Friday, October 12, 2018

Billing issues. Part Two

Well, we had our discussion with the account executive at ACTS Corporate yesterday.  It was very pleasant, and very productive.  I must state for the record that Robert is a professional that has the residents well being foremost in his mind and business practices.  Even though ACTS is not computerized and does everything through the US Mail, he actually uses the computer and we have all but solved the issues that the account person here at Azalea Trace fumbled with for now seven months.  I believe by November, Robert will have not only our account rectified but a process in place to deal with other that have Ling Term Care Insurance!!

While this has extremely upset my wife and me, I believe positive things will come from the experience.  I actually slept last night and so did my wife.

Wednesday, October 10, 2018

Billing issues

As most of you know, we live at Azalea Trace, an ACTS Retirement Community in Pensacola Florida.  It is a nice community that is operated like an 1950 community.  There is nothing computerized at Azalea or in all of the ACTS organization.  Let me repeat that.  NOTHING IS COMPUTERIZED!!!

Since I moved into Assisted Living our billing has been a total mess.  Every month, for SIX MONTHS, I have walked into the Administrative Offices and asked about our billing issues.  Each time, I was told to wait, they were working on it.  Each month we paid my Assisted Living fee in full.  WE were not billed for my Wife's independent living apartment. for six of those months.

Last month, we received a bill for $21000!  Our records show we owed around $12000.  We had a discussion  with the ACTS Corporate Financial Office and they had no records of any of the payments we have made!

Let me interject that we came into Azalea Trace on a contract that permits us to use our Long Term Care Insurance to pay the first three years of Assisted Living or Skilled Care.  Then, we revert to only paying the second person fee, which is $1250 a month right now.  However, even though ACTS Retirement offers this formal, legal, contract, they have NO WAY TO ADMINISTER IT!!!

So, the hassle, frustration, anger, and confusion of the last six or seven months have completely ruined our experience here at Azalea Trace!  

We have another scheduled telephone conference with ACTS Corporate tomorrow.   If that conference does not solve this issue, completely... Well, we may have to look at legal options.

All of this frustration has caused issues between my Wife and I as if she needed any other problems with me to deal with.

This will end tomorrow!

Friday, September 21, 2018

This just came to me...

I had just went to bed, and I was having dizziness because of my Orthostatic Hypotension.  In other words, when I laid down, my Blood Pressures dropped and I got dizzy.  Then I started thinking of my day and how I have to “ACT” like I am normal whenever I am with anyone!  Then the correlation came to me;    Do you remember when you were 18 or 20 years old and your stomach was flat?   Well, what if you had to hold your stomach IN ALL DAY, when ever you were with anyone!!  Even your Wife, Husband, Children, Friends, and strangers!!

Sounds difficult and impossible, bedsides stupid!  But that is how I live my life, only not holding my stomach in but acting like there is nothing wrong with me!!  Why do I have to do this?  I am not really sure.  Maybe because I perceive others expect this of me.  Or, it could be my own vanity or an internal survival reflex.   Whatever the reason, it is exactly how I go through my day, everyday.  I never tell anyone I am having issues, except my Wife and then only in passing.  Instead, I hide behind a facade of smiles, jokes, and pleasantries.  It is exhausting, frustrating, and overwhelming for me.

SO, tomorrow, I want all of you to hold your stomach IN, all day!!!  Try it, you will understand where me and other Dementia patients are.

Sunday, September 16, 2018

As the Lewy Turns!

I spent 20 years in Uniform in the Navy, as a Gunner’s Mate trtireing as an E-9.  Then, I went to work for the Navy as a Civil Servant (GS) working for the Navy on weapons systems and also in management.  I did some very dangerous things, some really crazy things, and put my life on the line more than once.  Never ONCE was I frightened or afraid.  I trusted my training and my ability.  I knew the systems I worked on and I was trained by some of the BEST Gunner’s Mates the Navy every had.  Lewy Body Dementia has changed ALL of that!!

I used to work with a Pastor who often said;  “I am scared not and I am not afraid of anything!”  Well, that is where I am now.  My experience with LBD has taken a BIG turn for the worse and it has me finally understanding the fight I am in for.  The forest few rounds, maybe the first half of the fight, I though I was doing good, maybe even winning a little,  The last few his I have taken have convinced me I am NOT getting out of this fight alive or even easy!

My Wife and I just discussed this over the phone and she believes, and I agree, that the recent increase in LBD issues has brought me back to the grief and denial phase.  I have written about me denying, in my mind, that I am as bad off as I know I am.  I often look at new trucks to buy online, new homes to buy, and other things I used to be able to do.  That clearly is part of denial.   But I now realize I am grieving over the fact that I will never be we’ll again and all I have to look forward too is more and worse LBD issues.  I am overwhelmed with grief, anger, and emotions that I cannot control.

I remember taking my Nephew Alex on the Aircraft Carrier USS Lincoln.  As we walked out on the Flight Deck, that 10 year old boy’s eyes looked like saucers!  He said; “I never thought it would be THIS big!”

Well, I never knew LBD could be this frightening, difficult, and overwhelming..  I am truthfully defeated.

Thursday, September 13, 2018

Where's Zeus?!

The other day, we were getting ready to take our walk.  We close the bedroom door when we leave my Wife's apartment to keep Zeus in the Living room.  We were both in the bedroom and I was looking for Zeus so we could close the door.  I was calling for him, and looking all around the room and my Wife said; "Look in your arms!"  I was holding Zeus in my left arm!!  Truly, I did not know.

You have to laugh!

Saturday, September 8, 2018

I can still drive a car! Sure I can...

This afternoon I took Zeus, the Wonder Dog, out for a walk.  I was enjoying the scenery as we crossed the road around Azalea Trace headed for the dog park.  We were in no particular hurry.  And the, for no reason at all, I looked to my left and there was a Ford Pick Up truck patiently waiting for us to cross the road.  I never saw that vehicle!!  The driver was polite and curious.  Never bearing the horn, just watching a man and his dog, that was oblivious to his surroundings!!

Many times I think;  I am going to get my driver’s license back!!  Sure I am, I can’t even walk safely!!  Oh well, lesson learned.

Sunday, August 26, 2018

I am just cognizant enough to know I am not cognizant

I spend much time thinking about moving back to Virginia, getting an apartment in an over 62 community I love.  Or, I think about leaving where I am and buying a home in Alabama, Mississippi, Sooth Dakota, or here in Florida.  Some of the house thoughts go back to my dream of building a cement home, surrounded by 10 foot high fence.  I have searched properties and houses in all the mentioned States.  Researched home builders and their plans.  Looked at listings of survival homes, researched alternate energy sources, and designed a 1969 Chevy Pickup Truck with a new crate motor and transmission from Chevy Performance parts online!!  During these marathons I am so happy, so relaxed, so content.  Then, reality sets in!!

You see, there is a surviving part of my brain that knows none of this is possible, probable, or even worth dreaming about.  Then, I am crushed and I realize I am trapped, where I am, and all I have to look forward too is a worsening of this disease.

