Tuesday, October 6, 2015

My Wife is already a Widow!

I was sitting here thinking, as I often do.  No TV, no music, just silence.  I was reflecting on my Wife's response to my disease.  She has it difficult considering she is living with a ticking time bomb.  Unlike having a spouse that, while you understand they will die at some time, she is dealing with the realization that she is watching me die right now!

This topic came into my mind because the Chaplain here at Azalea is starting a Caregivers Support Group and my Wife was considering if she wanted to attend or not.  

When I was on active duty, as a deployment approached, she became more and more distant with me.  Her view was, the sooner you go, the sooner you will be home.  I found that quite frustrating as a young husband.  Now, I understand it a little more.  And I truly do understand her mental status as a widow, already.

I also find it interesting that she understands my attitude, or "Fight" response may extend my life.  Last night she told me not to let my disease progress too fast.  Of course, I have little or no impact on how fast this disease will progress.  I am just along for the ride at this time. And truthfully, I have little fight left in me.  I would just as soon have this over with!

Unlike her, I see this unending, ever increasing, fight to be exhausting, demoralizing, and tedious.  I am NOT the person I once was.  I have few of the capabilities that I once had and I find that fact frustrating.   Every single part of my life has been negatively impacted by Lewy Body Dementia.

But, I just thought I would share m observation with you.  That is why I write this blog.

Lunch with my Pastor

My Pastor came over for lunch today.  I enjoy His company and value His input so I was anxious to sit down with him and discuss things.  He wanted to get an update on the progression of my LBD.  That is why I am writing this post.

First of all, He asked for the update which shocked me and made me happy at the same time.  It is hard to explain this disease in one word answers.  So a discussion over dinner make the discussion easier.

Second, He actually wanted to understand how I was doing.  Maybe He reads this blog.   He did ask me an interesting question.  I was explaining to him that the recent changes in the diseases impact on me has finally put me in the place of not finding LBD interesting!  Up to the recent changes, I have looked at this disease as an inconvenience or an issue I could deal with.  Now, I realize I can no longer compensate for the effects of the disease.  It was an eye opener to say the least.  His reply was a question:  Was I angry with God?  My solid reply was NO!  God has been very gracious with me through out this entire journey.  God made it so I got an early diagnosis.  God sent me to a very aggressive Neurologist.  God has made the progression of this disease slow up to now.   God has taken good care of me and I believe He will until he takes me home.

Third, and for those of you who read this, the most interesting revelation of the conversations was the fact that I cannot describe what is happening in one, concise, description.  I found myself looking for the things that were causing me issues!  I had actually forgotten many of the things that ARE wrong.  I would remember things as we discussed other issues not related to my disease and would then report them.  I find it strange that I cannot list everything that is wrong in one, concise list!!  But, it makes sense that if my memory is broke, I would not be able to recall everything.  But, again, that fact was a shock to me!!  It truly was the first time I ever sat down and tried to have a conversation about my disease with someone who actually cared.

So, be careful what you ask for!  You may get it and then have troubles dealing with your request.  I wanted someone to ask me about my journey with LBD and when that caring person came forward, I was at a loss for words.

This was a revealing day!

Monday, October 5, 2015

The first day of Physical Therapy

We decided to ask my Neurologist for Physical Therapy (PT).  He sent a prescription to the PT group here at Azalea Trace and today was my first day.  Wow!!  Am I impressed!  The PT therapist did a one hour evaluation of my rigidity in my legs.  She put me through my paces.

But what impressed me the most was that she actually knew what Lewy Body Dementia was including all of the issues related to the disease.  Then, she engaged me in a conversation to find out how the disease was impacting ME!!  Double WOW!!!

I am very encouraged and I am looking forward to my next PT session on Wednesday.  I do not know if the PT will help or not, but the attitude of the PT staff has impressed me beyond words.

This is one of the main reasons we decided to move to a Continuing Care Retirement Community.  All the help we need is right here under one roof!  More later,

Monday, September 28, 2015

I finally figured out what I want!

Tonight, I finally figured out what I want in regards to how people treat me over this disease.  I want someone, anyone, to sit me down and honestly, sincerely, ask me to explain how the disease impacts me.  How I deal with it, and anything else they can think of to ask.  I want them to ask these questions without that accusatory tone in their voice and without the attitude of; "You're a phony!!"

I am not being sarcastic.  I truly just want one person, to become personally interested in my struggle with Lewy Body Dementia.

Enough said.

Sunday, September 27, 2015

A study in Lewy Body Dementia

I received a comment from a Medical Student in the United Kingdom stating that she used blog to help her understand Dementia from the first person.

