Thursday, January 30, 2014

Severe Winter Storm, in FLORIDA!

This is our third winter in Florida.  The last two have been mild.  But the year looks like Cleveland!!  Temps in the teens, ice storms, snow, schools closed, road, closed, power failures, businesses closed, runs on stores, this is crazy!!  My driveway is a sheet of ice and this is the third day!

But I did experience something interesting.  The first time the power went out, I was reclined in my lift chair.  Without me touching any controls, it automatically put the chair to it's stored position.  It did not lift me up, but it put the foot portion down and the back straight up!  Nice feature!  And it is faster than if I use the controller.  So, if I am in my chair and the telephone rings, I would do better to pull the power cord than use the controller.  It is faster!

We are going out today to hold our weekly Bible Study at the local Assisted Living Facility.  It is only a few blocks away and the road in front of our home looks clear.  It is just the driveway that offers a challenge to my Subaru!   And people laughed at me for having a Subaru in Florida!!  Looks like I get the last laugh.

Monday, January 27, 2014

How I perceive the stress of my caregiver

I have been married to my wife for 41 years.  41 good years!   I have done good things and not so good things.  Sometimes, the not so good things were my fault and sometimes not.   I suspect I am the same as any husband.  No better and no worse.

But, throw in the stress and anxiety on the caregiver and those small things become major issues.  Discussing symptoms and problems I am having can often lead to curt replies and hurt feelings for both of us.  The other day, we went to take a nap, and when we turned off the lights, I could not see my wife.  I asked her where she was and she was upset in her reply.  She said she thought I was messing with her!  I was not!   She then understood I was having vision issues.

I realize she is overwhelmed with the impact of LBD and the very uncertain future.  That level of stress, the broken dreams and unrealized plans, must be overwhelming.   But the person with the disease is not the villain.  The disease is the villain.

I also realize I constantly talk about issues related to my LBD.  I used to talk about cars, guns, new houses, Navy, the guys I worked with, or sports.  Now, discussion about where to live is centered around a retirement community with memory care.  I don't like to travel, and I get grumpy when the sun goes down.   I have little energy, numerous physical and mental complaints, and I have not adapted to Florida very well.  So, I realize living with me is no picnic.  But living with LBD is no picnic either.

Living with LBD as the one with the disease or as the care giver requires compromise in both cases.  What the LBD symptoms cause are not my fault and certainly not done on purpose.  And how my wife sees my symptoms is not her fault.  We both need to communicate in a non-judgmental manner, keeping each other's feelings in mind.



Saturday, January 25, 2014

OK, having LBD is more than I can take alone.

I have been having a down turn in my mental capabilities and my emotional health recently.  I am overwhelmed with the symptoms of this disease.  I am aspirating more, having extended bouts of constipation, vision issues, and sexual disfunction issues.  All of these symptoms have been increasing over recent times, but they are all happening at once and I am completely overwhelmed.

I have often said that LBD was a god disease to have if your had to have one because I forget the things that bother me.  This is still somewhat true, but when everything goes wrong at the same time, I remember what is bothering me and I don't like it.

I do not want to be around people or go anywhere.  I have upsetting dreams that I cannot wake up from.  I spend hours trying to think of people's names, or events in my life.  Then, when I remember they name or event, I don't remember why I wanted to remember that.  This downturn has been different than any other before.  I even have problems describing what is happening to me.  This is frustrating!  I am so upset I want to scream!

My wife believes this will abate and I hope she is right.  If not, this is a major change and one I did not expect or see coming.  That may be the most devastating part of LBD for me.  I was doing so well that I was lulled into feeling I was going to be OK.  Now I know I was wrong.  But, hope does keep us going.

As I read over this post, it show how upset and disconnected I am right now.  But, I told you I would always tell you what was going on during my LBD journey.  This is the latest installment.

