Monday, October 22, 2012

My Weekend: Tales of the Pale Rider

This is the story of my weekend. At the end of my workday Friday, I found out my Brother-in-Law, H, returned home from work to find his wife, D, collapsed in a heap between her bed and her wheelchair. H did all of the usual things to get the situation under control, eventually ending with an ambulance trip to the nearest hospital. On Saturday my wife and I joined them at the UVA Hospital where they had been transfered. I spent Saturday night / Sunday morning at that hospital while H got a chance to go home. It is nothing new for me to assist in D's care. My wife and I have spent a week doing it while H was on an important business trip. But that is not what this story is about. 

My readers, I present a discussion about the end of a relative's life. We will all eventually die. Regardless of your personal plans, I'm very certain of this. This is the story of my weekend. The end of the story isn't here. That's still to be determined. However, there is an important thought here that applies to your life too. Can you identify how my Sister in Law's life has affected yours?

A little history for those new to the story. My Sister in Law, D, is 72 years old. Her medical history includes 2 Strokes, 4 TIA (minor strokes with no long term effects), Coronary bypass and pacemaker, and Spinal Stenosis that was fixed by metal cage in her neck, but can’t be fixed in her lumbar region due to scoliosis (non-standard spinal curvature). Beca
use of the stenosis, she’s on significant pain killers. She’s been basically bed-ridden for the last 2 years. She uses an electric wheelchair in her house, but has been able to transfer herself from bed to chair and back again. Recently, she’s only had an average of 2 good hours a day. (Hours that she is totally alert and aware; able to act and interact.) 

The family has known that D’s time is limited, but whether her strokes or her spinal stenosis would kill her was unknown. Following the collapse, we've discovered a third disease process in the race that is guaranteed to win.

D was bleeding profusely from her bladder. Ultrasound and CT scans discovered a mass in her bladder approximately softball sized. While no biopsy has been performed, it is presumed to be cancerous, since the odds of it being benign are <5 %. 

Because of D’s various medical conditions, the usual surgery to remove the bladder is not being suggested at all. Instead, doctors are investigating the probability of successful endoscopic surgery to investigate whether the tumor can be cut from the bladder wall and removed. If the surgery is too risky or the tumor cannot be removed from the bladder wall, the two other choices are to allow the bladder to clot closed and either drain the kidneys via external tubes (in the back) or do nothing to drain the kidneys. The later will result in death within 6 weeks by potassium overload of the cardiac system (Yes, the pacemaker would be turned off to allow this to happen naturally.) 

We know D’s wishes. Her husband, H, has both Legal and Medical Power of Attorney and D long ago filed Do Not Resuscitate orders. The adult children understand this and have prepared the grandchildren as best the children are able to understand.

That is the story to date. Tomorrow there will be a conversation between the various involved doctors and the family. The wishes of the family are for D to be as comfortable as possible in the time she has left.

Did you discover the moral of the story? Yes, Readers, your end is just down the road too. None of us know the end of our days. 10 minutes after I've posted this, a meteorite from the Orionid Meteor Showers could have crashed thru my roof and killed me. Worse, it could have left me alive but unable to communicate my wishes. So, DO IT NOW!!! Wait, did you hear me??? DO IT NOW! Make sure your loved ones know your thoughts about the end of life. 

How hard do you want them (us?) to fight? Are you ready for the journey to end? What still needs to be done? Why are you waiting? The Rider of the Pale Horse is on the road. Is he on the way to your house?


  1. The story continues... No surgery will be attempted. D will go home with Hospice care so she may pass as peacefully and painlessly as possible.

    The most telling comment: One of D's doctors said he wished he'd done the same with his mother.

  2. Update: D is home and resting comfortably.

    Here's how I characterize the past week:
    Friday - Stroke and bleeding from the bladder discovered,
    Saturday - Identifying the problem,
    Sunday – Figuring out what to do about it,
    Monday – The decision is made,
    Tuesday – Get her home,
    Wednesday – Figuring out the routine.

    I want to thank everyone who has expressed their concern.