There is no tomorrow.  No hope of things getting better.  No future.  Just this war in my mind that I know I am losing.  I want to have my life like it once was, mistakes and all.  But I am just cognitive enough to realize I can’t and also just cognitive enough to know I am not cognitive anymore,


Tuesday, August 21, 2018

Challenges of living with Dementia Patients; Part Two

I have my own issues.  Noise agitates me, I like order and peace.  I suffer from Sundowning.  And other issues I can't remember now.  But as I look at my fellow residents, they all have similar issues and some not to similar.  For instance, one person cannot figure out what utensils to use for eating.  This person uses their coffee cup to cut food, or uses the knife to eat soup.  It is not this persons\'s fault.  It is the disease.  This person constantly places the full coffee cup in the mashed potatoes.

Other individuals have problems reading the menu, or determining what for they like to eat.  It is NORMAL for their condition.  They are not acting that way to be annoying to others!   However, I reacted in my own Dementia fog and got agitated over a person's Dementia and Hearing issues.  For that, I am sorry and ashamed.

Dementia is difficult to live with.  Dementia patients living together multiply that issue exponentially!!

Saturday, August 18, 2018

The Challenges of LIVING with Other Dementia Patients

I live in Assisted Living with are other Dementia patients.  That presents a challenge because each of us have our own issues.  Yesterday evening, just before the evening meal, a lady that has dome sort of Dementia had an anger attack because the mailman places something  in her mail box that she did not think should be there!  She was screaming in her screeching voice for at least 30 minutes!  Now, her normal voice is like fingernails on a chalk board!  When she screams, her voice could be used as torture in a POW camp!!

I could feel my own anger growing, like the feeling you get when you have stomach flu!!  I was getting ready to EXPLODE!  And I still knew I should not do that.  I had just sat down for dinner and just before I ordered, I got up and left!!  I went to my Wife's apartment and explained the situation.  She helped to calm me down.  We did our evening walk and I went back to my Cabin at 7PM.  I snacked on popcorn and cookies and went to bed.

The nurse on duty did an extremely POOR job managing the screaming Lady.  Instead of leaving this screaming meme out in the open to interrupt everyone's dinner, she should have isolated her until she could calm down.  Later, I saw the Charge Nurse and told her of my issues.  She agreed and said she would address the other nurses failures.

But the real issues is, each of us have difficulties caused by Dementia.  And the staff MUST be trained to mitigate a Dementia patients's issues to insure each resident of Assisted Living is as comfortable as possible.

Living in a communal situation with any group of people is difficult.  Adding Dementia make it even more challenging!!  Last night was a great example of that fact.

Saturday, August 4, 2018

A recent phone call:

Yesterday, I received a telephone call from a First Cousin that I had not talked to in over 30 years.  It brought back some difficult memories of my past and how I came to be.   This Cousin did not know the truth of who raised me or the fact the my Mother had a total four illegitimate children.  This Cousin's Mother did not want to have contact with me because I was illegitimate!  The Cousin told me my Mother was the Black Sheep of the Family.  No kidding!

While the call was very pleasant and I enjoyed it, these were issues I had to deal with my entire life.  My dream was always to belong to a family I was related too.  Not that the wonderful people that raised me did bad. Truthfully, they were wonderful, treated me like I was their natural son, and saw that I was raised with wonderful morales and goals.  I succeeded in life because of their sacrifices for me and I am forever grateful.  But, I was the only person I knew with my last name.  And I lived with the lies my Birth Mother told me.  I was 31 when I was finally told the truth!!  All of that has always weighed heavy on me, even now.

But now, I want to establish a relationship with those surviving Cousins I have.  I want to learn about that family I was astranged from.  It is time for me to heal.

Friday, July 20, 2018

It is NOT a good idea to take me out in public!

A couple of days ago, we went to Walmart.  No big deal, RIGHT?  WRONG!  It was raining and we were walking into the side door of Walmart.  There were two Walmart employees standing on either side of this single door, on their cell phones, SMOKING, right next to the sign that had written on it in TWO INCH LETTERS, “No Smoking Within 25 feet of this sign”!!   I exploded!!  My wife did not see this nuclear explosion coming and I flame sprayed these two ignorant, self  serving morons!!

She quickly moved me into the store and gave me a basket to push.  She then asked me what that was  all about.  I explained they were smoking next to the door, where it was clearly posted as No Smoking!  She told me they were not smoking.  I argued that they were!!  I saw smoke!  She asked me; “Did you smell any smoke?”  I had to reply no....  Maybe I had another hallucination.

I had an acquaintance in a near by city that has LBD also.  I asked him once; “Do you have hallucinations?”  He replied; “My wife says I do!”  I guess that applies to me also.

It is becoming more a more apparent that the Neurologist is right,  It is not a good idea to take me out in public.

Friday, July 13, 2018

Latest Neurologist visit

This week was crazy!   First, my Wife was summoned for Jury Duty.  Since we had doctor's appointments this week, this threw everything in a turmoil!  She was slated for a three week trial!  They chose 50 potential jurors for the jury of eight.  The second day, the questioning began and lasted from 8AM to 6 PM.  She was not selected, but I was very agitated because my Wife was gone and my routine was shattered.   Wednesday, my Wife had a doctor appointment and Thursday I saw my Neurologist.  So, we have been on the RUN all week!  My routine is just now getting back to normal.

Routines are so important to my stability.  We discussed this with the Neurologist and she agreed.  She actually told us we should avoid taking me away from the Azalea Trace area unless it was for a short time and well planned.  We both agreed.

She also discussed my recent issues and we all agreed I was still managing them fairly well.

Did I mention my Neurologist is VERY pregnant!!  By the next visit, the will be a new Mom!!  Her first.

We get a new bed for my Wife's apartment tomorrow, so it will be another disrupted day.  I will cope.  I always do.  But, most won't know just how hard these disrupted day are on me and for me!  Sometime, I think they really don't care.

Wednesday, July 4, 2018

Happy Independence Day!!

It has been a while since I posted.  Anger, aggression, depression, and anxiety, have been my constant companions and I have had to find new ways to deal with these issues.  They are not show stoppers but learning experiences for those of us with LBD.  Instead of being negative about these issues, I am finding positive ways t deal with them.  I have done a considerable amount of Internet research from reputable sources like the National Institute or Health, LBDA.Org, Alz.Ord, and other sources like Mayo and some of the other Countries Dementia sources.  All of these organizations express the same ideas about dealing with these issues and I have adopted many of them with recent success.  Yes, I am feeling better!

What did I change?  First of all, I am staying away from loud noises, crowds, angry people, and unfamiliar settings.  I spend more time in "The Cabin".  Some of this tie is along, some is with Zeus, and some with my Wife.  She and I eat meals in the Assisted Living dinning room that is much quieter and smaller.  Sometimes we eat in Her apartment.  When we go out to shop, it is short, one stop events during the more quiet times for shopping.  I am also sticking close to my normal routine.  Routines are my friend and I am most comfortable when I am in my routine.  I limit conversations to people I know, like, and consider non-threatening!  That means people that don't call me a "Liar" when I say I have LBD!