Friday, January 24, 2014

Memories of the past that I now understand

 I have memories of my Dad and the frustrations he felt when my Mom was dieing of cancer.  He told me that when he was young he left home and was working his way to California.  He started in Allentown, Pa and then went to Buffalo, New York.  From there he went to Cleveland, Ohio.  That is where he met the love of his life and he never left there.   He always wanted to see Alaska.  But he never did.  Those unfulfilled dreams always came out as regrets when he was sad or depressed.

When Dad was feeling his Wheaties, he wanted to go back to Buffalo to relive his "Wild" days.  Those were the days of Prohibition and the "Speak Easies".   He used to tell me how fast he could drive to Buffalo from Cleveland.  Of course, he never did that either.  But I can still hear Dad's booming voice saying; "Let's go to Buffalo Donnie!"  We should have gone.

Dad should have gone to Alaska too.  But the responsibilities of family prevented all of those dreams from being realized.  I never understood that until recently.  I have my regrets too.  Not of places I wanted to see but the life style I wanted to live.  I know I have said this before, but my concrete house on 40 acres is always in my mind.  A dream I will never fulfill.  But a constant dream just the same.  Just like Dad's dreams of Alaska and Buffalo.  Again, I have traveled the world and done things most men only dream of.   Dangerous, exciting, things that great stories come from.   And a few stupid things that also make the story line.  But there are still those things I wanted to do, that just never happened.

As time passes, we become our parents!  I now understand Dad's regrets.  And I understand why he chose to never fulfill them.  Responsibility, love, family, are all powerful influences on a Man's dreams.  What we want as young men, we seldom realize.  For instance, I still do not have a Corvette.  Probably never will.  But the dream lives, along with my survivalist life style dream.

It does not matter how much you accomplished or how successful you were.  There will always be those things that you wanted to do, that there was just never time or money for.  Those are the memories that fill you thoughts as you see your life drawing to a close.  I know that now and that understanding actually comforts me.  It is good to understand the mysteries of the past.

Thursday, January 23, 2014

A man without a home

Last night, as I was getting ready to go to sleep, a feeling of total dismay overwhelmed me.  I felt like I had no home state and no place to call home.  I have felt unsettled since we moved to Florida.  We lived in Virginia for over 30 years.  All my friends are there and the Surface Navy is there.  On the other hand, most of the people I have run into here in the  Panhandle of Florida are hard to get to know, to say the least.

On top of this, I have been experiencing a downturn in my mental capabilities.  My wife discussed that with me tonight.  Now, she approached it in a very positive way.  She told me I was here hero for facing this so bravely.  I knew I had slipped a few steps when she said that.

I noticed difficulties conducting the Bible study we hold at the local Assisted Living Facility.  I love those folks and I connect so well with them.  But today, I had problems finding words, describing the thoughts in my mind, and even connecting with the folks.  I have also gone back to taking long afternoon naps.  It helps me be more civil and less grumpy in the evening.

As far as decisions go.  I can't make one.  For instance, we are on the waiting list for a Continuing Care Retirement Facility.  If you ask me if i want to move or not, i really can't say.  One moment I am comfortable with the move, the next I want to stay here.  Then I want to build my concrete house on 40 acres!   This inability to settle on our future living accommodations causes me problems also. I guess my real answer is, I really don't care.  But the hassle of the move is overwhelming to me.  Which is comical since we have moved so many times before.  But now, it frightens me big time.

I have noticed that I have less interest in life and the world around me.  I can no longer do the things I like to do.  I have no friends to do things with, and I have no connection to the place I live.  This has been a rough month for me.  But I knew it was coming!   With LBD, there is always a steep decline after a good period.  And I am in that decline right now.  When will it end.  Soon I hope.

Wednesday, January 22, 2014

The inner terror of dementia

I have tried to describe my feelings throughout this blog.  Now, a new emotion is beginning to develop and it should be discussed.  There is a movie that Linda and I have watched a couple of times that I recommend for anyone with or caring for someone with any dementia.  The title is "Safe House" with Patrick Stewart.  The premise is that the main character is progressing through the journey of a dementia.  He was a secret operative and has secrets that could cause him to be killed.  At first, his children think he is paranoid because of his dementia.  Of course, he knows different.  He tries to keep his mind working through memory games and security drills ran buy his good friend.  In the end, he realizes he can no longer defend himself!

