Time is an Illusion. Advance Directives are Not

I think it’s important for me to write about this, even if I don’t really want to. It will most likely be the last blog post I write about my family’s personal situation. But I hope that it will help someone.

It’s been a year already since we lost Eric. He is missed. Terribly. There are no words to describe it. This day and every single day. His silence is excruciatingly loud, especially this time of year. But that’s not what this post is about.

Early on in his struggle in coming to terms with his diagnosis, he stated in internal pain and frustration: “Now I’m just going to be some pathetic post on Facebook about being missed or dying too young!”

So, I will do what I can to ensure that his memory is never “just a Facebook post,” and instead, attempt to tie his remembrance to something productive (his hallmark personality trait – no one was quite as productive as my husband).

Without violating his privacy, I am going to share a few carefully selected pieces of his story. I’m sure he would have been okay with this. I’ll share these few pieces honestly…with the hopes that someone who reads this will go out and begin the process of completing an Advance Directive and Health Care Power of Attorney. I believe it’s an inherent responsibility, as a surviving spouse, to provide a testimony to the necessity of having your healthcare ducks in a row at End of Life.

IMG_0718.jpgAnd these documents should not be decided only at End of Life…but also while you’re fully living your life…oblivious to the impending doom that might come to you and/or your loved one…at any moment.

No one wants to deal with this and certainly no one wants confront any part of it. We joke about Wills and leaving people out of them or flippantly opine about how we’d never want to have a catheter put in as we lay unconscious in a bed. It’s understandable. We make light of…or avoid altogether…what is so unfathomable…because we can’t face it. And it doesn’t matter how old we are. These conversations are never comfortable.

But I’m telling you. They need to be had. 

So, just pick a day, suck it up, have the conversation and fill out the paperwork. Then put it in a safe place for the just-in-case.

According to the calendar, that illusion of time upon which we all build our lives, it’s been a whole year since my husband’s body gave up and gave out from the horrendous cancer that invaded his colon…and then his liver…and took away his vibrant, happy, and “productive” life. By September 29th of last year, whatever life force was still left inside of him, got up and walked out our front door at 4:23 PM. I swear on my life that our dog Stretch watched him go. His death certificate, memorial plates and obituary lists his date of passing as September 29th, 2016. But he was really not there anymore by September 26th; his once exceptionally gifted brain had been overcome with the harsh results of a second stoke event, which became the ugly exclamation point to his (and by extension,  our) tragedy. But he, at least, is no longer suffering.

Eric was not “supposed” to die at the end of September. He was “supposed” to die between December and February, per his doctor’s prognosis and “the averages” of others with his particular cancer. I can’t believe I can even type that out…”supposed to die.” He was “supposed” to make it to a Patriots game at Gillette Stadium on September 22nd, a trip to Puerto Rico on October 6th, the Steelers  vs. Patriots game at Heinz Field on October 23rd…where he’d see Tom Brady play in person for the last time, his youngest daughter’s 20th birthday on IMG_5285.jpgOctober 8th, his mother’s birthday on October 4th, my birthday on November 12th, Thanksgiving and Christmas…and then maybe the year 2017…and if we were lucky – or not, depending on how bad things were at the time – even his own 48th birthday on February 3rd. In hindsight, he probably would’ve willed himself to see Super Bowl Sunday just to witness that incredible comeback and game…had the unpredicted and unexpected strokes not happened way out in the Pacific Northwest.

Whenever life handed Eric a challenge, he usually exceeded the standards in some way. That was how his life had gone up until his diagnosis. There was nothing “average” about him. Just in other ways he lived his life, I figured that he’d either “exceed the standard” by dying quicker than the “averages”…or “exceed the standard” by living for ten times the expected  projections. In this case, it would be the former. And it’s hard to know, in hindsight, which was truly preferable to him. He desperately wanted to live – but he did not want to live like that.

In the early morning hours of September 16th, we awoke to catch a plane from Seattle back home from an End of Life type of trip. We had just spent a very difficult week in Alaska and British Columbia trying to see things like glaciers and whales. He was in constant pain and always exhausted; he spent most of the time we had in bed and he was not really savoring or enjoying the few good meals he tried to eat. While helping him with his shoes on that last morning, I discovered that he could not talk. He wouldn’t respond to me. At first, I wasn’t sure if he was just not answering me because he was tired and in pain, but soon I realized that he couldn’t utter even a sound. He up looked at me, threw up his hands, and literally could not respond to my questions.

Later that day and after testing, we learned that he suffered four small strokes at some point during the night, and one of them had knocked out his speech. It’s called “expressive aphasia.” He would try to speak, but what came out did not make sense. This was extremely frustrating for him (and those of us trying to understand him). He could not write either. He would try, but it looked like scribbling. He looked up as if we should have been able to understand what he wrote. If I asked him to point out the letters to spell out his name, which is giving him the answer, he could do that just fine. However, if I asked him what he wanted, which is what he knew and I didn’t know, he would point to random letters and they made no sense. For example, if he wanted water, he might point at the letters “eopcv” and then not understand why I couldn’t get “water” out that.

