When we expect to die, but don’t

by Carolyn Thomas      @HeartSisters

Shortly after I was freshly diagnosed with coronary microvascular disease (MVD), one of my readers told me that, for the past 12 years, she too had been living with MVD after surviving her own “widow maker heart attack”, just as I had.  Immediately picturing the future prospect of somehow coping with ongoing bouts of exhaustion, shortness of breath and debilitating chest pain, my surprising gut reaction was:

“12 years!?  TWELVE YEARS?!?!?!  I can’t do this!”

Well, Happy Heart-iversary to me: on May 6th this week, exactly 13 years have passed since my initially misdiagnosed heart attack was finally correctly diagnosed and appropriately treated, but even more amazing to me, I’ve now lived with MVD for 12 of those 13 years.     .      .    

A date that had seemed utterly impossible to envision when that reader wrote to me had somehow come to to pass. Twelve years. I am still alive. And I’m moderately shocked to be here writing this.

From the time I was discharged from the CCU in May 2008 (the intensive care unit for heart patients), I have carried within me a sense of profound certainty. I felt certain that I would die. Probably soon. Most likely, tonight in my sleep.

Each evening at bedtime, I tidied the apartment, bundled up the recycling, cleared the countertops and wiped down the bathroom. I knew that if tonight was The Night, I’d want whoever discovered my corpse tomorrow to find it in a nice clean home.  This bleak ritual went on for weeks, or maybe it was months, day after day, preparing for my own death.  (The upside: the place had never looked so good!) 

I didn’t ever mention this certainty to anybody at the time because I didn’t want to scare people.  I didn’t feel afraid. I just felt resigned to my impending fate. I kept putting one foot in front of the other, quietly trying to make sense out of something that made no sense. As I wrote last week in When Heart Disease Wears a Smile, I knew that my entire family had been through so much dealing with the shocking news of my heart attack. I didn’t want to worry them further by appearing anything but fine, just fine. . .  I can’t recall when I stopped this daily tidying ritual, but I suspect that it was when I was subsequently diagnosed with MVD and its associated bouts of crushing fatigue that worsened as each day wore on. And by then, I’d also noticed that I hadn’t actually died yet – despite my certainty that death was imminent.

Cardiac psychologist and multiple-heart attack survivor Dr. Stephen Parker once described a unique symptom of Post Traumatic Stress Disorder (which turns out to be shockingly common among recently diagnosed heart patients). The PTSD symptom he described is called a sense of a foreshortened future. In other words, after a traumatic event – in this case, a heart attack – the patient “’no longer expects to have a career, marriage, children or a normal life span.”  I instantly identified with Dr. Steve’s own story:

“Three months after the heart attack, I went to Home Depot to buy something for the house. I walked inside, saw the plethora of nice things to make a nice house, and started feeling extremely depressed.

“What was the point?  I knew I was going to die within a short time.  

“I walked out without buying anything. I could hear a critical voice in my head repeating: ‘Get over it.’ But I could no more get over it at that point than I could fly to the moon. (Which is about where my mind and soul were hanging out). There is nothing like the sense of a foreshortened future to un-motivate behavior.”

Don’t get me wrong, my heart sisters:  I’m not considering doing anything to speed up my inevitable departure from this earth.  But having spent 10 years watching a brilliant friend dying on the installment plan in a longterm care bed, incapacitated and helpless after a medical crisis, I can tell you flat out that this scenario is not for me. I’ve completed my Advance Directives and shared them with my family, my will is updated, and my Emergency Scope of Treatment documents have been reviewed with my family doctor.

What I learned during a decade of visiting my friend was that there are worse things than death.

My dear friend could have never predicted her own fate after a long and adventurous life, from studying at the Sorbonne in Paris during the German occupation to making friends with an American war correspondent named Ernest Hemingway. Long before her near-fatal crisis, she’d been a keen student of Canadian history, ballroom dancing, story telling, Qi Gong and so much more – well into her senior years.

I’m not afraid of dying. I’ve lived a remarkable life. There’s nothing on my bucket list” left undone (and I don’t embrace or recommend bucket lists anyway).  What I am afraid of is ending up like my friend – trapped in a body or a mind that no longer functions, while waiting helplessly for somebody to do a diaper change.  She had been heroically rescued and resuscitated during her medical crisis after collapsing at home one morning, but many times during the following 10 years of our visits, she would tearfully whisper to me, “Every day, I wish they’d never found me in time to save me. . .” 