That realization that the person with dementia can no longer provide for himself is the inner terror!  Like the character in the movie, I was self reliant.  Able to handle any situation.  Self assured.  A career Navy Master Chief Gunner's Mate that dealt with life and death decisions in gun mounts!  My word was law in those gun mounts and on the ships in the ordnance areas.  I had good judgement and I was sought out for special assignments that were dangerous, complicated, and that had severe consequences.

Now, people even doubt me when I describe my disease.  I can see it in their faces.  I feel less and less comfortable driving, and decisions are made by others.  What I feared has come to be.  Sometimes, I want to curl up in a safe room, locked in, where no one can get to me.  I long to be able to control my environment, what I experience, and who I let in.

I am better when I am with my wife or my son.  But even then, I realize I am not the protector that I once was.  When I am alone, I will not leave the house or open the door.  I keep the telephone close at all times and I am wary of any sound.  My trusty poodles keep watch, alerting at any noise.

Much like the main character in the movie, I tried to play memory games to prove to myself that my memory was fine.  But they only reinforce the fact that I cannot remember things.  Even my deeply engraved old Navy memories are fading.  The MK 42 gun mount that I loved so much and knew so much about is fading from memory.  Last night, before I went to sleep, I was trying to remember the sequence of operation of that gun mount.  I couldn't.  For me, that is the sign of problems.

This inner fear, even terror, is felt, by ever dementia patient.  The world around us becomes a place to fear.  People are all strangers, places are all new, situations are all threatening.  I long to see familiar faces, but I seldom do.  I long to do familiar things, but people who say they will go with me to do those things don't.  They have work, family, chores, and issues of their own.  It amazes me that people that I know, even relatives, go to great extremes not to see me or be with me.  It is as if they think I am contagious!

Soon, like the character in the movie, I will give in to the fact that I can no longer do for myself.  That I am totally dependent on others.  But for now, I will cling to any independence that I can.   Trying to remain in the normal world, as the unfamiliar world closes in on me.

This is a terrifying disease.


Wednesday, January 15, 2014

Someone is messing with my routine!

This week is a television week I wait for all year!  It is the Barrett-Jackson Collector Car auction in Scottsdale Arizona.  I am a car NUT!!  This auction has cars that I could only dream about.  SPEED Channel used to carry wonderful coverage of this event.  Starting on Tuesday night, 4 or more hours of cars being auctioned off, deep inspections of those cars, and wonderful memories of the cars of my youth.  Friday and Saturday, SPEED had 12 hours of coverage seeing that these were the days that the Big Money cars were presented.  I was in car lovers heaven!!

But, last year, FOX bought out The SPEED Channel and made it a lame sports channel.  All of the car lovers shows are gone.  But what is worse, is that Fox has spread the coverage of the Barrett-Jackson Collector Car auction over four channels!!  It is a maze of alphabet soup cable channels and without my wife, I would NEVER see anything!

I hate it when people mess with my routine.  I live by my routine.  Routine keeps me in balance.  Without my routine, I get very difficult to be around!  Why do rich, fools, try to change things that were working well before they touched them.  SPEED never seemed to need advertisers.  All their commercial slots were filled.  And not with public service announcements!  But, Fox bought SPEED out and now, Fox Sports runs paid commercials for items that stores would not sell!  I loved watching car rebuilding shows, past races, even lawn mower race events!!  Now, nothing.

I cannot find my car auction unless my wife searches for 10 minutes to find it.  My routine is disrupted and I am not doing well with it.   I realize the world cares very little about me and my issues.  But there must be others that miss SPEED.  Or, maybe it is just because of where I am at the time in life.  But, I remain frustrated, cantankerous, and grumpy, over this intrusion into my television viewing routine!

