Monday, September 29, 2014

We passed the test!

Today, we passed the cognitive ability test at Azalea Trace and we are officially under contract as Life Care Residents.  This means, whatever health or mental issue occurs, we are taken care of by the facilities at Azalea Trace.  Of course, they do not have a hospital, but full rehab facilities are there as well as skilled nursing, assisted living, and memory care.  We will be in the Independent Living portion of the community.

As we walked around and ate lunch today, I could not help but be amazed at the number of people that came up to us and introduced themselves. As you know, this has not been the common practice we have experienced here.  We ate lunch with a very nice couple that have been residents for a year.  The Husband told me, he has never regretted moving in there, as he enjoyed his custom made chocolate soda for desert!!

The Cognitive testing was administered by the RN that oversees all health care.  She was very pleasant and interested in us.  I enjoyed her.  Which is good, because her office is right next to our apartment.

Wednesday we meet with the head of Facilities to pick all the remodeling things for our apartment.  Colors, cabinets, flooring, moving walls, bathroom fixtures, everything!  That should be fun, until I have to pay for it,  But, it is our home.

I even met with the Staff Chaplain.  He offered me Pulpit time already!  Seems he needs some Sunday relief ever once and a while and he has had no one to depend on! It was nice to be wanted again.

So, today was a good day and we feel good!  More later.
    

Friday, September 26, 2014

I do not react well to stress

As I am sure you know, we are in the middle of the approval process to move into Azalea Trace, a continuing care retirement community in Pensacola.   If all goes well, we will sign our contract for occupancy on Monday.  Before that, we meet with the nurse and go through a cognitive skills test of some magnitude.  We have been assured by the staff that we will be admitted.  We did drop our medical screening reports from our doctor off today.

The next step will be to select the changes that we want made to our apartment.  We are not planning anything to drastic.  But we are going to move a wall to open up the kitchen.  Our tentative move in date is the first week of December.  So, things will begin to move quickly after Monday.

We have to sell our home, liquidate some furniture, and other home items including some larger kitchen equipment.  We will eat our main meal in the dinning room of Azalea Trace so we do n to need all the kitchen equipment required to prepare a meal for a Cruiser size ship's crew!!

Today, we went to the credit union and moved the money required for the down payment of the Entrance Fee.  We than will have to pre-pay the cost of the renovation and then, before we move in, pay the remainder of the Entrance Fee before we move in.

All of these events, issues, financial decisions, decorating decisions, have me stress and upset beyond belief!  Change is difficult for me and this will be much, much more difficult than the move to Florida three years ago.  While the end product will be good for me, the next two months are going to be tough.   I find myself getting angry and stressed whenever we discuss these issues.  My wife has to deal with these issues and she does good with me.  But I know my reactions stress her too.

I have an appointment next week with my neurologist and I am going to ask for some meds to help me deal with my anger and stress.  He has said before he could help with these issues and I am now ready to let him help me.  So, I will be adding another medicine to my daily regimen.

Living with this disease is challenge without any changes in my life.  With changes, I am overwhelmed and much more effected by my anger and stress.

Thursday, September 25, 2014

New OLD issues!

I was doing some research on the Autonomic issues caused by LBD.  I have had and written about a number of these problems that I have encountered in increasing amounts.  Inability to control body temperature, urinary and bowel issues, and even vision issues.  But, today I learned about two that I did not know about.  First one is irregular heart beat.  Now, I was diagnosed with that a while ago, but was that caused by the LBD or a heart issue?  I cannot say.  Then there is the fainting!  I have had issues with the room spinning, getting dark, and me passing out or almost passing out, ever since the beginning of this disease.  Now I learn it may be caused by my Autonomic system not being able to control my Blood Pressure!    It is already documented that my BP is erratic.  But now I know, or at least strongly believe, that this is caused by LBD!

These are important symptoms to understand.  They also let me know what parts of my brain the Lewy Bodies have effected.  But it also causes me concern.  I have passed out and get very light headed very often.  What is that going to become?  And, during my recent hernia surgery, the doctor asked me when I woke up;  Do you have an irregular heart beat?  Obviously I do and now I know why.

