Tag Archives: end of life

May 20, 2009 · 19:41

Whirling, transient nodes of thought careening through a cosmic vapor of invention…

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“My mind is aglow with whirling, transient nodes of thought careening through a cosmic vapor of invention…” Headley Lamar (Harvey Korman) Blazing Saddle’s

Blurred Days, Preparing for Death and Medium Rare Diseases : The past 10 days have been a blur.  So much has happened that I have a hard time coming to grips with it all.  First was going out to California to assist my mom and brother in dealing with things concerning my dad’s worsening condition.  It was good to have a couple of visits with him where he was with me at least for a few minutes.  I will treasure those figuring that they may well be the last that I have with him on this green earth.  Yet it was hard.  I had to kind of package away my stuff for a while and hoping to process when I got back.  It seems that the Deity Herself has decided that she needed to build more character in this character than this character thought that he needed.  When I got back we were faced with the first real health crisis in our lives.  Judy contracted Epiglotitis somehow and we spent the majority of the past three days in hospital ER’s or having her admitted to hospital.  Nothing is ever normal for us. Maybe it’s because neither of us are normal.  In fact Judy is Abbess of the Abby Normal (see the link on my blog roll).  So Epiglotitis is very unusual, 10-40 cases in a million.  Most are kids and it is almost unheard of in this country.  The Third Year ENT Resident said that he had never seen it before.  The attending almost missed it until the ER Attending saw the soft tissue X-Ray.   As I said in my last post after I had made the diagnosis which was confirmed by the physicians: “It’s a kid’s disease except when it happens to adults.” It is what probably killed George Washington.  Thankfully even early Monday morning though the ER Attending did not see it he did the right thing in a heavy dose of IV antibiotics and steroids.  This probably arrested the development of the condition.  When it worsened we got Judy into the ER pretty fast and again the right thing was done.  She seems to be doing well now that she has been discharged home and for this I am most grateful that she is not dead  or even the Grateful Dead. However two long nights in ER with little rest following the trip to California have left me worn out.  I do hope that the Deity Herself does not think it necessary to build any more character in this miscreant Priest.  Thankfully my Department Head took my duty today and put me on two days of leave to put myself back together. Sleep has been fitful and my anxiety levels have been rather high.  Thankfully no PTSD meltdowns this time at least not yet.

The Holy Unction of the Baseball: If you remember my post Baseball in Between Life and Death in the ICU I mentioned a dear woman and her husband who were both big baseball fans.  She was in the ICU and seeming to be getting better and I promised her a baseball.  She crashed hard.  The next day when I brought the ball in she was heavily sedated and intubated. She was trying to die on us.  If you recall I placed the baseball in her hand and she gripped it tight. Her husband and sister said that she did not let it go for about 7 or 8 hours.   I prayed for her as I did this.  I went to California and she was still pretty bad off.  By the time that I came back I heard that she was doing a lot better.  I saw her yesterday and had a wonderful visit with her and her husband.  There is a possibility that they may be actually able to do something to help her heart function.  She remembers having the ball in her hand and wondering how it got there even when she was heavily sedated.  Could it be possible that the Deity Herself could have made The Holy Unction of the Baseball a new sub-Sacrament of the Sacrament of Healing?

Don’t Screw Up the Prayer: I did the invocation and benediction at the groundbreaking ceremony for Preventive Medicine unit at Norfolk.  I’ve done hundreds of prayers at military and civil functions.  They are not hard to do.  What you don’t want to be is too memorable because if this is the case you have probably done something to be remembered and not in a good way.  I have seen this done a number of times.  Often the Chaplain has no clue that he stepped all over it.  This can happen by going too long, forgetting the words or trying to be too uppity, sectarian, funny or unique.  Since most of the time the people at these functions have to be there the chaplain cannot presume that they are the show and can do whatever they want.  In the Navy this is really important.  I write these prayers out and have done so for many years now.  Not only do I write them out I read them several times before I ever get in front of a live audience.  Doing this keeps me from doing something stupid, which on occasion even I can do.   I even have a basic format that I put the prayer into: The introduction; specific event/unit/situation that I am asking God to bless, and the closing sentence.  I try to keep it to 30-45 seconds, never more than a minute.  It is not good when they look at their watches when you are praying or yawn. In the public forum you have a place to be a witness, but it is always a delicate balance. The people at the event are not there to see the chaplain.  The chaplain is like the ceremonial first pitch or meeting between the managers of the two baseball teams and the umpires to discuss the ground rules.  Chaplains are not the main event unless it is an actual worship service.  Even memorial services and ceremonies where the chaplain plays a huge role, the chaplain is not the reason everyone is there.  It is no place to try to be Paul Harvey and tell “the rest of the story.” Thus this ministry in the public arena can be one that either provides the chaplain entrance into the community with opportunities to provide great ministry, even evangelical ministry.  Or ensures that they remain an outsider to the community, nipping at the fringe and hoping someone will hear them.   When we were done I had an officer compliment me on my prayer.  He said it wasn’t too long, wasn’t too short and honored what they were doing.  I love it when a plan comes together.