I know this is LBD related.  I know some of you find it humorous or even funny.  Wait until your routine gets disrupted!  Then you will understand!  And by the way, don't anyone dare move my coffee cup or there WILL be hell to pay!  

Monday, January 13, 2014

The importance of an early diagnosis

Today, at the rec center, I ran into one of the few individuals I know with LBD.  He was originally diagnosed with Parkinson's even though his original neurologist thought he had LBD but never did the follow up work to prove his theory.  Because of that, he has gone years without the memory drugs that could have extended his cognitive life.

My friend is just an example of how important a correct diagnosis is.  My neurologist in Virginia Beach, Dr. Mary Bowles, was very tenacious in determining exactly what I had.  She then prescribed Razadyne and Namenda, even before my memory issues became serious.  Later, I read on the Lewy Body Dementia Association website that early use of Arecept or Razadyne and Namenda will extend the cognitive health of LBD patients.  She was truly ahead of her time.

Now, a few years later, the medicines are loosing their effectiveness or the disease is progressing past the impact of the drugs, I don't know which.  But I am grateful for the time that Dr. Bowles bought for me.

My friends wife and I talked today about his recent LBD diagnosis and some of his symptoms.  It seems his hallucinations have increased and she wanted to know if I experienced that issue.  We compared notes about my hallucinations.  Then my friend that I play table tennis with talked about his recent dreams.  He had Parkinson's and that is apparent.  PD does have memory issues in the later state and he is in a progressed state of the disease.  He recently had one of the "Reality" dreams that actually continued into his waking hours.  But it is remarkable how closely LBD and PD relate.  Remember, not to long ago, LBD was called Parkinson's with Dementia!   So, it is no surprise that we have such difficulty correctly diagnosing LBD.

Now, don't get me wrong.  I am not a doctor.  I only know what I have learned about LBD and PD since I first had my problems.  Most is from the Internet.  I realize there is much more correct information that I have not read or don't understand.  But I do know that a correct diagnosis is tantamount to proper drug prescriptions.  And that will extend your cognitive health.  

Sunday, January 12, 2014

Recent changes that I did not see

OK, my memory is no longer a perfect thing.  At one time, I had near total recall.  But now, not so much.  When I was in the Navy, I could remember all the technical data for the MK 42 Gun Mounts.  I seldom needed the technical drawings to troubleshoot a malfunction.  Now, I can't follow a simple recipe.  But today, on the way to Church, my wife informed me that over the Christmas Holiday, I had a measurable downturn in my mental capabilities.

Her declaration surprised me because, up to now, I have always know that I had a shift I'm my mental of physical position.  Normally, I tell her and she confirms my statement.  This time, I was surprised and really unaware of my degradation.

I guess that is the next step in this journey called LBD.   Things changing that I do not realize.  It is good that my Wife pays such close attention to my progress.  It is also good that she will tell me because sometimes I can be difficult to convey things too!   We will definitely convey these changes to my neurologist and psychiatrist during the next visits.

As I observe LBD, first hand, it has become apparent that I am not in control and I am not even informed of what is happening or what is around the corner.  I never liked surprises so I find the secretive changes of LBD to be unnerving.  But, there is nothing I can do so there is no reason to get upset.

The vision changes were a surprise to me in that I did not know that was a part of LBD.  OK, I can't know all the issues related to LBD.  But mental changes that I did not see?  That is another issue all together.  So, as I have done since the beginning, I inform all of you.  This is quite a journey into the unknown.  I remember President Reagan's letter about his Alzheimer's.  He said he was on a journey into the unknown.  He was right.

Saturday, January 11, 2014

Living in the past while living in today

My mind stays in the past most of the time.  It seems I am very comfortable in my Active Duty Navy days.  I told my wife tonight that I actually feel like I am still on active duty!  Last Veteran's Day, I wore my Dress Blues to Church and I felt like I never took them off.  Most times I go to sleep, I dream of my active duty days.  Deployments, gun shoots, standing watches, going on liberty.  Yes, I know I am not on active duty at this moment.  But my mind goes there when I am tired, stressed, or alone.   But I have never done anything as personally satisfying as being on Active Duty in the United States Navy.  So, if that is where my demented mind goes, I will be happy.