As a person with LBD, I have found out that the research into what this disease causes and effects is up to me!!  Most doctors, including neurologists, can't even spell Lewy Body Dementia!  It's true, I have had to spell it for doctors before!!  So, discovery is up to me.  Which means, it is up to YOU if you are a caregiver or person with LBD.

This truth is sad, if you think about it.  But it is the TRUTH!  So, arm yourself with reliable information before you see your doctor or have to go to the Emergency Room.  It may save your life!

Tuesday, September 23, 2014

Anger comes out!

Today, we had to go get my wife's medical exam for our pending admission to the Continuing Care Retirement Community.  After that, my wife recommended we get a haircut.  The lady who cuts my hair cuts my Wife's bangs also.  She does a good job, but she is set up in a women's beauty parlor with all the ugly smells of those places.  I know because my biological Mother lived behind a beauty parlor and I lived with her for about a year.  That is another story, but suffice to say, I got myself in a lot of trouble because she worked until 2AM every night!!

In any case, the barber was taking a long time with the fellow before us and after she was done with the haircut she was doing smart phone training for the idiot she had just barbered!!  After ten minutes of this foolishness, I stood up and asked her, loudly, are we cutting hair or selling cell phones?!   She told the patron I was kidding and I convinced these two fools I was certainly NOT kidding!!!  The fellow slinked off, apologizing to me.  I did not accept his weak apology.  I would rather have kicked his but!  Then my wife sat in the chair for her short trim.  I was in a seat, around the corner from where the barber chair was, so I could not hear their conversation.  The barber told my wife;  "It's OK, I understand, my Mom has dementia too."

It was nice that she understood and my wife appreciated that.

Earlier in the day, at my Wife's doctor's appointment, a topic, I will not divulge, that is very emotional for me, came up.  I exploded loudly in the doctor's waiting room!  I walked around outside of the office while my wife had her appointment.  I was calmed down by the time she came out.

The point here is, I am loosing my control of my temper!  Thing that aggrieve me or anger me I now let whoever is near know.  I realize this is a product of the failure of my social filters.  But, it is a big negative step in the progress of this disease for me.

Believe me, I try to control my temper and in the past, I have done well.  But recently, very recently, that control has failed.  Especially when I am tired or it is the evening and my sun downing has taken effect.  Clearly, the Lewy Body tangles have finally disabled the portion of my brain that controls my emotions.  I have also had a strong urge to cry recently.  Another classic symptom of dementia.

So, here we go dealing with a new issue.   I wonder how this is going to turn out?    

How I react to things that don't go smoothly!

How I was before LBD is not important.  What I did before LBD is not important.  How I deal with life now is.  And I do not do well or react well to things that do not go as planned or smoothly.

For instance, if something we plan get changed, or delayed, my immediate reply is to quit, or cancel the contract, event, purchase, or what ever it is!  If that purchase or event does not happen as advertised, I want nothing to do with it!

I have said before how the mere discussion of our budget drives me into fits of anger, depression, and introversion.  I want nothing to do with our finances.  Now, it is not that we are not doing well.  It is that I do not want any connection with the topic of budget.

I now seek the path of least resistance.  And, when things become choppy, I turn around and retreat.  Why, because if I don't, I will blow up!  And that will only make everything worse.  No, I tend to stay by myself, alone in my thoughts, remembering the things of the past.  Asking forgiveness for my past sins and treasuring the good times I have had.   I do not pay attention to the majority of the news.  And if I do see what is going on in the world or my co unity, I shut it out of my mind as soon as I can.  The world will have to go on with out my input.  I prefer the company of old shipmates, my wife, and my two old poodles.

Friday, September 19, 2014

I have dreams!

I have commented before about how real my dreams are.  Many times, I wake up, continuing what I was doing in the dream.  Then, long into the day, I realize I was "Chasing a Dream" in reality.

I have had a continuing dream theme that has be owning and operating a large motor yacht.  I am at the helm and we are going at a breakneck speed.  No matter what I do, how I turn the wheel, or adjust the throttles, I cannot control the boat or direct it's course.  Then, I see a pier, and I am obviously going to crash into it!  Then, BANG!!  I crash into the pier in a ball of flame and explosions!  And I wake up.

