Saturday, April 19, 2014

The confusion of those who see me

Most people know  have Lewy Body Dementia.  Why, because, besides the Navy, it is the second most thing I talk about.  Why, because it dominates my thoughts and life.  Now, most people that I come in contact with me care very little about my disease or my Navy career.    But, they do treat me in a very curious manner when I have contact with them.

For instance, today we helped set up at the Church we attend, for tomorrow's Easter breakfast before Easter Service.  It seems strange to me the have a breakfast but no Sonrise Service!  But, who am I?  In any case, the Pastor of the Church was there and I helped him put out some books for folks to take about Easter.  He commented on the water proof wrapping of each book and I remembered a story told to me by a Missionary that was part of the underground that smuggled Bibles behind the Iron Curtain.  The Pastor looked at me like I had two heads!

Now, I admit I do have a lot of stories to tell.  Most are true.  But, I honestly do not understand why my relaying a story about smuggling Bibles to Christians in East Germany is weird when the Pastor was just carping about hermetically sealed, single book packaging!  Seems to me, if I were smuggling Bibles behind the Iron Curtain, I would want them hermetically sealed!!  But, he did not see the connection, obviously, and I was judged to be crazy!

Maybe he is right.  But people assume I am normal and that nothing is wrong with me, and then act repulsed when I do not act like they think I should!  I am doing the best I have and I think I am doing fairly well, all things considered.  I now understand how other mentally challenged people feel.  My brain works different now.  That is not my fault.  If they know I have LBD, they should be more understanding.

How I long to be back in Virginia, with my Church friends and Navy Buddies.  They have been with me from the start of this journey.  They understand me,  They live me.  For me, this move was a bad idea.

Wednesday, April 16, 2014

The Isolation of Dementia

I experienced something recently that upsets me.  I realized that I am isolated, completely!  As you know I live in the memories of my past. Those memories are of my Navy career.  I love the Navy and I am proud of what I accomplished in the Navy and as a Civil Servant working for the Navy.  But, no one around me wants to hear about my memories or even respects them.  Instead, I was told, in so many words, to stop talking about the Navy.  I am, or better yet, who I am or was, is isolated, alone, and without any friendly contact.

I might as well be on a deserted island, alone.  Most of the conversations I have are with myself or with my friends in my memories.  While I thought the move to Florida might be a good idea, it is anything but that for me.  The overall, total, rejection of me is  more than I can bear and it is driving me further into isolation.

I remember a happy day in the past, when my Shipmate, Chuck Morton, surprised me by knocking on my apartment door in Virginia Beach.  Seeing him, talking with him, remembering our experiences together and the men we served with, was like medicine to my condition.

Yes, Shipmates call me and yes, I talk to Jerry every week.  Those calls keep me sane.  But, happy is not on the horizon.  With the exception of puking after getting drunk, I have never spent so much time and money being miserable that now.  Further more, I really do not think anyone gives a darn.

Without dementia, maybe I could adjust to my new surroundings, make friends, find something to do.  But, my mind is constantly in the Navy and those experiences related to the Navy.  And, no one either cares or wants to hear about my Navy experience.  I once said this area was very unfriendly.  Now I know it is me.   I am alone, in a sea of people, that don't speak my language and cannot see me.  Invisible and unheard.  In total isolation.  Even my wife cringes when I start to discuss Navy experiences.  But, maybe she has heard them all ten times before.

Do I answer questions honestly?

This question and sexual function questions are probably the two hottest topics on the care giver's mind.  Every time I visit my neurologist or my psychologist, they ask me if I am suicidal or homicidal.  I always answer no!  How do they know I am telling the truth?  Now, just for the record;  I am not suicidal and I like women!

There are other, less weighty questions I get asked on a regular basis.  Are you OK?  How are you doing?  Is everything OK?   My GP always asks if I feel safe in my home?  I always answer yes because I don't want to be placed somewhere the government thinks I would be safer!  See, there is a method to my madness.

