Saturday, November 28, 2015

What I miss the most

It is the Christmas season.  A part of the year that makes me more melancholy that happy.  Actually, I find Christmas and New Years depressing beyond description.  And the older I get, the worse it gets.

Christmas makes me think about my past.  My few successes and my many failures.  I think of old friends and Shipmates, most of whom are now dead.  Those thoughts bring back good and bad times.  But they were good times with friends that I depended on and them on me.  Those were great times that warm my soul.

I miss being a Chief.  The times in the Chief's Mess.  The fellowship, friendship, working together towards a common goal, and blowing off steam doing less than smart things!!  It was fun!!  Or at least, it was then.

I miss being dependent on fellow professionals and them being dependent on me.   I even miss the arguments that arose in the Chief's Mess about the most ridicules things.  I just miss being a Navy Chief.

I never really fit in the civilian world.  I tried it and I did not like it.  So, I went to work for the Navy as a Civil Servant.   There, I could use what I learned to serve the Navy I loved.

I screwed up when I retired from the Navy.  I got caught up in my own self-importance.  The most stupid decision I ever made was becoming a Command Master Chief and then a Force Master Chief.  It was not a fit for my personality, my career goals, or my happiness.  I remember looking in the mirror, when I was the CMC on the USS Caron, and NOT recognizing myself!!  I should have went back to being a Gunner's Mate then.  I remember the Bible verse that says;  "Pride goeth before a fall."  It certainly did.

Now, I am a broken, bitter, depressed, old man, without anything of value to do, nothing to offer, and no way to change my lot in life.  I dream about the Navy.  Every facet of the Navy life.  Sometimes I escape to my Navy life in my mind during the day.

I live in a wonderful Continuing Care Retirement Community filled with rich, landed gentry.  There are a few successful retired Navy folks here.  They try to act like like they are something else.  Folks like me call that "Uppity"!  I act like a Retired Navy Master Chief.  Hey, it works for me.

I never thought I would live this long.  I never thought I would have Lewy Body Dementia, and I never thought I would end up like this.  I failed myself!!  Yes, I succeeded, but that success did not serve me well.  I would give everything up that I have to be a Chief Gunner's Mate on a MK 42 equipped Destroyer type Navy ship, sailing in harm's way.  Instead, I am here.

I guess I miss my life the most.  That about says it all.

Reposted from "The Master Chief's Lair"

Wednesday, November 25, 2015

I have never been afraid of anything, until now.

I truly have not been afraid of many things.  And, I learned early to never let anyone know what you are afraid of.  Giving into fear only paralyzes you and prevents you from accomplishing your goals.

I also have written before about my neurologist in Virginia Beach.  She was tenacious and dedicated.  She asked me if I had dealt with the reality of my disease.  Of course I said YES!   She immediately said; "No!  You haven't!" and she was right.  As a matter of fact, even though I thought I had dealt with the realities of LBD before, I just now HAVE honestly dealt with these issues.

You see, I now know I am afraid to die!   No, I am not afraid of my destination after I take my last breath on this earth.  I am Heaven bound because of the Finished Work of Jesus Christ on the Cross!!

No, I am afraid of the process of death.  It is something I have never done.  So, I am afraid of the unknown.  And, since the disease has progressed to the point of completely dominating my life, I now realize what my Neurologist meant when she asked me if I have dealt with my disease.  I am going to die.  And not a long time from now, but sooner, rather than later.  If the disease progresses next year as much as it did this year, I will be in bad shape next year.  Not something I am prepared to deal with.  But something I must face head on.

Back to my management of fear.  I cannot let those close to me that I am afraid of this.  Yes, they now know because they read this blog.  But, that is why I am writing this.  Because I do not know any other way to tell them.  Remember, I never let anyone know I am afraid of anything!

So, there you have it.  This maybe the first time I honestly admitted, openly and honestly, that I was afraid.   Do I feel less of a man?  No more that Lewy Body Dementia had made me.  No, as I digest this, I feel better that I have openly said what I said.  Now I have to deal with every one's reaction.

Sunday, November 22, 2015

Thanksgiving is my favorite holiday

Thanksgiving in my favorite Holiday.  It is the day I met my Wife.  It is a day my Mom and Dad ate Thanksgiving diner on the USS Stein (DE 1065) with my Wife and me after I came home from our Vietnam deployment.   Thanksgiving, if celebrated correctly, can connect us to God's intention for us that we live our lives being thankful to our Creator, for everything in our lives, and everything in the World.  From the simplest single cell organism to the most complex machine.  God created everything, for His Glory!  That is what Thanksgiving Day should be centered around.