Today, as I was drifting into the relaxation of my afternoon nap, that dream came to mind and I began to ponder what the meaning of this dream was.  Never before had I ever thought about this dreams meaning.  Nor, was it ever evident to me.  But today, the meaning became very evident to me.

The dream's meaning is loss of control, and specifically loss of the control of my life. LBD has robbed me of that which I cherished for so many years of my life.  For most of my adult life, I have controlled where I went, what I did, and even the course of my career.  I thought!  Of course, I now know that God is in control of my life.  I also know that all the days of my life were predestined and recorded in God's book before I was formed in my Mother's womb!

Those of us with any dementia, will, eventually loose control of our lives.  But, truthfully, we never have control of our lives.  That personal control is just a mirage in our minds.  And I have learned that there is "Peace" in understanding the fact that we are never in control and surrendering control to God is the answer to inner peace. Now, that dream will no longer haunt me.  I am at peace with my disease and the results of it.  Now there is knowledge worth having!

Tuesday, September 16, 2014

This is a busy week!

We are very busy this week.  Well, busy for us.  we have to complete our required medical screening for our admittance to Azalea Trace.  That includes a TB test.  We also have a birthday party this week for a friend.  But, the big events are the Subaru Dealer's class on our new Outback and the Realtor placing our home on the market, both on Thursday.

All of these events take their toll on me.  For instance, today we had my doctor's appointment for the screening and then we had to take our 11 year old miniature poodle to the Vet for an annual check up.  So, by the time I got home, I was beat.  We even ordered Pizza instead of cooking!!  I will pay for that tomorrow.

One of the things that happens often happened again today.  Our Vet, who is a good Vet and congenial man stepped on my mental land mine!  He said, I did not look or act like I had dementia!  I was nice and he recovered well.  I still get sensitive over those comments.  Why, because I feel the person is calling me a liar or a goldbrick!  He probably was not, but that is the effect of those comments on me.  Think of it this way.  A person with cancer, say Leukemia, does not loo physically sick in the beginning or even middle of their disease.  But, when they tell someone they have Leukemia, that person does not say;  You don't look sick?  Are you sure that is right? Instead they say;  Sorry to hear that.  How are you doing?  Is the treatment giving you problems?  Or, You are looking good.  See the difference.

I know this seems petty to you.  But it IS an issue for me.  So, file that away for future reference!  Now, I know some of my good friends, especially my Navy friends.  They will "Burn" me every time they get a chance now.  Don,  You don't look sick.  Who did you pay for that diagnosis?  Did the VA do it?  Those are sugar pills aren't they?!  Yes, I can see it coming now.  At least I will be prepared.

For those of your who are caregivers, those of us with LBD get treated like our disease is a fantasy, we don't have it, or we have something else, by doctors everywhere.  When we tell a new doctor we have LBD, almost always, we get that blank stare, followed by the quizzical look, followed by; WHAT?!  So, be sedative to our emotions on this topic.  I am much more sensitive in the evening or when I am tree, or when I am on a downward swing with the disease.  And, since you, the caregiver should know when we are in these sensitive conditions, you could defend us and deflect some of the comments.  Either that, or watch me punch some one's lights out!  Your choice.

I will be very glad when we are finally moved into Azalea.  Then, I will be able to stop putting on the show of normalcy.  I can't wait!

Saturday, September 13, 2014

New experience!

Today, my wife took me to our Church early in the morning because it was Team Six's week to mow the 5 acres of our land.  I enjoy these outings because the Church has great mowing equipment and it is fun to mow the back 40!  But today, something new happened.

I was mowing back and forth in the back property of the Church.  I was mowing around some mature trees and I got confused as to which line of trees I was mowing.  So, I went to the next tree which was the wrong row.  I actually got LOST, mowing a big lawn!!  It took me a few minutes to know I was lost and even longer to find where I was mowing.  So, there were 54 inch mowed paths that went in circles and lines going no where until I figured out where I originally was.