Even Zeus is being more quiet and reserved.  Yesterday, he took a nap with me in "The Cabin".  He has never settled down when both of us were not in "The Cabin".  But yesterday he wanted to take a nap.  Another interesting Zeus issue.  He has LEAD me to "The Cabin" at least three times and wanted to go in to my room.   He know that is my quiet place and when we walk, he seems to sense I need quiet and away he goes!!

Those of us with LBD and other Dementia's can be independent.  Yes, we no longer drive, run the budget, or do many of the things we once did,  But we can control our environment to help us cope with LBD issues and that is TRUE Independence!

Monday, June 18, 2018

FEELING MISERABLE!

Agitation and anger have me feeling miserable.  The day started out OK.  Breakfast, some time with my Wife, an appointment with my Psychologist, and two shopping stops, both productive and not stressful.  We ate a light lunch and I tried to nap with my Wife in her apartment.  She sleep well.  My agitation started then.  Why?  Phone calls with no purpose that interrupted our nap, and a feeling of anger that was bubbling up in the pit of my stomach.  We went to my dinning room and had dinner.  A nice meal, but due to a planned power outage this morning, the ice cream was soft.  That does not bother me, but it bothers my Wife and that bothers me.  We then went back to her apartment, watched Jeopardy and Wheel of Fortune, through the constant whining for attention from our 3 year old Chihuahua.  By 7 PM, I was ready to explode!  Now, I am back in the Cabin, pissed off, and feeling miserable.

This is a normal occurrence!  A cycle that repeats itself daily.  Why?  Maybe because I reall do not like being out of my comfort zone and that is made up of where I live.  Riding in a car is almost more than I can handle.  Things are too close and too fast for me to deal with.  Parking lots are danger zones for me.  Or, at least that is how I perceive them.

Another issues is the stress of normal, daily, life.   My Wife has had some medical tests and we are waiting the results.  It could be nothing, something minor, or something major.  That has me worried and up in the air.  She has always been the healthy one!  

I just can’t see clean air anywhere!  Just clouds, storms, and danger.  All of this weighs very heavy on me and makes me feel miserable.  Yes, I am whining.  I have a right too!

Saturday, June 9, 2018

Our Trip to Virginia Beach

Last Saturday Linda and I set out on a quickly planned trip to Virginia Beach.  I was NOT at all sure I could make the trip and you may recall I canceled last year’s attempt at the same trip.  But, Saturday morning, with Linda the sole driver, Shem Zeus the Wonder Dog and I embarked on a reunion trip that I badly needed and wanted.  However, I was not totally sure I could make the entire trip until we left Savannah on the second day of driving.

How did I do?  Well, I had a great hallucination in a traffic jam on I-95 just into Virginia.  We were dead stopped and I saw a brand new Camaro driving UP the on ramp.  It was as real as the cars around us.  There was a van coming down the on ramp into the stopped traffic and then as the van would have hit the Camaro, it disappeared!  I also had some serious anger out bursts.  The worst, that almost cost us a new passenger window happened in a gas a station as we came back into Florida.  We were maneuvering into a gas line that would matched the location of our gas filler and a woman in a Cadillac pulled in to the space we were trying to get into.  I POUNDED on the window and almost shattered it!  Linda sped out of the Gas Station because I was going to get out of the car and physically punish the driver of that Cadillac!

But, it was great to be with friends.  Al and Annette hosted us and treated us like family!  We spend time with our best friends, Jerry and Marcia and their adult children in a great period of reunion.  Al and Annette hosted a cook out for some of the folks I worked with!  That was special too.  So, the fellowship was well worth the aggravation.

I have had a “Pipe Dream” of moving back to Virginia since we moved too Pensacola.  I am emotionally empty without my Navy friends, especially Jerry and Marcia.   We looked at an over 62 apartment complex that we were familiar with.  It is beautiful and affordable, but not practical for me, now.  There are other possibilities but I realized Azalea Trace is where I will be for the rest of my life.    It is not a bad place, it s just not where I need to be emotionally.

Once I accepted that, I knew we needed to get on the road back to Florida.  I was emotionally spent, physically tired, and mentally defeated.  We are in the best place for us.  No argument.  I was the one who pushed to move here because I knew it was the best place for both of us.  I just need to make the final adjustment to my thought process and I am working on that now.

One wonderful surprise.  LInda’s birthday occurred while we were in Virginia and our SOn, James, flew in to take us out to lunch on Lnda’s birthday!  What a sweet, wonderful, loving gesture on his part!!

We got home today around noon and have made an attempt to unpack and recharge.   Believe both will take the rest of the weekend.   I am in the “Cabin” in the quiet of the evening, collecting my thoughts.  I am going to take a shower and sleep until I cannot sleep any more.  

Monday, May 28, 2018

Memorial Day

I have lost many friends and shipmates in the wars and police actions of the last 40 years or so.  Saying "Happy Memorial day" is blasphemy to me.  One of my forgotten Shipmates, GMG1 Robert "Red" Mills was killed on the USS Benjamin Stoddard, off the coast of Northern Vietnam in 1972 while the ship was in a gun battle with a NVA shore battery.  The President, a lying bastard named Johnson, who trumped up a lie called the Tonkin Gulf Resolution, sent ships north of the DMV to engage the NVA.  In any case, Red had a foul bore and HOT GUN, and in trying to get the MK 42 5"/54 Rapid Fire gun mount back in action, it exploded, killing him and three others.

He has been on my mind for quite a while and I decided to call his widow.   She remembered me! We talked last night and had a great reunion.  She made the best of his death by going to college and becoming a teacher.  She taught for 30 years and then retired!!  It did me good to talk to her and it did her good to be remembered.

Red never got any heroism awards.  His name is on the Vietnam Memorial and his widow and sons were provided for, as they should have been.  But Memorial Day is much more than picnics, and a day off to me.  It is a day to remember those who gave the ULTIMATE SACRIFICE for our freedom!

Saturday, May 26, 2018

Hallucination and anger update

Nobody who ever knew me would describe me as easy going, calm, or unemotional.  However, I could keep my cool If the situation demanded it.  After I retired from the Navy totally, I did calm down somewhat.  I have had some very emotional, violent, episodes that I am not proud of..  But, I have tried very hard, to control my temper because I knew it would get worse as the LBD progressed.  Well, the LBD has progressed and my anger, agitation, and explosive episodes have EXPLODED!!

Yesterday, the FEDEX delivery driver came speeding past the dog park doing at least 50 mph!  The campus speed limit is poster everywhere, at 15 mph,  He had just gone over a speed bump at 50 MPH!!!  I had seen his individual before and at that time, I could not chase him because I had the dog with me.  But this time, I was alone, doing some maintenance in the dog park!!!  I beat feet, cane and all, to the administration building where I knew he was going.  The landscaping person bear me ther in his small cart.  He had just nicely told the individual the speed limit was 15 and he was speeding.  Then, Lee, the landscaping person, tole toeh second in command here, who was outside of the admin building about the incident.  When I came on the scene, the FEDEX driver was getting mouthy with Lee and the manager!  I exploded!!  I told the FEDEX driver his day was about to get really bad.  Then the DIrector of Azalea Trace came on the scene and she took over.  Well, she took control of me and calmly walked me into the admin building.  She told me she would take care of the situation and I should go to my Cabin and relax.  I knew she was right and she handled me so respectfully and gently I wanted to do what she wanted.  But, I really wanted to kick that moron’s ass too.  But, I was a good boy.