Even where we live is different in my mind.  I know we live in the Panhandle of Florida.  Yet, my mind spends a large amount of time back in the Tidewater area of Virginia.  I experience the traffic issues going to the base.  I see the ships at the pier, and I experience the fellowship of the Chief's Mess.  I dream of shipmates that have passed away and wake up needing to call them!  I am actually living in two different places.  I wonder how long that will last?  How long will I know the reality of today?

I have had the feeling that my LBD is going to speed up it's progression.  I don't know why I have that feeling, but I do.  My dreams have taken over my mental activity.  My speech is more stilted and I have more problems finding the correct words to use.   Mostly, I do not know what date it is or even what day many times.  I loose track of the dogs and I feel abandoned when I am home alone.  So, there has been some change.  I also get very frustrated when my Wife corrects me or directs me to do something.  I feel like I am being treated with disrespect.  It is how my brain is working right now.  She is not being disrespectful, she is being caring.  But, when the issue happens, I have all I can to to keep my temper.  Again, I have written about that recently.

LBD is a confusing, brutal, disease.  It scrambles your brain, your emotions, and your reality!!  You loose the stability to walk independently and it causes even the automatic functions of your body to malfunction!   But what may be the most damaging is the effect LBD has on our relationships!  I am not the person I once was.  I now need care.  I do not take the lead on issues like budget or outings.  And i am getting cantankerous!

I often tell people that the good part of LBD is that I forget what bothered me.  That is true.  But when I do remember what bothers me, I get depressed.  Maybe I will concentrate on forgetting more!

 

Monday, January 6, 2014

Vision issues, seldom mentioned

I have noticed that I am not seeing as clearly or crisply as I was just recently.   I had my eyed examined about two years ago and there was little change in me prescription.  But like I said, I have noticed a marked degradation in my vision.  So, off to the Internet I went to see if this was related to LBD or just old age vision issues.  The answer surprised me.

It seems, LBD does impact vision.  So do other forms of dementia but to a lesser degree.  It seems the vision change is a part of the change caused by the degradation of the autonomic functions of the brain.  The part of the brain that controls body heat levels, blood pressure, causes or regulates constipation, and other automatic body functions.

Since I am not a neurologist and know little about how the brain functions, I was surprised that vision was an automatic function.  But, it makes sense now.  It seems that the vision impacts come in the areas of color recognition, shape definition, depth perception, and facial recognition.  For instance, my wife was showing me something I did not recognize and asking me if it was OK.  I could not recognize it, even though I was sitting right next to her.  When she passed it to me to hold, I recognized it as one of those round cheese snacks, Baby Bell, that come in the plastic case.   Until I held it, I did not know what shape color, or substance it was.  It was a blob to me.

I have not seen the depth perception issue yet, but I am less stable on my feet and seem to wobble when I reach for something.  So, maybe I am experiencing depth perception issues and don't recognize it.  I have always had a color deficiency issue.  So, that one will have to get really bad for it to impact me.  Just the same, I do not see as good as I did even a couple of months ago.  I will probably go see and Ophthalmologist soon.  But I don't look forward to that since most eye doctors can't even spell Lewy Body Dementia.

My patience with doctors has become strained and that is why I am reticent to make that move.  I would almost rather just deal with the vision issue.  We will see.

I wanted to get this issue out since I believe there are more of you that have the same vision issues I do.  If you are a care giver, it may make your spouses life better if you can improve their vision.  

Saturday, January 4, 2014

Does your spouse yell at you?!

We are approaching 41 years of marriage.  We have a very happy, maybe even exceptional, marriage. Our relationship is based on respect and openness.  I do not argue with my wife.  I do not yell at my wife.  Maybe I should since holding in anger is not healthy, but I don't.

