Sunday, July 24, 2016

A step too far

My Wife and I have just returned from a two week, automobile trip, to see the Ark, my sister in Cleveland, and my Wife's 95 year old cousin in Iowa.  To say that almost 3000 miles in the car was tiring would be an understatement.  But keeping myself in a near constant state of "Showtime" was far more demanding and is taking a far greater toll on my mental and physical state.

The "Ark" is a fabulous reproduction of Noah's Ark.  It just opened 7 July and it is still a work in progress.  But the "Ark" is complete and mesmerizing.

From there, we drove to Cleveland, a 4 hour drive up Interstate 71.  When we got to my Sister's home, she was not there and was not answering her cell phone.   As w looked around her home for a clue, the Landlord came out and told us she was in the Hospital.  She got sick at a restaurant the frequent and was taken to the Hospital.  She and her older Son thought it was he "sugar" but it turned out to be a bad, newly found, case of colitis.  She stayed in the Hospital for all of our visit and a total of a week!  She is now home, with visiting nurses and home rehab.   We did have a good time with my Nephew and his wife.  It was great to catch up with them.

So, we left for Iowa, a two day drive across Interstate 80.  At this point, I should tell you, my Wife did all the driving!!    Her Second Cousin knew he Father when he came to America from Germany in 1927.  He worked on her Father's farm and then joined the U.S. Army.  This Cousin is 95, till lives alone, independently, with some great help from her neighbors, but cooks, cleans, shops, and goes to Church every week!!  Some of the other cousins came over on Wednesday and we had a good time.  But, during these times like in Cleveland and in Iowa, I was constantly trying to be "Normal".  On the last day in Iowa, I was all out of "Normal" and became very abrupt, grouchy, and hard to deal with.  Friday morning, a day early, we headed home, a three day trip!

This entire trip started as a trip to the "Ark".but grew because, as long as we are there, we should visit my Sister and then the Cousin.  We both knew this would be a step too far, but we had to do it.  Both of the relatives we visited we had not seen in 2 years and they are in no shape to travel.  So, we tried it.  And now, for the rest of the story.

I am beat.  I am disoriented. I am angry and frustrated.  I am having great difficulty controlling my emotions.  My mental capabilities seem to be not working too well.  I cannot find the right words, but the most entertaining part is how my depth perception is effected.  Every time a car got close to us I screamed, squirmed in my seat, told Linda to "look out", and in general, I was very uncomfortable.  As for my wife, she thinks I am a bad passenger!!  She's right.

Another issues in my 13 year old poodle, Marcel, is very upset over me being gone.  He is moping, won't eat, and is depressed!  Believe it or not, his coat is not entirely gray!!  I did not expect this impact on him.  The 15 year old female, Cherie, is doing well, but Marcel is a basket case and I am worried I may loose him.  I am actually forcing him to sit with me instead of in his dog bed.

All in all, I wish I had not made the trip.  It was way too much for me.  And it has been stressful for my Wife.  Let alone the fact that she is waiting for the other shore to drop with me.  She is watching how I react, and how I recover from the trip.   Again, I should never have made this trip.  We should have gone to the "Ark" and back.  Or maybe, no trip at all.    

I think, no, I know, this will be my last trip.  We saw, while they are still alive, two relatives that are precious too us.  The reality is, I cannot travel and return the same as I was when I left.   That is the reality of LBD and any other form of Dementia.  I need to be in my safety net, my cocoon, for my mental and physical well being.

Thursday, July 7, 2016

The reality of LBD verses someone's desires for my lif

People tell me;  You are doing very well and you will live another 15 or 20 years!  When I know, and anyone who understands LBD, I am not going to live 5 more years!  And your telling me I will live 20 years will not make it happen and it only angers me.

Let's look at the facts.  If I did live 10, 15, 20, more years, what mental and physical shape would I be in?  I need/require a cane to walk now.  My legs refuse to move when I first get out of a chair.  I stumble and fall.  I wet and soil myself from time to time.  I choke on saliva, food, coffee, and air!  I don't know what day it is.  I am unable to have sex.  I have no interest in anything.  So, why would I want to live 20 more years?  Just because YOU want me too?

Every night, I confess every sin I can think of.  Why, because I am not sure if I will wake in the morning.  Every night, I feel like it will be my last night!  And I am OK with that.  I have actually prayed for God to call me home, soon.   I do not look forward to fighting this fight indefinitely.

I understand the desire to have those we love with us as long as we live.  How many of us wish our Mom or Dad were still alive?  Or an older brother, a Shipmate, or a long time friend that died, too early for our planning.   But if that loved one had a terminal disease, what was their desires?  Live or die?  I miss Mom and Dad, but they had cancer and the pain and suffering were rough on them.   So, death stopped their suffering.

I am now beginning to suffer, physically and mentally.  And that is only going to increase, not decrease, no matter what your selfish, well meaning, wishes are for me.

Instead of hanging onto unrealistic desire, why not try to help me now, to enjoy the days I have.  That is the best wish I have.

Tuesday, July 5, 2016

I continually learn more about LBD

Today at lunch, I choked and aspirated.  It was a minor event and I got through it.  I also had a very heavy feeling in my chest, like my esophagus was clogged.  This frightened me and I started to look for an answer.