This Thanksgiving, I am very thankful for God's grace in my life.  I have Lewy Body Dementia and it has progressed more this year that any year before.  On the surface, that frightens me.  But, taking a more prospective view, it has been a slow progression up to this year.  That is a blessing.   Yet, I know the disease will not slow down again, so this next year will be even more challenging.

Speaking of my days on Navy ships, like the USS Stein.  Recent discussions on this blog have discussed courage.  I have faced my experiences with LBD the same way I faced danger in the Navy.  Trust me, it is dangerous to be a Sailor on a Combat Ship of any type.  Ammunition, mooring lines, swinging water tight doors, hatches, and scuttles, moving equipment, replenishment at sea, all done on a ship that is rolling and pitching, with wet decks, many times in the dark, and all the time being tired from long hours on watch and longer hours doing your professional job.  The bottom line is, I chose to run, face first, into the challenges of the U.S. Navy!  I tried to never show my fear.  As I promoted into Leadership positions, gun mounts that failed to fire, broke live ordnance into large pieces and turned equipment designed to move heavy ammunition quickly into the gun bore into unrecognizable shapes, all became a normal part of my life.  But all of these things and experiences could be learned, improved on, and passed on to others.

My experience with Lewy Body Dementia is something I am trying to pass on to others. But not to make them better but to make their experience better.    But, I cannot get better at having the disease or learn to do this better.  Instead, I have learned quickly that I cannot beat Lewy.  It beats me at every turn.  I have never been overwhelmed by something in my life like I am by this disease.  I always knew I would be defeated by LBD.  But now, I know, I have already lost.  That is where I am not courageous.  If I were, I would continue to fight.  And I did fight for the first years.  But now, I do not have the energy or desire to fight this disease.

I have no idea when God will take me home.  I do know He is in charge.  My life was planned by Him before I was formed in my Mother's womb.   Lewy Body Dementia was in that plan.  I will not try to change God's plan for my life.  I will try to serve Him as long as He enables me to.  When God is done with me, I will go home.

 


Saturday, November 21, 2015

Last night...

After my post last might, I sat in my recliner quietly, surfing the web, and slowly calming down.  My wife asked me how I was doing around 11PM and I said; "Better".   She then asked me what cause my issue and for some reason, I felt safe in explaining it to her.

She was very attentive and then she said;  "You have to tell me these things."   I told her that I never tell her because she would get upset at me. She explained that if I tell her, she can try to change her behavior that is causing me issues!  That was refreshing, since I still have scars from the bite marks cause my previous statements.

I guess I will try to tell her when she is doing something that negatively impacts me, in soft, polite, manner.  I agree that she cannot change something if I do not tell her about it.  Makes sense.

Communication is always better than quiet brooding.

Friday, November 20, 2015

Somedays, we do too much

We seem to have a difficult time judging how much is too much as far as outings and doing things, for me.  For instance, we rode the bus to the Commissary today as we normally do in Wednesday.  Then, after putting the groceries away, I had physical therapy.  After that, we went  to a few stores to purchase some things to stuff a Samaritan's Purse Christmas Box.  On the way home, I became overwhelmed and extremely grumpy!

We ate dinner and then my wife started in on her immediate requirement of getting the Samaritan's Purse packed in the provided box.  This is not due until Sunday morning at Church.  But, for her, it HAD to be done right then and there!   So, even though I am mentally exhausted, I have to chew my tongue and do what she wants.  Peace is better than arguments.

After that, I wanted to go to bed.  But, I stayed up and I am finally relaxing after sitting here in my recliner for three hours, surfing the web, and ignoring everything around me.  Another thing is, my Wife's mind never quits.  She analyzes everything.  She plays the " What would have happened if" game and it drives me crazy.  Who cares what could have happened on a TV Game show.  I truly do not care and the constant mental exercise of reviewing things drives me mad. Oh, and then there is the constant drone of politics on the TV.  I have told you before how that annoys me.  She just does not seem to understand how these things effect me.  I have told her and she reads my blog from time to time, so she knows how I feel.  I avoid things that annoy her.