These event happen more and more and I now feel I need to isolate myself from most group events.  Recently I also. Got agitated at a Town Hall meeting here.  Not a good thing.

Some of my agitation and anger is coming from the people at the Federal Long Term Insurance office that are handling my claim.   The have not paid us yet and now owe us two months,  We have had to pay Azalea Trace out of our pocket.  That cannot go on much longer.  Every time our bill gets submitted they find fault with it.  Either they are morons or Azalea Trace cannot submit a simple billing to and insurance company.  Either way, I am pissed about this issue 24/7!!

There there is the increase in hallucinations.  I saw a new Chrysler/Fiat Jeep Grand Cherokee in our drop off area when I was coming back from the dog park with Zeus yesterday.  It was a bright, clear day.  I clearly saw the Jeep, it was white, shiny , and I recognized it as one of the new residents.  But, even though I was only 50 feet from where I saw the Jeep, before we got to the Jeep it disappeared!  It did not drive off, or park in a space.  It just wasn’t there anymore!

This stuff is wearing on me!!    

Friday, May 18, 2018

FEAR!!!

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!

Monday, April 9, 2018

A well planned day the went astray

My Wife and I had today all planned out.  First, my Psychologist visit, then go to the next county and turn in my Driver’s License, then lunch, a haircut, and a visit to our GRandon to get some Skype training.  It did not work out that way.  We arrived at the Psychologist’s office with 20 minutes to spare.  But, they messed up and did not have the appointment scheduled for me, even though my Wife had the appointment card!  OK, I was angry, but I kept it in.  Then to the Tax Collecter’s Office in the next county.  The informed us since I did not live in Santa Rosa County, I could not turn in my Driver’s Liscense to them!  OK, I lost it!  This is the state of Florida!! Not the state of Escambia County or Santa Rosa County!!  What a stupid way to run a state wide system.  I was screaming at my Wife to get me out of Florida!!!  This state is run by uneducated Hicks missing their front teeth!

So, now I am agitated, angry, cussing, and my Wife is trying to deal with all of this.  I am screaming at cars around us!  But, we call the only Men’s barber shop in the five county area that makes up the panhandle of Florida to see if one of the only TWO barbers that are skilled at cutting regular Men’s hair are available to cut many hair.  I was in luck, if we got there in 20 minutes, before the only barber working today went to his three hour lunch, I could get a haircut!  We were successful and I got a good haircut.

Then, we went to a nice lunch since we were too late to make lunch here at Azalea.  After lunch, I was spent and so was Linda, so we came home.  One home, we tried to make sense of the day, and then the people installing the retrofitted fire sprinkler system came to our apartment!  After they, I went back to Assisted Living to decompress.  But, the Azalea Bill was there!!

It was a shock!  And It was all I could do to keep my cool.  Not that I was surprised.  I expected it to be large, since we had to pay for my Assisted Living room above our normal rent until the long term insurance kicked in.  But, the LTC folks had not yet informed us if they approved my request to use the insurance we had paid on for 10 plus years.  So, I went back to my Wife’s apartment and shocked her with the bill!  She then called the LTC folks and found out all was approved!  Praise God!!

So, the day turned out OK.  I am relaxing in the Cabin, my Wife is working on Poems or BSF.  And I may be able to sleep tonight.   I HAVE HAD A ROUGH DAY.   And so has Linda!  I am so sorry my Love.  Thanks for being so understanding.

Wednesday, April 4, 2018

Tough Day

Today brought some of my major LBD issues to the forefront.  They are beginning the installation of retrofitted sprinklers in our apartment.  The one my wife lives in now.  I wanted to be there for the first briefing of what was to be done, but Ialso had my Dementia Support Group at 10AM..  The meeting was scheduled for 9AM.  I was there at 8:15 AM!  The construction noise in apartments around us began at 8AM!  By 9:15, no one had came for the scheduled appointment!!  I was ready to explode!!  My wife, calmly suggested I go get ready for my 10AM meeting.  I left, but I was agitated all morning!

Today, we also finally took me off the auto insurance.  Yes, I was told not to drive by my Neurologist a while ago, and I don’t.  But, I still have my driver’s license.  We made the decision to turn my DL in.  Wow, is that a psychological punch in the gut!

Both of these issues along with some things that came up at group today really focused me on where I REALLY am.  I put on a pretty good show in public most of the time.  But, I am really not that well!  And today, I admitted it public and  and to myself.  Both difficult things to do.

I am not the self-reliant, tough guy, I used to be.  I am s shell of my former self, and I do not like myself this way.  Difficult day!

Tuesday, April 3, 2018

Am I happy in Assisted Living?

Many people, including residents of Independent Living here at Azalea Trace have asked me, sincerely;  Am I happy in Assisted Living?  My resounding answer is; YES!!

Why?  Well, the rooms are large, comfortable, clean, modern, quiet, well lite, have large windows, and exceed my needs, wants, and desires.  Then there is the staff.  They also exceed my needs, wants and desires!!  The people that work here have our happiness and health on their mind 24/7/365!!  The are friendly, helpful, and ready to help in ANY way!

Yes, there is at least one person in Willow Brook Court, what Azalea Trace calls Assisted Living, that is not happy.  That individual would not be happy in Buckingham Palace with an unlimited staff at their becking call and an unlimited budget!!  There are some folks that just refuse to be happy no matter what you do!

I feel at home here.  I feel welcomed by the entire staff here.  And I know I am cared for here.  I can ask for nothing else!  Thanks to ACTS and Azalea Trace for my wonderful care.  I am truly blessed!

Sunday, April 1, 2018

Cabin Update

The last week in the Cabin has been good.  I am more relaxed, less agitation, and I have only had one or two anger outbursts.  I spend each night, from about 7 pm until 8 am in the Cabin and the surrounding community.  I also eat most of my meals here.  Sometimes, my Wife eats lunch or dinner with me.  Last night, Linda wanted me to spend the night with her in our apartment.  I did and I noticed more agitation and more irregular heart beating when I went to bed.  Of course, there is much more noise and commotion in Independent Living, at least in the corridor we live on.  And, Linda kept her normal nightly routines of working on projects when I am needing to go to bed.  That is not her fault.  I need to go to bed earlier than her or most folks!

I still am convinced we made the right decision for the right reasons.  We have not yet heard from the long term insurance folks.  I expect that reply this week.

On another note;  I have had a continuing problem with constipation.  I have been taking Myrilax.  It did work, but much slower than advertised.  My Neurologist recommended it, so I feel safe using it.  But, these issues need to be tracked in Dementia patients!!  Becoming uremic or septic is a big issue for us with Dementia.

More later.

Tuesday, March 20, 2018

The “Cabin” is the best move we have made!

It will not be a week until Thursday, but I can tell you the Cabin is relaxing, calming, and therapeutic for me.  In can come here and have complete silence, with no activity around me.  No one going down the hallway laughing, talking, or squeezing!  (Yes, power chairs and trash bins squeak!). Just quiet.  I sleep better, feel more rested in the morning, and have more energy.  The staff here at Azalea Trace, Oak Bridge Terrace are sincerely caring.  I could not ask for more.