I read an article today about Alzheimer's and Dementia patients ability to act "Normal" when required, for a short period of time.  I hope they did not spend too much money for that study.  They could have just asked a few of us and saved the money.  I have know for quite a while, and so does my wife, that  can put on a show of normalcy when required.  Now, the length of time that lasts is diminishing as this thing progresses.  But, I can still pretend to be OK for a while.

So, how does a care giver or doctor penetrate that layer or facade?   Maybe some never do.  My Father in Law seemed perfectly normal until his wife passed away.  Then his facade of normalcy shattered and we all knew he had dementia.  But, as long as his wife was alive to control him, and direct him in his daily tasks, he seemed the same as when I met him.

Do I answer questions honestly all the time.  No!  Yes, that is an honest answer!  Sometimes I feel terrible but say I am fine.  Why do we hide the facts of pain or mental confusion?  To hold onto the facade of normalcy.

There are some questions I always answer with total honesty.  Like; Do you feel good enough to drive?  If I have the slightest mental issues, I will NOT drive.  Why?  Because one mistake will cause me to loose my driving privilege totally.  So, honesty is imperative here.  Also, did you take your pills?  Did you take the dog's pills?  I always answer those questions quickly and honestly.

My wife always knows if I am not telling the truth or all of the truth.  Sometimes she let's me live in my facade and sometimes she will pry and dig until she discovers the truth.  Sometimes like a game of 50 questions. Sometimes, that is painful for me.  But, she feels she needs to know.

So, now you know from one LBD patient that we are not always honest in our answers to your questions.  But, you knew that already.

Saturday, April 12, 2014

Dog pills now make a pattern

This morning, I woke up at 0830.  Got up, and went to take my thyroid medication like normal.  A few minutes later I discovered that I had taken Marcel's thyroid medication again!  This is now a pattern and not an isolated incident.

So, now my wife will take over administering the Dog's medicines.  The pills re not the real issue.  My recent loss of my ability to organize actions is.  This loss denotes a plateau drop in my mental functioning. With my pending surgery, that drop is not welcomed.

I have noticed mt inability to organize my thoughts and actions is a threat to my independence.  Yes, I knew it was coming and intact, I have had a longer period of good mental functions than I should have. That is because of my neurologist in Virginia.  But now, either the meds have lost their effectiveness or most likely, the Lewy Bodies have taken over more of my brain, tangling up my executive function.

So, I will have to concentrate on doing one thing at a time.  QIth my Wife's help, I will be OK for a while.

Friday, April 11, 2014

New physical challenges

A few days ago, I felt a familiar pain in the left side of my groin.  I made a doctor's appointment and today was the day.  My doctor performed the usual manual check; "Turn your ear to the left and cough"  And the results ere as I expected.  I am the proud owner of a new hernia!!

It is not my first hernia.  I had a large hernia on the right side a number of years ago, before my LBD diagnosis.  That hernia was repaired TWICE!  Yes, I blew out the repair job.  I asked the surgeon if he guaranteed his work, but he said I had exceeded the warranty conditions.

The last hernia, the blow out, I remember doing.  I was lifting book boxes during a move.  The first hernia I never knew I had.  No pain no indication until my doctor did a physical on me and did the normal male check.  This one is a surprise too.

Now, I will be totally honest.  As a Navy Gunner's Mate, I abused my body for the better part of 20 years and then ten years of my Civil Service career.  So, it is no surprise that parts of my muscle and bone structure are worn out.  I tore the rotator cuffing my right shoulder and had it repaired and now the left shoulder is torn and needs repair.  I was rode hard and put up wet!!

Of course, the concern is being placed under general anesthesia with LBD.  As I have been told by my neurologist and GP in Virginia, chances are I will not wake up in the same Zip zone and possibly not in the time zone!  But, since coughing causes some severe pain, this thing has to be repaired!  I can live with the left shoulder pain, but not the hernia.

But wait, since I am gong to chance General Anesthesia for the hernia, maybe I can talk the shoulder surgeon into working on my left shoulder at the same time!  It will save the insurance companies and Medicare some big bucks since I will already be in the hospital and asleep!!  I need to look into that one.