I was laughing at myself, almost uncontrollably!  Now, while this is not a life threatening situation, it is a good example of how easily I get disoriented.  Something as simple as mowing in a straight line with a row of trees as a guide was completely beyond my, now reduced, mental ability.   This is why I never go anywhere alone and why I feel so frightened when I am home alone.  I never leave the confines of our home when my wife is out.

Again, I was not frightened today.  Instead I found my situation funny!  But, I also understand that what I used to do is now very difficult for me.  Another lesson from Mr. Lewy.

Friday, September 12, 2014

What did you say?

There is a story about an older fellow, who goes to his doctor and says;  I am worried about my wife.  I think her hearing is going!  The The man said he asked his wife to have her hearing checked and she reduced.  So, the man wanted to know if the doctor had an easy way for him to check and see how bad his wife's hearing was getting.  The doctor recommended that the man stand a fair distance away from his wife and make a statement in a normal tone and volume of voice.  Then, if she did not reply, close the distance by half and repeat himself.  Then, if she did not answer, come right behind her and repeat himself again.  So, that evening the man saw his wife at the kitchen sink.  He stood on the opposite side of the kitchen and asked his wife; What's for dinner sweetheart?  No reply.  So, he closed the distance by half and asked again; What's for dinner sweetheart?  No answer again!  So, he moved right behind her at the sink and asked again;  What's for dinner sweetheart?  His wife turned around to face him and said;  For the third time, meatloaf!!

Why did I relate this story to you?  I know I am deaf!  It is documented and my ears ring all the time.  But recently my wife is experiencing the symptoms of hearing loss.  It could be from being married to me.  I am loud!!  No one ever says they cannot hear what I said!!  I believe I speak loud because I cannot hear!  At least that makes sense to me.  Sort of cause and effect!  In any case, my wife is just like the woman in the story.  She will not go to the doctor and have anything new checked out.  He memory issues, hearing issues, nothing!

So, a few days ago I wrote about my wife's symptoms of dementia.  She has a genetic connection to Alzheimer's since her father had Alzheimer's and died from it's complications.    She also has the Tricresyl Phosphate connection with me.  So, there are at least two reasons to get checked for dementia.   Of course, I approached the topic, with little luck.

With the pending move to Azalea Trace,  I will not add any issues because I do not want to add any stress for her.  She has enough.  But, after we are settled, I will start out across the room and ask;  What's for dinner sweetheart?!  We will see how that works then.

The joke is courtesy of Betty Lou Jackson, who I worked with and endured many tough times with.  It is her Wisconsin humor!

Monday, September 8, 2014

The far reaching impact of the chemicals in Mil-F-17111 hydraulic fluid!!

Hopefully you know that I suffer from Lewy Body Dementia.  I believe, and my neurologist believe that this disease was at least partially caused by my extreme exposure to the hydraulic fluid that all the gun mounts and missile launchers ran on in the Navy.  In 1989, the Navy put out a message informing us that Mil-F-17111 had a chemical in it that caused cancer and was neuro-toxic.   The Navy then removed Mil-F-17111 from every system and replaced it with Mil-F-17111A or B, I forget, that had the chemical removed.

Flight Attendants won a case for compensation for Dementia caused by long term exposure to the same chemical!   However, the Veteran's Administration has denied my claim up to now.

Today, my wife and I were discussion issues and she asked me if I had noticed any mental decline in her.  Since my mental filters no longer work, thanks to LBD, I immediately replied; Yes!!  She asked me what I noticed and then she confirmed that she was noticing the same issues.  They shadow my early symptoms of dementia!!

How could she bee impacted by Mil-F-17111?  Easy, she washed my uniforms for years!  When we were in home port, I brought my dungarees, and later my wash khaki's home to be washed.  They were covered with Hydraulic Fluid!   Then, when I taught at Gun School, Great Lakes, teaching maintenance on the MK 42 Gun Mount, I was covered in Mil-F-1711 daily and my wife washed those uniforms.  Then, after retirement from the Navy, I went to work as a Tech Rep for the Navy at NAVSEACENLANT.  More hydraulic fluid soaked clothes for my wife to wash!  I believe there is a connection here.

So, I have a confirmed diagnosis of LBD and she may have some form of dementia.  Wow!  We will monitor progress and report as required.