I was listening to a radio talk show this morning.  It was a legal ask the expert show.  A fellow was being evicted from his apartment because he had heated, loud, arguments with his wife.  The fellow said he was handicapped but did not reveal what handicap he had.  The show host said; "everyone yells at their wife."  I thought, not me!

Now, there are times when I earn her wrath and while she does not yell loudly, I know when she is frustrated with me.  Many times, I disagree with the reason I was chastised, but I hold my tongue and remain quiet.  Why, because arguing is counterproductive!

This is one of those nights when I am upset, tired, and don't want to go to bed.  Both dogs wonder when I am going to bed.  Yet, here I am pondering how I got here and where I am going.  I just answered an email from a woman whose husband has LBD and she wanted some info on how the disease impacts me.  I tried to describe the impact of LBD in physical areas.  But I did not describe the personal frustration that I feel being diminished mentally and physically.

My wife and I ad a discussion about moving into a Continuing Care Retirement Community.  It is a good idea for us, yet I cannot settle on the decision.  Heck, I can't settle on any decision.  I used to be decisive and a Leader!  Now, I can't or don't want to make any decisions.  My mind cannot sort out the pros and cons.  My emotions run my mind.  Emotions, not facts, would drive my decisions if I let them.  Instead, I defer decisions.  Why, because I fell if I make a decision it will be the wrong one.  I am not who I was before LBD.

For instance, I never took anything from anyone.  I tried to be honest and as even tempered as I could be,  But I was not going to take a chewing out if I did not deserve it.  Now, it is different.   People who are diminished by a disease like LBD are not treated with respect.  Sometimes people tray us with pity or curiosity.  But seldom do they tree us with respect.  That is another reason we hide our disease.  My Father in Law had Alzheimer's and he and his wife hid it for years.  When she died, he was lost and it finally became apparent he had Alzheimer's.  There were no treatments of drugs at that time.  No one knew what to do with an Alzheimer's patient.  I am blessed that there has been a monumental jump in meds and treatment, including institutional help and care.

I don't want to argue, be yelled at, or be treated disrespectfully.  Everything is not my fault.  But, I won't say it or defend myself.  I don't want to hurt feelings or bruise egos, even though that is what happens to me.  turn about is not fair play.

This has been a rambling post of emotions.  I thought about deleting it.  But, it is good to get these emotions out and to let others know what goes on in my LBD mind.   If you only knew the confusion, anger, and depression that lived inside me.  I would like to scream and punch the walls.  But that would cause me issues that I do not want.  So, I will quietly sit here and express my emotions.  Hoping they will depart soon.  But like pain, my constant companion, they won't depart.  Instead, they will stay and frustrate me more.  LBD is becoming a pain that no pill can diminish.




Walking, mobility, and vanity

I have been feeling better than normal lately.  Yesterday, we went to a local mall to do some shopping, and I decided to take my cane with me.  I have not been using my cane lately but I thought that it would be a good idea to have my cane, just in case I needed it.  As we walked, I used my cane and I was very surprised that I felt so much more stable!  My walking was easier, more secure and relaxed!

Now, the question is, why have I not been using my cane?  Simple answer: Vanity!!  Really, vanity. Much like I try so hard to keep up to date with the world around me, or try to pay attention to people talking to me.  I want to look "Normal".  That's not strange or weird, it is just personal vanity.

It is like some folks not wanting to wear glasses, or have their grey hair show, or wear certain undergarments to hide their bulges.  We are vain about our appearance.  People get their teeth whitened, even though it reduced the enamel on their teeth and causes other issues.   People dye their hair, even though there is research that ties hair dyes to brain cancer.  But, my teeth are white, my hair is not grey, my stomach does not show, so I look good!!  It's killing me, but I look good!

Sooner or later, I am going to have a serious fall if I don't use my cane all the time.  So, I have decided to use my cane when ever I am out of the house.  If you see me without my cane, ask me where m cane is.  I will get the point.  I am a hard head, but I do get the point after a while.