Monday, September 28, 2015

I finally figured out what I want!

Tonight, I finally figured out what I want in regards to how people treat me over this disease.  I want someone, anyone, to sit me down and honestly, sincerely, ask me to explain how the disease impacts me.  How I deal with it, and anything else they can think of to ask.  I want them to ask these questions without that accusatory tone in their voice and without the attitude of; "You're a phony!!"

I am not being sarcastic.  I truly just want one person, to become personally interested in my struggle with Lewy Body Dementia.

Enough said.

Sunday, September 27, 2015

A study in Lewy Body Dementia

I received a comment from a Medical Student in the United Kingdom stating that she used blog to help her understand Dementia from the first person.

My Wife, who spends many thought-filled hours trying to dissect my disease, encouraged me to address some of my more pronounced hallucinations and relate them to what she believes may be their basis. She also co-authored this post.

We know pronounced hallucinations are one of the main symptoms of LBD.  So, they are important in understanding this disease and how it impacts the patient.

For instance, I have written about my hallucinations of me being trapped by fully decorated and illuminated Christmas trees.  Each time, these Christmas trees surround me and prevent me from getting out of the room.  They actually impede me from going anywhere!

Now, let me unpack this in my Wife's analogy.  Until two years ago, Christmas was a very unhappy time for me.  I dreaded the Holiday!  So, Christmas trees represent all that is wrong in my life.   Therefore, I am being trapped by the things I hated from my past.  She also draws a correlation between this hallucination and a drop in my cognitive abilities.  I agree with that.

Or, the man walking across Interstate 10!   I was driving in moderate traffic on clear sunny day.  About 100 yards in front of me was a bridge that crossed the freeway.  I saw a man, as real as any man I ever saw, walking across the freeway, from one bridged abutment to the other.  When we got even with the bridge abutment I looked t my left to see where the man was.  My wife asked me what I was looking for and I told her;  The man walking across the road!  She told me there was no man.  Earlier in the week a man had been walking across a city street.  Did my mind bring that forward and place the man on the freeway this time?  Does Lewy Body dementia bring events from the past to the present - out of the context of current reality - but definite events that the mind processed prior.

Then, when we were back in Virginia, we went canoeing on Lake Wright.  Riding in the car, I saw a bright red sports car.  I do not now remember what kind it was, but it caught my eye and I was discussing it's virtues.  Then, when we were on the lake, in the canoe, I was startled by a red power boat close to us!  Power boats are not permitted on Lake Wright, so it was not there.  Again did my mind bring an interesting event from the past to the current reality - not really an hallucination but a past experience the "Lewy Body mind" puts in the present & doesn't realize it doesn't belong there.

Third is the plane crash.  One day, with my wife driving on a quiet residential street, I saw, clearly, a DC-3 flop over on it's back, presenting that unmistakable DC-3 belly and wide wings, and crash, nose down, not a mile in front of us!!  Now, I actually saw an A-6 with 5 external fuel tanks flop over and crash in front of me near NAS Oceana when I was the Command Master Chief at VA-55.   So, again, this hallucination may have been related to and actual life happening that the "Lewy Body mind" places in the present.

And finally, we were in an Eye Glass store.  There was a dirty, unkempt, homeless man hassling the receptionist.  She handled it well and the situation was defused.  Then, a few weeks later, we were back in the store to pick up our glasses and I was staring at a chair, where I distinctly saw that man sitting and I felt he was going to cause trouble.    I told my wife I was going to intercede and solve this problem.  She informed me no one was in that chair!  She believes my issue with the unresolved actions of this man, weeks before manifested the hallucination on this day.

My Wife wonders if LBD patients bring past memories into the present mind function and live them out.  And, I hope you remember me writing about being in our home, but in my mind, I was on a AEGIS Class Cruiser, yelling at a group of young Gunner's Mates for gun decking PMS and not doing Pre-Fires by the PMS Card.  I could see, smell, feel the ship.  I was actually walking through ship spaces!!!  In my mind, I was on that ship at that time and those people were real and I was talking out loud! Not in my mind.  A telephone call brought me out of that hallucination.