A Tale of Two Burgers: Yesterday I did something that I have not done in years.  I had two hamburgers in a single day. Both were fast food burgers and usually I maybe eat A HAMBURGER every 45-60 days.  Yesterday as you know from reading this was rather hectic.  One the way home I stopped by Sonic to get a Super Sonic Double Cheeseburger with Mayo, Mustard and Ketchup. For fast food this is a hell of a burger.  It is tasty and big.  Sure it’s not the best hamburger in the world but it will work in a pinch.  Early this morning after leaving Judy at the hospital I stopped by a 24 hour McDonald’s.  I was hungry and tired.  Unfortunately they have an exceptionally limited after midnight menu. Two Types of Quarter Pounder, The Big and Tasty Burger, a Southern Chicken Sandwich, Chicken McNuggets and Chicken Strips.  Not much to choose from.  I should have gone with the McNuggets or regular Quarter Pounder but taken in by the name I asked for the Big and Tasty.  This was very possibly the very worst hamburger that I have ever had.  The meat was bland and greasy and topped by a mound of mayonaise that drowned out any other taste.  I could feel my arteries closing as the first bite went down.  I can only say “Never Again.”

Moving to the Front of the International League: My Norfolk Tides are now 26-12 not only atop their division but now has the best record in the International League.  This is a exciting young ball club.  We have not had anything like this in years at Norfolk.  I just hope that the Orioles don’t rape the Tides to fill their roster.  I know that the minors exist to support the big team but right now this is a special team and fun season.  I pray that the Deity will ensure the Orioles success so that we can continue like this the rest of the season.

Getting the call reversed: It looks like our insurance company has decided to agree with us and the body shop and denial the fraudulent claim against Judy.  Sometimes arguing with the umpire nicely gets the call reversed.

As always thank you for your kind words, encouragement, concern and prayers over the past 10 days.  They are appreciated and I know that they are effectual.

Peace, Steve+

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May 10, 2009 · 12:14

Mixed Up Mother’s Day

This is a weird Mother’s Day for me.  I’m getting ready to fly out to California to help my mom make funeral arrangements other end of life decisions and nursing home/ insurance company billing issues for my dad.  Dad is probably in his last couple of months of life.  His doctor is amazed that he has lived as long as he has.  However, dad was always a scrappy fighter and remains so despite his end stage Alzheimer’s disease and probable cancer.

Mom has had a tough go of it.  Dealing with my dad’s deteriorating condition the past five years and not having retired life turn out the way that they planned has worn her down.  She is not doing well neither physically or emotionally.  Sometimes her emotional state leads to difficult situations for my brother and me.   As with most independent minded older children my  relationship with her has been at times mercurial.  Mom wanted me to remain in our home town and be a teacher.  That didn’t happen.  As readers of this blog know, I am that Navy Brat who never grew  up and lives for the adventure of life and discovery.  When my dad retired from the Navy in 1974 I thought life was over.  The adventure of seeing new places and discovery seemed to stop.  When I finished my first two years of college I moved away, only to return for visits as I have ambled about the world.  I know that she has had a hard time with this but some things can’t be helped. It is interesting because she and dad did the same thing.  They joined the Navy and never went back to their hometown except to visit.