This is just another challenge in life.  Not a big deal, although the worst pain I have ever had was related to BOTH hernia operations!!  So, I hope pain meds have improved!!  I will keep you posted, if I wake up in the same time zone.  If not, it won't matter.  I pretty much live in my own world anyway, most of the time.

Wednesday, April 9, 2014

Latest Psychologist visit

Yesterday, I had my second visit with a Psychologist.  I continue to be impressed with his caring nature and interest in my well being.  He is easy to read!  Every time i say something he finds interesting or maybe even identifying a problem, he begins to write copious notes!!  Scribble, scribble, scribble, while never missing a thought I am discussion or any body language I may be transmitting.

We discussed at length, how I deal with the impact of LBD.  One of the things I told him, that caused much scribbling, was my view of the future.  While my wife is still very concerned about the future.  I can not even see a future!  I used to be very involved in future planning.  I had savings plans, next promotion plans, retirement plans, trip plans, next car plans, next house plans, I had a plan for everything that could possibly happen in the future.  I continued that planning through the early part of my disease, as if I was going to beat this or even be told they made a mistake.  Now I know, neither is true and I can no longer see even tomorrow!  I know this is a frustration to my wife, but it is where I am.

Another thing we discussed at length is my worries about being accepted into a Continuing Care Retirement Community.  These communities want new residents to be fully functioning when they move in.  The longer we have to wait for an apartment at Azalea Trace, the more remote the possibility that I will be accepted!  He encouraged me to cons idea a community close to us in Spanish Fort, Alabama.   I told him that facility was too far away from our now comfortable footprint of doctors, Bible studies, and family.  So, my frustration and anxiety continues.

Just the same, it is good to have an outsider to confide in and discuss issues that are bothering me without having to consider the feelings of the person I am talking with!   I don't have to carefully pick my words with him.

The last topic we discussed came with homework for me!  I told him I now felt I was in decline and possibly the last decline.  The final, slow, good bye.  He did not judge my statement or try to reason with me.   But he did ask me to provide him reason, feelings, noticed declines in physical or mental ability, on our next visit.  I have already started my list.  Again, this is good, since he did not try to talk me back to "Normalcy".  He just wanted me to document my feelings.

After two visits, three house of counseling, I can say emphatically, that this is good for me!  I do have on wee question I need to ask him.  Since he is from Alabama,  wonder if he is related to the famous NASCAR racing family, since his last name is Yarborough!

Thursday, April 3, 2014

Confusion, withdrawal, and mental fog

I have written recently about the progression of my LBD. Recently, I have been experiencing more intense and often mental confusion.  Additionally, I am more withdrawn and I seem to love in my thoughts instead of the world around me.  I am actually repulsed by life!

I find myself standing in a room not knowing why I am standing.  Doing anything that causes me to go out of the house is a chore at best and repulsive most of the time.  Linda and I lead a Bible Study at a local Assisted Living Facility.  I love the people there and we are always welcomed and treated with love and respect by the residents and the staff.  But getting ready to go, studying the lesson, and preparing to lead the Bible Study, is like pulling teeth!  Once we are there, I enjoy myself.

This confusion and cognitive fog is more oppressive than ever before and I feel that no one noticed my issues, or cares about my well being.  I am writing from my emotional base right now.  Logically, I know my wife cares deeply for me.  Yet, getting constantly corrected for simple things adds to my dismay.  The other day, I got yelled at for sitting in her new chair, which is unused and sitting in her unused office!  I will never touch that chair again!
I have asked to go to a once a week event provided by the Alzheimer's Association that is directed at those with Mild Cognitive Impairment (MCI).  I know I am a bit past that, but I think it would be good for me to interact with those who suffer similar issues as me.  It has not met with support.

My recliner is my place to slide into my mental world of relaxation and security.  While the television is normally on, I only watch a few shows a week.  Other than that I am either on the Internet looking at the diminishing list of things that interest me, or I am deep in thought about my past and friends that I miss.

I actually view the fog and confusion as my friends.  The help me escape from a world I no longer like!