Monday, May 30, 2016

How my memory works now

I have written before that I once had near total recall.  Especially for technical items related to the Navy.  I was known for that ability in my Rating and it served me well.  Bt now, my memory is totally different.

I reality, I have two memory systems.  The past, where I spend the vast majority of my time, and right now!  

I live in my past memories most of the time.  I spend most of my days and nights thinking about my Navy experience.  Or, I am reliving my youth.  I still have very vivid, detailed memories of the events of those times.  In may cases, I still remember specific technical issues from the Navy and events that occurred.  The times of these events are shrouded in fog as are some of the people's names, but the events themselves are still mostly clear.  However, they are fading slowly.

The second memory tier I have is "right now"!  Right now is more of an existence rather than a memory.  If you ask me what I did yesterday, I have a difficult time recalling most events of that day.  I do not remember what I ate or where we went.  For instance, playing pool, I do not remember previous shots or even if I am shooting "Stripes or Solids".   I do not remember to take my medications or most people's names.

But recall of recent events, people, or locations are very difficult for me.  For instance;  Last week we went to the High School Graduation of our middle Grandson's Girlfriend.  We went to Her home for a small reception after the ceremony.  There were a number of people there and I cannot tell you the name of a single person other that my Grandson and his Girlfriend.  Furthermore, I have difficulty with Her name, even though they have been an item for quite a while.

This lost area of time is very unnerving for me.  It seems as if I am not living in the "Here and Now" but rather in the past, with brief glimpses into "right now".

Friday, May 27, 2016

The VALUE of a caring caregiver

Today I was looking at all the prescription bottles and over the counter supplements I take, by the direction of my GP and my Neurologist.  Then I thought;  If my Wife passed away, I could NOT even begin to organize, order, or administer my required medications!!  That was a eye opener.  I am totally dependent on my Wife for my medical care.  Technically, I am helpless and totally dependent on Her!

You may be thinking; Duh?!  But it came as a revelation to me.  And this fact will control the rest of my life.

But my Wife has so much more value.  She monitors how I am doing, everyday and controls my level of activity.  She never schedules more activity that she believes I can handle, based on where she judges my mental and physical abilities are on that day. She let's me nap when I am tired and encourages me to be active when she knows I need activity.

For instance, today I rode the Azalea Trace bus to the Commissary.  I shopped, with a precise, row by numbered row, shopping list.  I know what we need and where it is.  Then, I get back on the bus and come back to our apartment where I put away the groceries.  After that, I was wiped out!  So, I took a three hour nap and eh woke me up in time for dinner.  We had a quiet evening.  And that was all I was mentally or physically able to do today.  And she knew exactly how I would be when she came home from Bible Study.

Yes, LBD throws her a curve ball every once in a while.  But for the most part, she is in control of my care.  And for that, I am thankful.

Thursday, May 26, 2016

Things I like!

I often complain about the things that bother me or things I hate about having Lewy Body Dementia.  There are thing I still find comfort in.

For instance, our female poodle, who is almost 15 years old, waked me up earlier than I would like, everyday, to go out.  This give me an hour or more of quite time.  No television, no lawn mower noise, nothing but blissful quiet.  I can drink my coffee in peace.

Another thing I enjoy is naps.  Now, I always enjoyed the Navy tradition of "Taking a nooner"  But naps have taken on a larger role in my life.  A nap permits me to recenter my mental issues.  I can sleep, wake up and feel like it is another day.  Not to mention, it is quiet when I am dreaming.

I need and find solace in my daily routine.  Changes to that routine are disruptive to my mental state.  Furthermore, when events are planned and then changed, my mental functioning is interrupted and upset.  I love routine!

I still enjoy many foods, most of which are now considered bad for me!  But, what does that matter?   So, I eat my favorites when I can.  Cherie pie, apple pie, ice cream, chocolate cake, steak, chicken, even mashed potatoes once in a while.  Eating give me pleasure.  It returns me, Mentally, to my Mom's kitchen and the great aromas of her old fashion cooking.

I enjoy talking to people abut my time in and with the Navy.  Yes, sometimes I see their eyes glass over.  But I am having a good time telling "Sea Stories" as if they just happened. And truthfully, in my mind, they are as up to date and relevant as when they happened.

Finally, I still love working for the Lord. Any time I get the opportunity to teach God's Word, I am happy, fulfilled, and excited.  I appreciate the opportunities to Serve the Lord that living ay Azalea gives me.

None of these things are particularly exciting compared to what I did before LBD.  But they are the few things that give me a peace and relaxation today.

