Thursday, October 22, 2015

Paranoia is Really Hard

There is a fine line between paranoia and gut instinct.  It’s the difference between the “feeling” you develop when you intimately know your partner and obsessive worry about every twitch.  At times, I’m not sure I know the difference.

I know Marty, I know almost every nuanced movement, I know the yawn, the stretch, the moan and the slump.  I watch and sometimes I assume and I almost always wonder, “Is this a sign”. 

When you do this for a time, when you are another person’s life line, when you know someone so well, when you have seen illness come hard and heavy you get paranoid about all of those twitches.  That means when Marty yawns my heart rate speeds up and the adrenalin starts to pump just a little harder.  Is it a yawn or is it a precursor to something worse? 

There’s the line, there’s the decision point, which is what makes this really hard for someone who embraces and feels anxiety like it’s your skin, for someone who struggles to keep the demons of worst case at bay.

I confess, I don’t really know how to differentiate between what is a real symptom and what is simply hyper-vigilance.  Experience helps with perspective but experience also means I have seen what can happen with Marty and how fast, how amazingly fast she can go from fine to on the edge of extremely not fine. 

It is the thought, the fear of the consequences of inaction that haunts me every day.  It is the thought of the very real awful results of inaction that deepens anxiety and causes me to doubt.

Early on in our journey I worried about being one of “those” caregivers, one of “those” almost hypochondriac types of patient/caregivers that jumped the gun at every cough, sneeze, burp or fart.  I did not want to be that guy, I didn’t want to be the old man that health providers avoided because we were always there with every little thing.

My doctor told me to forget about that and not worry about what others might think.  He said I knew her the best and I should follow and advocate for my “gut” for my “feeling” because I was the one who knew her best.

He was right and Great and Wise has been the supreme advocate for following my instinct.  He never fails, when he makes a diagnosis or recommends a course of action, to ask, “What do you think?” or “How do you feel about that?”  The doctors listen to my gut.

I remember one trip to the ER when Marty had been showing very early signs of sepsis due to an undetected UTI.  The doctor did the all of the appropriate diagnostic tests and came back and said, “You do know your wife.”  Duh.

My knowing my wife is not the problem.  My learning to be a strong advocate for Marty is not the issue.  My evolution to a proactive as opposed to a reactive caregiver is not in question.  As a caregiver you have to be all of those things. 

The issue is how do you know the line, how do you distinguish between paranoia and the real coming storms that will certainly come back to visit us.

Truth….I don’t have a clue, if I did I would have my anxiety levels in check more than I do.  If I had a clue I wouldn’t catch my breath at a yawn or a stretch or a cough or a sneeze.  If I knew how to tell the difference between real illness and my worry about a real illness I would ….. well I would be a lot smarter than I am because most of the time I worry way too much.

When someone I know experiences a bad medical issue or trauma, I, as someone who is filled with Gandalf like wisdom and insight offer advice, of course I do.  My best advice is one day, one issue at a time and don’t borrow trouble.  

At some point in time I might listen to myself.  Naw….that would make way too much sense.

Thursday, October 8, 2015

Nurses Rock

I may not be an expert but I’m close.  Over the past years I have become something of an expert on nurses and more importantly I have come to understand that you better be nice to your nurse because they can make your life better…..or not.  

Prior to Marty’s strokes I had limited contact with anyone in the health profession.  I tried really hard to stay out of doctor’s offices, hospitals or any other place that had sick people.  I didn’t like it, I didn’t have the patience for it and it felt icky…. sick people you know.

Over the past ten years I have come to know and love many in the health care business and a lot of those people are nurses.  I have to say, if you plan on getting sick or need health care, nurses rock, they are the ones who actually deliver a good part of that health care the good doctors are prescribing.

The nurse is the one who will wipe the drool off your lips and clean your butt when needed, hopefully with a different cloth.  The nurse is the one that jabs the needle in your back-side to deliver the good stuff, they are the ones that make sure your heart is still beating and how fast, they are the ones who get the blood and the pee and the spit, the ones that bring you the warm blanket and the ones that are the gate keepers so you can get some of that high quality care.

We have been fortunate, first that we can afford health care and second because we have had mostly positive nurse experiences.  Maybe it’s not luck, maybe most nurses sincerely want to provide good care.  Maybe most nurses do what they do because they care; maybe most nurses do God’s work because they are good at it and feel like they have been called to do what they do.  

I don’t know, I just know nurses make lives better at the very worst possible moments in life.  Being sick, hurt, or broken is awful, bad care makes those moments excruciating, good care make them tolerable.  

Toni, Wendy, Sarah, April, Melissa, Jessica, Tracy, Annette, Patty, and more, these people have become a part of our tumultuous life and they are a part of our posse, our crew, our team that loves Marty, cares for Marty, and works for Marty.  All of these people, Steve, Stacy, Kathy, Denise and others have done what many could not, made our lives better during really anxious times.

