Wednesday, October 31, 2012

You know what I hate?

Do you know what I hate about having LBD?  I hate not being me.  The old me, what I was, with the capabilities and energy I used to have.  The ability to remember complex things, names, or even to flush the toilet!

Today, I was at a Gideon's event at a Fall Festival held by our local Hospital.  I was talking to strangers, handing out New Testaments, and interacting with those of our Gideon Camp for four hours.  I was exhausted!  About two and a half hours into the event I had to sit down!  And I never really rebounded after that.

The old me could go for 12 hours and be energized by the crowd.  Of course, the old me could mow, trim, edge, and sweep the yard, front and back, and then wash and wax the car, and then be ready for a social activity at night!  But, those days are gone.

There are things I still love to do, but they are too taxing for me and I usually just think about them.   Family, acquaintances, friends, don't realize how this disease effects me.  My wife has the best grasp of how my mind and body works, but she even pushes me to do things.  Yes, I know she is pushing me to do things to help me and keep me i the best mental and physical shape I can be.  ANd yes, I understand that and appreciate it.  But maybe not at the time she is trying to ge me to do something!  If you get my drift.

I hate getting tired, forgetting, not being able to do, physically and mentally, the things I used to.  But what I hate the most is knowing I am as good as I will ever be.

Saturday, October 20, 2012

What I miss about work. Or, how retirement has changed my life!

It is hard to believe that I retired almost three years ago.  I remember the events that lead my wife and I to the decision that I could no longer fully and efficiently do what the taxpayers paid me to do.  I remember filling out the paperwork for a disability retirement, getting all the medical justifications and submitting it to my boss.  I vivid remember the day I received the letter from OPM telling me I was granted a Disability Retirement ant to be off the rolls quickly.  After I read that letter, I told my wife;  "I MUST be bad off, they approved my request the first time through!"

But what do I miss being retired?  First and foremost, the daily interaction with my coworkers.  I worked with many of these folks for 20 years.  We traveled all over the world together, rode the wire down from a helicopter to ships and back up again.  We promoted together and worked together to make the fleet more combat ready.  And yes, we rode and worked on ships in combat ones, doing tech assists and crew training in real time events.  Those people are family to me and I miss them terribly.

Second, I miss doing something that is important!  What I did and what they do IS important to the security of our nation.  I helped to recover the USS Cole, worked on the investigation of the turret explosion on the USS Iowa, helped the Navy inspect and accept new construction ships, and did repairs that ensured ships could do their mission.  Again, what we did was important, and stressful.

I will tell yo what I don't miss.  The stress!!  Some unnecessary and some a normal part of the importance of the mission.  Some individuals up the chain of command LOVE to put unnecessary, inappropriate, stress on those who are down the chain of command, just because they can!  I saw GS 14 and GS 15 managers who's only desire in life was to watch those who worked for them squirm!!  I just don't miss their ego trips.

I also don't miss those telephone calls from the Command Duty Officer at 3 AM or 5PM on Sunday, for a tech assist on a ship, 3000 miles away!  I can now actually sleep all night without the telephone ringing!

I also don't miss useless data calls!  You know, those immediate, emergency, demands for a report on the number of pencils you will use in the next century, categorized by color, use, function, and date of the first shipment.  Oh yes, that report is due by noon TODAY and it is 10:30 AM now, the first time you even heard of the requirement!  I don't miss that stupidity.

Retirement, getting away from the stress and pressures of my position, has been one of two factors that has extended my usable life.  That and my Neurologist's dogged determination to accurately diagnose my problems and get me on Razadyne and Namenda early enough for them to help me!  Those two events, in concert, have given me three years of good family time, good friend time, good retirement time.  If I had been able to effectively fulfill the requirements of my position, I would still be working. But I could not, so here I am.

Linda and I appreciate and cherish every moment we have together and I thank GOD for making this time available.  This truly is the best time of our lives!


Sunday, October 14, 2012

How my mind works, now

How does your mind work?  Are you one of those people who's mind runs all the time?  It never stops,  You think of solutions to problems that have not yet occurred?  I used to be that way.  Now, I have to really try to think of things.  Otherwise, my mind is blank.  When I do think, I often think about my past and I am very comfortable with that.  My Navy career is often the topic of my thoughts and dreams.  And again, I am comfortable with that also.

However, I do have thoughts that I do not like.  Sometimes, I think of the thing I have done that are not so noble.  Those things I did wrong either by mistake or on purpose.  Many of these "Sins" are from my youth but not all of them.  They are all "Confessed" to GOD but the bother me anyway.  In many cases, I did or said something that hurt someone I loved.  Other events that come to mind are things that I know went wrong, were my fault either by action or inaction,  and resulted in a problem, a catastrophe, or could have related in serious injury or loss.