Mom has always been a bit special.  When my dad was in the Navy she was a rock.  Once a neighbor threatened me and mom went down and blasted him.  It was kind of cool to see my barely 5 foot tall mom take on a man who was 6 foot 6.  She would have had no hesitation to clobber him had the man laid a finger on me.  She endured a lot in life.  Her dad was abusive and controlling.  She endured frequent separations from my dad when he was in the Navy.  She worked hard in the house and outside of it.  We didn’t lack for anything.   She experienced the loss of many friends when the aircraft carrying the Marshall University football team crashed in 1970.

At the same time she is her father’s daughter.  She has always  known how to get my dad, my brother and me into rages.  She knows our buttons and can push them at will.  Thankfully my brother and I have become much more adept in recognizing what is going on and only occasionally have flare ups, a credit to our self discipline as well as a touch of help from the Deity herself.   Our family in better times was much like the Costanza’s in Seinfeld.My brother and I understand George completely.  At times we resemble Ray Romano’s family in Everybody Loves Raymond. Back in 1998 when I was the installation chaplain at Fort Indiantown Gap Pennsylvania Judy and I were watching Seinfeld. George’s parents were screaming and Judy looked at me with wides eyes and a shudder ran through my body.  She said “My God that’s your parents.”  I responded “I know but we can never tell them.”  The next night we got a phone call from mom.  She asked me: “Did you hear what Jeff told us last night?”  I said “no.”  She then said “Jeff said that we were just like Frank and Estelle Costanza on Seinfeld.”  I was stunned and started laughing out loud.  I then said “Mom, we were watching Seinfeld last night and thought the same thing.  But we weren’t going to say anything….but since Jeff has brought it up, you are just like them.”  She cried “Nooo!”  We later have had a lot of laughs over this but sometimes I think that  Jeff and I each in our own way are George Costanza or Ray Romano and our wives like Raymond’s wife played by Patricia Heaton.

My brother and I were born almost six years apart.  As such for most of our younger lives really didn’t think that we had that much in common.  Over the course of the past 10-15 years we have found that we are much more alike than not. Our views on politics, religion, how we react to different stressors, how we do life are surprisingly similar. He works hard as a school principal and is very involved in his family’s life.   His oldest son evidently has at least some of my personality traits and at times I am reminded by Jeff  that he never thought that he would be “raising his brother.”

Anyway the relationship that we have with mom is interesting, especially now.  She’s not doing well and I wish that we could get her back to where she was five to ten years ago.  However, that won’t  happen.  Certain medical and physical conditions never get better.  Mom is grieving dad, the man that she spent 50 years with is gone, even though his body is still alive.

I am going to surprise her tomorrow.  My Mother’s Day Card is intentionally late.  I have it to take with me.  Instead of the usual flowers sent through an online service, I will pick them up on the way to the house.  I’m telling her that I expect the man bringing her gift and card to get to the house about 12:30 or 1:00 her time.  However that man will be me.

I do appreciate your prayers this week.  I imagine it will be difficult.  Pray for my mom and dad.

Peace and blessings, Steve+

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April 17, 2009 · 20:08

Long Goodbyes- Letting go when a parent has Alzheimer’s disease

jeff-dad-and-me-at-ca-capitol1Better Times: Jeff, Dad and Me in front of California State Capitol around 1972-1973

We all hit times of transition in our lives.  Sometimes these involves moves, job changes and relationship changes.  However the hardest seem to be the passage of generations, especially when we see our parents passing away or in their final months. Alzheimer’s disease makes that process different, it’s not like a heart attack or stroke although strokes can have a similar effect, cancer or renal failure.  Alzheimer’s takes the person that you knew away long before they die.  It is the longest of goodbyes.

My dad has been diagnosed with Alzheimer’s for some time now.  He has been going down bit by bit for the past several years.  It started slow, in fact we didn’t initially notice it.  He started not remembering things and having minor fender bender accidents which we found out about later.  As he continued to go down his mental status, nervous behavior and lack of awareness increased.  As this happened my mother tried to take care of him herself, she tried hard, but was unable to cope with him.  Eventually she began to wear down.  When he fell down and broke his arm in several places last year it was the beginning of the end for him, an end that is likely fast approaching. Since he broke his arm his mental status and physical condition have deteriorated significantly.  Additionally his disease process has affected my mom, who has not taken care of herself the way that she should.

