Wednesday, December 30, 2015

Rough Christmas season!

I never have done well during the Christmas Holidays.  This year, was even worse.  Maybe the most difficult Christmas of my life.   I have been deeply depressed and upset.  I thought I was going to be OK and then my Sister called on 23 December and tole me our Brother was in the Hospital and not expected to live.  He died Christmas Eve morning.   He and I had just reconnected recently because his Wife is dealing with Stage 4 Cancer.  He and I had some great, loving, supportive, conversations.  I even had an opportunity to talk to him about Jesus and the relationship required with Him to go to Heaven.  I am sure he was Saved and I am sure he is in Heaven with Jesus, right now!  I miss Him and I know his family does also.  But, knowing this is a comfort.

My childhood memories of Christmas are not the sweet memories most children have.  Why, is not important.

I have been so upset, I made an appointment with my Psychologist for this Monday.  Also, I have tried to write this post a number of times since Christmas.  But it is difficult to describe how I am doing or why I feel like I do.

Before LBD, I had defensive ways to deal with this time of the year including heavy drinking.  But now, I do not drink, I pray.  And now, the disease has taken away my defensive ways and I am stuck thinking about the things that bother me, almost 24/7.   When I go to bed, my mind goes to the past, the difficult times, and where I am now, dealing with LBD.  Then, my mind goes to ways to run from this situation, but to where, and how.  I cannot logically deal with my emotions.

I do not see a future for me.  Well, except....

Tuesday, December 22, 2015

Holiday stress equals Holiday deaths!

I saw a statistic that more people die during the Christmas- New Year Holiday that any other period of the year.  Stress is a major contributor to that statistic.  But, it is even more difficult for those who have Dementia of any type.

I have never enjoyed Christmas.  Even as a child it was terribly painful for me.  Not that I did not get many wonderful presents.  But that I always was aware that I was the only person in the room with my last name!   No one had to say that, I knew and it hurt.

I have never recovered or dealt with that pain and it had carried on through my life.  Now today, all my depressing thoughts are magnified by the LBD!   Then there are the new mental "boogie men"  that haunt me all the time.  Things like noise, the direction of our nation, my wife's compulsive nature, financial issues, and all my failures of the past.  Then there are the memories and thought of those who have gone on before us.  Our grandparents, parents, friends, shipmates, and school mates.

So, while stress is always with my, it is magnified manifold during this time of the year.  That super multiplied stress can be reflected in higher blood pressure that can lead to strokes and heart attacks.

Then there are suicides.   People with Dementia's of any type are much more susceptible to the mental breakdown that leads to suicide.   The hustle and bustle of the Christmas-New Year Holiday period is crushing for those with normal mental coping skills.  For those with Dementia, and I speak from experience, the hustle and bustle is crippling!  

The other issue is that those without Dementia DO NOT UNDERSTAND what the Dementia sufferer is experiencing.  They bang and clang around, pushing their own agenda without respect or consideration for the one who is unable to deal with all the confusion and drama.  And, since those of us with Dementia, or at least me, are always trying to control they emotions because if we loose control, we will end up in a facility that limits our freedom to what we take in or coffee, we don't say anything about how things are impacting us, until we either explode or retreat into our safe room, whether that is a real room or a mental breakdown that leads to social withdrawal.

While I have not discussed this with anyone, and I do not want to either, I am experiencing issues with dealing with every one's personal agendas and drama.  Look, if something does not go exactly right, the world will not end.  Everything is fixable.  So why stress about things!  Your stress makes me incredibly upset, and I hold that in!

I have said before that I had entered the Second Half of my LBD journey.  I need to add to that and tell you I am late in the Third Quarter.  Linda and I have seen a number of changes and symptoms getting worse.  I am experiencing more instability.  My emotional roller coaster is not off the chart.   Even though she sees and observes these changes, and she does understand them, the still lives in denial!  She loves me and wants me to be me, forever.  To think in any other manner for her is inconceivable.  I love that is her and I understand her emotions on this.  But, the truth is the truth.

