Sunday, February 28, 2016

A change in night meds

My Neurologist has increased my nightly dose of Nortriptoline to combat my nightly agitation anger, and aggression.  Tonight is the first night I have taken the new dosage because of my Wife's travels last weekend.   So, I am now experiencing the effects of the new dosage.

How do I feel?  Like I drank 6-8 beers, without eating, in a two hour time period!   I am not drunk, but I am relaxed, a little loopy, and fairly happy.  I feel like telling sea stories!  The really GOOD ones!!

I do not feel the agitation, anger, or aggression I have experienced for a long time.  Instead, I am seated, relaxed, and oblivious.  This is not too bad!  But the question is, will this be the effect every night, after I get accustomed to the dosage.

It is good to feel relaxed and not agitated.  Even at the expense of feeling half in the bag!  But, only time will tell the full impact.  But, I thought I would keep you informed.  Now, I am going to bed.  I hope the bed does not spin!!  I used to hate that sensation.

Thursday, February 25, 2016


I have written before about the negative impact noise of any kind has on me at night.  But this morning, I experienced other noise issue.  We slept in today.  I was up last night from 1-4 AM  because of some cold symptoms.  So, I slept in.  At 9 AM the complex fire alarm went off!  Now our Fire Alarm could wake the DEAD!  Every room has an alarm in it.  And each one is very loud.  I jumped out of bed, got dressed, only to learn it was a test.  No notice!!

Now, if it was a short test, I would have been fine.  However, the test lasted 45 minutes!  Why someone needs to test an alarm for 45 minutes is beyond me!!!  In any case, I was getting more and more angry, agitated, disoriented, and overwhelmed.  But I did not notice it!!  Thank God my wife did and after 15 or 20 minutes, she took me outside to walk the dogs.  We were a block away from our building and the alarm was still loud.   If Linda did not see the symptoms, there is no telling what might have happened.

Additionally, I remained upset all day!!  This 45 minute fire alarm fiasco ruined my entire day.  But, we learned something.  When the alarm goes off, we are going outside!  Second, the time for me to be in a facility that caters to me, a Dementia patient, is coming very soon.

Linda softly brought that topic up this evening.  Her wheels are turning on this topic also.  I have had a fairly easy journey up to recent times.  But, the intensity of everything is going up, exponentially!!  So, we will work on future plans.  But the folks here are Azalea Trace are somewhat secretive about memory support.  So, I am going to see the Director of Nursing tomorrow and get some straight answers, one way or the other.

I will let you know what happens!

Wednesday, February 24, 2016

The difference in living prospectives between caregiver and LBD patient

Being a LBD patient that is still able to understand what my wife is dealing with, I see the difference in prospective we both have about life.  Now, I am not sure how long I will have this insight in that the speed of the progression of my LBD has increased.  There are times, now, where I not only cannot see her point of view, but I am angered by her point of view!!

So, my prospective of my future life is very negative!   I have recently began to feel my life expectancy is very short.  Because of that, I do not have goals, a list of things to do, or any reason why I should save anything for a future that I will not have.   I want to do what ever I want to do with my time, without notice, planning, or reason!   I want to eat what I want, sleep when I want, and do what I want.  I realize this must be maddening to my OCD wife.

She, on the other hand, has a long term plan, long range goals, and is willing to wait for things to happen.   I am sure she gets frustrated over my prospective on life.  But, some of that frustration comes from her inability to see my prospective.  What can't she see my prospective.  Because she loves me and wants me to be alive, with her, forever.

But, the truth is, my perspective is more realistic.

Another issues is, I would be more comfortable in Assisted Living where they provide all three meals, my meds, and we still have a private apartment.  But, my Wife believes that environment would stifle her, and she may be correct.

So, we live with these opposite perspectives on life.   If you are a LBD caregiver or patient, you will have these fundamental differences.   The goal is to manage both perspectives and keep peace in the family. The caregiver most likely had the best perspective, seeing that they will most likely survive the LBD patient.

But, the caregiver also needs to understand the perspective of the LBD patient.  In my case, I am worn out, in pain, and I mentally diminished.  Much of the time, I feel like I am not here.  And, that coupled with my perception that my life expectancy is short, changes how I see life and what I want to do with my life.   And doing things for the sake of doing things, is off my plan.