The nurses I know work hard, they work really strange hours and they work long shifts. 
The nurses I know don’t get to pick their patients, they take care of the sweet and generous and the ass hats because we all get sick from time to time.  

The nurses I know carry bags of fluids, wash their hands until they are raw, listen to coughing and smell poop, pee and puke until the smells stay with them all day.  

The nurses I know apologize when they hurt you, feel bad when they can’t get blood on the first stick and put up with my occasional anxiety ridden insanity as I try and take care of Marty.  They know and allow me the occasional mental health visit to Great and Wise or the hospital and not one time have they ever given the hint that it’s not all right.

The nurses I know, when they know Marty, deeply care for her.  The nurses I know, when they get to know Marty, care for her and marvel at her resiliency in spite of the fact that they see this kind of resiliency multiple times during any given day.

The nurses I know are my heroes as they go about their work and still go home to care for their own families.

I love me some nurses and if you don’t now, someday you will because it will be your ass that’s getting the needle.

P.S.........I gotta add one other thing.  I also love the first faces you see and the person you take to when you call in a frenzy.  Angie, Pay, Annetta.....they don't get to do the sexy poking and probing but they are the gatekeepers, the people who get us in when Marty'sHusband is in a panic.  It takes a village.

Thursday, October 1, 2015

Across the Hospital Hall, Literally Across the Hall

It was about 9:30 p.m., last night, Wednesday, we were in the van following Nykkie in her car.  Marty was behind me, her wheelchair locked and strapped down and she was trying to hold her orange puke bucket steady, I was trying not to drive too fast as I constantly checked her in my rear view mirror and offered encouraging platitudes as it was clear she felt really bad.

It’s a short drive from our house to Providence ER and quick thoughts ricocheted through my brain, “shit, not again”, “what a break that we weren’t at the lake 90 minutes away”, and always, always on this trip, “what if this is our last ride”.  That my friends is how you do morbid and banal at the same time.

We had just made this same trip, the result of the same unique to Marty symptoms a couple of weeks ago.  Was it another respiratory infection, a UTI this time, or pneumonia again?  It makes you tired running all of these thoughts through your head as you make the simple seven minute drive, man the brain moves fast.

I pulled into the ER bay, put the van in park and in our practiced and well coordinated fashion Nykkie helped me get Marty out and then took over the van.   I took over Marty and with our drug information, medical history, I Pad, phone and orange puke bucket, we rolled into the ER.

The next words, the words to get you into triage fast are a big deal.  I spit them out, infection, septic, hypotensive, stroke, vomiting.  Marty helped by dry heaving over the bowl I cradled under her chin as I held the paper work.  We hit triage in about 15 minutes and were in a room with a doctor in another 5 minutes, it helps when Marty cooperates with really low oxygen and blood pressure numbers.

Nykkie and I expertly moved Marty to the gurney and sweat started pouring from my forehead and ran down the back of my neck and down my back, a sure sign of my red lined anxiety.  This was not a new situation, in fact we have been in this very room before but I have to say, this had come on so fast and Marty was so sick I was walking on that fine line between panic and controlled anxiety.

She got immediate attention and over a multi-hour period of time blood was taken, urine was taken, an IV was started and my “why we are here” story was given multiple times.  I don’t mind repeating myself because talking helps me with control and any time you walk in the hospital you cede control, I don’t do control ceding well.

A case in point, Marty was soon on the receiving end of a nasal gastric tube, a tube that sounds bad, looks bad and is bad.  The tube runs through your nose into your stomach, it literally sucks, sucks to have it put in and it sucks really nasty looking stuff from the stomach.  

We had never experienced this and I really doubted the efficacy of the whole thing but the ER doc was pretty convinced, based on an X-Ray and exam that Marty had a GI impaction.  I sat there trying to figure out, do I allow this, do I stop it and say no, we don’t need to do this. 

I gave her history, I gave dates, it didn’t change the experts concerns, it’s hard to argue with experts.  I sat there and felt guilty about allowing the whole thing but afraid to stop the rolling ball for fear this educated man was more right than I was.  They did the work, they did the CAT scan, there was no obstruction, and there was no need for emergency surgery.  All of that was good news but I kept thinking, I should have objected, but the reassurance of knowing her gut was good was good.

The end result of the tale, after spending the whole night in the ER, is probable pneumonia, possible sepsis and time in the hospital.  We are back on 3rd floor south across the hall from where we were two weeks ago, those good folks know us.  

I don’t think we will be here long but the comfort of skilled nurses, good drugs and fluids trumps my rather obsessive need to control all aspects of Marty’s care, besides I’m a pretty charming fellow and more often than not can cajole these health care professionals  to do some things my way.

I hate being here, I hate it mostly for Marty, but for sure I hate it for me. 

Truth and I know this…’s a necessary part of our journey and frankly I’m really just along for the ride, regardless of what I think.