So, while this is a bumpy, depressing, time of the year for me, this one is exponentially worse.  I am not surprised.  I expected this.  But, that does not make is easier for me or Linda.  

I don't know what else I can say.

Saturday, December 19, 2015

A quilt of love!

My Daughter in Law, her Sisters, Janie and Suzette, and their Quilt Guild here in Pensacola honored me with a Veteran's Quilt today!  The quilt is simply beautiful, perfect, and I am sure it will keep me warm.  But, their unselfish, loving actions, the thoughtful presentation, and their warm smiles and hugs, will remain with me, strengthen me, and cheer me, all the days of my life and I wish to be buried with that quilt when the time comes.  Simply said, what they did for me means that much to me.  No words can ever express my gratitude, love, and admiration of these ladies, especially Juliette, Suzette, and Janie.

Today was a very special day!

Friday, December 18, 2015

Who is there to help me?

Since we retired, we have had a steady run of income reductions caused by the Federal Government.  For instance, OPM overpaid me for a year.  I kept telling them, but to no avail.  Then, THEY discovered the overpayment and all the sudden I was a dirty no good!  They docked me half of my reduced to normal retirement pay for three years!

Last year, we moved into Azalea Trace.  It is a continuing care retirement community to provide for our future health needs.  We took the entrance fee money out of my IRA.  That counts as income, so, this year, we have to pay $700+ more in Medicare Part B payments because we made too much last year.  I appealed, stating that it was a one year spike and provided the required documentation.   The Social Security Administration said, tough!!  You have to pay the $700 increase!!

Then, there is my ongoing appeal with the Veteran's Administration.  An appeal that will most likely never end.  Or, will end without me going the compensation I believe I deserve.

So now, out monthly budget is in shambles!  And I am upset, depressed, and overwhelmed.  There is no representative to turn too.  Our Congressman is worthless.  His name is Miller and he has yet to help me in anyway or even answer any questions I have sent him.

And before you yell at me, I have committed this to the Lord in Prayer.  Much Prayer!!  And I totally trust God to provide for us.  In the past, God has enabled me to make the way ahead.  Promotions, pay raises, extra jobs.  Now, I am helpless!!  I cannot go get a part time job, or ask for a pay raise.  And the President has decided, through manipulation of inflation numbers, to deny us COLA's on Social Security or Military Retirement.

This is a difficult time for us, and for me specially.  I am at the weakest I have ever been in my entire adult life.  So, I am upset and lost.

Still, I trust God for everything.  So, I will rebound.  One way or the other.

Thursday, December 17, 2015

My measure of decline

In any endeavor, it is imperative to have a measure of success.  Sports teams have statistics like Batting Average or Win/Loss records.  It is good to measure where you were and where you are now.  It is the same in the journey with LBD.  But, I find it difficult to quantify the progression of my disease simply because I don't remember even when this started.

Yesterday, the Staff Chaplain asked me to stand in for him at his Thursday Bible Study.  He has been dealing with an upper respiratory infection for ten days now.  Naturally, I said yes.

In my preparation for that Bible Study, I was looking through some of my past Sermons and Bible Study notes.  I was shocked at the quality of studies I produced two years ago.  I know that because I always date my work.  The two year old studies were very well written, researched, and organized.  Surprising to me, they look scholarly!

Compared to what I produced for last Tuesday's Church Service for the Skilled Care folks,  my writing and research skills of today are child like!

I have not ever done a comparison of my Bible study work.   But, this look back clearly shows the progression of my disease on my cognitive processes.  The work of exactly two yeas ago is organized, concise, and logical.  What I did just this week has no flow and reaches no apparent conclusion.

I would have never though of doing this comparison.  It happened because of circumstances but to me, it is a very valuable measure of my progression in my journey with LBD.  I realize exact measures are difficult in Lewy Body Dementia due to the sine wave progression of the disease.  Yet, this comparison clearly shows a negative direction in my cognitive skills.

