Saturday, March 23, 2019

Tact Issues!

It has been accurately said about me, that I have all the Tact GOD gave me.  I have NEVER used any of it.  And, that is based in some fact.   I have always been an opinionated, loud mouthed, asshole.  Especially when I know that I am RIGHT!  A persons seniority. never made a difference to me.  If I thought they were wrong, I told them.  If they disagreed, I told them in a more descriptive manner!  Admiral, Senator, Captain of a Ship, if they were wrong, they got told so!  And, as I got senior in the Navy, I became known for Flame Spraying anyone who crossed me.  I can tell you stories that will shock some of you and make others laugh until you wet your pants.

But recently, I have really lost control of my social graces.  It occurs mostly when I am tired or overwhelmed.  And, I HAVE actually embarrassed myself, if that is possible.  The real point of this post is, I am loosing control of my emotions and the things that anger me come out, in flaming words that WILL make any REAL Fleet Sailor blush.

How do I or how can I deal with this issue.  Let's look at a few ways.  Don't get tired.  Don't get overwhelmed.  Don't talk to stupid people!  Don't leave the "Cabin"!  

No-one said LBD was going to be easy.  But up to now it was relatively easy.  Now things are getting tough and I need everyone around me to understand that.  But, they still don't.  Or at least I don't think they do.  But that may be me and not them.

Tuesday, March 19, 2019

One of the harder issues of LBD

As most of you know, I live in Assisted Living and my Wife lives in Independent Living.  We spend our days together although I am spending more time in The "Cabin" my Assisted Living hide away lately.    I moved into AL because of my agitation and anger issues caused by noise and people.  My wife is still very active.  She constantly had projects she is working on and is up until all hours of the night.  She loves to have the Television on, just for the background noise.  She is up and down, walking or pacing all over the apartment.  It is how she thinks and relaxes.  As my LBD progressed that caused me issues. Coupled with the noise of people having parties in the hallway outside of our apartment, and other issues I have discussed in the past, my Medical team, the Azalea Trace management, and my Wife and I decided me moving to AL was a necessary thing.  That was a year ago and I believe it was good for me and her too.

However, today, as we were taking our daily exercise walk, she opened up about how me spending more and more time alone in the Cabin has impacted her.  She realizes I need that time to maintain my composure and mental health.  But, it hurts her to have me leave in the early afternoon and not return until after dinner.  Now, I am not out drinking, I am asleep from 2 to 4:30.  Then I eat dinner and take my night pills and return to walk with her and watch some television.  Then, I leave again between 7:30 and 8 PM..

I need and enjoy quiet.  I seldom have the television on in the "Cabin".  No radio, no music, just quiet and Solitaire on the IPAD until I am tired enough to sleep.   Of course, since I moved to The "Cabin" I have not chased any Security Guards down hallways yelling and cussing at them for being incompetent nor have I PUNCHED any delivery personnel for speeding on the Campus!  But those positive issues do not mitigate the fact that I am away from the woman I love so dearly.

She has the most difficult part of my disease,  She is watching me fade away bodily and mentally.  I cannot do what I once could and  am a shadow of myself cognitively.  I search for words, forget my points in conversations and constantly talk about the past.  I am moody, angry, and pretty much useless as a husband.  Yet, she treats me with loving kindness, tries desperately to understand, and is always looking for ways to make my life easier and more fulfilled.

We communicate constantly about the issues of this LBD journey.  And every time we talk, I feel her hurt.  I wish I could help.  This is the hardest part of my disease.

Lewy Body Dementia is a TERMINAL Disease!

There, I said it.  LBD is a Terminal Disease.  Let me explain.  I am never going to get better or be cured of LBD.  It will only get worse and it will lead to my death, sooner rather than later.  Yes, most LBD patients die from aspiration.  The second most probable cause is becoming Septic or septicemia.  But, both are caused by LBD.

Why do I post this?  Because in the last couple of days, I have been run over by this TRUCK numerous times.  It is now a weight around my neck.  Yes, I have written about this before in one manner or another but it is in my thoughts all the time now.

My heart rate is wacky.  My heart POUNDS in my chest on occasion. I have difficulties breathing sometimes.  I get dizzy when I lay down or look up because of orthostatic hypotension.  My body parts are different temperatures, i.e.  my right hand and arm are ice cold and the rest of my body is hot.  My vision becomes tunneled from time to time for no apparent reason.  All of these symptoms can be traced to LBD.