Eric and I have both always been blown away by the mysteries and complexities of the brain…but this was a different level for me. Seeing something like this happen to an a high IQ, rational, logical, science-minded man is both humbling and sobering in how much we don’t know about the brain, how little control we have over anything, and how little it takes to alter it so drastically.

His doctors in Seattle looked to me to speak for him. Because he was very much aware of his pain or what he wanted and needed, but had so much difficulty expressing it, I was the one who had to make the call on everything health related. One of his doctors said to me early on, “You have to make the decisions. He looks confused to me.”

If this doctor knew Eric at all, he would’ve realized that he was just pissed off we were missing our flight back home and probably thought that I was overreacting (to his four strokes) by bringing him to a Seattle ER. Eric did not know, until late following night, exactly what happened to him. When I explained it to him, he just sat there with his head in his hands, clearly comprehending the magnitude of yet another horrible curve ball thrown at him by this continual nightmare.

But I knew that I couldn’t stick him on a plane like that. If he died in the air, or the stroke became exponentially worse due to the change in air pressure, paralyzing him, all while I had suspected a stroke…how the hell would I live with that? Putting the other couple hundred passengers at risk by having to make an emergency landing somewhere in the middle of the country? Not getting him home safely and alive to our girls, his parents, his sisters?

Eric wouldn’t have put me on a plane like that. I know that. But it’s hard not to question yourself, ad nauseam, when you’re making decisions for someone else’s well-being, and in his case, his very life – what little he had left of it, anyway.

I had to approve of the MRI, which diagnosed tIMG_7074.JPGhe “event” that caused the strokes. I had to approve of his day-to-day care. The medications to help him rest his brain and keep him calm. The blood thinner regimen recommendation that was an unorthodox treatment and was taking a bit of a risk. I had to approve of the flight nurse who would accompany us back to North Carolina, complete with an oxygen tank, as soon as he showed that he was tolerating his blood thinner regimen with no further bleeding.

Basically, I had to trust in a medical system that did nothing but fail him since November 2015…to not fail him this time.

All I wanted to do was get him home.

I was not going to let him die out there in that God forsaken miserable city (never need to go back there), and because further strokes were such a high possibility, that was my greatest fear. I was ill-prepared in every way to make these decisions because never in a million years had this scenario played out in my overwhelmed “caretaker” head. This was not anything I had before rehearsed in my mind. But the truth is, there is no rehearsal for this kind of thing.

I had previously thought about blood clot issues just because he had clotting already diagnosed in his leg. But I’m not a medical person. I was kind of prepared for all the illness-related progressions and medication side-effect BS along the path his cancer would take…according to everything I studied, researched, read and was explained to me by his doctor. A stroke? Multiple strokes? I don’t know what that looks like. I’ve never seen one. All I knew was that if a person can’t speak…that’s a stroke symptom.

Like many people, I was just a lost soul desperately trying to balance the enormous amount of trust bequeathed to me by him to take care of him in these last months, all while helping him live out some of his last wishes while he could. I was running on my instincts and fumes, consumed with the emotional exhaustion of this entire situation…believing that if it were me in the bed with the strokes, Eric IMG_3853.jpgwould’ve made the same decisions. He would have done what he had to do to get me home to my family.

Once the flight nurse, his sister (who so generously came out to Seattle to help us), and I got him back home across the country five days after the stroke event, we had hope that he’d bounce back a bit with some rest, maybe enough to resume the things he wanted to do. While in the hospital, his speech improved somewhat, as long as he remained calm and spoke slowly. We started to understand some of what he wanted or needed. (Everyone understood the F word with no problem.) But after a few days of being at home, he just started to stagnate in his recovery from the strokes, and sometime during the early morning hours of September 26th, he had another one that took out the rest of any fight he had left in him. He, however, never gave up. His body did. Eric himself was never defeated by this monster because what made him…Eric…was not his body. He would never regain real consciousness and instead began his final decline.

None of us were expecting this or were prepared – mentally, emotionally, physically – for him to go. It was too soon. We still had things to do and see. Of course, it would’ve always been too soon to lose him.

In early July 2016 during a routine chemo treatment at UNC, Eric filled out his Advance Directive. I had to leave the room at some point because he was signing off on this morbid paperwork IMG_5331.jpgand describing what he wanted done with his organs, his body, and how to deal with him if he is ever in a vegetative state. It was very difficult to see it.