It also upset me and frightened me since I now can see clearly, where I was and where I am now.  In addition, it casts a dark shadow on where I am going and how fast I am going to get there.

Wednesday, December 16, 2015

The highs and lows of Lewy Body Dementia are maddening!

Today, I have experienced gleeful emotional highs and now that the sun has set, gloomy, deep, depressed, emotional lows.  It is interesting to experience when you are experiencing an emotional high point.  When you feel like you are almost firing on all Eight Cylinders!  You feel great.  Life looks good.  You even make plans to have fun, visit someone, or do something you like.  Then, the pendulum swings and you are stuck in a pool of doom and gloom.  You do not want to do anything, talk, or be around anyone.  Noise is cutting, and you have difficulty finding the strength and energy to go on.

Many times, when I am experiencing the lows of LBD, I hide in bed.  The darkness of the room, the comfort of my bed, the warmth of the covers, make a cocoon to hide in.

Also, during these low times, all the other issues that LBD causes are worse, brought to the forefront, and amplified.  Tonight, I am having great difficulty focusing on anything.  I am foggy, disconnected, and unable to focus.  My leg muscles are sore, stiff, and my mobility is impaired.

As I wrote earlier, this morning I was very disconnected and had in my mind that I needed a telephone number to eat Raisin Bran.  Then the day got better and I was pretty much OK.  But now, I am again confused and conflicted.

This, in my opinion, is the most drastic portion of LBD.

Friday, December 11, 2015

Filter Failure!

Today, a very left will, liberal, progressive, member of our retirement community, who has NEVER had a job except academia, questioned me about gun control as related to the Presidency.  I calmly educated this single minded slob that the Founding Fathers put the Second Amendment into the Constitution to ensure we were citizens and not subjects.  In other words, if the President went off the tracks the populace would be able to dethrone the self imposed king.  I also educated him on the way the Founding Fathers did NOT include "Obey the orders of the President of the United States.." in the Military Officer's Oath of office but did include that in the Enlisted persons Oath of Enlistment!  The reason is the same as the reason for the Second Amendment.  They wanted the "Landed Gentry" that were and are the Officer Corp to be able to dethrone the self imposed king without violating their Oath of Service.

He then brought this, up to then civil, discourse to dethroning a President Trump!!   I said it applaud to any President including the current President.  This mindless follower of the Socialist Party named  the Democrat Party, then went on to repeat all the talking points of how Great the Muslim Emperor is!!

That was when my social filters failed, BIG TIME!!  We were in the pharmacy and the lady who staffs the pharmacy is a wonderful individual and a good Christian lady.  I did everything I could to control my profanity.  I am not sure if I succeeded because I was in a blind rage.

I spent 40 years of my life serving our Nation, doing whatever the Country's Leadership told me to do.  I offered them my experience, my opinion, and my abilities.   But, after the discussion was over, I did what I was told.  This pies of garbage did nothing for this Nation and has poisoned the minds of many young people.

But moreover, I am very tired of the direction the Puppet Masters behind the curtain are taking our nation.  I believe the majority of Americans are silent about how they think the nation should move.  And their silence permits this takeover of our country by individuals whose only desire is to turn this nation into a Socialist prison where only those in power live a good life and the rest of us are enslaved SUBJECTS to them.

Furthermore, I am tired of being quiet over my disgust!!  So, that coupled with my disdain for this jerk and my filters failed.  It took ,e three hours in bed this afternoon to even get me to a point that I wanted to get up or talk to even my wife.

Now, to the LBD issues.  I am loosing my ability to suffer fools and someday, very soon, my filter failure may be be even more drastic.  I try not to watch or listen to politics on the television but my wife insists on watching politics on television.  So, she is causing some of my issues.

I have always been a fiery, hotheaded, loud, individual when it came to subjects I where I was passionate.  I have a very sharp division between  right and wrong.  And I will fight to ensure what I believe is right will prevail, regardless of any loss I might suffer.  But, I also had the ability to curb my actions and statements when I knew other would be harmed by my actions.  Now, that filter is not there.