I saw him in the spring of 2007 just before I went to Iraq, and last year after my return from Iraq I made three visits to the California from my home in Virginia.  I anticipate a trip out in the relatively near future.  Neither my dad or my mom are the parents now that I grew up with, the disease has taken a toll on both of them. Of course we all think about the patient, but the closest caregiver is often worn down to nothing by the process.  This has been a process of a long goodbye for all of us.

Diseases such as Alzheimer’s are hard to deal with.  They are slow moving and because they are rob the person of who they are, difficult to watch.  Those closest to them seldom realize what is happening until things start really getting weird.  Such was the case with my mom.  my dad was having auto accidents and other problems before his diagnosis. Before this dad was active, involved with community groups and an avid golfer.  He loved all kinds of sports and to travel.

His deterioration has been most remarkable to me.  This is perhaps due to my distance away from where my folks live.  I don’t see him everyday.  Thus when I go back my benchmark for how I see him is different than that of my mom and brother.  I can see the major changes in every visit because of the distance.  Likewise I can see the deterioration in my mother’s condition with each visit.  I can see the toll that my dad’s disease has taken on her. She is not the same as she was even a few years ago.

Even though I am not in the same town, I am reminded of my parents on an almost daily basis.  In my work in the ICU of a major Naval Medical center I get to spend time with a lot of people who are a lot like my folks.  My parents are retired Navy, my dad retired as a Chief Petty Officer back in 1974.  I am a quintessential “Navy Brat.”  I grew up in it, I lived and guess that I still live for the adventure of military life.  I find that there are a couple of major sub-groups of military brats.  Those who loved it and somehow continue that type of lifestyle, and those who don’t and as soon as dad retires never look back.  They never move again if they can help it.  My brother is like that, he has remained and been very successful as a teacher, and now school principal in the town that we retired in.  He has a wonderful family and it turns out that we are a lot more alike than we are different.  I see a lot of this where I work.  It seems that a good number of the patients and families that I get to know in our ICU are my parents generation.  Their kids are often “Navy Brats” like me. We have a shared experience of life that you do not find in many other places.  It is like we are family.

While I spend time with these folks, many going through end of life situations, I often see my parents.  Every old retired Chief, or retired Chief’s wife reminds me of my folks.  They remind me of the good times and the bad.  They remind me that I am awaiting my time to be be at my parents bedsides, not as the Priest, but as the son. With every one of these visits  I am back home.  During clinical pastoral education training you are taught to recognize what is your stuff and what belongs to the patient and the family.  I’m pretty good at doing this, but even recognizing this fact, the feelings can run pretty strong.  Like the Romulan that I am I am not a big fan of emotion.

This is a long goodbye.  Alzheimer’s ensures that you do not wake up and find that your parents died suddenly and unexpectedly.  They die a little more every day. With each visit I have returned to my home and duty station wondering when I will hear that either mom or dad has passed away.

This week was hard.  I got a call from the nursing supervisor of the place where my dad is being cared for.  His condition has gotten worse, his weight is dropping rapidly, 10 pounds in the past month despite increases in diet and nutrition.  The call came at a unusual time, when I saw the number I thought that it was the call that said he had passed away.  The lady who called is an old high school classmate who not only is concerned about my dad but also my mom and she let me know that dad has lost 4 pounds in the last week. His doctor is surprised that he is still alive.  He is down to 116 pounds, and even when I saw him at 130 last year he looked really bad.

We made the  decision yesterday to make my dad a hospice patient.  He will remain where he is, but will now will receive hospice care.  The decision was another watershed.  My brother and I both have known and made our peace with the fact that my dad is in his final months or maybe even days.  The end is coming, and is sooner than it once was. It has been harder for my mom, I don’t know if she will recover, she had somehow hoped beyond hope that he would somehow regain himself.

The goodbyes to my dad have been said, but they are not finished.  When that will be is still uncertain.  Until that day things will remain in this no-man’s land between life and death.  I know that there are millions of others going through similar situations and to them I say “you are not alone.”

Peace, Steve+

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