I need to close this post now, because I am loosing track of my thoughts and emotions.  It happens, often.

Tuesday, February 23, 2016

Things are getting worse

Days and nights are getting much worse.   Everything agitates me, even my wife's talking!  The dogs wanting out or even wanting petted causes me agitation.   I am becoming more and more reclusive and I truly do not like being around people.  I seek a quiet life of solitude and this is getting much worse.

My memory issues are also increasing.  Every Tuesday, I wash the sheets and towels in advance of house keeping coming.  Today, I got everything done and then called Jerry, as I always do on Tuesday.   After our call, I heard a noise coming from the utility area.  So, I went to investigate.  I noticed the booster fan for the dryer exhaust was running.  I immediately got angry because someone had left the dryer exhaust booster fan on, wasting electricity!!!   You guessed it.  It was me.  And the sheets and towels were still in the dryer!!  I truly and honestly thought I had folded them and put them away!!

Also, hallucinations are becoming more frequent.  I am having more issues with Blood Pressure and body temperature levels, and I am presently on the diarrhea track, verses constipation.  All in all, I really feel worn our, disoriented, and angry.

Why, because every thing that can happen with LBD, IS!!  Will this subside a little?  Maybe, Possibly, or not.  I just do not know.  And that is the unpredictability of LBD!

Monday, February 22, 2016

Home alone, TWO

I said in my last post that I mainly sat in my recliner.  I also never turned the television on all the time I was alone.  Tonight, the television is on and I am more agitated.   And the usual political programming was on most of the daylight hours.  I slept most of the afternoon.

I have also said before that I believed I would do better in a more controlled environment like assisted living or a memory care facility.

That being said, I do OK when my Wife is with me and we consciencely control my environment.  So, a move to assisted living can wait.   But, the weekend experiment did illuminate how television influences my agitation and anger.   The constant bombardment of violence, political dribble, and extra loud commercials, is not good for me!

I thrive on quiet, calm, and routine.  That was reinforced the weekend.  

Home alone! Almost

Last weekend, my Wife had a Bible Study Fellowship (BSF) retreat out of town.  She has wanted t attend one of these leaders retreats for a long time and this one was close enough to attend.  But, it required leaving me home, alone.  Well, alone with the two miniature poodles and 500 other residents of Azalea Trace.

She departed Friday morning and I spent the afternoon and early evening at the Mobile Boat Show with a friend from Virginia.  We had a good time. This was my only outing of the weekend.

My Wife had placed note all over the apartment reminding me to take my pills.  That worked!  I never missed mine or the dog.  And, she made my favorite breakfast casserole so that all I had to do was warm my portions up in the microwave.

The interesting take aways of the experiment are;

1.  I did not turn on the television from the time she departed at 9AM Friday until she came home 5 PM Sunday.  I found myself more relaxed without the constant chatter of the idiot box.

2.  I sat in my power recliner all the time I was awake, surfing the web or playing solitaire on my IPAD.

3.  My hallucinations picked up during this period.  Even when I was sitting in my recliner, with the room well lit, I had hallucinations.

4.  I had to stay up long enough to be extremely tired.  Then I could sleep.

5.  Three days alone with my thoughts is difficult and overwhelming.  Yes, I spent much of the time in my Navy past but much of my negative events across the spectrum of my live came to mind and upset me.

This was an interesting experiment and one I do not want to repeat again.   I found myself almost isolated, in my recliner, with my thoughts.  Yes, the poodles had to go out to relieve themselves, but even that was done in solitude.  Again, little human contact, and that was fine with me.  I am finding, the less I interact with people and the world, the better I am.

She returned with a renewed prospective on her Christian life and mission and I was even more hidden in my thought of the past than before.  LBD is an interesting journey.

Friday, February 19, 2016

Comments from YOU!

I have written before, I think, thanking each of you who read this Blog and for the comments you send me.  These comments connect me to the LBD community.  If we are connected, we are stronger, and we can help each other deal with this disease.  You comments help me ad I read them over and over again.  Unfortunately, I cannot reply to your comments because the program I use for this Blog does not permit that.  So, from time to time I write a think you, in this manner.