Sometimes these thoughts, memories, of my shortcomings cause me anxiety, sadness, or even depression.  I hate and regret the fact that I hurt someone's feelings or wronged someone.  I often wish I could tell everyone that I wronged that I am sorry.  But the thought crosses my mind that they probably don't even remember.  But that may be me trying to sooth my conscience.

None of us is perfect.  In the Book of Romans it is written; "None is righteous, no not one"  and; "All have sinned and fallen short of the Glory of GOD".  I know this, but in these days of living mentally in the past, I still relive my failures.  I wonder if others on the same journey as I am have the same problems?

Saturday, October 13, 2012

Is it depression or something else?

My recent denial for admission to the Armed Forces Retirement Home was difficult to take.  I was really looking forward to living my life out with some shipmates.  Having people round you that have shared experiences helps, I believe.  But, after discussing this decision with my wife, it may be a good thing too.  Especially since we could not live together there.  Visits overnight yes, full time living, no.

But I have been having difficulty with how I feel for the last week or so.  My wife says I am more depressed, and that may be.  But, we discussed my feelings tonight and a few things came out.  First of all, people act like I have a disease that THEY will catch!!  Alzheimer's, Lewy Body Dementia, Dementia, Depression, OLD, are NOT contagious!!  As a matter of fact, IF OLD is contagious, I would think everyone would want to catch it!  It seems everyone wants to live forever.  Not me, but the health industry is based on keeping people alive and looking good, forever.  Trust me, after a face life, hair dye, and liposuction, you still look old!!  Preserved, but old!

Second, no one seems to want me as a volunteer.  I volunteered twice to hold at risk babies at the hospital.  The USS Alabama finally returned my call after three attempts.  But, they only want me to work on week days and my ride is only available on week ends.  So, that may be an issue.

I continue to have difficulty finding an active ministry to utilize my GOD given talents.  There is a Church that wants to establish an AWANA program, but they are slow to react.  Like anyother organization they want fast results but they have not done the required up front work.  And, they have not listened to us yet.

Gideon's is far to removed from active ministry for me.  They serve a great purpose, but it is not my style.

Other things have had a negative impact on my psyche.  For instance, I just learned about an abortion technique called "Live Birth Abortion".  It has depressed and upset me more than anything happening to me.  Check this abomination out on line!!  You will be upset too.

My country is falling apart and I can't do anything about it.  Because of my disease, I am unable to be an active participant in life.  This frustrates me and probably does not help my depression.  I used to get extremely angry and agitated over things like this. I would scream at the television, get angry, tell others about what angered me, and in general stir up a lot of dust.  Now, I just sit and shake my head.

So, all of this, combines, is effecting me.  Depression, probably.  But it is more like surrendering to the way things are now.   As much as I would like to fix the things that I see as wrong, I know I cannot.  And for me, that is an overwhelming issue.


Thursday, October 11, 2012

Plans change, all the time!

I had it all planned out.  I applied to the Armed Forces Retirement Home in Gulfport, Mississippi.  I took a tour and Linda and I were very impressed with the facility.  They even have a Memory Care facility! I thought, what a great place for me.  I could be with other career military folks and especially, retired Navy folks!  Linda would move to Gulfport and I would see her everyday.  When my condition got worse, the Navy home had the facilities to deal with me.  Those plans were changed today!

It seems the bureaucrats that run the Armed Forces Retirement Home don't want me because I have a diagnosis of Dementia!  Actually, Lewy Body Dementia, but they only concentrate on the Dementia part.  Even though I am in fair to good shape now and still able to do things on my own.  I drive, manage long term money, and dress and feed myself.  I even go to the bathroom on my own!  Hell, I am better off than most people under 25!!  But, my honesty on the admission forms caused them concerns.

It seems no one wants those of us suffering from a Dementia related disease.  My wife and I applied to Westminister Canterbury in Virginia Beach and they turned me down for the same reason.  But they wanted six figure money to get in as a well person.  That on top of $2000 per month!  And that was with us having Long Term Care insurance!

I guess I understand their point.  I would be an expensive patient a few years down the road.  But wait, I got this disease because of my Naval service!  They don't see it that way.  So, instead of getting upset or depressed, I need to formulate a new plan.

Right now, I am looking for property in central Alabama to build Fort Donnie on!  My cement house, a gun tower, escape hatches out of the house, a bomb proof basement!  I almost have this plan complete!  I am still working on the air supply for the bomb shelter and I have a few kinks to iron out over my solar and wind powered electrical system.  But I am close!

