Wednesday, October 22, 2014

Don't compare me to someone else!

When I was a little boy, and even into my teenage ears, my birth Mother, Betty Kampf, always used to hold me up in a negative way, against Henry Barry, the son of her friend and hair dresser, Cammile Barry.  I ALWAYS fell short of the excellent example that Henry set!  Right!  He turned out to be a draft dodger, he went to Canada to avoid service to my country.  Notice I said; "My Country".  Henry deserted My Country so it is no longer his, even though President Ford gave the Viet Nam draft doggers, this chickens and cowards, amnesty.

Henry grew up in the two parent home.  Yes, his parents did not sleep together and his mother had boy friends, but, he did not know that then.  He was a child of privilege!   His family was well off, if not rich.  His uncle owned a string of Buick dealerships, up and down the East Coast.  I don't remember what his father did, but they were well off.   I did not like Henry.  And I did not like being compared to him and always coming out in third place.

I never did that to my son or my grandsons. I have seen wives try to do this to their husbands!   "Why aren't you like so and so!  He coaches soccer, is president of the PTA, and is this and that."   I actually had a woman try to compare her husband to me, in front of both of us!  I drew her up short! Quickly!!

Two people are not the same.  We are all different!  We all have different experiences, skills, abilities, strengths, weaknesses, and habits.  

In any case, I have always hated being compared to others.  But, some neurologists and other doctors have tried this with me.  I treat them the same!  I let them know that my experiences with LBD are exactly that, MINE!!   What I am experiencing is most likely different than the next person.  Yes, we have some similar experiences.  But even those may be experienced differently or at different times or frequency.

My point is, lost, I suppose.  I was sitting here, alone, living in the past.  I had an urge to call my mother on the telephone, just to talk, be noise, and see how she was.  Then, Henry and how my mother treated me came to mind and I got angry and upset and decided not to call her.  Which is good, because she died in 1991.  But, that fact escaped me for a while.

Now, I am sure some of my fellow LBD sufferers experience the same sort of mental confusion.  But, their's is probably different than mine.  But we all are on this confusing journey, thing to make sense of where we are and where we are going.  Of course, we will never figure that out.  Maybe I should not be left alone at home!  Or, maybe it is good to deal with the emotions of the past.  The founding Commanding Officer of SEAL Team Six, Dick Marcinko, a fellow Slovak, used to say: "Pain is God's way of letting you know you are still alive!"  I wonder if that applies to emotional pain?  If so, my brain is still alive!!

Thursday, October 16, 2014

Stress of selling our home

As I wrote earlier, yesterday was great!  Today has been more difficult.  I was called by our realtor at 0800!  That's 8 AM!!  Is this woman nuts?  She said we had a showing at 2:30PM.  Then, an hour later she called and said we had another showing at noon.

I realize people have to look at the house to buy it.  But the stress comes when we have to get the two miniature poodles in the car and disappear for that hour or so.  We did OK for the first showing, except that we had to disrupt our friends from out of town's departure plans.  The sec on showing was not as easy,  We packed up and left well before the showing and we were headed back when my realtor called with the excuse that the showing realtor was running lat and would not be here until 4PM!  At that, I told my wife I needed to be home!

Being out of my familiar surroundings, trying to coral two poodles in the back seat of the Subaru, driving around in neighborhoods I don't want to be in is stressful and makes me angry.  And by the time I got home, I WAS angry.  SO, I went to sleep, after the late realtor took some woman around our home that was obviously not interested in the house and most likely not able to pay for it!

I have sold many homes, and I know it is stressful.  But now I have full blown LBD and I am not of the mind to put up with stupid, mental midget Realtors!!  I pray the house sells soon.

Great therapy!

Yesterday, we had a visit from an old shipmate.  He and his wife and brother and sister in law came to Pensacola to visit and vacation.  Today, is their 43rd wedding anniversary!  We have not seen each other in 31 years, yet it was like we have been together the entire time!

Sea stories, catching up on the last 31 years, and good fellowship.  It was a wonderful day.  Early yesterday morning, Chris, from Azalea Trace, called us to see how we were doing.  He asked if there was anything he could do and I said, I would like our guests to eat dinner in the Azalea Trace dinning room.  Chris said; "No problem"!