I have a new reader, who has read every post I have written and provided me with numerous, reinforcing, heart felt comments.  I truly appreciate your inputs Edd.  You have encouraged me in some of my darkest days of late!

I believe we need to support each other in the LBD community.  We have little outside support and even our doctors are of little help.  I am grateful that my neurologist has finally become a supporter of mine.  And I am blessed to have an psychologist that cares.  But, it has taken a long time to build this support group and I realize some of us NEVER have medical or even family support.

I worked with a fellow whose Father had Alzheimer's.  The Mother, the wife of the Alzheimer's patient, never got past the "Anger" stage of grieving.  One day, she was berating the husband, and my friend was standing with his Father.  The Dad asked my friend; "Who is that woman?"  My friend said;  "Your wife!"  The Father replied: "NAW!!"

I am blessed with a wife that cares for me and doctors that have finally got on board.  But, with out people like Edd, this would be a lonely journey.  Thanks, to all of you!!  And as they used to say on Television;  Keep those cards and letters coming!

Wednesday, February 17, 2016

Loss of confidence

When I was in the Navy, I did everything I could do to be the consulate professional.   I was strong, brave, or stupid, your choice, and I had almost total recall of technical information and sea stories!
If there was a risk to be taken in the gun mount or on the ship, or even on Shore Patrol, I was the one that took the lead.  I would rather risk my life rather than someone else.  That was just me.

But, sometime during the second decade of my Civil Service career, after 30 years of Naval service, (20 in Uniform and 10 in Civil Service), I started to notice my previously total recall memory being reduced and limited.

Finally, I had to retire on a disability because I mentally could NOT do my job anymore.  Since that unplanned, untimely, retirement, I have been on a down hill slide, mentally and physically.  My muscle tome has greatly diminished and my stability walking is greatly compromised resulting in numerous falls and near falls.

But the mental decline has been the hardest for me to deal with.  I cannot remember Bible verses or even where to find them in the Bible.  My memories of people of my past, even relatives, and events of my life are fading.

These mental and physical declines have resulted in me loosing my confidence.

Again, back in my Navy days, as a Gunner's Mate and a Chief Petty Officer and above, I was totally confident in my abilities in ANY situation.  Now, I don't even like to leave the area of Azalea Trace.  I am uncomfortable in the car as a passenger and very jumpy in traffic.  And I am extremely uncomfortable in the dark, in a car, walking outside, or even in our apartment.   Travel is unnerving because I am in an unfamiliar situation and out of my routine.  And routine is key to my mental comfort and calmness.

I have written before that I feel diminished before.  But that has progressed to a feeling of total dependence on my routine, my familiar surroundings, and a quiet environment.  even the cellphone ringing causes me to jump and feel a shock bolt through my body!

This loss of confidence in myself and my abilities along with the actual loss of my mental and physical abilities is the most depressing issue I deal with, as I am sure it is with all who deal with LBD.

Is there a fix?  No!! No drugs or counseling will help.  How can I say that?  Because I have tried both, numerous times.   No, this is here to stay, and most likely to get even worse.    My only hope is, the mental decline will speed up and I will no longer know I am mentally and physically compromised.

See, LBD does have some positive attributes!!

Friday, February 12, 2016

More on the Neurologist visit.

I cannot tell you how emotional it is for me that the neurologist I see finally greed that I had LBD!  Dr. Bowles in Norfolk, Virginia and the University of Virginia saw it and diagnosed LBD.  But, still, since we lived in Pensacola, this is the first time I have had agreement from my now, only neurologist.

Now, I don't have to do the kabuki dance overtime I visit him.  What a relief.  I was tired of the fight.  An appointment ago, he moved my legs and said: "Your legs are very stiff."  I wanted to say; "no shit Sherlock!"  But it was early in the day so I could control myself.  Now, he freely admits all my issues are from Lewy Body Dementia.  I feel relieved, vindicated, and free!