Look, I realize, as most of you do, that I have real difficulties as the sun goes down.  And these issues are getting worse, fast.  This winter is my most intense sundowning time.   The things that effect me stay the same.  They have not changed.  So, why do I fight the same issues every night.

The bottom line is, I am difficult to be around because of LBD.  But, it is not my fault and I need help to even stay on a even keel.  

Tuesday, November 17, 2015

Courageous? Not me, I am scared out of my wits!

Someone sent me a comment thanking me for being so courageous.  Nothing could be farther from the truth.  And if I portray myself as brave or courageous as I face LBD, forgive me, because I am scared to death!

Yes, I write about what is happening to me.  Why, because it helps me deal with my issues and I truly believe it may help others.  But, I am scared over the future.   That is one of the reasons I plan, project, research, and worry so much.  You don't see my tears or my fearful thoughts, especially at night when I am alone with my thoughts.

I was brave, or stupid, either one, when I was a Navy Gunner's Mate and we would have a casualty in the gun mount that would involve ammunition, ready to explode.  Then, my knowledge, training, and wits could help me survive.  Now, there is no survival.  Only a slow decline into oblivion.  And now I know, as I did when I was working around enough explosives to sink my own ship, that only GOD is in control of my life.

Me courageous?  Not really.  But I do helplessly depend on GOD for my future.  I recommend that plan for each of you too.

Saturday, November 14, 2015

Comments from you help me!

I read and post almost every comment you send me on this blog.  Why?  Because there is GREAT value in what all of you have to say.   Many of you are caregivers and some are patients with LBD or another form of Dementia.   I have written before that we are a "Support Group" unto ourselves.  I hope you read the comments of others, they offer another unique, important, factual, point of view of this journey.

I borrowed from President Reagan when he told America he had Alzheimer's.  He said, he was involved in  "the long good bye"!   He was right.  But this is also a journey through many changes, valleys, mountains and storms.  Sometimes  we have quiet waters, but we know, soon a new storm will overwhelm us.

I have learned to embrace and enjoy the quiet times of this journey.  The storm will come again and I will not be ready for it.  So there is no need to be apprehensive.   You will never be ready to face the challenges and you will never be strong enough to defeat them!  That was the hardest lesson I had to learn on this journey!  And my Wife has not yet given into that truth!  She still thinks we can fight and win.   But, we cannot and in this case, resistance IS futile!!

Another comment from you that makes me feel good is that "You Believe that I really am sick'!  So many times, I have been told I am not sick, and many treat me like a fake or a malingerer.  I know you see this in your lives, but it helps me to receive your support.

Last week, my Wife and I had an emotional conversation about how I was feeling and doing.  I said I wished we had a support group for those of us with Dementia.  She went to the Nursing Administer here at Azalea Trace.  She really liked that idea and we spent about 30 minutes fleshing out this idea.  For instance, I would like to see, be in, and experience, the "Memory Support" area BEFORE  I am bad enough to move in there!  I want to meet the staff and get to know them.  They should NOT be strangers to me, but familiar people I trust.  This alone would make that transfer easier.

Another thought I had related to my Navy career.  Before each Deployment, we had a series of "Pre-Deployment briefings for the Crew and Dependents.  I view this journey as a Deployment.  So, why not provide me some Pre-Deployment training and familiarization?

I have made a larger that usual downward turn recently.  One reason is, I have quit fighting to stay normal.  I am now comfortable with myself and my disease.   There is no logical reason to spend energy trying to defeat a foe I cannot defeat.  I pray that God gives me an easy transition to Heaven.  That is my only request.

I have been having a rocky journey lately, because of the recent progression of this disease.  I am much more introverted and I stay alone as much as I can.  For instance, while I am in the living room with my Wife, she is watching politics on the Television and I have my Bose Noise killing Earphones on listening to Christian music.  George Jones, Vestal Goodman, Doc Wiseman, and other folks that appear on the Bill Gather tapes.  I am in my own, isolated, world, untouchable by the things that upset me, but still with my Bride.

Please keep your comments coming and I promise I will post as long as I can.  All of you are a blessing to me.  Thanks!!

Tuesday, November 10, 2015

Nights, and how they effect me

We shifted from Daylight Saving Time to Standard Time.  It gets darker much earlier and I get depressed, agitated, and grumpy, much earlier.  That early onset of my "Sun Downing" actually multiplies the effect because there is more time for it to act on me before I go to bed.  Then, I go to bed agitated, and that causes me to think negative thoughts that lead to difficult dreams.