It took me a couple of days to get oriented, and there are a few details to work out, but this is good for me and, I hope it is good for my wife.  The dog is adjusting well to commuting.  All in all, I believe this is the best thing for me!

Friday, March 16, 2018

Room size

Let me give you an idea of how LARGE my “Cabin” room is.  I rode Destroyers in my Navy career.  The largest ship I served on were DD 963 class ships.  My “Cabin” would have berthed 15 sailors sleeping three high in five three bunk sets.  And all the locker space required, and a Head big enough to serve those 15 sailors!  And I have all that space to myself!!  I can’t understand why some folks complain.  They must be spoiled brats.

Night two

Last night was interesting.  I relaxed finally and got comfortable.  Zeus stayed with me until Midnight.  Then he had to go out and the overnight nurse told me he could not stay overnight.  I did not argue and took him back to our apartment and then I went back to bed in the “Cabin”.  I talked with the AL director this morning and he said he would take care of it.  Zeus is with me again tonight, so we will see.

Linda and I did some more nesting today and things are looking good.  We had an quick appointment with my Neurologist this morning to deal with the Long Term Care paperwork.  We left Azalea Trace in plenty of time but halfway there, we realized we forgot some very important paperwork she needed.  That agitated me and while we were only 10 minutes late it caused me issues most of the day.  It is difficult, tiring, and agitating to try to hold anger in!

Linda spent about an hour in the “Cabin” and then went back to our apartment. Zeus and I are relaxing.  The “Cabin” is very soothing for me.  Even though this is only the second night, I am relaxed and getting accustomed to life at the “Cabin”.

Tomorrow our Son comes to see the “Cabin” and to help me hang some pictures.  Things are looking good.  

Thursday, March 15, 2018

Moving!!

I was notified my room in Assisted Living was ready last Tuesday!!  I checked it out and it WAS ready!!  So, yesterday we started moving furniture that we had purchased for my room.  Some was stored in our small apartment and some stayed with the vendors until we were ready.  Now, everything is in place and I will spend my first night in AL tonight.

Zeus the Wonder Dog is not too sure of this change.  He is very upset my red recliner is missing from our apartment.  He found it today in my AL room.  He was elated and immediately jumped into the chair!!

My TV is not set up yet, but that will come soon.  I am terribly agitated and upset over this move.  Yes, I wanted it.  It is a change and change is not good for me.  There will be a period of adjustment, I realize that and my research supports that.  But all the knowledge and planning in the world does not soften the reality of this move.  I cannot understand how bad this is for someone farther down the Dementia path than I am.  I am a mess!  It must me terrible for them.

I have not done any of the decorating yet.  Not pictures up yet.  But my clothes are there and all the furniture is there.  It looks like home, but not like mine yet.

Another point, Linda and I have decided to call this place our "Cabin"!  It softens the reality.

Saturday, March 10, 2018

The meeting with the Long Term Care Insurance Nurse

We have filed out claim with out Long Term Care Insurance.  We have paid on that policy for over 16 my years and not it is time for my policy to take care of me as advertised.  They require doctor’s reports and a visit from their RN to see if me and the Doctor’s are lieing!  I guess that makes sense.  There are people that scam the system.

The RN set up the meeting for yesterday afternoon.  She was polite, professional, and at least familiar with LBD.  But, she agitated me!  SHe had a series of stupid, meaningless, annoying things to test me including the Mini-Mental test.  Trust me, that test was made by some mini-mental moron!!  I had to go to the bathroom and while I was away, my Wife told the nurse she was agitating me!  It didn’t help.  After the two and a half hour interrogation, my wife walked her out.  During that time she asked my wife if I was a danger to others!!  Good thing she did not ask me!  My reply would have been: Only people that agitate me.

Now, we wait until she submits her report and the Long Term Care company makes their decision.  This has been a difficult, frustrating, agitating, process and if it ever ends, I will be glad.  

Thursday, March 8, 2018

The move is near, my ASS!

On 28 Feb, I was lead to believe the painting was complete and I was ready to move into my Assisted Living room.  Nothing could be FARTHER  FROM THE TRUTH!!   I looked at the room and they had spot painted including the BIG WATER SPOT FROM A LEAK IN THE CEILING!!!  That is like painting over rust on a Navy ship!

Now, to his credit, the Director of AL saw that and addressed the issue.  He asked the Plant Director why they would paint over an obvious leak!!  And, they then said they would address the leak and completely paint the room.  It is March 8 and NOTHING HAS BEEN DONE!!!

Look, if I did not need to move to Assisted Living I would not have asked to move to Assisted Living!!   So, why does it take two months to paint a simple 177 square foot room and find a leak in the ceiling of a one story building?!

I am considering turning off this move to AL here at Azalea Trace and finding a facility that can accommodate my needs.  I AM FED UP!!   And that emotional issue does not help me at all.

Wednesday, February 28, 2018

The MOVE is near!

It appears my move to Assisted Living is very near.  They have done some touch up paint in the room.  I thought it would be totally repainted, but no...  So, they have to clean the room bathroom and then it will me mine.  I did ask for a new toilet seat!!  So, I will most likely be moving this weekend!  I have to contact the bedding store to get the bed delivered and the wood refinisher to get the headboard delivered.  The rest is on me.  I will be busy.

I am excited and frightened about this move.  It is a move into the unknown and probably the last place I will ever live.  That fact is unnerving.  I will let you know how this goes and how I deal with the emotions I am facing.

As an addendum; We had a community meeting today to discuss the numerous construction and improvement plans for Azalea Trace.   The plans include an expansion of Assisted Living and Skilled Care.  Assisted Living will include a Memory Support Facility!!  Skilled Care will be converted to private rooms!  Both of these capitol improvements will make our lives much better.  However, many residents can't see the benefit because they think only of themselves.  That attitude during the meeting agitated me greatly and my Wife had to calm me down a couple of times.  I almost got up and left, just for my own well being.

These agitation and anger issues clearly let me know my move to Assisted Living is the right thing.

Friday, February 23, 2018

Truthfully, this is not easy!

The frustration, agitation, anger, despair, loneliness, and depression that LBD bring on is overwhelming.  Things that agitate me overwhelm my senses and I attack them because I believe they need fixed.  I have always had this sense of duty.  But, it seems to be hypersensitive now and I am unable to sort out my emotions from the facts sometimes.  I am not saying I was wrong about last nigh because I was not!!!   But, it does illustrate why I need to be in a more controlled environment.  But, my safety and emotional stability are being subverted by the lack of a painter.  Oh, there goes my frustration issues again.

Last Night...

Last night, at 10 PM or so, I took the dog out for his last potty stop.  We passed through the automatic door and out to the grass.  We did our business and then came back in.  But, I did not need to use my key fob to get back in.  No issue, I one how to reset the door.  Some residents stupidly bypass the security system!  Then, I thought, the door at the other end of the hall was propped open earlier so I walked down to check it.  It was still propped open permitting any poisonous snake, armadillo, bear, coyote, for, rapist, robber, or terrorist access to a supposedly secure building.  I tried to close that door but could not.  Then I saw the two "Barney Fife" security  guards and my social filters melted down!