So, if you are the caregiver or relative of a Dementia patient, try to understand where they are right now.  Learn what brings them comfort, security, and joy and what does the opposite to them mentally?   It will make both of your lives more happy, content, and livable.

Friday, May 20, 2016


When I was younger, when someone upset me, I "Flame Sprayed" them!  I was really, really, good at chewing folks out, regardless of pay grade or if an "O" or "E" was before the individuals pay grade.  But now, I do everything possible to control my temper, remain calm, and NOT be aggressive in any manner, once so ever!!

That causes internal conflict for me.  Some folks, truly need to be dressed down!  And if that does not work, they need their tails kicked!  But, with Lewy Body Dementia, if I treasure my freedom, such as it is, I have to keep my cool.

Today's frustration was very difficult for me.  Now is is night time and you know how difficult it is for me.   I am replaying the earlier events over and over and getting more and more frustrated and more and more angry.    But, what is most frustrating is, there is nothing I can do to change things.

This blog, is my life line!  My way to blow off steam.  Years ago, I would have blown up, got drunk, and forgot about it!   Oh well...

From my Navy Blog: But it is pertinent her too!

I have written before about not really fitting in here at Azalea Trace.  Today, I was told why!   Let me tell you about it.

Every month we have a "Floor Party" where all of us on the first floor of the building we live in, get together, bring snacks, and socialize.  It is a good time and we tell sea stories, discuss daily events and tell jokes.  Everyone has been very nice and hospitable to us, until today.  I was talking to the daughter of a very dear woman who lives on our floor.  This woman is in Hospice and is seeing her final days.  I was trying to engage the daughter in conversation.  She was a Librarian, so I had much to discuss.  She lives in Upstate New York, close to where our Son and Daughter in Law lived, so I had things to discuss there.  She asked me what I did for a living and I told her about my Navy career.  That is when she showed her upper class, "My Daddy is an Officer" attitude!  When I told her I went t work for the Navy as a Civil Servant after I retired she said; "That's how you amassed enough money to live here!"  She said that looking down her nose as if to say, "how bad it is to have Enlisted Trash living here."  I did not let it show, but I was hurt.

Now I know why we have not fit in.  There are three other Enlisted Men living here and all of them hide the fact.  Me, I am either too proud or too stupid to hid the fact that I was a Master Chief Gunner's Mate.  Not to mention the Force Master Chief of the Surface Forces, U.S. Atlantic Fleet.  But, none of these Airedale Officers know what a Force Master Chief is!  No, I am just enlisted trash!!

I really am getting tired of this stuff and since my social filters are about gone, some day I AM going to explode!   But, today, I kept my cool.  And yes, I did tell my wife.  And then  asked her to be cool also.I may have made a mistake believing I could be accepted in "Polite Society".  How could I ever think, the upper crust would accept me, an illegitimate child, raise by people that he was not related too, who grew up in a Blue Collar family, and Enlisted Man, who they only see value as a Head Cleaner, who married well, and had to go to Civil Service to make enough money to scrape up the money to live here!!

I have been hurt by people who thought they were better than me, my entire life!   It will never end because I will not hide who I am or how I grew up.  I am a success story!  I could have decided to be a "Victim" like so many people do.  But I did not.  We are debt free, never late on a bill.  Owned 8 homes in out life together.  We support my Wife's parents in their old age.  I graduated from College with a BA in Human Relations Management, Cum Laude, at 41.  I made Master Chief in 14 ½ years!  I was the Honor Graduated of Class 9 of the Senior Enlisted Academy.  I was promoted to GS 13 and was a Branch  Manager of three different branches.  Not to mention I was the Branch Head they sent on all the tough assignments like the Persian Gulf.  I was the only individual that insisted we send Combat Systems technicians on the USS Cole recovery team, saving $10 million in repairs because we preserved the SPY 1 radar arrays!!

For the most part, I don't like Officers.  Most of them have their heads up their asses.  They think they know everything, but the truth is, if you give them a screw driver or a Meter Lead, they would put their eye out!   Yes, they can fly airplanes, but they can't fix them.   Surface Warfare Officer can drive a ship, but the don't know how the systems work.  I cannot tell you how many times I have been asked on the sound powered phones when the Gun Mount broke; "Can you give ma a ERT?  The Captain wants the know."   Give me break, I just told you it was broke.  I haven't had 5 seconds to troubleshoot the damn thing!  It is a complicated, Electro Hydraulic monster controlled by a Logic Computer.  There are thousands of moving parts that move ammo that weighs hundreds of pounds there decks, to a moving gun mount and a moving gun barrel at 20 rounds a minute!!  Dumb Ass!

