Sunday, October 21, 2018

Another curve!

My Wife has a very strong family tie to Alzheimer's and was exposed, second hand, to the same chemicals that caused my Lewy Body Dementia.   Recently she has exhibited many symptoms of Alzheimer's Disease and she is now waiting for an appointment with the Neurologist I see here in Pensacola.   This is a time I remember very well!  The period of time when you first KNOW you have some sort of Cognitive issues but still do not have a diagnosis.  You are very tense and hyper attentive to everything different that you experience.   You are worried and apprehensive as to what you have, if anything!

I can only be supportive at this time.  My knowledge about different dementias is worthless.  All that matters to my Wife, the patient, is what the Neurologist tells her, as it should be.

So, we wait and pray.

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.