I often get stuck in negative thought processes as I lay down.  Centering on things that might happen or actually have happened, that were or could be tragic.  I then get defensive, upset, and aggressive in my thoughts.  Not a good formula for restful sleep.

I have seen this increase recently.  So has my wife.  Short of more drugs, I do not see this improving.  I have written before about living in a Memory Support facility that isolates me from the outside world and controls my sensory overload.  That seems like a good, comforting idea to me.  Yet, I don't think I am quite there yet.  Soon, but not quite yet.  Yet, one of my nightly thought patterns is to run away from reality.  Either by hitting the road, becoming homeless, careless, and always on the move, or by moving into a facility that shields me from the things that upset me.

For instance, my Wife has the Republican Debate on right now.  Politics completely upsets and anger me.   Now, she should be able to watch anything she wants.  She likes Politics and wants to be informed.  I respect and defend that.  But, the fact is that I cannot deal with the tension, arguing, screaming, and tension of the Political Theater.

How do we deal with this?  I don't know.  But, I know as this disease progressives, I need to be isolated from things that aggravate me.  If we do not, I will loose control of my emotions and a melt down will occur.  I can write that now, not much later in this journey, I will act out this statement, without mental filters or emotional controls and that will lead to me being placed in a controlled environment.  More controlled than I would need if we took preventative measures now.

Just saying.

Friday, November 6, 2015

And another thing!!

The circumstances of my birth, and the fact that people, alive, with hold facts about my Father and Blood related relatives is a great source of frustration and pain for me.  I have blood related brothers and sisters that will not have anything to to with me, even though they have NEVER spoken to me or met me in person.

I know my Mother was pregnant out of wedlock.  That makes me a Bastard.  I know that.  It is not my fault.  My birth Father, Donald Andrew Dolence, of Cleveland Ohio and his parents, my Grand Parents paid my Mother $10,000 to go away and never contact them again.   never saw any of that money and did not know about it until I was 31 years old.  Hell, I never knew my Mother had 3 other children, out of wedlock after me.  Yet, she blamed me for; "sucking the calcium out of her body that resulted n her having bad teeth."  Her words, not mine.

Look, I was blessed to be raised by Mom and Dad Mills.  They did so without compensation and never had legal papers on me until I was 16.  They did a magnificent job raising ma and I will be eternally grateful.  I was a success because of God and their teaching.  But, I would truly love to talk to people actually related to me.

For instance, what health problems did my Father have?  After all, he died at 63!  I don't want they inheritance, as if the Dolence family has an inheritance.  I just want a chance to know them.

Before Lewy Body Dementia, I had a thin=ck skin about this, at least on the outside.  It truly has always hurt on the inside.  But now, I am raw with emotion about o many things. And this is one of the biggies.

I have a half brother, Donald Andrew Dolence Jr, of Westlake Ohio.  If you know him, have him contact me.  I tried and failed.  It is like I am a pariah or something.

You can see how things now get to me.  Or better, how I am now not filtering the things that ALWAYS got to me.  Good old Lewy Body strikes again.


Isolation may be the best place for me

More and more, the world around me infuriates me.  I hate the politics of mutual destruction we see played out on the national stage.  I hate the self-centered way Americans conduct their lives.  I am overwhelmed with anger at the combative attitude of so called minorities when they are in the presence of anyone they deem privileged.  Being out of my little retirement community is overwhelming to my senses, my moral, and my self-control.

Our country and in fact the entire world is in self-destruct mode.  People want a free ride, a hand out, and everything those who worked and sacrificed have earned, without ever lifting a finger or even having a thought about bettering themselves.  This world is broke and I just want to hide from it.

I think that I would be better off in Assisted Living or even a Memory Support unit, isolated from the world, free to live out my life in my own thought process.

Often, a Doctor will ask me if I am suicidal or homicidal.  I often wondered why that question was asked.   I am NOT either of these.  But, I can see where it could be a problem for someone not able to escape from all the issues when your mental capabilities and filters are not functioning properly.   I used to try to solve problems.  Now, I want to avoid them.  I think I will go to bed and hide.