Now our friends, might have been a little concerned about eating dinner at a retirement home!  I am sure they pictured pureed food, no sharp kitchen tools, sparks, and bibs!  When we walked into the grad lobby at Azalea, they were awe struck!  Dinner was first class.  Steaks, tilapia fish, dessert, the salad bar, were all delicious. The wait staff went above and beyond.

After dinner, we took a tour of the facility and they were further impressed.  All in all it was a great evening.

Being with my old shipmate as just the therapy I needed.  When we returned home, we sat in the living room for a while, did NOT turn the television on, and when to bed early.  I fell asleep quickly and slept through the night.   Nothing is better for me than being with old shipmates.  Thanks Dave and Reba!  Come again soon.

Saturday, October 11, 2014

Doing what I liked to do, one more time

I am a NASCAR fan.  I watched a race, a few years ago, that Mark Martin won.  In the post race interview, he was in tears.  Mark said,  I know I may never win another race, so this is so emotional to me!

Today, my son and I went shooting at a new indoor range in Pensacola.  It is a "Class A" facility in all aspects.  As good as Camp Allen in Norfolk.  Just James and I.  We had breakfast, went shooting, in a very relaxed atmosphere, and the range personnel were friendly and engaging.  It was a good time and I eve shot pretty well.  Yes, my vision gives me pro blame.  I can no longer see the front and rear sights, and the target.  So, I have to line up my front and rear sights and then look at the blur that should be the target.  But, I know how to compensate.  Maybe I should change to "front sight" shooting.

The Mark Martin story came to mind and I realized this could be the last time I go shooting.  I tired easily and we were only on the range for about 90 minutes.  When I was an active shooter, I could shoot all day and still be fresh.  I remember IDPA matches at Blackwater in North Carolina where I would shoot, moving from one stage to another, all day in the heat.  Yes, I was tired at the end of the day, but I could still shoot the night shoot!  Today, I came home and took a nap.

The reality of all this is, LBD has robbed me of stamina, strength, and vision.  All things necessary to do what I have loved to do, for a long time.  Days like today illuminate the losses I have experienced.  These days bring all the is negative about LBD to the forefront.   Maybe, that is why I seldom do things like this.  When I do, I realize where I am in my journey.

Still, I enjoyed my day,  My son looked out for me all day,  He looks for the signs that am getting tired.   When I was younger, and so was he, he would complain if I wanted to leave the range before dark.  Now, he takes carer of me.  Days like today are important to me.  Bonding time with my son.  I need to make more of these happen.

Sometimes, it is hard to judge where I am in this journey.  On days like today, my position on the map that shows my journey with LBD is very evident.

Thursday, October 9, 2014

My wife, my caregiver, my friend

I have not written about my wife in a while.  I am sorry about that.  She is everything to me and I love her.  This is her second time around with Dementia.  Her father died of Alzheimer's in 1991.  Back then, there were no medicines, no memory support units, and no understanding of the Dementia patient.   If they were in professional care, they were tied to chairs if the wandered, left to themselves, and cleaned up and dressed only when visitors or family were expected.

Today, there are medicines to extend mental capacity, memory support facilities that do their best to give the Dementia paint a normal, fulfilling, interesting, life.  And more is being learned.  I have met professional caregivers through the Alzheimer's Association that have degrees in Senior Care!  That never existed when my Father In Law was suffering from Alzheimer's.

Since this is my wife's second dance with Dementia, she has some ideas as to what to expect in me.  Yet, I still surprise her.  For instance, before we knew I was affected by LBD, I would do unexpected, socially unaccepted, behaviors at Church Board meetings!  She would correct me, and even chastise me for my fooling around in an important meeting.  She, nor I, never that I had Dementia and she did not know at that time that I did not know what I was doing or that what I was doing was not acceptable.  She and I do now.

When I has a bowel accident, she never even blinks.  She just says, we can deal with this.  She helps me remember things, find the correct word, and deals with my need to always know where she is, even in our home.  She has never got anger when I ask her what her name is, or where we are, when we are laying in our bed.  She understands these issues and takes them in stride.

It was my wife and my Neurologist in Virginia, Dr. Mary Bowles, that encouraged me to write this blog.  My wife designed both of my blogs and still keeps them up to date and me on track.

