The Extra Patient

There are two in the solitary sick room.  Between covers, attached to the IV, connected to the monitor, is the woman.  Cancer assaults her body and she lies trapped.  Constant at bedside is her son.  Whether day or night, weekend or day, he is there.  Always with the question, the concern, the anger.

Through weeks of tests, pain and treatment, he is never satisfied. There is always something we are doing wrong.  A test missed or an order delayed.  A false hope gleaned online.  A mirage glimmer from latest consult.  More unsatisfied worry, oft born of denial’s confusion.  The patient in the bed is easy.  The extra in the chair is hard and exhausting.

I am never able to still his worry or answer his want.  Hours spent pour down deepest well.  Even when she is improves, I fail.  He is ever present and never content.

One morning rounds I have an epiphany.  How is it possible that an intelligent, married, middle-aged man is able to alter time to never abandon his mother’s side?  For days he eats, sleeps, and bathes in the hospital.  What has become of his life? I inquire gently.

He quit his job when his mother became ill. A real job, too, making real money, with real responsibility.  A career.  He determined to spend savings, so he could be at her side.  Bonded by loyalty and perhaps guilt, he exists to care for her.  He harvests the love she sowed.  A massive sacrifice, but somehow not one at all.

This morning I have new respect and understanding of this son.  I have a hint of the depth of his giving and perhaps his need.  I am reminded that families suffer together.  My patience is rebuilt. My frustration soothed.  My responsibility made clear.

There are two patients in the room.  They need care.  I will heal both body and soul.