I worked for many years in hospice palliative care, where my colleagues and I used to talk openly about death, and specifically about our own mortality. Because one of the biggest risk factors for a heart attack is having already had one, I believe that, if the statisticians are correct, my ongoing cardiovascular disease will likely be the thing that kills me. Although heart disease is the #1 killer of women, having a misdiagnosed “widow maker” heart attack didn’t kill me in 2008. (My cardiologist suspects my 19 years as a distance runner helped me dodge that fate, thanks to my collateral arteries  – what doctors call “do-it-yourself bypass surgery.”) And my subsequent diagnosis of MVD hasn’t killed me. Yet.

Of course, I could also get hit by a bus tomorrow, thus thwarting the grim reaper’s plans. The moral, of course, is always the same: don’t leave words unsaid, wounds unhealed, or important things undone.

As our parish priest told my family after my Dad, a non-smoker, died of lung cancer at the age of 62, “None of us is getting out of here alive.”

New Jersey oncologist Dr. James Salwitz endorses that reality, too. He once wrote a compelling essay in response to an editorial in Lancet Oncology.(1)  The medical journal’s editorial reported that during the 10 years between 2000 and 2010, “many new cancer drugs produced marginal extensions in survival and simultaneously increased risk of treatment-associated death and side effects.”   These stats compelled Dr. Salwitz to write:   

“A hundred years ago, the medical model was one of acute disease and trauma.  The major events that threatened life were infection such as syphilis and tuberculosis, childbirth and accidents. Chronic illness was rare because we did not live long enough, as the average lifespan in 1900 was 47 years.  Medical science therefore focused on measures to prevent and treat infections, make birth safer, and treat serious injury.  This resulted in the rapid rise in life span to 70 years by 1950.

“Then the model of illness changed to that of extended diseases such as heart disease, dementia, diabetes and cancer, and research focused NOT on preventing these illnesses, but on treating their effects.

“This is a chronic illness approach where large numbers of patients spend the last years of their lives debilitated while receiving increasingly toxic and expensive therapy to draw out functionally limited lives. But this has increased survival only six or seven more years.”

Dr. Salwitz prefers what he calls a modification of the present life-disease cycle, which, instead of focusing on deterioration in the last years of life, targets the prevention of disease during healthy youth. 

“In other words: live a healthy life to, say, 90 – and then die quickly. Theoretically, this would produce a net longer lifespan and a higher functioning level with less suffering.”

I don’t know about the rest of you, but I’m drawn to this care model. 

As a person living with a chronic and progressive illness, however, I suspect that, as Dr. Salwitz realistically predicts, I will continue to be “debilitated while receiving increasingly toxic and expensive therapy” in order to draw out my “functionally limited” life.  Depressing, right?  With each passing birthday, I notice yet another sign of that limited functionality that has nothing to do with being a heart patient. Last month’s birthday introduced me to something brand new:  longstanding arthritis in my hands (now suddenly visible in my swollen knuckles) makes it impossible to open the child-proof pill bottles that my cardiac meds come in.

And here’s where that fear of a foreshortened future kicks in on overdrive: if I can’t even open my pill bottles anymore, what else lies ahead for me? Will I be able to lift the heavy watering can in my balcony garden? Pick up my grandkids? Lace up my own running shoes? Who could have guessed that it would be my FINGERS – and not my heart! – that kick off this sudden functional decline?

Meanwhile, for most of us – no matter what our specific diagnosis may be – I suspect that it’s simply a one-day-at-a-time regimen of taking our meds, fitting in exercise, meal-planning, talking to family and friends, resting when we need to, juggling medical appointments and learning to appreciate each sunrise for as many sunrises as we have left.

 

1. “First Do No Harm: Counting the Cost of Chasing Drug Efficacy.” The Lancet Oncology, Volume 13, Issue 9, Page 849, September 2012.

Image: Jggrz at Pixabay

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Q:  Has your own diagnosis made you contemplate your own mortality lately?

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NOTE FROM CAROLYN:   I wrote much more about making peace with your heart condition in Chapter 10 of my book, A Woman’s Guide to Living with Heart Disease” , published by Johns Hopkins University Press.  You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher (use their code HTWN to save 20% off the list price of my book)

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See also:

Coronary Microvascular Disease: a “trash basket” diagnosis?

-Deep thoughts about death and heart disease

Why you must stop saying “Well, at least. . .”

Do you think too much? How ruminating hurts your heart

Do you want the truth, or do you want “Fine, thank you”?

Live to 100? No, Thanks!

 

13 thoughts on “When we expect to die, but don’t

  1. I think I have more fear of the unknown than of death itself — how and when will it come, both to me and to my loved ones? Will I outlive my husband and have to face life alone? Or will I go first and leave him to the rest of his life being unable to remember where he left his coffee cup in the mornings? LOL

    So many little things to consider in planning for our deaths. I’m so grateful that my husband and I finally did our wills and health care proxy forms last month. And it was very hard — no wonder we put it off so long. We still have to have some hard conversations with our kids about our wishes.

