my in-laws were on their way.

I have no idea why, but the ambulance did not go lights and sirens, even once Mark's heart stopped again and they had to resume CPR. In fact, the EMTs worked on him all the way into the ER, walking and pushing on his chest, as I followed them into the building.

He was wheeled into a room and several doctors and nurses swarmed in. I lingered outside the room, pacing, not really knowing what to do with myself. Some other ER personnel noticed me and got me a chair and some water. The hospital chaplain on duty must have heard the code blue announcement because she suddenly appeared and introduced herself.

The chaplain and I waited about 10 feet outside the room as they continued to work on Mark. They'd get a pulse, and lose it again. I thought, why are they trying so hard? He remembers what it's like to be shocked and he hates it. He would hate this. After some interval of time that I cannot discern, they got his heart beating and stabilized.

I was asked all the pertinent questions by the ER doctor. How was he today? Fine (fine for Mark). Were there any symptoms leading up to this? No, it was a pretty typical day for him. I asked if his implantable defibrillator fired. They didn't know.

I would never get an answer to that question. Interrogating Mark's pacemaker/defibrillator was the least of their concerns. I think now that it did fire at least once, which is what made him call out to me.

They told me he was stable but critical and that they would be starting the therapeutic hypothermia protocol. They cool the body (with the patient intubated and sedated) for 24 hours in order to improve neurological outcome after suffering cardiac arrest. Yet another thing Mark would hate. He was always cold already. To be made extremely cold on purpose? I didn't like it a bit, but at least I knew he'd be sedated the whole time.

By now, my in-laws had made it to the hospital, having picked my kids up on the way. The friend I had called was also there with us. We headed to the 7th-floor waiting area while they got Mark admitted and transferred to the cardiac unit. We saw him there and decided to go home for some sleep because that was all Mark would be doing for at least the next 24 hours.

My kids opted to go home with my mother-and-sister-in-law. They invited me to as well, but I decided I didn't like the idea of being an hour away so I went home alone. This was OK with me.

The next day (Wednesday the 11th) I puttered around my house, doing things I could do since there was literally NOTHING I could do at the hospital. I called for an update, but there was nothing to report. My MIL drove my kids home in the late afternoon and we decided to go check on Mark and see if we could find out what comes next. We were told they would start warming him back to normal body temperature early the following morning (around 4:00 AM) and then perhaps cut back on the sedation and see if he wakes up, and if he does, how he is. They would be testing his brain function with an EEG at some point as well.

My MIL, kids and I talked and decided to go back to the hospital around 8:00 Thursday morning. I wasn't sure if Camryn and AJ really needed to be there too, but they both wanted to, and it turned out to be the right thing.

We asked for Mark's nurse when we got there and were greeted kind of briskly by her as she explained she had just spent a lot of time with Mark and now needed to attend to her other patient. She promised to be back to speak with us as soon as she could. I noticed that Mark felt warmer to the touch, but his legs were still uncovered and felt cold, so I asked if we could put a blanket on them. She said, "No, sorry, that's not gonna happen. It's part of temperature control."

Oh. OK then.

Andrea did return and set about explaining where things were at with Mark. She was much easier to communicate with now, and we warmed to her particular brand of bedside manner. Mark's mother asked if anyone had formed a prognosis. Andrea answered us very honestly about how sick Mark was, and that IF he recovered from this, it would be very difficult and he may never be able to return home. She explained that he was "riding the ventilator", meaning it was doing all of his breathing for him when sometimes a patient does take a few of their own breaths.

We then touched on the subject of withdrawing treatment (how would we know if that was necessary, and when?). Andrea validated what we -- the adults, at least -- were already thinking: that this might be it. That maybe he was actually already gone, only "alive" because of life support. She cited her experience in cases like Mark's. This turn of events was most definitely a very bad thing.

As we walked back to the waiting area, my MIL stopped me. She said that she didn't want to overly influence any decision I made, but she really did feel it was time to let him go. I told her I agreed. She and I were both very relieved to know we were on the same page. Mark's sister felt the same. Now I just needed to talk to my children.

They didn't understand at first. Even though I have always been very honest with them about their dad's condition, they didn't want to accept that it was his time to go. They asked why and cried. They asked for just one more day, and when I said I didn't think he had one more day, they cried some more. I gave them space, and I checked in with them. My daughter's boyfriend arrived to support her. I will forever be grateful to that boy.

By this time, everyone was on their way to either see Mark or stay and support us. They had warmed him back up and cut back on the sedation a bit, but they couldn't cut back on anything else or he'd get worse.  I found Andrea and told her that I thought it would be best to withdraw treatment, but we wanted to wait for Mark's dad to arrive. She said she would tell the attending physician, who later found us and spoke to us about the decision, confirming that he thought it was for the best as well.

We waited at the hospital all day long. Family arrived and friends filtered in and out. I kept having little talks with my kids; as much as they could handle. Once, I went into Mark's room to sit with him. After a little while, AJ found me and sat too. He then started crying and talking to me. He said he hated seeing his dad suffer and he had to come to terms with letting him go. I grabbed him and squeezed him tight! My ten-year-old little boy was processing and making sense of this terrible thing happening in his life and I was so proud.

