Friday, May 18, 2018


Let me be truthful.  I am a lot farther into LBD than most people understand.  My wife let on in her recent post that she has seen this.  She also told me today.  I was a fearless Navy Master Chief Gunner’s Mate.  Or, at least I could control and hide my fears.  That is what bravery really is;  being able to control your fears and do what is expected of you, regardless of those inner fears.  Well, now, I cannot control my fears.  For instance, travel.  Two years ago we took a trip to the ARK in Kentucky, then to Cleveland to see my family, and then to Iowa to see Linda’s family.  All went well except our credit card got “HACKED”!!  No issue, Navy Federal handled it brilliantly.  The trip went off without an issue.

Last year we planned a trip to Virginian Beach.  I backed out!  This year, my wife is trying to get me back to Virginia Beach one more time, to see very good friends.  It will be good for me.  But, I am overwhelmed with fears that I cannot control.  First and foremost, I no longer am licensed to drive and I am a terrible passenger!  Things seem much closer to me than they actually ware and I am continually telling my wife to stop, watch out!  Or I am ducking because I am sure we are going to be hit!  And that is just on a trip to the store at the corner!  Then there is Zeus!  He does not ride well, so far.  Maybe he will settle down on the road.  Then there is the credit care issues of getting “Hacked”.  Then there is money issues.  Our Federal Long Term Insurance is being difficult so far.  Then there is where to stay with a dog, or not and the cost, and eating, and who the see, and the stress of being out of my environment.  I am overwhelmed and frightened.

LBD has made me a prisoner in my own body!  And I do not know how to deal with this issue, or even “IF” I can deal with this issue.  I never thought I would be so crippled with fear.  I remember how disoriented and frightened my Father in Law go when we took him out for a meal from his Nursing Home.  He had Alzheimer’s before all the new drugs and understanding.  I am now my Father in Law.  Disoriented, lost in my own mind, fearful, paralyzed by fright, and unable to make a decision!

Tuesday, May 15, 2018

Linda's Take on Assisted Living

Several viewers of Don’s blog have requested that I describe my take on Don’s move to Assisted Living. I have been mulling around in my head trying to form a response that is truthful and neither sugarcoats, downplays or is overly critical of the situation. 

            Don thought about assisted living a lot before he made his choice to actually move.  We would talk about it listing pros and cons and each time I felt we both were on the same track of remaining in our one-bedroom apartment at Azalea continuing to cope with changes as they occurred.   It was frustrating for me because I felt strongly that Don & I were safe and togetherand that was all that mattered.  My preference is Don and I together, braving whatever comes together.  

            I remember the times when Don was on sea duty, with 6 to 8 months cruises; in one week, out the next; duty days; broken gun mounts that required 24-hour days to fix.  We always found time to be together whenever he was in port.  Sometimes he would call at 2:00am and I would grab up our son, get in the car, pick Don up and have him back at the ship at 5:30am. It was our togetherness, our connection to each other.  We were at the center and everything else came second.   That is how I felt and still feel about us. I want us together in the same apt. us against the world.  But… that is not what is good for Don.

            So now.  At first, I felt abandoned.  It wasn’t our togetherness he needed but solitude.  How could that be?

            Lewy Body Dementia is a hard taskmaster.  It demands more and more of Don (and each person who suffers from it) until it fully consumes.  What Don was telling me and I wasn’t hearing is that he needed a quiet cocooning space to not only reenergize but to hang on to his inner self.  From what I can comprehend with Lewy Body life is different in ways that we who don’t have it can barely understand.  A simple everyday phone call is a jarring strident noise that disrupts the psyche and sets him on edge.  Add to that the tv, the commercials that come on in loud decibels, the dog whining, my voice droning on about things that overwhelm him, residents going down the hallway conversing loudly.  Cacophony, chaos, winding him up like a tight spring - with no way to vent before an overwhelming explosion occurs.  Life with Lewy Body is a quiet hell of inner turmoil… how could I continue to hang on to “you need to be with me” when Don needed a quiet, safe place to detox in solitude, to renew, refresh, bring back as much harmony, serenity, and quietude as is possible.  

            So, I have come to terms with the change.  Because I love Don I accept and feel grateful that there is a place Don has that is his lifeline.  Because Don loves me he is willing to leave his place of peacefulness to brave the turmoil of everyday life to be with me.  We have created our togetherness, different from the Navy times, but still our togetherness that is the center of us.  We are and will always be tuff together!!

            There is still rough road ahead.  Lewy Body is like the flowing lava we see as Kilauea erupts and consumes everything in its path.  I believe Don’s hanging on to his inner self will be harder and harder to do. There is the possibility Don won’t always recognize me. There will be fear, anger, loneliness, sadness, how will we cope with all that possible horror?  
            I have to trust that God knows best and will cocoon Don with His presence and trust that God in His mercy will help me through the future horrors. For now…   I cherish this time together. 

Monday, May 7, 2018

A GREAT story about Robin Williams' battle with LBD

How Robin Williams was being Torn Apart

Click on the link above to read the recent story about Robin Williams fight with LBD.   The more his battle is publicized, the more people will begin to understand our battles.  Please read this and pass it on tho others.