Do we short cycle our memories and bring them forward?  If our memory can be represented by a sine-wave, is that sine-wave shorter and more compressed in LBD patients?  Is this why past memories and reality get mixed together in the LBD patient?  And, why do Alzheimer's patients stay in their mental comfort zone when LBD patients move in and out.  All these questions need research.  Does the Alzheimer's mind have a clear break in memories - a chasm the mind can't go forward or skip over - so the patient is stuck in the past and can't live in the current or move into the future?  Does the Lewy Body mind bunch up memories and mixes the past with the current and can't sort out the difference.  Do Lewy Body patients stay in current reality longer because the Alzheimer's "chasm" isn't a part of Lewy body dementia?

Does the Lewy Body brain lose the rhythm of normal brain waves, distorting the memories kept in those waves?  Does it run too fast & bump or blend memories together - like a heart that has an irregular heart beat?  Does the Lewy Body brain have a shorter span of brain waves or a faster flow - what causes the out of sequence memories that appear to be hallucinations?

Conversely does the Lewy Body brain bring unusual, or unresolved events from the past back into the present  to try to resolve or make sense of something the brain is dwelling on?

Hallucinations are a major part of LBD.  They can be frightening, as in my Christmas Tree Hallucinations.  Or, they can cause you to change the way you live your life, like my hallucinations of the man crossing the freeway caused me to stop driving.   But, the fact is, hallucinations are part of LBD and the are a big part of my life.  They can be harbingers of declines in cognitive ability or reflections of my past.  I truly do not understand them and only write this at the bequest of my Wife, who is deeply involved in my care.  I am blessed to have her and her interest in LBD.

Saturday, September 26, 2015

Time to reduce things that I do

I wrote about my cognitive decline and my failed attempt at being a name tag maker.   But, because of the stress of preparation and travel, I have decided to give up our Ministry at Bay Breeze Assisted Living Facility.

We have been active in that Ministry for over three years.  It has been a blessing to us and I believe to the residents of Bay Breeze.  I was Blessed to Baptize two Men from Bay Breeze!  And we have studied  in-depth, at much of the Bible.  We have brought the Communion Table to these folks, a first for they community.  And the fellowship of those folks has strengthened me.

This Ministry started when we lived 5 minutes from Bay Breeze.  Now, it is a 40 minute drive, one way.  Then there is the time to prepare an in-depth, meat and potatoes, Bible study.   Many of the members of this Bible study group are well versed in the Bible!!  That means I must be on my toes!!  They have taught me more than I have taught them!

I love these folks and the staff.  But, it is more than I can to now.  And I really do not like to leave Azalea Trace.   I am, more and more, becoming a hermit in this 120 acre community.  Yes, I like to walk outside around the buildings.  Yes, I like to use the golf driving range. Yes, I wash the car in the car wash stall.  But all that is rift here, where I can still see my building.  It is familiar, comfortable, and now, my home.  I do not like to venture outside of what is familiar.

Then there is riding in the car.  Since things seem closer than they might be, I get a bit nervous and twitchy as a passenger.  In truth, I drive my Wife crazy!!  STOP!  Watch out!!  You're too close!!  STOP!!   You get the idea.

So, we will reluctantly say good-by to our friends at Bay Breeze.  I am disappointed, but, it is a necessary concession to Lewy Body Dementia.   It is also another illustration that I am progressing more into the third quarter if this game with LBD.  Oh, and by the way, I am loosing to LBD.  But, I knew I would.   While I thought I was winning in the first and part of the second quarter, I started loosing in the second half of the second quarter.  And now, we are well into the third quarter and LBD is running up the score!!  At least, that is the football analogy.

The inability to learn new skills that I wrote about before and my realization that the Bay Breeze ministry was wearing me out and over whelming me has knock me down emotionally.  I am not sure what is coming next.  I know it will difficult, uncomfortable, and challenging.   I know I am no longer up to the challenge, so LBD will win.  

