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.