So, from now on, the neurologist and I are on the same sheet of music.  Nice!  Of course, this journey is headed towards the end.  I am past the crescendo and headed towards the finale.  Even my wife admits that, in her own way.  But, I am at peace with my life and happy now.  My fight for recognition is over.   This is the best I have felt in a long time.  Funny how other people's attitudes towards me impact how I fell about myself.  So many people told me I was not sick and I have even been told I was faking it!  I knew I was impacted by LBD, but I could not convince outsiders and even the first neurologist I had when we moved to East Lower Alabama.  Now at least, my neurologist agrees with my doctors in Virginia and as far as the outsiders go.  Well, they will just have to remain outsiders to me.

Thursday, February 11, 2016

The latest Neurologist visit

Today was one follow up visit with the neurologist.  You may remember, he ordered a MRI on my back to see if there was any mechanical issues causing my leg stiffness and my walking issues.  As I thought, there was no mechanical issues.  I do have arthritis and some disc protrusion, most likely cause by my career as a Gunner's Mate.  Moving thousands of rounds of ammo has that effect!

He is going to up a prescription I take at night to help with my anger.  I openly discussed my anger issues with him and brought out the time this week I made a fist towards my wife!  That was hard for me to express because I had not told Linda and I know it medically marks me as possibly violent.  But, it is the truth!  SO it needed to be out in the open.

 But the most striking thing about this appointment was caught by my wife, not me.  She said: "Did you notice the doctor did not try to tell you you did not have LBD?   Instead, he said these issues were part of the progression of the LBD."

While that might be disconcerting to some, It is a answer to prayer for me.  No more fighting to justify my symptoms.  Now, the neurologist and I are on the same page.  That has been a long time coming.

Now, all three of us admit my LBD is progressing faster.  This permits us to address things in a more realistic manner.  I am happy.

Tuesday, February 9, 2016


Every Tuesday, Jerry and I talk for an hour.  Truthfully, that is the best hour of my week.  Jerry is the only friend that I talk to on a regular basis.  Others call occasionally and I appreciate their calls too.  But Jerry and I have a Tuesday appointment, every week.  

I can tell Jerry anything.  He is a true friend and confidant.  These calls are a mental release for me and I hope he gets the same impact as I do.   

There is no one that I trust more than Jerry.   As the Bible verse says, He is closer than a brother.

Since we have lived here at the CCRC community, I have made man acquaintances, but no real friends.  I may be too Enlisted or too opinionated for them.  Too bad for them.  I am not about to change any time soon!

So, as long as the telephone works, I will survive, because of Jerry, being there for me.  Thanks!

Spotlighting, Part Two. How do you know?

I was thinking, how would you know I am "Spotlighting"?  Here is the answer;  In a conversation, I am likely to say;  Oh, I read that.  Or;  Yes, I know that.  If I am not disagreeing or adding information to the conversation, I am most likely, "Spotlighting" or pretending to be normal.

Before LBD, I could bring up ten other sources on any subject I was interested in and five sources on things I had no interest in.  I could debate a person on any topic and hold my own.  Now, I mostly agree.  Why, because I am just trying to be a part of the world around me.  The idea is, I have nothing to add because I am not engaged in the conversation or situation.  I am lost!  But I don't want you to know.

Now, when I am not "Spotlighting" I am normally either introspective and say very little or very agitated and being very loud, verbose, and foul!  Hey, it is the truth and I know it.   But, I want everyone else to know it.  That way, you will understand us more.  

Nights are my bad time, will she ever learn?

Yesterday was a relaxing day.  My wife had some things to do related to her Bible Study, but she didn't.  We took a nap, and when we got up, my wife was hyper-active about getting the taxes done.  So, after dinner, we did our taxes on Turbo Tax.  She wanted to learn how to use Turbo Tax and we worked on it together.  Trust me, a blind man on a galloping horse could use Turbo Tax.  My wife tried to make it a monumental undertaking and questioned everything the Tax program and I did.  Then, I needed the amount we pay here at the CCRC ever month, and she tore the house up frantically looking for that information.  I kept telling her it was no issue, I could get it in the morning from accounting.  But, she had t find in right then and there.

After the taxes were complete, she bounced and ran around the apartment for three hours sorting out piles of papers, shredding, and then baking a coffee cake!  While each minute of hyper-activity pushed me closer to madness!   I could feel my heart racing in my chest and all I was doing is trying to watch television.