I have lost the ability to learn new skills!

We live in a wonderful Continuing Care Retirement Community (CCRC) called Azalea Trace.  I know I have written about it before.  The residents here do many of the more skill related everyday chores as volunteers for the community.  It truly amazes me what they do and how much they add to the lives of the residents in Independent Living as well as Assisted Living and Skilled Care.

For instance, my wife uses her Library Masters Degree in the large Library Azalea Trace has.  I Preach as a stand in for the Staff Chaplain on Tuesdays in Skilled Care.  Recently, I took on the responsibility to make signs and name tags for the community employees, residents and activities.  The equipment they uses is computerized and very up to date.  The individual that has been in charge of this task has done an exceptional job and took great pains to train me.

However, I have had a recent down turn and tonight I came to the realization that I just cannot master this skill.  I can't even manage my time in getting to the shop.  It seems my time just slips through my fingers.

As a further illustration, to me, that I just cannot learn this task, tonight I went down to the shop and tried to make some name tags.  I did OK on the computer part, but when it came time to set up the engraving machine, I screwed up!  I damaged the mat that holds the tag for engraving!  I just could not remember how to do what Oscar taught me to do, twice.

So, I came back to our apartment, realizing I am now a Cognitive Invalid.  I cannot learn anything new.  My brain will not retain new information and I cannot move new info into my hands for application!!

I typed a letter of resignation explaining my situation to Oscar.  I hate failure and I hate letting Oscar down.  But, I cannot do what I cannot do.

I have written recently about being in the second half of this disease, and this further illustrated my demise.   So, as my Wife said, we will focus on what I can do.  She always finds a way to make things good.

But, there is more...

Thursday, September 24, 2015

Routine, Routine, Routine!!!

In the life of a LBD patient, ROUTINE is THE most important thing the caregiver can influence!!!  I cannot say that often enough.  And, even with my routine being content, I have issues.

More and more, I stay in my retirement community.   We do thing the same way everyday.   And when things change, for any reason, I am off my game.  My wife is very careful to control my routine.  She understands how my routine impacts me.

But, even with a stable routine, I have had to reduce some of the things I have done, routinely, over the past few years.  My cognitive ability and my stress load have required me to reduce the things that I do outside of Azalea Trace.  I simply cannot do as much as I once could.

But, back to routine.  I often hear about caregivers taking their Dementia patient to new locations, long vacations, visits to the Grand Kids, or even moving them after they have had their Dementia diagnosis for a while.  I am not a doctor, but I am a person with Lewy Body Dementia and I believe a major move now, would cause MAJOR cognitive and even physical issues.  

On another note, but related to a stable routine;  I have had stability issues recently.  I now used my cane all the time.  The pain in my legs, all the way up to my buttock, is constant and increasing.  I do not complain openly about it because there is nothing I can do about it.  But, my Wife knows and called my Neurologist today to try to set up Physical Therapy in an attempt to mitigate the pain and maybe increase my stability.  I said I will go to the therapy as long as it is here, at Azalea Trace.   That way I will not go out of my familiar and protected community and my routine will be maintained.

So, it is my recommendation to maintain your Dementia patients routine completely.  If you plan on moving, do it early in the disease.  If you are in the second half of the journey, as I am, stay where you are!  Bring in help if you need to.  But don't change anything.   If you do, you may not like the results.

Wednesday, September 23, 2015

The difference is Day and Night!

It is 8:10 AM here in Pensacola.  It is cool, sunny, the birds are singing, and I feel good.  I had a good night's sleep with few bathroom visits and although I have my normal leg pain, I feel OK.  Why?  What is the difference?  It is morning, daylight, and there are NO loud noises.

It still amazes me how there can be such a difference between how I feel in the morning and how I feel when the sun starts to go fade.  My wife can document these changes.  We keep the house brightly illuminated but that does not help.