My Wife, who spends many thought-filled hours trying to dissect my disease, encouraged me to address some of my more pronounced hallucinations and relate them to what she believes may be their basis. She also co-authored this post.

We know pronounced hallucinations are one of the main symptoms of LBD.  So, they are important in understanding this disease and how it impacts the patient.

For instance, I have written about my hallucinations of me being trapped by fully decorated and illuminated Christmas trees.  Each time, these Christmas trees surround me and prevent me from getting out of the room.  They actually impede me from going anywhere!

Now, let me unpack this in my Wife's analogy.  Until two years ago, Christmas was a very unhappy time for me.  I dreaded the Holiday!  So, Christmas trees represent all that is wrong in my life.   Therefore, I am being trapped by the things I hated from my past.  She also draws a correlation between this hallucination and a drop in my cognitive abilities.  I agree with that.

Or, the man walking across Interstate 10!   I was driving in moderate traffic on clear sunny day.  About 100 yards in front of me was a bridge that crossed the freeway.  I saw a man, as real as any man I ever saw, walking across the freeway, from one bridged abutment to the other.  When we got even with the bridge abutment I looked t my left to see where the man was.  My wife asked me what I was looking for and I told her;  The man walking across the road!  She told me there was no man.  Earlier in the week a man had been walking across a city street.  Did my mind bring that forward and place the man on the freeway this time?  Does Lewy Body dementia bring events from the past to the present - out of the context of current reality - but definite events that the mind processed prior.

Then, when we were back in Virginia, we went canoeing on Lake Wright.  Riding in the car, I saw a bright red sports car.  I do not now remember what kind it was, but it caught my eye and I was discussing it's virtues.  Then, when we were on the lake, in the canoe, I was startled by a red power boat close to us!  Power boats are not permitted on Lake Wright, so it was not there.  Again did my mind bring an interesting event from the past to the current reality - not really an hallucination but a past experience the "Lewy Body mind" puts in the present & doesn't realize it doesn't belong there.

Third is the plane crash.  One day, with my wife driving on a quiet residential street, I saw, clearly, a DC-3 flop over on it's back, presenting that unmistakable DC-3 belly and wide wings, and crash, nose down, not a mile in front of us!!  Now, I actually saw an A-6 with 5 external fuel tanks flop over and crash in front of me near NAS Oceana when I was the Command Master Chief at VA-55.   So, again, this hallucination may have been related to and actual life happening that the "Lewy Body mind" places in the present.

And finally, we were in an Eye Glass store.  There was a dirty, unkempt, homeless man hassling the receptionist.  She handled it well and the situation was defused.  Then, a few weeks later, we were back in the store to pick up our glasses and I was staring at a chair, where I distinctly saw that man sitting and I felt he was going to cause trouble.    I told my wife I was going to intercede and solve this problem.  She informed me no one was in that chair!  She believes my issue with the unresolved actions of this man, weeks before manifested the hallucination on this day.

My Wife wonders if LBD patients bring past memories into the present mind function and live them out.  And, I hope you remember me writing about being in our home, but in my mind, I was on a AEGIS Class Cruiser, yelling at a group of young Gunner's Mates for gun decking PMS and not doing Pre-Fires by the PMS Card.  I could see, smell, feel the ship.  I was actually walking through ship spaces!!!  In my mind, I was on that ship at that time and those people were real and I was talking out loud! Not in my mind.  A telephone call brought me out of that hallucination.

Do we short cycle our memories and bring them forward?  If our memory can be represented by a sine-wave, is that sine-wave shorter and more compressed in LBD patients?  Is this why past memories and reality get mixed together in the LBD patient?  And, why do Alzheimer's patients stay in their mental comfort zone when LBD patients move in and out.  All these questions need research.  Does the Alzheimer's mind have a clear break in memories - a chasm the mind can't go forward or skip over - so the patient is stuck in the past and can't live in the current or move into the future?  Does the Lewy Body mind bunch up memories and mixes the past with the current and can't sort out the difference.  Do Lewy Body patients stay in current reality longer because the Alzheimer's "chasm" isn't a part of Lewy body dementia?

Does the Lewy Body brain lose the rhythm of normal brain waves, distorting the memories kept in those waves?  Does it run too fast & bump or blend memories together - like a heart that has an irregular heart beat?  Does the Lewy Body brain have a shorter span of brain waves or a faster flow - what causes the out of sequence memories that appear to be hallucinations?