Everything has to be done exactly the way my wife wants it to be done.  There is no room for differing opinions.   Before LBD, she did not openly challenge me, but her way was still the only way.  Now, she challenges me on everything.  Unless I mimic what she says, I am wrong.  I have learned to live with this, but my ability to "suck it up" is almost gone, as this even shows.

Then came clean up from the baking time.  And of course, the dogs wanted out.  Then I had a few papers to shred.  And while walking out of the room that has the shredder, my wife tried to walk in that room, and I felt a small urge to knock her out.

I did not say or do anything.  But the urge was there and I actually made a fist of my right hand.  I let it pass and I have said nothing to her.

Nights are the most difficult time.  I have explained this many times, in every way that I can, to no avail.   I have never used violence against my wife.  But last night, in my agitated state, and my control ability stressed beyond it's limits, I felt that urge!

I don't care if I had a nap, I do bad at night and a calm, quiet, stress free environment is what I need.  I have discussed this, calmly with my wife, numerous times, to no avail.   I have discussed, with my wife,  moving me to Assisted Living or a memory support facility, and
I believe the necessity to do this is drawing near, soon.

Again, I write this blog to inform others about how my LBD journey is progressing.  And I have said that my LBD journey is picking up speed and intensity.   The events of last nigh only serve to illustrate that fact even more.

Sunday, February 7, 2016


"Spotlighting" is a common issue with Lewy Body Dementia patients. Understanding "Spotlighting" is very important for the caregiver and people that are friends of LBD patients.  For the uninitiated, the question is; What is "Spotlighting"?

Simply put, there are two of me.  I have two personalities at any given time, depending on who is with me, what is happening around me, and where I am.

In my home, with my wife, only; my symptoms come to the forefront. When a friend or another visitor is in the apartment, I feel the requirement to be my best.  Now, the secret of "spotlighting."  I am no better, no more alert, and my cognitive skills are no better when I am "Spotlighting".   I just hide my symptoms!  I am still lost, confused, angry, and agitated.

I have read on other blogs that LBD patients exhibit "Spotlighting" during doctor's visits, to the dismay of the caregiver.   I try very hard not to do that, since Neurologists are so unbelieving and skeptical of LBD patients!

Another thing that induces "Spotlighting" is tension, at least in my case.  When there is an issue, argument, confrontation, I become very soft, apologetic, and respectful, to the people around me.  That is directly opposite of the way I was before LBD.  Remember, I am a Master Chief Gunner's Mate and being quiet in the face of a serious situation could be your death.  I had to be in charge, and no one could question that!  And they never did!!  But, now, LBD and spotlighting, turns me into Melvin Milk Toast, when things go wrong.    But, inside me, everything is churning, on fire, and angry.

Why do I react this way?  I believe it is a self-defense mechanism.   I do not want to loose the limited amount of freedom I have.

So, when your LBD patient acts totally different when his friends come to visit, don't get angry.  Just enjoy the time.  He will go back to normal after the visit is over.

I walk around Azalea Trace and take to people, smile, ask them how they are doing, and even comment on how they look.  People tell me I do not show any symptoms of LBD and I must be wrong in the diagnosis.   I am learning to accept that attitude.  They don't see me when I am not "Spotlighting".

Another interesting thing.   Early in my journey, when I was still working, a good friend that really was the BRAINS of the branch I managed, noticed the changes in my mental abilities.  After I was granted my disability retirement, Don told me, he noticed my symptoms very early.  Then he listed all the symptoms he noticed!  Don and I were very good friends and I was very comfortable with him.  So, I never "Spotlighted" around him.

One other point.  "Spotlighting" is not voluntary in the case of the LBD patient.  We do not turn it on and off.  We are not in control of it. Instead, it is a symptom of the disease.   Instead it is a sub-conscience action that I cant understand.  But, I have read enough from the medical world and from other LBD caregivers to help me understand that I am normal in my "Spotlighting".

So, the next time your LBD patient acts normal when the grand kids come over, be patient.  He is not in control of his "spotlighting" anymore than he is in control of his fluctuating Blood Pressure.

Saturday, February 6, 2016

Good days and bad days

I have written before that I dread good days.  The days that I feel good, almost normal, and that things seem to be going better.  I had a few of them this week, two or three days of feeling pretty good.  I knew I would pay for them, in Spades!  But, those good days fooled me.  Then today dawned and I realized it was payment day.