Under different circumstances, it wouldn’t have bothered me so much. After all, this is what responsible adults do. They do this paperwork, so in the event of an accident or premature death, the family knows the wishes. This was hard for me in this particular situation because he was already dying, and filling out this paperwork meant that it was true and it was imminent. It was happening and it was happening sooner rather than “some day” when we’re old. It was just yet another “thing” that twisted the knife in our backs from this horrid bitch called Life. There were many similar “things” like it along the way, and since he’s been gone, I am reminded almost daily of just how many “things” there are out there that continue to twist that knife.

Unlike most people, he filled out and signed off on his Advance Directive because he was actually dying. He had advanced notice. If there is any upside to terminal illness, (and let’s be honest…there’s NOT an upside AT ALL), it’s that you have the opportunity to get your End of Life ducks in a row. He was of sound mind and could make these decisions, so when the time came, I did not have to…and then beat myself up for the rest of my life wondering if I made the right decisions…if I made him suffer even more, if I made choices that ultimately killed him or took away precious time from him. At least, I did not have to guess or try to figure out what he wanted or attempt to remember a long-ago marital conversation…all while trying to contend with the magnitude of what has happened to him.

His wishes for End of Life were in black and white, signed by two witnesses and a notary. It was prepared by an attorney. So when I was actually questioned by someone, during the final few days, about why he was not receiving nutrition, the answer was simple: “Eric did not want to be artificially fed.” Those were HIS wishes. They had nothing to do with me. My part in his final wishes were only that he trusted me to carry them out. That is a heavy responsibility to hold. You don’t know just how heavy it is until you’re actually cradling it in your hands. But when you’re married, it’s part of what you signed on for.

The point of this depressing post is to spell out just how important these documents are to not just your loved ones being left behind…but mostly to YOU in End of Life. These documents are ultimately for you and your dignity. If you don’t want to donate your organs, you don’t have to and you can make that known on this form. If you don’t want to be in-tubated for hydration and nutrition, to slow down the inevitable, thIMG_2629.jpgen you don’t have to be. If you want to put limitations on when to keep you alive and when not to…you get to have it written out…by YOU. You can even put the directions for the disposition of your remains and final resting place, just so it’s clear to everyone. So when families start infighting, like families do, there’s a legal document backing you up (and backing up your spouse or other responsible loved one) when you’re not here anymore to speak for yourself.

Unless you commit suicide, you do not have control over your death. And even then, sometimes, you don’t have much control. It’s going to happen on nature’s terms. Whether it’s a tree that ultimately gets you as you drive your car on a dark and stormy night or an incurable cancer that shuts down your organs one by one or a heart that gives out suddenly because of an undiagnosed hole, death comes for everyone. And it doesn’t care if you’re a small child or an old man who lived many lifetimes. We adults need these documents in place – regardless of life stage and age – to ensure that we have control over whatever we can. Even if your lungs are still breathing and your heart is still beating, you might not be “there” to tell anyone what to do. So do it ahead of time. Take control of your own body. Have this conversation.

If you are elderly, you should already have these things in place. If you’re middle-aged or a just a young parent, have this paperwork completed. Stop thinking you have time. It’s an illusion. You never know what nightmares will come, either to you or to someone you love. Help them help you in your darkest hours. Just like all the different kinds of insurance we buy in our lifetime, hopefully, you won’t have to use your Advance Directive. But it’s there if you do need it.

A couple of weeks ago, a woman at work fell out during a presentation. CPR had to be administered. She died. The story goes that she got up and ran in the morning, went to work, came to this meeting to present her information to the group, and then something happened with her heart and she died. Just like that. She was 55 years old. If she knew that was her last day on Earth, I wonder if she would’ve gone out for a run and then gone to work. Somehow, I doubt it. She probably didn’t know that she was out of time…because time is an illusion.

Advance Directives, however, are not.

Talk to your family members about your End of Life wishes. Do something about them while you can.

IMG_5759.jpg

Oh, and lastly…don’t take your own life, your marriage, your children for granted. I’d do anything to have my husband back here with us, where he belongs. We love you and miss you, Eric, wherever you are.  

Click here to read Eric’s Memorial Article, recently published in TAPS Magazine from the West Point Association of Graduates.

Click here to support the Eric DeJong Memorial Fund at the Gary Sinise Foundation, providing smart adaptable homes to severely wounded veterans. 

Click here to download your state’s Advance Directive Forms. Then go fill them out.

Thanks for reading,

– Dori


3 thoughts on “Time is an Illusion. Advance Directives are Not

  1. Thanks for sharing your story. And thanks for giving all of us this helpful and important information that many of us put off or push aside thinking it’s not needed right now. Your writing continues to inspire me. Much love and big hugs to you and your girls. – Heather

    Like

  2. Never-ending heartbreak, Dori, I’m sure. One year already. Oi.
    And thanks for the information. I think Monica and I have all our ducks in a row (we sat down with an attorney awhile back) but we’ll have to revisit. Hugs to you and your girls.

    Like

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