There is no denying it, LBD is getting worse and more challenging and IT WILL WIN.  All the drugs in the world will not stop this relentless disease.  Therefore LBD is a Terminal Disease.

Now, how I deal with that truth will define me for the remainder of my days here on earth.  I try not to let LBD define me but that battle is a difficult one.  It is like saying I am not a Master Chief Gunner' Mate or I am not a follower of Jesus Christ.  More and more, I am overwhelmed by the reality of LBD, just like many of you.  As tough as I am, as hard headed as I am, as determined as I am, I was not ready for this outcome.  And truthfully, I don't know how the rest of this journey will go.  But, I will still trust God.  I know he has plans to prosper me and not to harm me.  That will keep me going.

Sunday, March 17, 2019

It appears Effexor has won..

My third attempt to rid myself of the prescription poison called Effexor has ended in defeat.  I have written before that a doctor who called himself a neurologist in Pensacola, who has an orange bill for a mouth and white feathers on his body, has me taking 240 mg of Effexor a day!  My present Neurological practice reduced me to 75mg a day. Recently on the advice of another doctor, I tried to get completely off Effexor.  As I was told to do, and as I described to my Neurologist practice, I went from 75mg to 37.5 mg per day for three weeks.  Then to half of that a day for another three weeks.  All without any side effects like Brain Zapping.  So, I thought, I could stop Effexor all together and that is where the wheels fell off the cart!  Brain zapping and other side effects took over.  I went to 9mg a day and then back to 18 mg per day and the brain zapping reduced but stayed with me.  I contacted my Neurologist practice and they directed me to go back on one pill, 37.5 mg, a day.  They told me I may not be able to stop Effexor, ever.

No doctor practicing medicine in the US should be able to prescribe a medicine for a patient that they cannot get off !!!   

The side effects of Effexor for me are terrible.  Furthermore, it does not mitigate my depression.  In fact, it makes m Depression worse!!

But, it appears, I am stuck.

Sunday, March 10, 2019

These emotions are RAW and REAL!

What I posted yesterday was real time!  I wrote exactly what I was going through, without filter.  That is my promise to myself and to you.  LBD hurts, physically, cognitively, and more importantly mentally!  I am hurting mentally right now.  Thank GOD I have a scheduled appointment with my long time Psychologist tomorrow.  I believe that will help.  At least I hope so.

But, I also know we all get abandoned by family and friends.  Look, we are no longer fun to be around. And then there is my need to have a quiet life in the cocoon I have created, on purpose.  I moved to My Cabin, (Azalea Trace Assisted Living) to prevent me from hurting someone.  I had already punched the FEDEX man for speeding on the campus  and chased the security boys for not doing their job in a professional manner, and I knew it was going to get much worse.  So, I escaped to my own safe room!!  But, that only keeps others safe when I am doing really bad.  I am still getting punched and kicked by my own memories, failings, and emotions about how my life has changed.  And many of you have the same issues or if you are a caregiver, maybe you can see your loved one in my description of my emotions.

I am broke physically and mentally.  My Wife does a great job trying to keep me functioning and trying to smooth out the ruts in my life. I could NOT ask for more from her.  In the beginning, when we were first diagnosed, she pushed me to be as active and normal as I could be!  I often revolted against her pushing.  But, she was right and it helped me.  Now, she recognizes I need quiet time, alone time, seclusion when I am having a bad day or more.  She really is a blessing to me.

I said yesterday in my post it might be time to retreat.  Don't think I have not given that possibility a lot of deep thought.  I am tired of fighting this battle, knowing it can't be won.  Yet, I still find the strength, through Jesus, My Lord, to go one more round.  But I do not go on with my own strength, but His.  I am spent, completely.

Saturday, March 9, 2019

It may be time to retreat!

I am having a BAD night!  I had Zeus over to the cabin tonight and he demanded more attention than I wanted to or could give him.  He got a swat on the butt and taken back to Linda.   She and I discussed my mental issues and that helped me immensely.  But, I am now STILL dealing with my anger and depression.  I  told her and I will now tell you, I have spent my life having people use me, and having people PISS down my neck and tell me it is raining.   Most folks dd not like me, but I was valuable to them because I am talented dedicated and smart,  so, they used me to accomplish their goals, they looked good, they got the awards, and they threw me away, like a piece of garbage.  My Division Head at MARMC, George Cox, was very good at using me for HIS benefit!!  The only person in my life that I can really say is in my corner, is my Wife.  Yes, I can also count on Jerry and Marcia.  But truly, that is it.  Sorry if you are not on this list.  And yes, many of you helped me move many times, helped me do a roof, fix plumbing, remove skylights, fix cars, etc.  But, I did the same for you.  So, we are even.