So, I have had my "Class System" immersion for the day!   I think I will go shoot myself!  I hate Officers and their kids!!  Snooty brat!!

She also did not believe I have LBD!  I guess she went to medical school also.  I really hate Pensacola!  It is THE Airedale Officers retirement destination.  Admiral Dick Dunleavey, I need your help!

Saturday, May 14, 2016

How Politics upsets me. A train of thought of a dementia mind.

This afternoon, I was able to describe an issue I have been dealing with.  First of all, let me say, my Wife has cut down on the politics on television.   She also told me, after I made the statements I am about to write, that she had figured out most of this already.  So, here goes.

The coverage of politics on the television, a constant droning of someone's opinion and reactions to every breath one of the candidates takes, drives my mind into survival mode.  When I am in mental survival mode, I begin to mentally build my survival compound.  I do research on the Internet on land, solar cells, refrigerators made for off grid use, bullet resistant window covering, weapons, survival foods, and other related subjects.  When I am doing this, I am happy, engaged, busy.  I can spend hours on this search.  I go to bed building my concrete home in my mind.  Then at some point, it hits me like a ton of bricks;  "You can't live that way!  You're broken, weak, mentally challenged.  You hallucinate!  And then my dreams are crushed and I am depressed, angry, and ready to give up, totally!

So, if I stay away from politics on television, I do much better.  And now, My Wife understands this too.

Wednesday, May 11, 2016

How things are progressing?

A few things gave been happening that indicate I am going into the final phase of the mental decline of LBD.  For instance, my hallucinations have picked up, became even more realistic, and I now cannot tell hallucinations from reality.

A couple of days ago I saw a beautiful golden retriever running past our sliding glass door, down the driveway of the facility we live in.  The dog had a leash trailing in the breeze.  It was so real, I looked out to see if someone was trying to catch the dog.  I was going to help.  But, no one was there and no dog was there when I looked.

Yesterday I had my weekly discussion with my Best Friend, Jerry.  After our discussion, I was reliving our conversation and realized I ran on, talked about the Navy, and kept repeating myself!  Those weekly calls are my lifeline!!   I have NO one to talk Navy with here.  And since I am the Only Gunner's Mate where i live and maybe in Pensacola, I am truly lonely!!  But, I must drive Jerry nuts!!

Then, today, I took my nap and I had repeated, dreams that got more and more violent.  I was trapped, could not breath, and I had the feeling I was going to die!!  When I finally woke up, for the third or fourth time, I got UP and stayed up!  And even sitting in my recliner, working on Solitaire on my IPAD, I still had the frightening feelings of my dreams!

Yesterday, I did not take my morning  pills.  I found that out at 5PM.  I took them then and I was supposed to take my night pills when I went to bed, but I did not.  My Wife forgot to remind me, and I forgot.  So, I am seemingly out of control of my meds now.

Truthfully, I now feel completely out of control of my life.  Furthermore, I know I have no hope of regaining control of my life.

So, as I see it, this is the next and possibly final phase of my mental issues.  My memory is failing, I am repeating myself, and I am now having major issues telling hallucinations from reality.  Not to mention, I am frightened even when I am awake.

And, for all of you who tell me I write well and seem perfectly normal, just as people tell me I do not appear to have any dementia, I reply;  As I write this, I have been up two hours from the dreams, I am now wide awake and mostly aware of my situation.  It is daylight, my wife is home, the television is on, everything is familiar and I feel safe.  LBD is known for it's ups and downs.  And I suffer from those issues, in spades!!

One other things came to mind.   I no longer want to talk to most people.  I LOVE and DEPEND on my weekly talks with Jerry.  And, my Son calls me when he travels for work and I like those calls.  But, no relatives call me!  CJ Tim, and Steve call once in a while and I like their calls.  But I am really getting reclusive.  And if you knew me, you would know I WAS an extrovert.  No more.

So, we will see what the future brings!  Nothing good, I am sure.

Wednesday, May 4, 2016


With all my posts, through the progression of my disease, I have been very open about the effects, physical and emotional, of this disease.  But, I have been a little "brighter" about the effects of the disease on me.  I have tried to portray myself as tough, tenacious, and unaffected by Lewy Body Dementia.  Nothing could be farther from the truth!

And those posts I wrote that did show the effects were understated.

The truth is, I am overwhelmed by LBD.  I am unable to cope with the effects of the disease and I spend everyday depressed, agitated, and despondent.  Everything, every manner I used to deal with difficult times have failed me.  I cannot think my way out of the "funk" that invades my mind and my life.  The dreams I used to cling to are now empty and unobtainable.  The things I loved to do, I can't do anymore.