I will keep you informed on my progress.

Wednesday, October 10, 2012

True tough guys

I lost a friend this week.  He was a wonderful person.  Humorous, intelligent,  generous, caring, and TOUGH!  He was really tough.  He suffered through kidney cancer, loosing one kidney and then the other along with his bladder and all connecting plumbing.  Yet, through all of his journey he maintained his independence and his drive to be as upbeat as possible.  I actually heard him complain more about the Steelers loosing than his medical condition.  He hated to ask for help even though his many friends loved to help him.  He knew that his condition would cause him to die yet he never gave in or quit.  As a matter of fact, he worked, without kidneys or a bladder until just a few months ago.  But now, he is at rest and his journey is done.

Barry was an example for anyone to follow whether you have a hang nail or cancer!  I have said that getting old is not for wimps!  And my Dad used to say, youth is wasted on the young.   But true TOUGH guys don't let the difficulties of life get them down.  They look for the good parts of life and see the positive things around them.  That is what Barry taught us in how he lived life and how he faced death.   Great lessons like that are only taught by great individuals.  We should listen to them more and complain about our conditions less.

Saturday, October 6, 2012

What spins your clock?

Even with the effects of LBD, there are things that I still get excited about.  For instance, I love cars!  Old cars, new cars, Hot Rods, Race Cars, and especially Corvettes!   I like to go to car shows, car dealers, and I love to watch Barrett-Jackson car auctions on the SPEED Channel.  When the Scottsdale auction is on in January, I watch all 6 days of the event!   I would love to go the Scottsdale and see the event in person!  Cars are one of the things that still spin my clock.

The second thing that excites me is guns.  The BIG guns of a World War Two Battleship, my ever favorite, MK 42 5"/54 rapid fire gun mounts, .50 caliber machine guns, and all rifles and pistols.  I love to shoot any rifle or pistol, of any caliber.  I love to teach individuals how to shoot and how to be accurate.  I have taught many men,  women, and children to love the shooting sports.  One of the young men I helped start in the shooting sports has won about every competition in defensive pistol shooting!  I had a had in starting him, but it was his skills that lead him to the championships!  But, shooting spins my clock!

Another endeavor that gives me great joy is serving Jesus Christ.  AS you may know, for a brief and very fulfilling time, I was an ordained Lay Pastor.  I am not highly educated in Theology, but I have a heart for the Lord and I want everyone to know about Jesus Christ and what HE did for me and what HE can do for you.  I dearly enjoy preaching GOD's Word and witnessing to anyone who will listen.

I bring these three important things that I find enjoyable up because, they are what keeps me going and keeps me positive through this journey.  I know I will not be able to do all or any of these things in the future, but right now, I cling to them with all my might.  They keep me on this side of the disease and that is where I intend to stay as long as GOD wants me to.

Friday, October 5, 2012

Holding on to today, sort of

I have done quite a bit of research on LBD, Alzheimer's, and other dementias.  There are many articles on how the diseases effect the patient but nothing written about how the patient effects the disease!   For instance, on the LBDA.org sight, I read about a study that arrived at the conclusion that prescribing Arecept and Namenda early in the progression of LBD greatly slows the progression of the memory loss component of the disease.  And WEBMD states that the life expectancy of an individual diagnosed with LBD is two to twenty years!  That's a large span and I wonder how the attitude of the patient and his or her family and friends effect the patient's life expectancy.

I have tried to maintain a very positive attitude but I find that now, four years or so into my journey I am having more and more trouble keeping myself on an even keel.  The effects of LBD are impacting me even more each day.  Loss of memory, muscle pain, lack of energy, muscle weakness, unstable on my feet, shaking when I exert myself, exhaustion, well you get the idea,  These issues make it difficult to keep a positive attitude because I know they will only get worse.   And what is even worse is that I know Lewy has some new negative issues just around the corner.  I know, because I have had a few run ins with a few of those issues!  What issues, incontinence, constipation, vision issues, and fear.  You can see how these issues can deflate a positive attitude.  Just the same, I want to remain positive and engaged.

Another issues is my recent emotional sensitivity.  I have written before about this, but it continues to impact me.  I see insults and rebukes where there are none.  Either that or I am being picked on and I never saw it before.  These issues also linger on.  All of these issues combine to cause me to withdraw and be negative.

Maybe the disease effects the attitude and not the other way around!  I really don't know and now, after putting this all in print, I am even more confused.  During the time I have been writing this, my emotions have completely shifted and I am now depressed, withdrawn, and upset.  Maybe I should just let this happen instead of trying to effect the disease with my attitude.  Maybe I will just go to bed.