I gave those two morons a Navy Master Chief ass chewing they will never forget!  It did no good of course.  They have to realize there is a problem before being corrected has an impact!  And trust me, the security people here at Azalea Trace would not know a security violation if it bit them in the ass!!

This recent anger outburst would not have happened if I was living in Assisted Living, but that is not going to happen anytime soon because the ONLY PAINTER is out sick!!   As we kidding me?!!  We paid $200,000 up front to move in, and $3200 a month and they have one painter?!  I am beginning to question my decision to live here.

But, I am also beginning to question why I am alone in my concerns about how this place operates.  That then makes me even more agitated and angry, causing me more problems, and making my LBD issues even worse!!!

No one cares.  No one helps.  Why should I.

I have added the emails I sent last night and this morning.  At the time of this posting, I have NOT received a reply!


The door by the pool, has been OPEN ALL DAY!!  I went out to walk the dog at 1015 and the door for the Mid Rise lobby was set to let people in without a fob!!  I then checked the door by the pool and it was OPEN STILL!!  Any creature, snake, bug, robber, terrorist, can just walk in!!!  There are mosquitos in the "C" wing on the walls and the hall is warm and humid!!

Two security guards told me the computer was at fault and the people worked today on it and would return tomorrow.  That is simply unsatisfactory!!

The idea that Acts advertises stating we have a secure building is a fantasy and this proves it.  I am extremely upset over this lack of concern for the safety of the residents!

Don Dolence

Donald Dolence silverfoxcnsl@gmail.com

7:38 AM (1 hour ago)
to DAVIDTAMMY
Another point;  WHY is there a television in the room security sits in?  I have seem them in there sleeping, watching the Super Bowl, World Series and other programs when they are supposed to be on watch.  If hey need to sit down,let them sit at the front desk.  I have also witnessed them on the computer in the library and asleep in a chair in the library.  These occurrences are t night and on weekends, mostly.

Also, last night, the guards were completely NOT aware that the door by the pool was OPEN!!  So, they either do not do rounds or do them with their eyes closed!

This is really an issue for me.  Security is a 24/7/365 responsibility.  

Tuesday, February 20, 2018

I can't understand!!

It has been almost 5 weeks since we made the decision to move me to Assisted Living.  That was the day we notified management here at Azalea Trace that I needed t make the move.  My room is still not ready.  Yes, the floor, we paid for is done.  But the room is not painted and obviously is not cleaned.  The room is 177 square feet.  I could have painted it with a tooth brush by now!!!  When I said I NEEDED to move to AL, I meant; I REALLY NEEDED TO MOVE TO ASSISTED LIVING!!!!

The waiting is agitating me!!  Even my wife is ready for the move.  Five weeks, is ridicules.


Sunday, February 18, 2018

The Flu!

Last Wednesday, I knew I was getting sick.  What it was, I was not sure.  Thursday, my Wife took both of us to the Urgent Care next to us.  The Nurse Practicioner could not find much wrong with me but she was going to do the test for the flu.  She then talked with my Wife, realized we lived at Azalea Trace, and gave us both Tamiflu.   We began taking Tamiflu immediately.  I did not even have  a fever.  That cam on later in the afternoon on Thursday, with a vengeance!  I normally run a body temp of 97 or so.  I had a fever of 102 that lasted two days.  It started to go down Saturday morning and was 97 this morning.  I also used my asthma inhaler and Mucenix D to fight the congestion and bronchial distress.  I now feel normal!!  Tamiflu works.

My Wife has not experienced any flu like symptoms after taking he course of Tamiflu.  So it it also a great preventative medicine.

We stayed in our apartment and if we were out, wore a mask to keep from infecting anyone we might come in contact with.

As far as my move goes;  The floor is done and looks great!!  We chose and paid extra for vinyl planking.  It is easy to clean, wears well, and looks like wood!  The still need to paint and clean.  When that is done is anyone’s guess.  I will keep yo informed.

Thanks for you prayers.

Saturday, February 10, 2018

I am TIRED of being brave and tough!

This has been a long journey for Linda and me.  We have both been very tough throughout this journey.  But the recent increase in issues is becoming overwhelming for me.  Couple that with the stress of the move to Assisted Living and I am overwhelmed.  The expense of the move, t he fact that I do not feel good at all, and the impact of the cognitive and physical issues that have exploded over the last few months and I am spent.

Will I do better in AL?  I hope so, but I am not sure.

Thursday, February 8, 2018

Neurologist visit

I had a three month check up with my Neurologist Office today.   Normally, it is 6 months, but there have been so many changes in my condition that she wanted to see me sooner.  Good visit.  She is very caring and attentive to my condition and needs.  She made two important medical statements today;

First was related to me driving.  I stated during a discussion that I still had my driver’s license.  She said;  “Only as a souvenir!”  She said I could Fran it if I wanted.  Believe it or not, that cracked me up.

Second;  She penned a document stating that I am medically required to live in Assisted Living due to the effects of  Lewy Body Dementia.  That was the first time it was officially stated, in legal terms and in writing that I must be in AL.  That is chilling to me.  Yes, I know that is where I need to be.  But to have a medical professional proclaim it, was sobering.

The refreshing of my room should begin tomorrow.  We will see.  More later.

Friday, February 2, 2018

Assisted Living Move Updates

To say this is stressful would be an great understatement.  The financial and logistic stressors have me questioning the move, my sanity, and my future.  Things we not as they were portrayed when we moved to this CCRC.  Or, at least, they are not as I perceived they were portrayed.  Then, there is the "wait" for the room to be readied.  That seems to be inordinately complicated for a 200 square foot room refresh.  Then there is the purchase of needed furniture for my room.  For instance, I never thought I would have to go to 7 furniture stores to purchase a chest of drawers that met my needs!!

All of this has been very stressful for me and has left me is a constant state of agitation.  I am sure my wife is looking forward to moving me to AL, just to get a break!!  And she deserves one.

What next?  Dealing with the Long Term Insurance forms, questions, and hopefully the approval.   This is far more stressful that it needs to be and mush more difficult than I am able to handle.

Thursday, January 25, 2018

More on the reason for my move to Assisted Living

I have written about my increased issues with agitation and anger.  The recent, very public angry outbursts have brought this issue to the forefront!  If you do not know me very well, let me give you some background.  I was a Master Chief Gunner' Mate in the United States Navy.  A warrior, and a person in charge of every explosive device on a Navy ship.  As I used to say, I was responsible for and work on everything from a .22 cal pistol to Nuclear Weapons.  As I promoted from E-1 to E-9,  I was mentored by men that were "Old School" Navy Chiefs.  I was taught and expected to know what I was doing, be able to technically prove I was right, and never, EVER,  back down!!  And that is exactly how I was for over 40 years.

When we discussed the move with our Son, I said I was having issues with angry Outbursts.  James said: "You have always been subject to angry outbursts!"  He is right, when something was wrong in my estimation, I let everyone know, in no uncertain terms!