I am tired of telling people I am doing "well" or "As well as I can" when I am screaming inside that I am lost, dying, depressed, frustrated, and without hope.

The truth is, once LBD takes over you loose total control of your life, be that the first year your are diagnosed or four years into the process. Then there is the doubting Thomas that tell you you don't have a disease, are faking it, have had a bad diagnosis, or a mistaken, about being ill.

However, I am floundering in the prison that LBD has locked me in.  A prison that has no release and only progresses the prisoner deeper into isolation and darkness.  The people who used to be your friends stay away.  And if you moved to a new city like I did, you are even more isolated.

I remember when we still live in Virginia Beach, someone knocked on our door.  It was Chuck Morton, a shipmate I had not seen in 20 years!  I was so excited to see him I forgot I was still in my PJ's and had not even combed my hair!  We talked for two hours.  That was wonderful.

But now, I am lost in my thoughts, divorced from my dreams, and looking into an abyss.  How the hell did I get here?!

Monday, May 2, 2016

How am I doing? I am progressing.

That is always my answer to that question.  I am progressing.  Meaning, the Lewy Bodies are interfering with more and more brain functions, everyday.  And the things the Lewy Bodies messed with yesterday are finding new and more insidious ways to make my life difficult!  How?

Well, recently, I have been living most of my day with a "dazed, disconnected" feeling.  I see things, but they seem far away or super natural in some way.  That feeling is invading my life more and more.

Also, my constipation issues have increased.  Enough said about that.  Body temperature fluctuations have increased in occurrence and variance!  I can go from pouring sweat to ice cold in minutes!

My Blood Pressure extremes continue.  I can tell when my BP is spiking because my ears rig even louder than normal and I feel like my head is pressurized.  When my BP drops, I become unstable on my feet and dizzy.

I struggle even more to find the right words when I am speaking and I am sleeping more and more.  My short term memory is all but no existent and I a now loosing more and more of my long term memories.  For instance, I loose names of old Shipmates and Friends.  Additionally, I cannot seem to remember what day or date it is.   I am emotionally more unstable and the things that bother me, like noise, staccato sounds, questions without answers, politics, news, life in general, and inane chatter impact me more than ever.   I feel the rage and anger rise in myself and then, I go to bed.

These are all normal, LBD issues.  But they are not normal for me and I am getting tired of them.  Add that to the fact that these issues have not taken control of my life and you can see why I am upset, angry, and depressed.

What does the future hold?  More, ever increasing, symptoms,  The drugs are loosing their efficacy.   And my resilience is decreasing.  I have all but lost my ability to care about life as it happens around me.

Sunday, May 1, 2016

My Wife and her lists, deadlines, and planning!

My Wife is OCD, on steroids!  She has always kept lists,and held herself to unattainable standards and deadlines.  This incessant stress has robbed her of most of the enjoyment in life.  She has Her plan for everyone's life and she stresses herself out trying to keep everyone in the lanes she has planned for them.   She does not have the ability to sit and relax!

Her obsession with politics falls right into her OCD.   Add to that, she is a "Bulldog" when it comes to having her plans adhered too.  If her plan does not come to fruition, she is depressed and angry for a long time.  Oh, did I mention she holds grudges?

Problems, real or perceived, cause me stress, depression, and anger.  All emotions that have a negative impact on me.   Lists, deadlines, and stress are all issues I run from with my hands over my ears and my eyes shut tight!!!

I bring this up, because I need quiet, routine, and no stress, to be able to have as pleasant a life as I can with LBD.  I am not alone with this issue.   Everything I have read tells me, quiet, stress free, routine is the best environment for an LBD patient.

I know her reply to this will be, she enjoys what she is doing.  She is doing what she wants.  Well, why does she complain all the time?  I can see the stress in her and it is not good for her either.   But, if I try to change her path, it is not pretty for me.  And, if the shoe was on the other foot, I would probably be the same way.

Spouses of LBD patients have a tough job.  They have to try to have as normal a life for them as possible, while trying to keep their loved one on an even keel.  I understand that and I do not have a solution for my dilemma.  Nor do I believe it is my job to solve this problem.  

What is the solution?  Maybe I should move to Assisted Living.  I realize that after 43+ years of marriage, she is NOT going to change.  And I am not going to get better.   love my wife and appreciate her sacrifice in dealing with my disease.  I try very hard, to be a good patient and as helpful in everyday I can.  I understand her needs but she needs to understand mine also.  I feel sorry for the Dementia caregivers, almost more than I fell sorry for those of us with Dementia.  At least we can escape!