Sunday, September 7, 2014

This is my survival plan

I write this blog as information for family and friends.  I also write it to describe how I react and how I am impacted by this disease.  I also use this blog as a place to blow off steam!  My wife does not read my blog because she believes this is my private place.  I have encouraged her to read these posts, and once and a while, sh reads a large grouping of posts.  I have no secrets but I do need a place to express my frustrations.

Yes, I see a psychologist once a month and I discuss mush of what I write here.  He know all!

I am having great difficulty dealing with the stress of the possible move to Azalea Trace.  Even the prospect of selecting flooring, cabinet, and paint colors along with deciding which walls to move, is completely overwhelming.  I would be much happier of they had a completed product that you just accepted as is.  But, for this much money up front, people expect some sort of customization.

We have spent our evening searching our files for answers to more questions than we answered to purchase our home.   The same for health issues.  Then there are all the copies of past tax returns, health plans and long term care plans.  I hope you may understand just how stressful this is.

All this stress has my stomach upset, I have a headache, and my ears are ringing very loudly meaning my blood pressure is up.  I am grouchy and snippy!  Maybe it is just time to go to bed.   But don't worry, all will be OK.  Good night.

A good day in Church soothes the pain!

I was happy when they said, let's go into the house of the Lord!! We had a wonderful day of fellowship in Church today.  Sunday School and Worship services met my needs.  I can now say, regardless of budget, that I am comfortable with our decisions on Azalea Trace.  Sometimes I need to get away from the outside world and listen to God.  Today, Church was the place for that.  Other times, it is in my study, or on a walk, or anywhere else.

When spiritual clarity comes, the issues of what ever you are struggling with, melt away.  The question in my mind was, why would a loving God place me in a position that was untenable.  The answer was, He will not.  Or if He does, He will give me the strength and wherewithal to persevere.   So, I have no worries.  I can do all things through Christ who strengthens me.  

So, I feel better, my wife is doing better, and we are doing the appropriate paperwork to deal with the three reviews required to become residents.  Those are financial means, physical, and mental testing.  Again, we can do this, with God's help.

During the progression of this disease, negative feedback, criticism, and negativity had increasingly caused me depression, anxiety, and my turn inward.  I don't like to watch the news, most television shows, or movies.   When I am challenged, criticized for something I have tried to do wheel, or yelled at for something related to my disease, I shut down!!  I do not yell, argue, or retaliate.  I just shut down.  There was a time when I would raise my voice, fight back for what I did, or even try to reason with the individual.  No more.

Why?  I cannot win!  I am no longer in charge.  I have ceded my position as leader because of LBD.  I no longer drive the car, spend the money, or make the money.  These are the facts.  Arguing or fighting for my position just makes everything worse.   So, I withdraw.

Many of you dealing with a LBD patient may see this and never knew why.  These are my reasons.  Don't ask your loved one, they most likely will not tell you.

Saturday, September 6, 2014

Comments from readers

I received a comment from a person who said that I gave her husband's actions words, or something similar.  That is part of my goal with this blog.  Another  goal is to use what I am going through to help other understand what their loved one's are dealing with.  Some of us are not too adept at discussing our feelings.  I suffer from that also, when it comes to m wife!  I am reticent to tell her what hurts or upsets me.  Yes, she knows many of the issues that upset me.  But, still, I say little!  I choose to suffer in silence for the most part.

The truth is, more and more, I stay quiet about the effects of LBD on my mental abilities.  I am more open about the physical issues.  And no, not because they are easy to spot.  My constipation issues are not easy to spot!  At least until they turn into diarrhea issues!  But, this issue over the costs of future care is one I will not discuss.

Look, I feel like a burden to my wife.  I am not able to do many things I once did.  I am negatively impacted by this disease mental and physically.  I am overwhelmed to the point of tears much of the time.  Just the fact that I get in the right side of the car instead of the driver's side is difficult for me.  Then, she has to deal with me jumping around in the car, screaming she is too close to the car in front, when we are still ten feet away!!    Remember, my depth perception is getting bad.