The difference is, then, I controlled that anger and dispersed it based on the severity of the issue that was wrong and the audience I was addressing.  Otherwise, I used my verbose, loud, bombastic, personality, to my advantage in any situation!!  Now, I do not control that anger and I do not control the way is is used.  Little, inconsequential things cause me a big an explosion as a really important issue.  Then, there are issues I perceive  to be wrong, but are truly not!!

Te danger of this is, and the reason to move to an area where there are professionals trained to deal with my issues is, one day, my anger will elevate to violence.  It did before LBD and it will now.   This is very difficult for me to put in print, in the public domain.  But, I must be honest in all that I experience.   And while I have not felt my anger boiling to violence, I have to recognize that is may in the future.  Forewarned is forearmed.  

So, I know the move to AL is good for me, my wonderful Wife, and all that live in my community.  Enough said.

Vision Issues

My eyesight has suffered in the last year or so.  I had depth perception issues that make hallways look like tunnels and things look very close to me.  When I am riding in the car, in the from seat, I jump and yell as my wife pulls up to a stop light!  It appears to me that she is WAY too close to the car in front.   She calmly tells me; "I have this."

The other, peculiar thing is print media looks very small to me.  I have difficulty reading and on the computer, I enlarge the print.  My hand writing, which was never very good, is now small and almost unreadable by even me.  I put things on the shopping list we keep on the refrigerator and my wife has great difficulty deciphering my hen scratching.  Of course, I seldom remember what I meant when I wrote the request.

I am reticent to see an eye doctor because, here in Pensacola, the people in the Medical field can't spell Lewy Body Dementia, well enough treat it!  And, there is probably no treatment for this issue anyway.  

Hallucinations persist

I have not written about my Hallucinations lately because they are almost always with me.  They have become a normal part of my New Normal, so I just don't mention them.  But, I had a couple in the last couple of days that were interesting.

It has been cool here in East Lower Alabama.  How cool?  Some recent night have been in the low 20's with day time highs in the 50's.  Trust me, I am from Cleveland, Ohio.   That is SPRING  weather for some of us!  But here in Pensacola Florida, the local think the sun died!  But it is cold enough to have the reptile community in hibernation.  But, in the last day or so, when my Wife and I were walking out to the car, I saw a snake scoot around the curb cut just in from of us.  No, I could not identify the species because it moved too fast,  But, it was about 18-24 inches long, brown, and about an inch in diameter.   I know the snakes are sleeping, buy my hallucinations do not!!

I have also been revisited by my touch hallucinations.  The last couple of nights, after I settle in bed, and Zeus the Wonder Chihuahua is settled right next to my hip, I feel something walk across my feet on top of the covers.  Might be that snake I saw looking for a warm place to sleep.  But I did not see anything, just felt the weight and motion of whatever it was.

Do they bother me?  No, not really.  The touch events have been mission for a while so their return surprised me.  But, now it is no big deal.  More later.

Decision making is HARD!!

I have written before, I was a Navy Master Chief in the Weapons and Ordnance community (GMCM). I made life or death decisions everyday.  When I retired, I became a Civil Servant working for the Navy at a Command that provided on site technical assistance for every system on every ship, submarine, and Aircraft Carrier, worldwide.   In that capacity I managed a multi million dollar budget, made high level technical decisions and lead 20+ professionals.  I was a decision maker in high stress jobs for over 40 years!  I considered what I did easy.   Now, making any decision is almost paralyzing.  If it were not for my wife, I would be unable to decide almost anything.  

I wrote that we decided to move me into AL.  There have been a few "bumps" in this decision,  Some unexpected costs.  And those "bumps" have caused me agitation, anger outbursts, and depression.  She has helped me deal with these issues, but there is always the underlying thought of; Am I doing the right thing?  My wife now believes we are doing the right thing and our Son and Daughter in Law agree.  Even our Grand Daughter in Law who is very caring to us and very intone with medical issues since she is training to become an RN, believes we made the right decision.  But my decision making abilities have been compromised and I always question my own decisions.

Yet, when we visit AL and look at my room being remodeled, I have a sense of contentment.  I guess I just need to visit the room more often.

Saturday, January 20, 2018

The STIGMA of Assisted Living

We live in a wonderful CCRC.  There are many folks here that truly need to be in Assisted Living (AL) but will not move because they have preconceived notions about AL.  So, they live in Independent Living, sometimes paying out of their pocket for Home Health Care, when the same or better services are available in AL for free because they live in a CCRC!  There are also some individuals that should be in Skilled Care but refuse to move so they pay, out of their pocket, for 24 hour care n their Independent Living apartment.  That makes no sense to me.  But people have issues about moving to a higher level of care.  What issues, I can only guess.

Most people do not educate themselves about what health conditions they have and how AL can extend their lives and extend their enjoyment of life.  Where we live, there are more electric scooters and rollators in use in Independent Living that there is in AL!!  That is curious.

I am moving because all of the studies support moving a Dementia Patient to AL or Memory care when the patient is still has enough cognitive ability to understand and participate in the move.  There is less mental and physical shock to the patient if he or she takes part in the move including room selection, furnishing and decorations.  I am actually excited about doing this.

Another issue is that caregivers need respite!  Living with a Dementia patient 24/7/365 and being the only person caring for that patient takes it's toll, FAST!! 

Here at Azalea, I will be able to freely move between AL and Independent Living.  My wife can stun overnight in my room if she desires and I can spend an occasional night in our apartment with her.  She can eat in AL with me or we can eat in the Independent Living dining room.  Or we can go out and eat!!  These freedoms makes the transition easier on both of us.   When I am having a difficult time, I can stay in my AL room and have the care I need and m Wife has the freedom to rest and know I am well taken care of.

But, some people have this negative stigma about higher levels of care.  Again, I do not understand why, I just know it is there.  I hope my move will help erase some of those erroneous pre-conceived notions.  

Thursday, January 18, 2018

Decision Made!

We live in a wonderful CCRC community!  The management here at Azalea Trace, an. ACTS Retirement community, is very responsive to our needs.  We met with the Director of Assisted Living today and he was all ready to help us!  Now in truth, he sees me every week when I conduct the memory Support Group in new the Assisted Living Recreation Room.  The staff helps me, makes sure I have coffee, and treat me with loving kindness.  Also, to me totally transparent, I ran in to our Executive Director the other day and she asked me how I was doing.  I was honest with her and she said, let me know how I can help!  And today, when Linda and I me with the Director of Assisted Living, he was ready to do whatever it took to help us.

But, to the point.  We were offered a one bedroom suite so that both of us could move to Assisted Living, but that would not meet our needs.  Linda does NOT need AL.  And I need a place to cocoon, alone.  The Director explained that I could move back and forth between out apartment and my AL room, as I wanted.  And, my wife could stay in my AL room, sleep with me, and spend time there.  So, after an afternoon of discussion, we decided to take the singles room foe me and keep her in the One Bedroom apartment we now share.  The best of both worlds.

If I predecease her, no issues, she is still in our apartment customized as we wanted it and as we PAID for it!!  And, on the outside chance that I would omit live her, I would be exactly where I should be.

So, the decision is made.  We will tell the AL Director tomorrow morning.  Thanks Azalea Trace!!  You have given us  peace of mind!!

