Wednesday, April 23, 2014

Where I am, mentally, now

It is time to take inventory of where I am mentally.  I have written recently about the changes in my mental condition but I have not really told you exactly what has changed.  So, here goes.

First, my memory has degraded and I have difficulty recalling important facts required for living.  For instance, my address, zip code, telephone number, and the names of the medicines I take and for what.

Second, I cannot regulate my body temperature.  That is an autonomic function and one that is now being effected by LBD.  Another autonomic function that is being impacted is bowel and urine control.  Enough said there.

Third, when I ride in the car, speed is amplified and distances are much shorter between the car in front of us.  I yell for my wife to slow down and stop or back off from the car in front of us.  My eyesight is being impacted by the LBD.

Fourth, I cannot translate written instructions, like a cooking recipe, into physical actions.  I simply cannot comprehend what I read.

Additionally, I have noticed some physical issues increasing.  For instance, at night, when I first lay down, my body convulses.  I violently shake from head to toe a couple of times before my body relaxes.  Also, my stability walking is getting worse and my legs hurt constantly.  I am weaker and I have very little energy.  So, there is progression there too.

Naturally, I have problems holding meaningful conversations and I have difficulties finding the word I want to use.  This is more prevalent in the evening.  My mind spends most of the time in the past.  I often tell stories about my Navy past whenever I get into a conversation.  Also, I get frustrated and angry when people do not want to listen to my stories.

These are normal changes for the state of my disease.  If you are new to LBD, this gives you an idea where your loved one is headed.  If you are my friend or family member, if you want a meaningful conversation or information from me, you better act quick.  It seems the strength of Lewy Body Dementia is overwhelming the effectiveness of the meds.

One other issue.  My wife has noticed that when she says something to me,  I say "What" immediately.  It is not that I can't hear her, it is that I am processing what she says and I have the need to reply to her immediately, even though I mentally have not processed what she said.  Again, my brain can't process things very fast and this is my defensive reaction to that slowness.

Monday, April 21, 2014

Everything seems so far away!

Have you ever woke up from a nap and everything seemed far away?  The voices you heard were distant and everything you saw seemed distant of as if you were looking through a tube?  I feel that way most of the time now.  It is the newest evidence that the journey is increasing in intensity.

It is somewhat frustrating because I feel so disoriented.   I especially get this feeling in crowds like I described yesterday at church.  In crowds the "Distant" feeling makes me anxious and fearful.  It is as if my sensors are maxed out!  I also have this effect when riding in the car.  For instance, when my wife is approaching a vehicle from behind, the car seems to approach us much faster than she sees it.  I start to yell for her to stop!  She handles it well, but I bet it is aggravating for her.  When I drive, yes, I still drive but not alone, I stop much farther back than she does or I probably used too.  I suspect that frustrates my wife and the other drivers on the road.  I guess it is my turn to aggravate other drivers!!

All of these issues point to progression.  I just hope the progression does not keep me out of a place to live.  Both the Navy Home and Azalea Trace require me to be a "Full Up Round" by their evaluation at my entrance.  We have decided that we will move me into either one that opens up first.  My last communications with the Navy Home administrator stated that I should expect a room in November of this year.  We have no indication on Azalea Trace.  So, we will see.

We always knew this was progressive disease.  We have have experienced a slow progression up to now, so I have nothing to complain about.  And, as my friend, the In Service Engineering Agent for the Diesel Engines on the U.S. Navy Mine Sweepers, Betsy Walsh, says;  It will be what it will be!

Sunday, April 20, 2014

As time goes bye

We had a wonderful morning at Church today.  Easter Sunday is always an uplifting day.  The reassurance that our Savior, paid, in full, the entire cost to purchase our freedom from the penalty of our sins lifts my spirits and calms my soul.

We had a breakfast at the Church before Sunday Services.  I still think it is strange that we do not have a Son Rise service first, then the breakfast, and then, Resurrection Sunday Church Services.  But, maybe I am old fashion.

The large crowd at church overwhelmed me.  There are too many people talking, moving, interacting, children running around, crying, food smells, and furniture in different places.  It is sensory overload for me.  As my wife drove home, I told her I was not doing well and she told me she understood.  She was talking with a lady before we left the church and my disease came up as a topic along with our possible move to the Continuing Care Retirement Community.  As she told me about that conversation, I broke in and told her;  "They better hurry and get me in soon or I won't qualify!"  She told me she knew that.

It is true, I wrote before that I was experiencing an acceleration in my rate of decline.  I see my decline more and more each day.  My lack of ability to translate directions into actions.  Lost thoughts, lost words and a general decline in my conversation skills.   More dreams, REM sleep disorder issues, and some other issues.

I really have no complaints and if I become catatonic tomorrow, I have had a wonderful life and up to now, my experience with LBD has been gentle and slow.   I have no right to ask God for an easy decline.  I only ask for his grace and mercy.

My mind wanders and I get lost in memories.  I make plans I know will never come to pass and then forget them.  Little seems to be important to me anymore.  I do not want to go anywhere or do anything.  I sleep in the afternoon and stay up most of the night.  I get the names of my son and grandsons wrong.  I am confused more that not.  But, I know my ticket to Heaven is bought, by Jesus.  Nothing else matters.

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.