The entire character of the world changes when it gets dark out.  Everything seems more sinister and threading.  Noises seem louder and more sharp!  Those noises cut through me like a sword.   I become grumpy, agitated, and I react with anger at anything and everything.

But now it is a bright morning and nothing seems to bother me.  How long this will last is any one's guess.  So, I will enjoy the good mood while it lasts.  More later.

Tuesday, September 22, 2015

Who cares if I have LBD?

OK, I realize I am depressed, angry, and difficult to get along with!  And yes, I know I have some friends, like Jerry and his family who are genuinely concerned about me and my journey.  And yes, my Wife cares, in her way.  I say that because she has to cope as a caregiver, a wife of a LBD patient, and a future widow!  But, I run into so many people that either call me a liar, deny there is a disease called Lewy Body Dementia, or just dismiss me as a crank.  So, my question is, does anyone care.

I don't see Jerry Lewis doing a Telethon for LBD patients.  And even the deaths of Robin Williams and Casey Casum did not help our cause.  The truth is, we are under publicized and under documented.

The Gay community had the same problems with AIDS and to fix that problem, they gave blood!  Then, many people that were not Gay got AIDS.  That gave AIDS plant of attention!!!

So, is there a way to infect people with Lewy Body Dementia?  No.  And since those of us with LBD are incarcerated in "Homes" or "Facilities" for our own protection, no one see's us and therefore, no one experiences LBD unless they have a relative or close friend that has it.

Friends, there is an interesting case.  Many of my friends have stopped contacting me since my diagnosis.  Hell, much of my family no longer contacts me!   Why, maybe they are afraid they will catch LBD from casual contact!  Or, maybe they just don't want to be around someone with Dementia.  Give me a break, I drool on my shirt and pee in my pants sometimes.  But, I can still be fun to be with!!  The fact is, I cannot do what I once did.  But I still shoot pretty well!  I will admit my stamina is not what it once was, but two hours at the range is enough for most folks.

Look, my point is, people with known diseases like cancer, get much more attention than Dementia patients,  I really do not know why, but I do know we get lonely.  Since most of us can't drive, getting out is dependent on those of you who are "Normal".

I am just complaining, I guess.  The sun is going down and I am dealing with my nightly friend; "Sun Downing".  So, just forget this post.   Oh, you already did.    

Saturday, September 19, 2015

What it is like to have Lewy Body Dementia, the Second Half!

I am well into the third quarter of my journey with LBD.    Many changes have occurred since I wrote the first article about my condition.  So, I thought it was time for an update.

Depression is now my constant companion.  The vast majority of the time, I feel that no one cares about how I am or my needs.  I shun contact with most people with the exception of a few very close friends and small children!  I find i enjoy and crave spontaneous interaction with young children.  Why?  Maybe because they do not know me and do not know I have LBD.   They have now knowledge of how I was before the disease nor how the disease has impacted me. These interactions are short, fun, and without any future connection.  I love to make small children laugh, feel important, and wanted.  Funny, as I write this, all of these emotions are missing in my life since LBD has progressed.

Sleep is my escape.  My bedroom is my sanctuary where I can thing, deal with my anger and other emotions on my terms, and be away from others and the world.  I seldom watch the news but prefer to get my news from the Internet, in small doses that I can control.   This isolates me from the diatribe of patrician people.  My Nation is in a fatal decline, just like me, and the news of the day painfully illustrates both truths to me.

Most people I love have withdrawn from me.  Oh, some are here, close to me, physically but not emotionally.  That is their way of dealing with my disease.  I now understand why the elderly, especially those with Dementia's are placed in care facilities and forgotten.  To invest time or emotions in these folks, like me, is too painful for the loved ones.  It is like keeping their loved ones dead body in the bedroom!   Well, I am not dead yet and I am still mostly here mentally, and I need mental stimulation and emotional and physical love!