Thursday, October 4, 2012

A little cheese with that whine?!

I had a realization that I might be turning this site into a Whine Fest!   It was never my intent to indulge in self pity.  Just the opposite, I want to share my journey in a positive and truthful manner.  Now, some of the things I have reported do come across as negative, and that is the impact of LBD or any Dementia.  But there are interesting and even humorous things that happen, if you just look.

For instance, the other day, my wife walked past me and I saw her in a blue blouse.  I commented on it, only to be told she was only wearing her bra!  I looked again and I saw that she was correct.  No big deal, and somewhat funny.  You just have to look at the things that occur, out of the ordinary, with curiosity and humor.  I remember in the third "Pirates of the Caribbean" movie that Jack was effected with the curse of the gold coin.  He was in the day light and could see the bones in his hand.  His reply; "Now that is interesting, very interesting!"

That is how I try to look at the hallucinations, my teetering over, or my forgetfulness. It is interesting how I see a blue blouse when there is none or remember a name one day and not the next.  Instead of obsessing over it, I have to look at it as something new and so should the caretaker.

So, I will try to be more humorous, more inquisitive, and more upbeat!

Wednesday, October 3, 2012

Changes in my life.

Life always continues to change.  In the Navy, we had a saying;  "The only constant is CHANGE, and the rate of that is variable!"  That was certainly true before my Lewy Body diagnosis and it has only accelerated more as of late.

We moved to the Pensacola Florida area last October specifically to be close to my son and his family.  We had lived 600 miles apart for eight years.  Because of job moves, they lived in up state New York and we were in Virginia Beach, Virginia.   When they moved to the Pensacola area, we visited to check out their new home and as a family, we had a discussion about living close again.  My on wanted to take a daily part in my journey and Linda and I welcomed that.  So, we moved Florida.  That move came with many issues and emotional problems that I deal with even now, a year later.  I miss the Tidewater area of Virginia.  We lived there for over 30 years and it is home to me.  But, it is comforting to be close to my son and his family.  They are there to help us and that is a blessing.

One of the most emotional and difficult parts of this move has been leaving my friends and my Church family.  My Church, Grace Community Church, Virginia Beach, is a loving, Bible centered Church.  It is small in size but BIG in service.  I liked to call our Church a Hugging and Eating Church because we hugged everyone and had some great meals together.   My Pastor helped me grow spiritually and personally.  He encouraged me to preach GOD's word and my Church family bestowed upon me the honor of Ordination.   That singularly was the greatest honor ever given to me.  Greater than anything I did in the Navy, as a Civil Servant, or as a human.  Serving GOD, Preaching and Teaching HIS word is the greatest honor anyone can have.  I miss my Church, the fellowship, the spiritual support, and being an Associate Pastor to that great group of people more than anything.

We have search for a new Church home, but finding what we had at Grace is difficult if not impossible.  Yes, we will find a new Church Home but I will never find a new HOME Church!   And that emotional void hurts.

So, this issue becomes one of my LBD issues.   While living in Florida has it's positives,  there has been some emotional issues that have been difficult to deal with and have left me feeling empty and lost.  Long distance relationships are always difficult.  Being with people is always better than talking to people.   Our best friends, Jerry and Marcia have paid us a visit and that was wonderful.  Now, if I could only get them to move to Florida.   Maybe I should try to establish a Grace Brethren Church in Gulf Breeze!  But honestly, I am not physically or mentally equipped to accomplish that.  Yes, I know I can do all things through Jesus Christ who strengthens me, bt I have not been given any spiritual direction to undertake this endeavor.  So, I continue to try to make a connection with a local Ministry that I can work in and there is some movement to establish an AWANA program at a local Church.  The Pastor there is personal, energetic, and interested in reaching people for the Lord.  So, I may be back in AWANA again and that would be great.  Only time will tell.

I present this issue to you to further illustrate how difficult it is to disrupt the routine of an individual with any Dementia.  Yes, I am only at Phase II or III but it still has caused me emotional and mental distress.    I also write this to be completely honest and open about this journey.

I have noticed that I am more emotional, less thick skinned, and easily hurt over statements made too me and emotions that would have been brushed off in a day gone by.  Not, I am easily upset, angered, and emotionally injured easily and I find it more difficult to heal. I dwell on issues and things of the past.  Things I have down wrong and things done wrong to me.  Yes, all sins confessed to GOD and buried in the deepest ocean with a "No Fishing" sign posted!  but, I am now weakened and vulnerable. And I now strike out over that hurt.  Verbally or by withdrawing from the situation but still my way of getting back at the individual or the situation.  I beat myself up over these things and sometime I find relief.  But that relief is getting hard to find....