Look folks, LBD, unlike any other dementia, negatively impacts all of the brain.  Not just memory!  For instance, I am sitting here sweating because my autonomic thermostat is screwed up by LBD.  But wait, I know  will be cold in 15 minutes.  It is like I am going through menopause!

Your loved ones are quiet abut they suffering because if they talk about it, they feel it will further diminish their position in life.  For instance, my wife's position that we must move to the CCRC because of my disease.  YES!!!  She is right.  But, I don't need to hear that from her!  It hurts me to face the fact that I am the reason we are going to be tapping the retirement accounts before we are 70!  This is almost as frustrating as someone downgrading our suffering and symptoms by saying: I have the same issue, but mine is much worse than yours!  Or, you don't look or act sick!  Are you sure you have LBD?!!

Now, you may understand why we choose to just be quiet.   We know our issues.  We deal with them.

Another awakening this evening.  I found out, I am eligible for The Veteran's Aid and Attendance  payments because my doctor's have certified that I cannot live alone and I am incapable of managing my own prescription drugs!!  Now, we have too much money in our retirement accounts right now.  But that will change soon.

Just the same, this was quite a shock to me!   It is much like when OPM approved my disability retirement.  When I received the letter from OPM, my reply was; "I MUST be sick!"  Everyday, I learn just how sick I am.

The financial impact of future care.

I wrote yesterday that we had been offered a place at a Continuing Care Retirement Community.  I also said, even though we did a prequel, we now have to go under the financial microscope.   Linda and I have been looking at the costs and our income, and it does not compute!!  Now, we have money in IRA's that will help, but this place is expensive.  Plus there is the entrance fee, which is not cheap.  As a matter of fact, it is the cost of a good home!  Cash, up front!

I have also written about the fact that I do not run our budget and the discussion of money and finances causes me extreme anxiety.  So, tonight, I am in serious distress.

I am writing this now as therapy.  Yes, you are my therapy group.

The fact remains, that I need to get into a CCRC soon.  My mental cognition and my ability to deal with life has degraded lately and if we do not get me accepted soon, I will be at the mercies of the nursing home shuffle.  In other words, I will have to go where ever they have room and will accept me.  So, now is the best plan.  As I said yesterday, I THINK I can pass their cognitive skills test.  If I am having a good day!

My first reaction to Linda's declarations about our budget was to say;  We don't qualify, we can't do this, and we are not going to live there!!  That caused her some problems because she worries about me.  She told me she needed me in a facility that will meet hers and my needs as soon as possible.  I believe she understands where I am and where I am going, mentally.

So this is a very expensive decision.  But, it is expensive in money and human capitol not to take this opportunity.

I did tell you we had retirement savings to fall back on, but that causes my wife issues because she has always had the idea that money would never be spent!  My belief is, why DID we save that money?!!  What is the purpose of living frugally all your life, and then, not using the money you saved for retirement IN your retirement???!

This topic causes me BIG mental issues!!  I am now so overwhelmed that I have bounced in and out of  "Dark Place" in my mind.   Honestly, if my condition causes such a financial burden that we cannot afford to live the way we believe we should, ,,!  Well, hopefully you can see my frustration and depression.

Finances and budget have become issues I do not want to know about. If I spent our money on Corvettes, or other unneeded things, I might be at fault.  Yes, I have bought and sold more homes than the average man.  But, with the exception of the last house in Virginia, which I did not want to buy, we made money on every home!

Well, I am just venting.  God offered us this opportunity, He would NOT put us in a position that would ruin us.  So, we will go forward and trust God.  But, I don't want to hear about budgets again.


Friday, September 5, 2014

Good news!!

Yesterday evening, we received a telephone call from Azalea Trace Continuing Care Retirement Community.  We have been on their waiting list for over a year.  Azalea Trace is the best CCRC we have looked at in Virginia, Alabama, or Florida.  In any case, Chris, our representative at Azalea called to tell us he had a apartment for us to look at.

Linda and I went today and toured a two bedroom, two bath apartment that has 1200 square feet of living space, a patio, and is on the first floor.  We love it!  Of course, we get to customize the unit.  Floors, paint, counter tops, even remove some walls.  And, of course, that will cost some but it will be worth it.