Conversely does the Lewy Body brain bring unusual, or unresolved events from the past back into the present  to try to resolve or make sense of something the brain is dwelling on?

Hallucinations are a major part of LBD.  They can be frightening, as in my Christmas Tree Hallucinations.  Or, they can cause you to change the way you live your life, like my hallucinations of the man crossing the freeway caused me to stop driving.   But, the fact is, hallucinations are part of LBD and the are a big part of my life.  They can be harbingers of declines in cognitive ability or reflections of my past.  I truly do not understand them and only write this at the bequest of my Wife, who is deeply involved in my care.  I am blessed to have her and her interest in LBD.

Saturday, September 26, 2015

Time to reduce things that I do

I wrote about my cognitive decline and my failed attempt at being a name tag maker.   But, because of the stress of preparation and travel, I have decided to give up our Ministry at Bay Breeze Assisted Living Facility.

We have been active in that Ministry for over three years.  It has been a blessing to us and I believe to the residents of Bay Breeze.  I was Blessed to Baptize two Men from Bay Breeze!  And we have studied  in-depth, at much of the Bible.  We have brought the Communion Table to these folks, a first for they community.  And the fellowship of those folks has strengthened me.

This Ministry started when we lived 5 minutes from Bay Breeze.  Now, it is a 40 minute drive, one way.  Then there is the time to prepare an in-depth, meat and potatoes, Bible study.   Many of the members of this Bible study group are well versed in the Bible!!  That means I must be on my toes!!  They have taught me more than I have taught them!

I love these folks and the staff.  But, it is more than I can to now.  And I really do not like to leave Azalea Trace.   I am, more and more, becoming a hermit in this 120 acre community.  Yes, I like to walk outside around the buildings.  Yes, I like to use the golf driving range. Yes, I wash the car in the car wash stall.  But all that is rift here, where I can still see my building.  It is familiar, comfortable, and now, my home.  I do not like to venture outside of what is familiar.

Then there is riding in the car.  Since things seem closer than they might be, I get a bit nervous and twitchy as a passenger.  In truth, I drive my Wife crazy!!  STOP!  Watch out!!  You're too close!!  STOP!!   You get the idea.

So, we will reluctantly say good-by to our friends at Bay Breeze.  I am disappointed, but, it is a necessary concession to Lewy Body Dementia.   It is also another illustration that I am progressing more into the third quarter if this game with LBD.  Oh, and by the way, I am loosing to LBD.  But, I knew I would.   While I thought I was winning in the first and part of the second quarter, I started loosing in the second half of the second quarter.  And now, we are well into the third quarter and LBD is running up the score!!  At least, that is the football analogy.

The inability to learn new skills that I wrote about before and my realization that the Bay Breeze ministry was wearing me out and over whelming me has knock me down emotionally.  I am not sure what is coming next.  I know it will difficult, uncomfortable, and challenging.   I know I am no longer up to the challenge, so LBD will win.  

I have lost the ability to learn new skills!

We live in a wonderful Continuing Care Retirement Community (CCRC) called Azalea Trace.  I know I have written about it before.  The residents here do many of the more skill related everyday chores as volunteers for the community.  It truly amazes me what they do and how much they add to the lives of the residents in Independent Living as well as Assisted Living and Skilled Care.

For instance, my wife uses her Library Masters Degree in the large Library Azalea Trace has.  I Preach as a stand in for the Staff Chaplain on Tuesdays in Skilled Care.  Recently, I took on the responsibility to make signs and name tags for the community employees, residents and activities.  The equipment they uses is computerized and very up to date.  The individual that has been in charge of this task has done an exceptional job and took great pains to train me.

However, I have had a recent down turn and tonight I came to the realization that I just cannot master this skill.  I can't even manage my time in getting to the shop.  It seems my time just slips through my fingers.

As a further illustration, to me, that I just cannot learn this task, tonight I went down to the shop and tried to make some name tags.  I did OK on the computer part, but when it came time to set up the engraving machine, I screwed up!  I damaged the mat that holds the tag for engraving!  I just could not remember how to do what Oscar taught me to do, twice.

So, I came back to our apartment, realizing I am now a Cognitive Invalid.  I cannot learn anything new.  My brain will not retain new information and I cannot move new info into my hands for application!!

I typed a letter of resignation explaining my situation to Oscar.  I hate failure and I hate letting Oscar down.  But, I cannot do what I cannot do.

I have written recently about being in the second half of this disease, and this further illustrated my demise.   So, as my Wife said, we will focus on what I can do.  She always finds a way to make things good.

But, there is more...