When Mark's dad arrived I left him alone with Mark, and Andrea pulled me and the kids into a private room to talk to us about what was going to happen. My dad and my friend were in the room with us too. She explained to the kids that it was a good thing their grandpa had arrived when he did because their dad was getting sicker in the last hour and she was worried his heart might stop again. She said his body couldn't handle anymore. And then she gave us two gifts. She had made Mark's handprint on a card, and printed out his heart rhythm and put the paper in a little jar.


This nurse who I at first thought was kind of stand-off-ish, turned out to be my favorite person in the world in that moment in that little room. I will never forget what she did for my kids.

We stayed in the little room until we could pull ourselves together, and then my friend told Andrea we were ready. She had us wait by the nurse's station while she removed unnecessary machines from the room, made Mark look as much like himself as possible and removed the breathing tube. She waved us in and we hurried to his side.

Andrea had put chairs on both sides of the bed. My son sat on Mark's left, my daughter on his right. I knelt down near AJ and placed my hand on Mark's chest. I could feel his heart beating, but could not feel that he was breathing; I don't think he was. My son felt his heartbeat too, as well as my MIL. I think several people took turns touching their hands to Mark's chest.

My hand stayed the longest, and I felt his heart beat steadily slow and stop. It was only a few minutes. It was quick and peaceful.

***

Officially, my husband passed away around 6:00 PM on Thursday, May 12, 2016. However, we feel that he really died here at home, just like he hoped he would.

There was a time when I (and everyone else who knew him) thought Mark would leave this world kicking and screaming. He was the toughest fighter I've ever known. But he had done a lot of work toward coming to terms with his fate. In the weeks leading up to his death, he and I had talked and talked about where he was, how he felt about things, and what he thought should and would happen.

He thought he would like to spend another summer with us, but not another winter. We talked about voluntarily stopping dialysis just before his birthday (November 7th), but he also didn't really want to have to make that decision. He called everyone he cared about and told them of these plans. He asked me what I thought his service would be like. I told him what I saw in my head and he thought it sounded nice.

All of this put together makes me feel that somewhere inside he knew. We had these very important conversations, he said things he needed to say....and then his heart stopped. Mark had made peace and was done fighting.

May 16, 2016

My Husband's Obituary

As many of you may have heard by now, my husband, Mark, passed away.

He suffered cardiac arrest and although medical professionals were able to restart his heart and keep him alive with meds and machines, it was ultimately his time to go.

Mark died quickly and peacefully just before 6:00 PM on May 12, 2016.

There is much more I would like to say, and probably will, but for now, I just want to share the obituary I wrote.


April 21, 2016

How My Husband is Doing This Spring


Hello there.

The last detailed update about the state of my husband's chronic health problems was about two and a half months ago. There have been a few changes.

We now have another condition to add to the list: low thyroid (most likely due to taking the anti-arrhythmia medication, Amiodarone). This news actually gave us a little hope because Mark can take another medication to bring his thyroid level back up, and maybe that would help how he feels overall.

Since seeing his Endocrinologist, Mark's dosage of Levothyroxine has been upped twice. It has taken many weeks, but he is a bit less tired and bit more hungry.

One step forward....

April 5, 2016

A Funny Thing Happened

I am in an odd place.

A hard to explain place.

I think I've said that a lot over the past year or so. But now it's, like, more.

For the last three weeks, I have been thinking and noodling and pondering just what is going on with me. Where am I at? What do I want to say? Do I have anything to say?

That last question is the most important because you see, I recently read something another blogger wrote in which she was giving new blogger advice. One piece jumped out at me and I have been chewing on it ever since. She said to write what you want to read.

March 14, 2016

Alone in the Village

There are many doctors (and their nurses or assistants) involved in my husband's health care.

An entire team including a nephrologist, technician, RN and dietician at the dialysis clinic.

A palliative care nurse.

Home health nurses who change dressings and check vitals a few times a week.

A paid caregiver provided by the state who helps with some housework, appointments and other errands, and helps Mark get a good shower every week.

Then there's me.

March 2, 2016

I'm Less Important Than Everyone Else


I have always felt like my needs/wants/desires have been less important than anyone else's.

No, really.

Kind of odd for an only child, wouldn't you say? (Only children are generally characterized as a bit on the "it's all about me" side.)

Marrying the man I did doesn't help.

February 27, 2016

Forcing Thankful

I've been in the downy-dumps most of this week, despite trying thing after thing to raise my spirits.

It hasn't been all terrible-awful, but definitely a whole lot of blah and meh. And sigh. And maybe some ugh.

One thing -- on top of the other many things -- which has been weighing on me is that my husband has had C. diff since (at least) sometime after his last round of antibiotics began the week of our son's birthday last month.

February 22, 2016

Losing Myself

I feel like I'm losing who I had been becoming before my husband got so much sicker.

I was an insecure young adult. I met Mark when I was 20 years old and was that clingy girlfriend. In my defense, I had recently become visually impaired and had just left home. Also, my inner child.

Marriage, babies, my 30s, blogging, and some therapy later, I felt like I was finally coming into my own. I felt I had gotten to know myself pretty well. Just Jennifer (my former blog name). The Me I am aside from The Carer of All Things.

Besides WifeMomCaregiver, I am someone who likes to write a blog, make things with yarn, go for walks, watch TV, listen to books and hang out with friends.