We are now in the process of completing the paper work.  Financials, medical, and of course, a cognitive interview to make sure we qualify for independent living.  I think I can pass that portion.   Linda certainly can.

The cost?  a lot, but the care that is guaranteed, for life, is the draw.  They have independent living, aging in place, assisted living, memory care, skilled nursing, and rehabilitative services.  All for the same price we pay for independent living.  That is the benefit of a CCRC.  And all of this is in the same compound.  Oh, and there is the indoor, heated swimming pool, hot tub, gym, Library, auditorium, movie theater, lounges, and the dining room that included one meal a day for both of us.

We are both very excited!!  If all goes well, we will be moved in before Christmas!!  I truly needed this to happen.  God knew that and made it work perfectly, in His perfect timing.  Praise the Lord!

Wednesday, September 3, 2014

Today, was the first day I realized that I the battle.

OK, now I understand how General Custer felt at the battle at Little Big Horn!  I am sure he rode in, full of confidence, vibrato, and self-assurance.  Then, there were more Indians that he could count!  Then he thought; Oh no, this is not going to end well for me!  And it didn't.  And tonight, I did not start to see that I was loosing my battle with LBD.  I realized my battle was lost!  There is a big difference in those two revelations.

Today, actually tonight, "Show Time" failed.  And when I returned home from our Son's home, I was deeply depressed and in despair.

I deal with depression all the time.  But this is different.  Little changes are happening that I notice and they tell me, I lost.  Yes, I always knew that.  But I never admitted it to myself.  Tonight I did.  I now see the negatives and not the positives.  I now know much of my plan for the future will not come to fruition.  Eve promising things like the Continuing care retirement community seem unattainable now.

Remember what the "Borg" said in Star Trek?  "Resistance is futile!!" and it is!  So, why fight it?  Resistance is futile.

I really have tried to put a positive face on this and on my life.  I have been brave, tough, and indomitable, as it said in Corporal Tony Stein's Medal of Honor Citation.   But, those are phony fronts, facades!  The truth is, I no longer want to fight, use "Show Time" or pretend I am OK.  I do not know how long I have had this disease, but I am SURE it has been long enough!   Resistance is futile...




Tuesday, September 2, 2014

Evening depression and tears

Almost every night I experience deep depression and the feeling of despair that leads to the feeling of crying.   Sometime simple things bring this on, like a television show, or the lack of a show.   It seems silly, but a simple thing like a show I like being canceled can bring on depression.   There are other issues that cause me problems too.  Like a dream during my daily afternoon nap or doubt about the future.

The drugs I take for depression do nothing for me, in my estimation.  The next visit to the neurologist I intend to address this issue.  Since this depression and emotional upheaval impacts my desire to do most anything,  it would be better for me if I could find a way to reduce this issue.  That thought is me, fighting against the inevitable!  Even though I have had a solid diagnosis for quite a while, I still think there is a way for me to be normal again.

I have read a number of posts from other LBD sufferers related to "Show Time" behavior.  It seems those of us with LBD can muster a "normal" appearance when we have company, go somewhere, or see our doctor.  I do not allow "show time" to happen during a doctor's appointment.  But, it does come into play at Church, during our Ministry at the Assisted Living Facility, and when we have company.  I have noticed that the limits of "show time" have become shorter of late!  For instance, at our Son's house during a Birthday get together for our Son.  As the sun began to set, I felt my energy drain and my control over my emotions leave me.  My wife noticed this and we departed for home.  It is good when your wife/caregiver knows the warning signs.

One of the depressing factors of LBD is the many things that fail because of the effect of the Lewy Bodies as they settle into a portion of your brain.  I have wrote before about how REM sleep disorder first set in.  Now, my vision is being impacted. Judging distance, peripheral vision are not what they used to be!  Of course, their is the loss of control of bowels and urine, body temperature, and recently, I see my blood pressure becoming erratic.

LBD takes it's tole in slow, sneaky, silent ways.  One day, you can see, the next day, not so well.  These slow degradations of life functions bring on the emotional issues. So, it is a round robin for me.  There is no victor with LBD.  Just the reality that things will progress on their own schedule no matter what I do.