I do not drive because of my disease.  We made that decision to protect us financially.   I love to drive, and being a passenger is painful to me.  But, it is the right decision and everything I get in the passengers seat, it cements that decision so that when I am no longer able to make that emotional decision, I will already be used to NOT driving.  It is sort of a reconditioning of my brain.  The same that happened at 16 when I received my driver's permit.

Not driving, does make me a prisoner.  While the community I live in offers many social events and opportunities to interact with others, I cannot go any where outside of the community without someone driving me.  There might as well be a all around this compound with guards and gun emplacements!  

Many times, I am overwhelmed by noise, as I have written recently.  That night, I was violent angry and ready to fight someone, anyone, over the attack on my senses!!   I am also overwhelmed with a sense of not caring about myself or anything or anyone else.  When this overwhelms me, I feel "no one gives a shit"!   I want to be alone when this occurs.  Alone in all senses of the word.  Yet, I wish someone would hold me, kiss me, tell me I am loved, important, and needed.

Physically, I now NEED my cane for balance and I feel lost without it.  I have involuntary arm and leg movements.  My major muscles ache most of the time.  My digestive system is in turmoil.  I suffer from constipation/diarrhea bouts every couple of days.  There are no normal bathroom days.  Incontinence is not a constant condition but is starting to occur.  My vision is now impacted and I have difficulties seeing any distance.  I have great difficulty reading and comprehending.  My speech patterns have been altered to short, sentences and long searches for words to describe most things.

My Blood Pressure fluctuates causing me to become dizzy and unstable on my feet.  This autonomic disruption also impacts my sexual ability.  I cannot maintain an erection hard enough to achieve insertion or long enough to achieve orgasm.  This, along with loosing my independence leaves me feeling less than a man.

Mentally, I am loosing my memory of my favorite past, my Navy days.  I have periods of name remembrance and then loose those names and events.  My writing in my Navy Blog has all but stopped.  I get angry and abusive over events that I should not.  I have no social filters.  Much to my Wife's dismay.

I have been abandoned by my Congressman, Jeff Miller, of Florida and the Veterans Administration.  Congressman Miller and his staff have done nothing to help me with my VA claim.  The Disabled American Veterans Association has been a great help.  But, they can only do so much.  Congressman Miller has clout, but I guess I am not important to him!

This has, more and more, become a lonely, solitary, fight.  The doctors do not have a clue and I feel they learn more from me than I do from them.  Even the closest family and friends keep me at arms length not wanting to invest in a dieing person.   People I meet tell me I do not look sick, even retired doctors.  Even though they have no base line or insight into my mental or physical condition.  If someone has cancer and they tell a new acquaintance, that new person does not say; "You don't look like you have cancer!".   Yet they do say, you don't have Dementia!  The end of their statement is never said but only thought; "You lying sack of shit!"  But, I hear it and it hurts and frustrates me.  Someone is going to get hurt someday soon when I canon longer control the emotion to punch that uncaring individual in the nose!

As you can see, I am now full consumed with Lewy Body Dementia.  In the beginning, I had the perspective of: "That is interesting" when a symptom occurred.   Now, I only feel rejection and hopelessness.  Much of the writing concerning Dementia is centered on the caregivers.  Well, from my experience, they have it easy.  Just detach from the patient and go on about your life.  No one really want to know what the Dementia Patient is gong through and experiencing.  Every time I tell someone what I am experiencing, they tell me they have even more horrific issues.  So, I seldom tell anyone anything.

Like I said, this is a lonely journey with a terrible disease, that none knows about or cares about.   I would be much better off in a Dementia ward of a skilled care facility, with others on a similar journey.  Just lock the doors and keep the gawkers out.

This was a long, very personal, post for the sole purpose of baring all about my journey with LBD.  It was not meant to hurt or get back at anyone.  It was meant to educate anyone who really cared about someone with Lewy Body Dementia.  If that person really exists.

My posts will not become further apart and shorter as I find it difficult to write in this or my Navy blog.  I am still here, just moving much slower.


Friday, September 18, 2015

What the heck is that noise?