    I also want to take this opportunity to thank and praise some hospital staff for their help and support. I was very impressed with the care shown not just to D, the patient, but also to the family. The Nurses and PCA’s who were caring for D were also concerned for us. They’d chat with us when they were in the room. Get to know us. Get a feeling for our mental state. Offer pillows, blankets, sodas, snacks, whatever it took for our comfort too.

    I will admit we’re an unusual family. We unfortunately have a lot of experience with hospitals. Surgeries and hospitalizations we’ve been present for include 2 liver transplants, 2 coronary bypasses, 2 carotid endarectomies, 1 Fem-Pop bypass, 1 cervical spine fixation via metal cage, 3 strokes & numerous TIAs, along with the more common surgeries like knee replacements, cataracts, trigger finger releases, problem pregnancies, etc. Because of these experiences, we were there to help. We don't just sit in a room and watch people clean up our loved ones. We stand up and help. We knew on Saturday that we may have to help care for D at home, so we were involved. We were hands on so we could learn what we'd have to do. At 3 am in the morning when you're woken by a scream is not the time to learn what to do. You have to perform these actions with untrained volunteers and family members. The experts are in the hospital, so that’s the place to learn.

    I want to specifically name some of the people who made a good impression on me. This isn't to say that others weren’t just as good, but these are the folks I remember. They did an outstanding job and made my time visiting their hospital a better experience than many other hospitals I've been in. They really made the words on those orange bracelets true: “Care Partners.” We felt like we were equal partners in the care of our loved ones. We were respected as equals, taught, shown, listened to, and, above all else, involved.

    These are the folks I want to specifically thank:
    Nurses: Deron and his trainee that night Ju, Susie, Mika, Mira, Michelle, Angie,
    PCAs: Amy, Katie, Betty,
    Doctors: Dr. Sneed, Dr. Blevins, Dr. Asram, and the Urologist whose name I will not get right so I'll just put Dr. K-ski and I'm sure you'll know who I’m talking about.

    I want to make special mention of Dr. K-ski. She did something wonderful on Sunday that showed she is a true professional. After she drew some pictures to help clear up some confusion on D’s Bladder tumor, and discussed some things we could do to resolve the problem, I talked about some of the other health problems that D is suffering from (explained in the original post). She stopped, obviously considering that new information, and said, ‘ You're right. I’m sorry but I was entirely focused on “my disease”. Stepping back to look at the whole person, you're right and I agree 100% with your assessment.’ (paraphrased)

    In my experience, that’s the mark of a real professional. People that aren't confident in their skills and knowledge will try to bullshit their way out of mistakes. A true professional will reevaluate, admit any mistakes made, and carry on. They aren't so concerned with their ego or how they're perceived. They know that life is a constant flow of changing conditions, accept it, and go with those changes, roll with the punches, however you want to say it.

    I only interacted with Dr. K-ski for 15-20 minutes, but she made the biggest impression on me. She really stands out above an excellent team.

    I plan to continue to update this post via comment as the story continues, but now is the best time to say a hearty THANK YOU to all who've helped so far.

  3. Thanks for mentioning our staff. We'll share this with the manager on that unit and the doctors, and I know it will mean a lot to them to be thanked publicly like this.

    Is the urologist perhaps Dr. Krupski?

    1. Yes, Dr. Krupski. (My original guess was Krebski, by I didn't think that was right.)

      Also, My Brother in Law on the FaceBook version of this post commented: "I agree completely with J's thoughts. The care we all received was above and beyond what I had expected. The focus was on D and her care but they also looked after us and were concerned for us. I can't praise the staff at UVA Hospital higher. Thank you all."

  4. Thank you for posting this. These are hard but important things. I am so sorry to hear of your sister in law's passing. My condolences.


  5. And now the story ends. D died at 12:03 pm October 28, 2012. She was surrounded by family. Her sister and nephew arrived from WI about 15 minutes before. We all gathered around D's bed and told her it was Okay for her to quit fighting. Her breathing slowed down, with minute long pauses, until she finally took her last breath. We all had a hold of her in the end. Hospice and the funeral home have both come, so D has left the building. At this point, some 3 hours later, I think we're all done crying. The service is all planed out. D picked her own songs. We haven't decided when the service will be held, but the priest will be back at 4 pm and we'll plan then.

    I want to thank everyone for their prayers, condolences and/or kind words.