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.