    My mother-in-law just confessed to us in a tearful moment during our Mother’s Day lunch that she had told a friend of hers that she wishes she were dead. She is 80, a widow of 13 years now, and her health is failing; she can hardly walk anymore. She lives alone (because quite frankly none of us can live with her, she is kind of difficult at times) and life is hard for her.

    That comment scared my 35yo oldest son a lot. He is worrying about her and about his dad and me, watching us all deal with health issues and getting older, wondering how he will cope without us someday (he is single and lives with us right now). He even worries about how we will all cope when our beloved dog dies.

    I feel bad that he has so much anxiety about all this. He says whenever he goes out to help Mom, he is afraid that he will be the one who will find her passed away. What a lot of stress for him to worry about this. But it could be a reality.

    Waiting for the inevitable is hardest of all. When my father-in-law had ALS and hung on for two years past what the doctors said, we answered every phone call from Mom wondering if this would be THAT call. It’s a terrible mixture of dread and hope at the same time, because you don’t want to hear that someone you love has died but you also hope that his or her suffering is finally over.

    I’m glad you’ve made it through those 12 years so far, Carolyn. So sorry about the arthritis, I have that too but mostly in my thumbs. I wanted to share that at our pharmacy you can request non-childproof caps on your medicine bottles — you should ask your pharmacist about that. But save a few of them as extras because sometimes they do forget and use the safety caps anyway. Hope this helps!

    Liked by 1 person

    1. Hi Meghan – I had to laugh at the prospect of your hubby spending the rest of his life wondering about that missing coffee cup. As a person who regularly wonders aloud, “Now where did I leave that _____?” (fill in the blank!) I can identify with him!

      I can also identify with your mother-in-law’s perspective. Sounds like she has a realistic view of her own declining situation, and knows that things will only get harder as time goes by. When an elderly person is ill or in pain or lonely (or “difficult”), there isn’t a lot to look forward to in life with any true sense of hopefulness. In my experience working in end-of-life care, it’s tempting for family members to say to a relative who wishes out loud that they were dead: “Oh Mum, don’t talk that way…” – usually more from their own sense of discomfort than anything else.

      I can also relate to that sense of both dread and hope around getting THAT phonecall. When my grandmother was dying, my Dad would get frantic midldle-of-the-night long distance calls from his sibs, basically saying: “Come quickly! She may not make it another day!” My Dad would grab the first flight out and rush to his mother’s bedside along with his 6 brothers and sisters who all gathered around for her final breaths. But she would inevitably rally unexpectedly. After a couple days of her improving condition, my Dad had to get back home. A few months later, another frantic call “”Come quickly!” This happened every few months for a full year – until one day he got the final call that said “She died last night.” We often wondered if perhaps she had perked up because all seven of her grown kids were suddenly surrounding her!?

      Re arthritis: mine started in my thumbs too! And YES I did ask the pharmacist to make a note in my file for the non-childproof caps. Good suggestion about saving those now-valuable pill bottles – just in case!
      Take care, stay safe . . . ♥

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      1. Yes, we all lose things, but I rescue my hubby all the time — my house is messy but I almost always know where everything is. One morning he literally stood in front of me saying “I can’t find my coffee” — which he was holding right there in his hand! LOL I worry about him sometimes . . .

        My MIL does have a realistic perspective on the end of her life. She knows exactly what she wants as and after she passes. She is strong-willed and stubborn, which is no doubt why she has outlived Dad and all her 13 siblings, but it is depressing for her, and we all understand that, although her comment caught us off guard.

        How frustrating it must have been for your dad! We didn’t fly back and forth a lot, but when Dad was diagnosed and beginning to fail from ALS, our whole family made a Christmas trip by van from NY to FL to be with them for what we thought was his last holiday. Then, as I said, he hung on for 2 more years. At the end, when we did get THAT call, my husband and daughter (the apple of his eye) were able to fly down (while I stayed with the aforementioned dog that we had just adopted less than a week before). They visited with Dad for an hour in the hospital and then left to get lunch. Right after they left, while he was with Mom, he passed. We really think he was hanging on until he could see his son and granddaughter one last time. It’s interesting that people can do that.

        And actually, apparently even dogs can. Another funny story — my daughter works for a woman whose 15yo dog was at the point of dying, so they called in a dog hospice person to come be with him (yes, this is a real thing). The hospice person walked in the door and the dog immediately jumped up from his deathbed and was absolutely fine! Died a couple of years later.

        Take care and stay safe Carolyn! Take time today to count the blessings in your life and just enjoy living.