My wife had a number of chores planned for today.  We needed to get the car ready for  trip she is taking so we had the car serviced at the Subaru Dealer.  Then to the Vet for some heart medicine for Marcel, the to the pet store for food, and then to Walmart for some other things.  The Vet's office was FULL of barking, sniffing, loud, dogs.  Old dogs, puppies, big dogs, small dogs, and all the excitement that comes with them.  The pet store was having an adoption event!!  More excited, loud, barking dogs and more people than I ever want to see gain!!  We came home and I took a nap.

Now, my wife is intently watching the Republican Debate and I am in the office, listening to Gospel music on my earphones.  I am overwhelmed with depression and anger.  I cannot figure out tomorrow.  I have no thought process that makes sense!  One minute, I desperately want to move back to Virginia Beach, the next I want to move into Assisted Living.  Then, I want to move to a memory support unit.  Next, I am thinking about buying a house!  See what I mean?!  

I used to have a very logical mind.  Step by step planning that made logical, budgetary, sense.  Now, I am lost in opposing thoughts.  This truly is a maddening disease and I now, officially, hate it.

I am truly lost inside my own mind!  I do not discuss these disconnected thoughts with my wife.  She would be overwhelmed with them.  I have no one to talk to here at Azalea.  My Pastor is a good man who truly tries to help me.  But, he is young and knows little about LBD.  And, he is busy with a growing, young, congregation!   So, we get together for lunch every couple of months.  I cannot and will not ask more of him.

That little rabbit trail shows my wandering mind.  But this will really illustrate my lostness.  My Brother died 23 December.  But, every couple of days, I want to call him.  Then, it hits me, again, Sonny died!!  And the emotions of his death, and the death of my parents and shipmates run over me like a train!

Today, I got my Fleet Reserve Association magazine.   I always read the obituaries.  For the last 20 years, I have seen the Obits for old shipmates.  Today, it hit me;  There was no one I knew!  Why because they mostly are all dead.  I still have Jerry, Doc Wolf, and Dave Flippo, thank God.

This has been a tough day and I hope this disconnected post illustrates that.  I think I will listen t George Jones for a while.  He died too.

Monday, February 1, 2016

Not of this world, but in it!

As Christians, we are cautioned to not become part of the trappings of this world, which is controlled by Satan.   Instead, we are told we are sojourners, living here temporarily, and headed to the place Jesus has prepared for us.  We are told to store up our treasures in Heaven.

I have known that for a long time and I have earnestly tried to live my life that way.  But, you know it is hard.  We want nice homes, good cars, Careers that pay well, and stylish clothes.  We want our children to go to good universities and we look forward to long, happy, retirements.  I certainly have sought after those things through my life.

But now, being in the place LBD has placed me, I can truly say, I am not of this world and I am heading home, sooner that later.  Now, don't get excited.  I see LBD as a blessing and not as a curse or punishment. For the first time, I truly do not like or want to be of this world.  I see all the sin and evil in the world and I long to be with Jesus in Heaven.

Yet, God still finds jobs for me to do.  People I need to witness to, preaching that need done, and times for me to just be friendly to people that do not have anyone to talk too.  I treasure those Godly assignments and I seek them out.  But I no longer seek out what the world has to offer.  I do not watch the news, pay attention to politics, or get excited about the direction our Country is going.  I can't change any of those things and they do not impact my present life or my eternity.

My LBD has progressed, faster than before.  I now shuffle when I walk, even though I tell myself not to.  I am more introverted and detached from the world and even people around me.  I do not want the latest new thing, style, or taste.  I am pretty much satisfied where I am at the moment, knowing that the future holds beauty I cannot even fathom.

I spent hours in my chair, in another thought world, or mindless playing solitaire on my IPAD.  I take long naps and go to bed early.  Even the sports I liked hold little interest for me.  For instance, I once was a BIG NASCAR fan.  Now, I seldom watch the race on television.  Those thing just do not hold my interest anymore.

I know the Alzheimer's drugs are loosing heir impact.  But, they kept me going for a long time, so even that is encouraging, not depressing.

This world is NOT my home.  I know that now, more than ever.