  • Nancie V.
    Hi Jim, Deb sent me the link to this blog and I'm finding much comfort in it. This 'letter' speaks to me, having Mom just go through her lung cancer. She is in remission by the grace of God. A none smoker, we had her have the Cyberknife at 90. Thank you, I appreciate your compassionate insight. This is really the heart of a family your speaking of,.. aways dealing with loved ones choices or life's situations. Trying to keep each other 'safe' and guiding the younger family members on life's path and the happier choices for a smoother journey in their lives. But when illness hits,... you stop breathing! I'm not sure we ever take another breath until we have them 'back' in a 'state of protection',... Or before we will even allow ourselves to take another 'full breath'of relief when they survive the ordeal. Short lived, we don't seem to ever enter that place of 'innocence' again. Normal family life with that loved one no longer exists, and the tight rope walk begins until 'the end'. You learn to 'cope'. Exist within what is now the new status quo filled with stress. While uncertainty moves to a surreal certainty, still nothing can prepare us for the loss. . It is good to hear the other side when you feel unheard among what seems to be the business of emotionally removed staff and the unfriendly, unfamiliar surroundings of a cold sterile facility. And your unsure of the direction your loved ones life will take. Trying to come to terms with the reality and the question, 'Will they leave this place, or are these moment,... so removed from our normal lives, our last moments together?' Breathing is sometime an option.
    • James Salwitz, MD
      The pain we feel when family is ill is deep beyond measure and beyond expectation. There is a place in our soul that is touched by the suffering of one's we love. My thoughts and prayers are with you and your mother. May she continue in health and peace. jcs
  • D Someya Reed
    Substitute “wife” for “mom” and I am that man in that chair. What you’ve said is very good and introspective but made me angry all the same. Not angry at you but at the system…a system that in some ways tries to keep us from getting to you and the care that you can provide. It is unrealistic to expect that you can know the background, in both experience and knowledge, of each person sitting in “that chair.” Much of what that person has experienced supports what you perceive as “anger” (at you) but is based upon frustration after frustration just getting to you. “He is never satisfied…always something we are doing wrong…an order delayed” may actually be based upon real circumstances that may make the “Man in the Chair” even more watchful and anticipatory (of failures). Some of these you may never know about such as (note: these are actual events that occurred to me in a top hospital in our region): Hospital Finance (to Man in Chair): Without insurance you must put up 50% of the cost of surgery in advance before we can even schedule your wife for surgery. Man: How much would 50% be? Finance: We won’t know the amount until after the surgery is completed. Man: Can you give me an amount that I can give you based on a comparable surgery so I can get her scheduled? Finance: No. Every surgery is different. Hospital X-ray technician (to Man in Chair): I’m here to take your wife for an x-ray of her lungs. Man: She’s in isolation for her severely compromised immune system. We all have to suit up to be in here. Can’t you bring the portable here? Technician: No. We’re only taking her across the street to the far end of the clinic building. Man: She’s in isolation for a reason. It’s over 100 degrees outside. You want to put her in a wheelchair, take her down three floors, push her across the street and through an unknown amount of wheezing/coughing people and you think that’s safe? Technician: She’ll be fine. We’re going to put a mask on her. Man in Chair (to Hospital Nurse): My wife has severe anemia and is physically small. I’d like to request that her blood draws be done with pediatric tubes to help keep her blood as iron rich as possible since we know her levels are on the decline. Nurse: We can’t do that. It’s not standard procedure. Man: I understand that but the lab actually uses very little of the blood drawn and throws out most of what they receive. I’ve asked for this in the past and not had a problem when I’ve spoken with the doctor. May I speak with the on-call physician? Nurse: No. He’s too busy to be bothered with something that stupid. Man in Chair (to Hospital Nurse): My wife was admitted to the hospital through the emergency room 4 days ago with an overexpression of ascites to the point where if she were pricked with a pin it appears she might explode. The doctor said she has ovarian cancer and needed immediate surgery 4 days ago. She took the “clean-out” cocktail, has had no food for 4 days and has been throwing up regularly and thrashing in abdominal pain. Each day someone has come in to tell us that the “surgery is at 9am…now 10:15am…now 11am…now 1pm…now 5pm…now, oops looks like we forgot about you, maybe tomorrow.” If she doesn’t get surgery today, she will have to start the fluid cleansing all over again. Can we get a definite time today for her surgery? Nurse: Sir, you’re just going to have to wait your turn...this is a trauma hospital after all. Man: I understand that but your surgical theatres have not been in use round the clock. Please put me through to her doctor. Nurse: I can’t do that. Would you just like me to cancel her surgery? Man: You already knew the answer to that question before you asked it. Now, I must insist that you put me through to her doctor or the hospital General Manager. Note: a gurney for transport to surgery arrived 5 minutes later. Is it any wonder that you would perceive anger? Is it any wonder that the man in the chair might blame you, however unfairly, since all along your staff has been blaming you in a fashion or using your busy schedule as an excuse? Then, some doctors (although none have ever done this to me personally…hospice nurses, yes, but not doctors) might tell you or suggest, that you are in denial? I am sure that every person deep down truly knows that their loved one may die but is it denial or is it optimism that they have in your skill to help them? Is the glass half empty or half full? In many cases the pessimist has already lost…the optimist has reason to keep trying. To tell someone they are in denial, as a matter of routine not diagnosis, is tantamount to calling them an idiot or telling them to “give it up.” Which of these is “at best” or “at worst” I can’t even say…both are bad in my opinion. Your greatest observation, “A massive sacrifice, but somehow not one at all” is absolutely accurate. Just as you said, I walked away from a “a real job, making real money, with real responsibility” knowing that I was where I was needed most by the person I love most. The likelihood of reclaiming or rebuilding that career as virtually non-existent was of no concern. The idea of giving my life in exchange for a positive outcome would not have encountered even a moment’s contemplation. I am now working at any job I can find and/or selling our possessions so that I can hopefully pull our home away from the brink of foreclosure (for a third time now) even while certain staffers at JPMorgan/Chase Bank have found it hysterically funny (for the past 22 months) to call me repeatedly up to seven days a week, some days hourly to ask for my dead, quadriplegic wife and ask that I wake her up and have her “walk” to the phone before they hang up laughing. Many times they have asked why I don’t just turn over the deed and walk away. My complaints to management and corporate have resulted in their opening a fraud case but doing nothing with it or making any attempts to curb this activity. It has only inspired more staffers to call with additional comments such as “our records indicate that your wife is not completely dead, only partly dead” and the apparent release of our records to others as I am now receiving calls from non-Chase numbers with people claiming to be Chase employees using the same type of comments. People are even showing up at our house claiming to be from Chase and asking for my dead wife then saying “Oh, you must be the tenant” as they explain Chase’s records indicate that my dead wife is renting the house to me. Chase gave me the “tip” that I should call the police on this last bunch. I will give all of you readers the “tip” that you shouldn’t tell your bank anything (such as that asking for your dead spouse would be upsetting to you) that you don’t want to be hounded with incessantly. After 22 months and no actions to curb this, I’m sure that Chase is “in it to win it. My actual point is that all of this pales in comparison (though it is wearing me down day by day) to what my wife or any dying patient must endure. My apologies for going on so long and waxing poetic (probably an improper use of the phrase) but Chase just called as I was writing this and our wedding anniversary is just a few days away and…you know.

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