I am in Florida, against my will.  I was taken here on false pretenses,  I know I cannot move back to Virginia for numerous reasons.  But, I am still a prisoner.  I get visited once in a while.  But, Linda is my only source of comfort and compassion.

I am constantly bombarded by my past failures.  The circumstances of my birth and raising.  Even my failures in my Navy career.  I seldom feel like I succeeded at anything and I seldom feel truly wanted by anyone except my Wife and Jerry and Marcia.  No one, outside of those three individuals try to understand how I feel or how LBD has impacted m life.

I have had so called Doctors tell me I am not sick.  People that do not know me, tell me the same thing. But I am overwhelmed by what is happening to me and I am quickly becoming unable to cope with these issues.

One of my favorite mental escapes is to mentally build my Concrete Survival home.  I have doe this man, many times.  But not, halfway through the mental constructions, I heard run my mind;  You idiot, you can't do this.  You can't even drive!!  You are broken and dependent on everyone for the simplest daily issues.  Even my brain has deserted me.

I know I am where I will be for the remainder of my life.  I have no control over anything.  This is not how I thought things would be.  But, it is what it is.

Thursday, February 21, 2019

I look perfectly normal from your view..BUT I'M NOT

I wish I had a dollar for every time I heard that.  There's nothing wrong with you!!  You're perfectly fine!  Well, no, I am not.  But I put on a great show!!  Women fake orgasms all the time, I am told.  And Dementia patients "FAKE" normal all the time!!  I know this for a fact!!

But inside, we are frightened, angry, lost, confused, and unsure of ourselves.  Furthermore, we feel we cannot trust you, to tell you, how we feel and what is going on in our brain!  That's RIGHT!!  We don't trust you!    The doctor, the psychologist, our kids, our spouses, our friends, our caregivers, the neighbor, the people we worked with,  No one!!  Why, because you keep telling us we have nothing wrong!!

Look, personally, I trust my Wife, and my friend Jerry with everything I feel and experience.  I tell them, express my insecurities, fears, emotions.  They listen and try to understand.  But, I do not tell anyone else all of the truth!!  It is like going to the dentist.  He asks you;  "Do you have any problem areas?"  Nope, everything is just fine!!  In other words, if you can't find it, I'm not telling you!!

And yes, I have posted many personal issues on this forum.  But there are issues I have NEVER discussed.  Because sometimes, I get replies telling me I am a fake!  Which is what people say when they say, you look, sound, act, write, perfectly normal.   So, as a defensive measure, I close up.

Here at Azalea Trace, many residents have told me, in no uncertain terms, that I am a fake!!  Even residents of Assisted Living.  Yes, I had female pastor, (There is no such thing!)  that I was a fake!!   She said she knew how to diagnose Dementia and I did not have it!!  Well, I know how to identify compassion, and observing her interactions with the folks here in Assisted Living, She is a fake!

Just the inner fear Dementia patients experience is more than can be described.  I see it in my Wife as she deals with what her future will surely hold.  Many times at night, when I am alone, in the quiet of my Cabin, I realize this is it!  I will never get better, only worse.  I will never drive again, do anything independent again, or make my own decisions again!!  That reality hits me in the face like a cement wall at 100 miles per hour!!  No helmet, no air bag, just me and the wall,  BANG!!!

And yes, my LBD has progressed slower than some others.  I credit my Neurologist in Virginia, Dr. Bowles, for her quick action in my car.  She used treatments that were previously reserved for mid or late term LBD to slow my progression.  A Neuro-Psychologist here in Pensacola recently told me I would NOT have receive tat good a treatment here.  I obviously was blessed!!  Praise God!  However, the LBD is getting worse and my ability to act normal is no longer sufficient to cover that up.

Linda and I face some very emotional times.  Every Dementia patient and their spouse do the same thing.  So, instead of playing doctor,  try to be empathetic and sympathetic!  It will help us and make you look like a nice person!!  Even if you are not.