Monday, January 15, 2018

People I would like to punch in the nose!

See, I told you my LBD was getting worse!!  I am actually writing about how difficult my anger issues are getting.  However, people that tell me I am not sick, or a Doctor I go to Church with who says he does not see any LBD symptoms in me, need a punch in the nose!!   For instance, read the symptoms listing from Dr. Galvin or from LBDA.org and then look at me with your eyes open, and yo will not make stupid statements.  But, as I have said before, there are few if any competent Doctors in Pensacola!!   And any Doctor that made a career of the Military was NOT a good Medical Practitioner.   Trust me, I knew many doctors and dentists in the Navy and the good ones got out when their school loans were paid back.  Why, because after pay grade O-3, they are administrators and not practicing, hands on, doctors.   And the quack at Church retired from the Navy and went to work for the Veteran's Administration!!  And you probably know the VA is not a repository of medical professionals!!

So, since my agitation and anger issues have increased, the emotions that I fight when people treat me with such little respect really fire me up!  Will I punch someone in the nose for telling me I am not sick?  Not yet!!  And I hope I am in a higher level of care before I get to that point.

How agitation turns into an angry outburst

I think I have written about how agitated I have become.  It is normal for where I am in my LBD journey.  I have been trying to understand how these angry explosions happen and today, I cam up with a very accurate analogy.

If you ever had stomach flu, you may remember the feeling of a vomit attack approaching.  You felt that feeling begin in your stomach.  It grew in intensity, and you ran for the bathroom!  The pressure expanded and you could feel the product of your pain begin to travel up your throat.  Then BANG!!    Vomit everywhere!!  There was nothing you could do to stop the deluge!   Them thankfully it was over.  But your throat burned, and you felt even worse than you did before your threw up.

That is how my agitation turns into an angry explosion.  I feel the anger begging to expand and as it expands I know what is going to happen, but I cannot stop it or control it!  Then BANG!!  I have said things I did not want to say, offended anyone in hearing distance, and I feel worse that I did before it began.

Now you know.

Thursday, January 11, 2018

What is REAL and what is NOT?

I have been having thoughts and dreams that start out as random and then become real, and then I become obsessed with them and have to flesh them out!!  Some times, I am able to determine the issue I am tracking down is no more than a thought or a dream that I had and it is not real.  But, that realization is coming much slower now.  I have had this issue for a while but it is becoming more intense and more real to me.  I know I am sliding down the path of LBD, faster and faster.  But things like this are beginning to frighten me.  There are a number of "What If" issues that bother me about these thoughts and dreams that become "real" to me.

Wednesday, January 10, 2018

Family and Friends Frustrations

I remember very vividly, when my Mom was about to die.   My Dad would say; "If she would just get up and walk around the block, she would be OK!"  Of course, the cancer and the ravages of the Chemo and Radiation therapy of the 1970's were invisible to him and us.  But Dad saw her as he wanted to see her,  He wanted her to get better and get back to a "normal" life.  Of course, that was not going to happen.

Today, my Wife, Son, and many friends and acquaintances treat me the same way.  Now, I am not addressing the MORONS that say I am not sick!  Including an supposed MD I go to Church with.  No, I am addressing people that see something is wrong but they want me to be as I was.  So they treat me as if nothing is wrong, expecting that to make me better!  That is a noble attitude, not giving into a disease.  But it is also very frustrating and maddening to me!

Another frustrating issues is when people that KNOW I am NOT doing WELL continue to do things that aggravate me even after I have told them numerous times, that action or habit DOES AGGRAVATE ME!!  Get a CLUE, would you!!   I will give you an example and I admit it is a silly issue but it drives me up the wall.   Every time I get woke up, by the dog, the alarm, or just wake up, and my wife is still in bed, the first thing she asks me is; "What time is it?"  First of all is, we do not have a lighted clock in our room because she demands total darkness,  Second of all,  how the Hell do I now!??  I am in the same dark room you are!!!  Third of all, What difference does it make?!!   I have addressed this issue a number of times, to no avail.

Look, I am not going to get better, I am getting worse if you would just look and see.  All of your trying to make me better just makes me worse by aggravating me.  And while I am complaining, no.  never mind.

The bottom line is;  Running around the block will not make me as I once was.  Those days are gone.


Wednesday, January 3, 2018

Progress update

Yes, almost every post I write is an update on how I am doing.  But, I have become involved in a Facebook page sponsored by LBDA.Org where I have posted some issues I have not addressed here.  The Facebook page is a closed group for LBD patients and their caregivers.  It is very informative and very helpful because I can get replies from someone going through what I am.  But, I also want to keep those of you who don't do Facebook up to date.

My LBD journey was fairly gentle up to now.  Yes, there have been some downturns that caused me issues, but I have always been able to adjust to the "New Normal"; until now.  Recent issues with angry, emotional, uncontrollable, outbursts have left me wondering about the next "Act" of LBD.

Twice, in the last month or so I have blown up over seemingly minor issues.  Today was the day we planned to take down the Christmas Tree in our Lobby.  The storage boxes were supposed to be there, magically appearing from some hidden storage area.  But, they were not there at the planned time.  I went looking for someone to tell me where the magical boxes were.  No luck.  My Wife is a bull dog when it comes to things like this and everything MUST be done on time, in a controlled, precise, manner that she directs.  So, it became my responsibility to locate the magical boxes.  A long time resident knew where the boxes were stored but she did not know where the keys were.  So, she and I went to the basement and found the secret storage area.  The lock was OPEN!!  So, we retrieved the boxes and headed to the elevator back to the first floor lobby.  This is where things got bad.  There is one elevator that goes to the basement.  Two others that go from the first floor to the sixth floor.  It seems today, the elevator that goes from the basement to the sixth floor was commandeered by morons!!  One of them was a person, living in Independent Living that should be in skilled care because that individual cannot walk, move without an electric chair, or reach the elevator buttons.  And this invalid lives on the sixth floor!!  I can't wait for the fire!!  In any case, this moron took the elevator to the basement to get some one to push floor SIX for him!!!  In any case, we waited 20 minutes for the elevator to get the boxes to the first floor lobby to take down a Christmas tree!!!  By the time I got the boxes to the Lobby I was EXPLODING!!!!!

My wife, who knows me and what I am going through, gently directed me to our apartment to cool down.   She really handled me very well and I appreciate her because she save me from further embarrassment.  You see, the "Landed Gentry Elite than live here do not know about Lewy Body Dementia, so, I obviously do not have it and I am a liar!!  And since I was ranting and raving like a lunatic, throwing my cane across the lobby, I ended saving from myself!

It makes sense to note here that recently, I have been thinking I did not need , note did I want, to move to Assisted Living.  After my blow up, I thought;  I really drove a nail in my Assisted Living coffin!!

In any case, things are getting worse for me and I am having great difficulty dealing with this recent massive downturn.  LBD has finally thrown me a pitch I cannot hit.  I give up!!  I realize I need to be in the quiet, controlled environment of Assisted Living.  I cannot deal with people and all of their issues, agendas, ignorance, and opinions.  I am finally in total control of LBD.