        Liked by 1 person

        1. That’s great advice, Meghan – count your blessings and just enjoy living.

          When I worked in hospice palliative care, we frequently witnessed this phenomenon of our patients “choosing” their time of death. Family members felt terribly guilty if they weren’t there at the exact moment of death, but this happened so frequently, we started suspecting that perhaps the dying person was actually waiting for these people to finally leave the room!

          When she was dying, my mother-in-law was surrounded by her kids and in-laws and two grandkids (my own children) who had been sitting vigil at her bedside for days while she was unconscious. One of her sons kept desperately urging her to “Hang on, Mum! Hang on!!” When the whole family, except my daughter, finally decided to go across the street to get something to eat, she opened her eyes widely for the first time in days while Larissa was braiding her hair, took one last big breath – and died quietly. Just the two of them.

          Larissa felt that her Grandma had “chosen” her to be the one sitting quietly with her during those last moments, a profoundly meaningful time for her. I like to think that might be true. . .

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  2. For me, this is one of your best musings. It rang so many bells.

    I have lived with stents (12 now) for sixteen years. Had one heart attack (the last stents) and nothing for the past six years.

    When I turned 80, I think I was more surprised than anyone, especially since I also have Type 1 Diabetes. Alzheimer’s disease runs rampant in my family, and I am counting on my heart to save me from that.

    So, these days, I live perpetually surprised.

    Liked by 1 person

    1. Oh, Pauline! That is exactly what I was trying to say, too: “Perpetually surprised!” A perfect description of how I’m feeling these days. I think I’ve been surprised for 13 straight years. I often think that I live with the kind of symptoms (especially chest pain) that would send most regular people straight to Emergency, yet somehow I’ve learned to manage and function despite that pain.

      I like to think I’d know the difference between “normal” awful pain and “abnormal” awful pain that needs a 911 call!

      Take care, stay safe out there. . . ♥

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    2. I’m 7 years out from my heart attack and was diagnosed with microvascular disease six months ago. This post really resonated with me. Thank you!

      I am inspired by my dad, who was one of the first successful heart attack revivals by defibrillator and lived 20 years with no stents, as they weren’t available.

      Liked by 1 person

      1. Hello Dawn – your Dad was one of those pioneer patients! No wonder you’re inspired. I hope you’re able to manage your MVD symptoms better as time goes by. Best of luck to you – take care, and stay safe. . . ♥

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  3. I have contemplated my own mortality on purpose for many years because accepting our own mortality is paramount to understanding our true existence as an eternal Spiritual Being.

    Like you, I recently watched a friend of 25 years spend her last two years bedridden needing total care…. Before she was totally bedridden, she didn’t want anyone to help her except me – a testament to our friendship. It was exhausting and gave me chest pain and shortness of breath, but I did it.

    After several months I heard a voice in my head saying “This is going to kill you if you keep it up.”

    I took that seriously. Was I ready to die early in service to my friend? No, that was not how my life was meant to end, and I told her that she needed to allow other help in her life.

    I’m not afraid to die, but as an RN, having seen more than my share of people surviving heroics in a vegetative state, I would definitely prefer an alternative ending!

    An astrologer in India once said I would live to 85 and die by a sacred river saying my prayers …. that sounds good to me!

    One to a box, no bodies get out of here alive but I have faith that our Spirits take wing and join an unseen part of the Universe.
    Happy Mother’s Day!

    Liked by 1 person

    1. Hello Jill – That story of helping your friend really rang true for me, too, as I wrote about here in my article on scope creep (When NO means Maybe, and Maybe means YES). It’s that reluctance to say NO to somebody who needs help, until the scope of the project becomes so big, it’s overwhelming – and even dangerous to our own health.

      Like you, I heard that voice in my head, but ignored it week after week for YEARS. I knew I had to stop saying: “Of course, I’ll help!”in my case. But every time I opened my mouth to say “NO!”, I just couldn’t do it because I felt so sorry for her.

      I am trying to pay better attention to that voice!! It’s an important part of good self-care.

      I also like that image of you peacefully saying your prayers beside a sacred river – not a bad way to go…

      Take care, stay safe – and happy mother’s day to you too. . . ♥

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  4. Right on, Carolyn! The guy in the black hoodie is standing right behind me and sharpening his scythe but, painful and increasingly limited as life is with ischemic heart disease, he doesn’t seem to be in any hurry to start swinging it.

    Liked by 1 person

    1. That guy in the black hoodie is some kind of creepy image, Sandra! Apparently that Grim Reaper figure w­as born in medieval Europe in post-plague visions of death, clutching his scythe and an hourglass, too, a sure sign when he shows up that your days are numbered. When the sand in the hourglass runs out, your time is up! I don’t much like the black cloak or that big sharp blade imagery, but it’s somehow comforting to believe that when we die, it’s our time to go.

      Take care, stay safe. . . ♥

      Like

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