Tuesday, November 3, 2015

Depression...all my dreams are gone

Every night, after the lights are out, and I am in bed, I go through my dreams of a survivalist, concrete home, on 5, 10, 20 acres of land.  Solar power, garden, chickens, independent, and then it hits me, I am never going to be able to do what I used to dream, and I get very depressed, upset, and unhappy.   What I wanted, I will never achieve, because of Lewy Body Dementia.

I guess you could say I am too old for those dreams.  But, 64 is not old!  But there is no way a man with rigid muscles, and a memory like a screen door, who cannot sensibly read, hallucinates, and has sight issues, can live the survivalist life.  I know that!!  But my dreams used to still be there.  Now, my mind tells me I am foolish to dream about something my mind and body cannot do.  So, these dreams have been taken away from me by the reality of LBD.

No pills in the world can help with this depression.  

Robin William's Wife tells all

Today, Robin Williams' wife discussed his struggle with Lewy Body Dementia on Good Morning America.  She is going to be on "The View" tomorrow.   This is great news for those of us with LBD for all the obvious reasons.   But there is one other reason that makes me happy.

What is that?  Well, maybe now I will not have to describe my disease to everyone who doubts that I have it!!

Monday, November 2, 2015

My Father in Law blazed the way for me!

I have written before, I think, that my Father in Law had Alzheimer's way back in the mid to late 1980's.  While his Wife was alive, he seemed, to those of us on the outside, to function OK for a man that was stone deaf!  She spoke loud, told him to do none thing a a time, and that seemed to work.

When she died, we all learned just how bad off he was.  The last five years of his life he lived either with us or in our vicinity.  We had custody of him and saw the later stages of the disease.

He was a tough old bird and he died of septicemia because the autonomic part of his brain failed and he is large intestine stopped pushing solid waste out of his body.

One thing I just remembered and the subject of this post is how his mind worked.  Every time we visited him, he would tell us how hard he was working!  I used to think; "Work, what work?!"  Now I know and now I understand.

I wrote before that my mind is always thinking, constantly running, on the thought pattern of; "I have to retire, I am working too hard, I need to put my papers in!"  Today, I realized I was in the same thought pattern as my Father in Law!!  He showed me what was to come for me so that I could understand it when it came!  Or better yet, God used Kurt to teach me what was coming and then brought it back to memory when my mind began to short circuit!  What a gift!!

To actually see the brain malfunctions of my Father in Law and then be able to apply that to my journey with LBD, lets me understand why I see life as I do and why my brain is doing what it does!

While I try to provide information others in recording my journey, GOD did the same for me, 20 plus years ago.  I cherish that knowledge and the path Kurt Herke blazed for me and now others that will read this post.

Thanks Kurt!

Note;  I would appreciate it if you would forward this post to anyone dealing with any Dementia.  Thanks.


Sunday, November 1, 2015

"WHY, did you do that?!"

OK caregivers, here is one of your most egregious faults.  Your LBD spouse has just done something out of his or her normal character.  It was really weird, or repulsive, or offensive, or immature, and your response is; "WHY did you do that!?!?" or "Don't you EVER do that again!!"

From the LBD patient perspective, my reply is; "What?"  Because I don't know the thing I did was wrong in your eyes.  I do not see things as I once did and I probably never saw them as your do.  So what if I made a hat out of the Church Business Meeting agenda and I am now wearing that hat.  What's wrong with that?

I do not do crazy things on purpose.  They just happen because my brain is short circuited!  I do not want to warn your wrath.  I have spent 43 years trying to avoid that pain.  So, please, give me a break and understand that I act foolish, silly, crazy, and odd, because I just do not know what I am doing or that what I am doing is offensive.

More reading issues

I was looking at the menu for tomorrow.  I was absolutely certain tomorrow entry that I wanted was Chicken Marsalla.  My Wife later looked and it really was Citrus Marinated Pork.  I saw the "C" and the "M" and my brain made Chicken Marsalla from that.  Many times, I look at letters and relate what the words look like, in my memory, to words I know.  I actually do not read the word.

I also notice this in Church where we display the words to the Hymns on  screen.  Many words I sing wrong because I think they are words they are not.  No issue in Church, I sing solo.  So Low no one can hear me.

Just the same, it is an indication than my brain is no longer processing things in a normal manner.  This illuminates the progression of my disease.

So, just another update, to keep you on track and help me keep track of where I am going.