She meets my every need.  She even anticipates my needs!  Let me relate something she did for me, early in this journey.  It was the night before an appointment with Dr. Bowles.  My wife wanted me to have my thought together to see her and wanted me to put together as symptoms list.  I did not want to.  I resisted her and became sarcastic.  She yelled at me and let me know this was not just about me!  She had an investment in this journey too!!  That was a very important lie eon for me to learn.  She does have a big investment in me and my well being.  She like being with me and wants me to be as well as I can be as long as God will let me.  Of course, I have to do my best and follow doctor's directions.    Now, I am a team player in this journey.

Her Dad could not help.   We never knew he was effects with Alzheimer's until her Mother died.  By then even if there was a treatment available, it was way too late.  We were blessed in that we were diagnosed early, by a tenacious Neurologist, and medicines were developed that would help me maintain or at least slow the progression of my Dementia.

Now, I am loosing mental ground at a faster rate.  We see evidence of that everyday.   I compare this to a slow leak in a tire.  n the beginning, the tire stays up and you can drive.  Then, as you loose more air, you can feel the car handle different.  Little by little, you notice the car does not drive the way it did.  Then, you hear the flopping noise of the tire as it comes apart and no longer supports that corner of the car.

I am at the stage where the handling is getting worse.  The tire is still there, but after loosing half of it's air, the car wobbles and sways, as goes down the road.

My wife has her hands full with me.  But she manages it well.  I am blessed to be her husband.  Thanks Linda!

After the diagnosis, why do we go to the doctor?

Discounting the Psychologist I go to for help dealing with my emotions, I wonder why we continue to go to doctors after we have a confirmed diagnosis of LBD?

Why do I ask that question?  Let's look at the facts.  My meds have not changed in a long time.  As far as the memory portion of my disease, there are no other drugs I can take.  Unlike my Neurologist in Virginia, this Neurologist does not do follow on cognitive testing.  I can agree with that.  I know my mental capacity is deminishing.  There is no need to spend money to confirm that.  And, why confirm tehe down turn.  since there is no other meds or treatments to help.  As far as my anger issues, my doctors are very reticent to prescribe any meds to help with that issue until I become physically violent!

But, I go to see the neurologist once every six months and the Psychiatrist every three months.  Yes, they write the prescriptions to keep me on those med that are slowing the process of my LBD.   But, I still see these visits as an increasing waste of time.  Today, I saw the doctor that writes the prescription for all of my memory drugs and my depression meds.  He asked some pertinent questions and then said he would keep my meds the same.

Baring a violent outbreak or other issues that would require institutionalization, I really don't understand what I have all these appointments.    I will see my Neurologist this month and I am going to ask him about my blood pressure drops that have lead to light headed issue and almost passing out.  Also, bowel issues and other balance issues.  Since Sinemet causes me so many negative issues, I doubt he can help with the balance issues but the other autonomic issues he may want to address.

I just wanted to bring this topic us, as the patient, and see if anyone else has issues with the numerous, I believe useless, doctor's appointments.  Of course, I may just be having paranoia issues as most LBD patients do.  After all, people have stole food from our home and followed me!  These things I am sure of.

Tuesday, October 7, 2014

How little things cause BIG issues!

I am in a period of stress and anxiety.  Our house is on the market.  We are under contract at a CCRC.  We have given them $35k and our apartment is in the process of being remodeled.  We are on the hook for a substantial last payment and monthly payments that are bigger than anything I have ever seen.  The sale of our home is required for this to work.  Even the mention of budget, payments, or money makes me sick.

Now, before someone writes me and tells me everything will be OK.  Or even that God has this in His hands.  I know that!  But, my mind does not process things like this in a manner that even relates to logic, truth, or faith.  Instead, I for into panic, fear, and depression.  I get angry, defensive, and my fight or flight emotion kicks in!

I have had many long thoughts and dreams about running away!  Really!  Running away, hiding, being homeless, and never having contact with this life again!  Serious stuff, I know.  But it is where my mind escapes too.

Those of you without LBD need to understand that those of us with LBD do not have a mind that deals with reality like yours does.  My mind is broke and does not function like it used to.  For instance, social filters.  You know, saying things in a social environment that are not appropriate.   That was early in the journey.  Now, I panic when I face change, or difficult situations, or even normal daily issues.

When we are at Azalea Trace, I am comfortable, even happy.  I feel it is the best place for both of us.  When we are win our apartment, even in it's pre-remodel state, I feel at home.  Today, we spent time there planning where our furniture will go.  But, now, a few hours later, I am in a panic.  Overwhelmed, frightened, and depressed.

So, I will retire to my bed and escape to sleep.