Thursday, May 3, 2018

More hallucinations

The other night, I was asleep in the Cabin.I was awakened by the sound of heavy rain on my window and on the roof.  After a few minutes I decided to get up and look out my window into the parking lot and check on the rain.  I was not forecast to rain but here in East Lower Alabama, the weather guesses is seldom right.  In anywise, it was pouring out!!  No thunder or lightening, just a frog strangler rain.  I went back to bed after watching the rain for a few minutes.

The next morning, I looked out of my window after opening the blinds and the ground was bone dry! The path over to my Wife's apartment was bone dry!  Obviously it did not ran the night before.  O well I enjoyed a rain store in my mind.

Monday, April 30, 2018

Another piece of me is GONE!

Today, at Noon (CST) I turned my Driver’s License in and became a documented non-driver.  I have been driving since I was 13 and license to drive since I was 16.  That is 50+ years of driving!  My Florida Driver’s license had “Safe Driver” on the bottom!   I am depressed  and upset over this, but I do realize it is the right thing to do for many reasons.

But, it is just another part of me that exists no longer.  I have listed many of these things before.  And YES, most LBD and other Dementia patients have to deal with this issue.  That is why I am addressing it.  It will most likely impact each of us the same way.  I feel personally diminished!  Less of a man!  More unable to do for myself.  Sound familiar?

But continuing to drive would put my wife and me is extreme legal jeopardy!  Do you realize that is you have a Dementia diagnosis and the Doctor has advised or directed you NOT TO DRIVE, and you continue to drive and have an accident, your Insurance is invalid!?!   They do not have to cover the damages because you did not follow the doctor’s directions.  Yes, you can get a lawyer and say the doctor did not notify DMV to have your license revoked, but you are the one responsible form your actions!

I did not like doing what I did.  But, it is the right thing to do.  Yes, I am sulking right now and I doubt I will ever be happy with this decision,  But I would have been even more unhappy if I continued to drive and caused an accident!

Wednesday, April 25, 2018

Why am I in Assisted Living?

I get asked that all the time!  Like it is anyone’s business except Linda and me.  But, I was sitting here in the Cabin, playing computer games to relax and this post came into my mind.  I get very agitated and angry with people’s attitude towards me.  Azalea Trace is full of “Landed Gentry” people that are convinced their solid waste does not have an odor!  Here in Assisted Living, there are many folks that are nice and some that look at me like I have dog poop all over my body.  These snooty folks have gone to the nurses and asked “Why is HE here?”  Some have even asked me and then when I explain why to them they tell me I am wrong and there is nothing wrong with me!!  Yes, one of these days, someone is going to get a knuckle sandwich..   I can see it coming.

But, I am here because three medical professionals, the LIng Term Insurance inspector Nurse, my wife, and myself, know this is the best place for me.  The question you may ask is why.

For instance today, my wife was out of the apartment and I was at my Memory Support Group.  A group Linda and I established!  When I returned to the apartment where my wife now lives, she was gone and I did not know where she was!  I was upset and agitated over this.  When she returned she told me she had told me this morning and last night she was going to help with the day BSF class!  I remembered that when she reminded me, but that did not help before she came back.  Leaving me alone is not a good idea.  I get upset and worried.

Also, some things in my life continue to change because of LBD.  For instance, I do not drive.  As a matter of fact, I have an appointment to turn my driver’s license into Florida DMV on Monday!  I am not happy about this, but I have not driven in a long time.  So, it makes sense when my brain is functioning near normal.  I also cannot have normal bowel movement anymore because of Autonomic Dysfunction.  And I am unable to perform sexually for the same reason.  Oh, and my BP and body temperature fluctuate wildly during the day!  And I get dizzy when I stand up or lay down.  And I have difficulty walking when I first get out of a seated position.   Not to mention loud noises, tension, and other normal things make me terrible agitated, angry, and almost violent.  Then there is the issues with my vision.  I hallucinate, have distance vision issues, and when I ride in a scar, I want to verbally attack everyone around us!!

I no longer watch any news programs, dramas, military shows, or movies because they agitate me.  I cannot go to a movie theater because they have surround sound and it is pitch black in there.  Those two things turn me I to a raging basket case!

Yep, I am normal and need to be living in my own home away from any care!!
One point, my GP, Neurologist, and Psychologist all have told Linda and I that I am very brave in the manner I am handling the progression of my LBD.  That helps me know we did the right thing.  But, as Jackie Gleason often said; “ One of these days, ONE OF THESE DAYS,  POW!!!  Right in the kisser!

Thursday, April 12, 2018

"Touch" Hallucinations

I have had all sorts of hallucinations since I was first diagnosed.  Sight, touch, sound, and smell Hallucinations have been my constant companions.  Yes, they increase and subside in intensity and frequency.  But they have never gone away.  Sometimes I have one one type or maybe two types occurring and then they subside and others take their place.  Recently, touch hallucinations have taken the forefront.  For the last week, I have been woke up numerous times by the feeling of something or someone walking on my pillow!  Since Zeus the Wonder Dog does not spend nights with me in the Cabin, it can't be him, but he is what I reach out for when I feel my pillow depressing next to my head.

It is somewhat unnerving to say the least.  To be startled out of a sound sleep by the feeling of your pillow being depressed as if someone or something is walking on it!!  

In the past, hallucinations have seldom frightened me or put me on edge.  These have.  Must be a new phase of LBD development.  Joy!