As you know, we live in a Continuing Care Retirement community (CCRC) called Azalea Trace in Pensacola.  It is a very nice, quiet, genteel, community.  We share one border with the University of West Florida.  We are good neighbors with them, but last night, I learned they are NOT good neighbors with us.

I was walking the dogs at about 2030, (8:30 PM) and I heard this extremely loud, amplified noise coming from a brightly illuminated portion of the campus.  The noise, coupled with the darkness,  drove me into an almost uncontrollable rage!  The noise from the speakers never quit!!  Who ever the moron was on the microphone, he or she was screaming and the system was not well adjusted, so all they got was a loud reverberation and muffled voices!!   It kept going, and going, and I got more and more angry!!  I finally brought the dogs in before they were ready and after loudly expressing my anger, I went to bed to hide!!

I wanted to scream at the noise!!!

Loud noises cause me problems.  But this was way past loud!  It drove me into a rage that only bed could begin to control.

I have no respect for UWF based on the students I see in the area.  Couple that with their reckless, disrespectful, aggressive, asinine, noise attack and I question their designation as a University!  The people in charge should know how this would effect their neighbor.  Or not, see as I believe the staff and professors are probably as dumb as their students.

I probably have no recourse.  And that aggravates me almost as much as the noise did.  Again, there is nothing I can do except hide in bed.

LBD is now in full swing and it is now controlling every facet of my life.  I guess I am fully into the third quarter of this game, and I am loosing badly.  

Friday, September 4, 2015

Living arrangements for the future of Dementia patients

Many times, couples and individuals postpone decisions that would be much better made when everyone was healthy and fully cognitive.  Now, I am not saying we should make these decisions when we are 25.  But, postponing them until the Dementia patient needs skilled care is not a plan either!

But, we are human and many of us just ignore the inevitable and hope things will work out.  Trust me, they won't!

Again, everyone does not have $250,000 to give to a Continuing Care Retirement Community for the entrance fee!  But, there are many great communities that offer Continuing Care without the Entrance fee!  The key to understanding the future is research.  Get on the Internet, go visit communities, listen to their options, and then, seek advice from family, friends who have been on the journey ahead of you, and professionals like Senior Attorneys, Doctors, and Family Counselors.  But do something!!  Before you are in the predicament of having to place your Dementia Patient in a facility you don't like!!

Another issue to consider is the fact that the Facility determines the level of care your Dementia Patient needs!!  You may think Assisted Living will work fine, but your patient may need Memory Support to Skilled Care.  Then there is the issue of anger outbursts and even violence.  These issues reduce the facilities that will accept your Dementia Patient.

There is one more issue I want to bring out.  I know how disrupting my daily routine and living arrangements effects my journey with Dementia.  Our move to Azalea Trace was difficult for me.  It confused me, caused me hallucinations, and a feeling of being lost and confused.  Now, my wife worked with me endlessly, showing me where everything was placed.  How the dishes were in the cabinets, where the coffee maker and coffee were.  How, everything worked.  She went over and over these things to make me comfortable.  And Azalea Trace did everything to make our move easy and orderly.  They even have a Sponsor assigned to help you get acclimated to the community.  Azalea Trace did an outstanding job!   But even with all of that, I was negatively impacted by the move.  I remember an emotion I had of all of my stuff being stolen when we moved!!  I kept asking, where is my stuff?!

If your Dementia Patient is confused, cannot function in the home he or she gads lived in for 10, 20, 30, years, how do you think they will do when you completely uproot them and move them to a facility they have never seen!    Trust me, it will accelerate their dementia symptoms and probably have a lasting, negative effect on their cognitive abilities.  Change is not the friend of a Dementia Patient!!

We did our homework, moved early, and chose a community equipped to meet both of our needs.  Did we have disagreements and major issues doing this?  You Bet!!!  But the end product was good for me and my wife.

So, just like the old railroad crossing signs said;  "Stop, Look, Listen"!  And then decide early in the journey with any type of Dementia in determining living arrangements for your Dementia Patient!!