One of the other bloggers had the answer.  In their posts, I saw the word "Dysphagia".  I did some research on that word and "Bingo"  I had the answer.  Chocking, unable to control food or saliva in my mouth, heavy feeling in my throat, aspirating, all things I have and have had for a while.  So now I know.

I have an appointment with my Neurologist sometime this summer so I will bring this up to him.   Since this is a later term LBD issue, it fits with the position my wife and I believe I am at in the progression of this disease.

This is a degenerative, neurological disease that leads to death.  I will not get better, only worse.  Everyone should know that.  I do.

Monday, July 4, 2016

Lost, in my own home

I just woke up from a nap, and I had one of my upsetting dreams.  I was lost in a large, never ending, always changing, apartment complex.  There were no particular threats, but I was carrying a large, heavy box of ammo.   Every door I went through took me t a different climate and landscape.  It was upsetting and unnerving.  I woke up abruptly because my female miniature poodle, now 15 years old, wanted out and wanted company.

Now, with my wife up, I still feel lost and unconnected from my own apartment.  Everything is where it is supposed to be, but it is unfamiliar also.

What does this all mean?   Got me.  My wife is busy planning a trip we are taking in 12 days, so that may be part of it.  Whatever it is, I am upset and unsettled.

Sunday, July 3, 2016

Turning inward

Last night, my Wife and I had a very good, productive, honest discussion about where I am and where I am going in my LBD journey.  She said, and after some reflection, I agreed, that I have now turned mentally inward.  This categorically documents a serious progression in my disease.

Not only do I NOT want or seek outside activity or contact.  I am overwhelmed and agitated by outside contact and activity.  I am only comfortable within comfortable, familiar, surroundings, and only when socializing with people that I consider safe and comfortable.

For instance; Riding in the car, in city traffic, is terrifying to me!!  I flinch and jump when cars come close to us or cross our path.  I urgently instruct my wife to STOP for red lights, well before we arrive at them.

Also, I need to be with people that I don not feel a requirement to "Act Normal" with.   Trust me, that list is very short.  Yes, I still "Show Time" or at least try to, when we are with people or I pass people in the hall.  I try to put on a "Happy Face" for others.  Especially since they tell me I am not sick anyway!

I truly do not care about the world around me.  When I think about the present world, I get very angry and upset.   I do not like change and that is the theme of our world today.

Again, this inward turn is something I know would come, but to be told by the one person I trust and KNOW  has my best interest at heart, made me see the change.  It shook me at first, but after our conversation, I now understand where I am and where I am going.

From now on, I will turn more and more into myself mentally.  I already have many, out loud, conversations with myself.  In these inner discussions, I present both arguments, passionately.  I then come to a conclusion, that may or may not be based in reality and fact.  That conclusion then has the weight of reality!  And it remains with me as a fact.

It has been a rough couple of weeks, or months.  The fall seems fast and precipitous and I have not found a place to grab on and slow my fall.  There seems to be no one or nothing for me to grab onto for help.  Much like those childhood dreams of falling when you were asleep.  Falling and falling, but never stopping until you awake.  But I will never wake up!  I know that now.  Just falling.

Saturday, July 2, 2016

Dealing with life...

I have tried to stay connected with life.  I interact with people on the Internet and in person.  I write two active blogs and address issues that impact me and my Navy career.  I have done my best to stay current, involved, and dedicated to what I believe in as a Christian and as a Warrior.

Recently, it has become very evident that my mental filters are negatively impacting my ability to interact with people in a polite, respectful, manner.  Linda and I knew this was coming and we knew my experiences with LBD were getting worse.  It is apparent i many ways but socially, it is very apparent in how I react to situations and things people say in person, on the Internet, and on the television.

You may know that I no longer watch politics or most news shows.  The impending death of America is too difficult for me to deal with.  Many times, people say things that I react with more anger and fire than I should.  But, the mechanisms that used to control my emotions are now broke.

I can also see the stress on Linda as she tries to deal with the progression of my disease while keeping me as involved in life as she thinks is good for me.  This is always a changing situation.

Even the way I react to the normal actions of our aging miniature poodles is different.   Their needs for food, going out, or licking, constantly upset me and stress me.

I am no longer he self-confident man I once was.  Instead, every noise, every motion, darkness, even conversation, impact me in a negative way.  It is not that those things are different of directed at me in a negative way.  Instead, it IS how my LBD effected brain is processing those stimulants.  And this is where I am having terrible issues.

I honestly never expected this to be as bad as it has become.

So, what happens next, is a mystery.  And while I used to say the changes of LBD were interesting.  I now know they are frightening.

LBD Friends

I received a comment from a dear lady who has traveled the complete LBD journey with Her Husband.  She wrote an exceptional Blog describing all the events and emotions of that journey and we all owe her debt of gratitude.  I wrote a post about the Angst of my journey and she replied with her sentiments that reached my heart.  When I am at my lowest, I write, and someone is there to help me.  I love this community and the beautiful people that make it special.

Thanks Kathy!  I pray you are doing well.