Maybe I will move to a small house on a big piece of land and be a hermit!

Thursday, December 3, 2015

What I learned from Robin Williams

I wrote before that I read the article in People about Robin Williams' death as described by his wife.  She said he was having great difficulty  dealing with his perspective that he was loosing his mind!

I can identify with Mr. Williams on that point.  So many things have happened to me since I was first diagnosed with Lewy Body Dementia.   For instance, the incident when I was dreaming I was in a fight and I hit the fellow I needed too.  It turned out I hit my Wife, and drove her across the bed!!  Thankfully, she had her back turned to me, so I hit the back of her head!  It could have been much work.  That was caused by REM Sleep disorder caused by the Lewy Bodies messing with that portion of my brain that paralyzed me when I sleep.

Hallucinations are another symptom that are difficult to deal with.   I tell people I use my miniature poodles as my Hallucination Checkers.  If they do not bark, I do not worry.  But, truly, each hallucination bothers me because it reinforces my belief that I am loosing control or my mental functions.

Nothing in my life is as it was before LBD!  For instance, I do not drive any more.  We finally gave in and applied for a Handicapped Parking Permit.  I have difficulty finding words and conveying my thoughts.  I have stability issues.  The fun things of life are gone because either I cannot do them, or I do not want to do them.

I used to be a self assured professional who had the answer to most things.  I was in charge during very dangerous times with live ordnance on Navy Ships.  Now, the most dangerous thing I do is pass gas!!  Trust me, that is a brave thing to do for me.

Another issues in the thoughts that permeate my mind.  My thoughts move from Navy, to survivalist, to Assisted Living.  I can never keep a single thought in my mind, especially in the evening.  I truly do not have control of my thought process.

I have written before about the anxiety, anger, depression issues.  They also illustrate how LBD has taken over my mind and my life.

Mr. Williams decided to end his life because he could not deal with the loos of mental control.  I do not believe I will take that course.  Instead, I want to see this disease to the end, just because I am still interested in how this turns out.

Just the same, the loss of everything in my life that represented what and who I was has shook me to my core.  So, it appears Robin Williams and I were impacted by the same issues.   We just decided to take different paths to deal with them.  Sad but interesting.

Tuesday, December 1, 2015

A week in the Doctor's office

This is my week of medical appointments made longer because my neurologist just woke up and found out I have Lewy Body Dementia and I have Stiff Legs!!  I saw him on Monday.

He was amazed at how stiff my legs were and how that stiffness causes me to walk with weird leg movements.  So, he has ordered an MRI to determine if there are any physical reasons for my stiffness and weird walking gait.

I could save him the effort and my insurance companies the expense of this MRI by telling them it is the disease that causes this.  If it were physical or skeletal it would have broke by now!  But, medical science is enamored with their electronic devices and so are the insurance companies.  So, into the tube I go, on Thursday!

Then, today I saw my GP, who I really like.  She truly cares about me and for me.  This appointment was a normal, 3 month check up.  All my blood work looked good, and we mostly talked about the progression of my LBD.

We spent a long time discussing the impact of anxiety, depression, and the feeling of being worthless that I deal with everyday.  I had read an article in People about Robin Williams and how Lewy Body Dementia impacted him.   In the article, his wife said he was afraid he was loosing his mind!  He was always suffering from anxiety and depression.  He saw hallucinations and had difficulty discussing his issues and the world as he saw it.

Heck, that is how I feel everyday!!  But, it was enlightening for me to read what he experienced and knowing that he and I walked the same path.  Robin Williams committed suicide n=because he could not deal with his issues.  I understand that.  And my GP went to great ends to explain he had mental issues all his life.  I know that.  So have I.  But I don not intend to commit suicide.  Just the same, as a person without faith in God, what did he have to loose except a tortured existence.

Oh well, tomorrow, I have nothing to do,  Thursday it is in the "Tube", and Friday Azalea Trace will keep me busy.  I think I need to go back to work to get some rest!