Thursday, May 28, 2015

Colonoscopy

My GP thinks I should get another Colonoscopy.  I said I would never subject myself, willingly, to that torture agin!  No, not the torture of the procedure.  The torture of the clean out!!  Uck!!  But, it has been 5 or 6 years and I did have a BIG pre-cancerous tumor removed, along with half of my colon, in 2001.  So, I am a great candidate for screening.

Then, she set it up at a medical facility right next to where we live and it happens next Tuesday!!  I guess she thought I would have second thoughts!  Well, I do!  But, my Wife will make sure I do this.

Speaking of my colon surgery.  The Doctor that is doing my Colonoscopy told me, the tumor type I had removed was a particularly aggressive type!  I was never told that before!!   But, I provided them with the lab results of the tumor and that was the basis of their statement.  God blessed me with these 14 years!  I have tried to use them wisely.  But now, the LBD fight is getting difficult.

This, along with issues I cannot specifically figure out, has me on edge, agitated, angry, and out of sorts.  And, my cognitive skills have slipped again.  So, it seems I may be in for a tough time.

I really have not leveled off since the Namenda XR experiment.  I thought I had, but I continue to be a simmering volcano of emotions.  I do my very best to control this and keep it in.  But, it still spills out.  For instance, just now, typing the word "out" I timed "I" instead of "O" three times.  "I" backspace, delete, "I", three times!!  The forth time I nearly punched the "O" through the bottom of the key board!!    Yep, I have anger issues.

I have also written in the recent past, I think, that I now am sure Lewy Body Dementia is gaining the upper hand.  I have fought the good fight, but I am now sure I am loosing!   This revelation is difficult to swallow.

My wife is quiet about this.  We have talked about it, a little.  Mostly, I talked and she listened, agreed quietly, and then we talked about something else.  It is hard for her also.  

So, this is what we are dealing with today.  There is no telling what state I will be in tomorrow.  I will continue to cling to the good times and down play the difficult ones.  But, I will also continue to report all conditions, openly, honestly, and with all candor.

Wednesday, May 27, 2015

Do you remember the joke about the guy who got bit by a rattlesnake?

There is an old joke about a fellow out on a hike with his friend.  He has to relieve himself and does so next to a bush.  All of the sudden a rattlesnake bites him, you guessed it.  The poor fellow is screaming; "I'm gonna die!!!"  His friend calms him down and tells him he is NOT going to die and to be calm and rest while he goes to town to get a doctor.   While in town, the friend learns the only doctor is on vacation.  He finds an "Old Timer" at the General Store and that fellow tells him;,  If a person is bit by a rattlesnake, you have to make a "X" shaped incision over each fang mark and then suck the poison out!"  The fellow quickly returns to s friend with the rattlesnake bite and tells him:  "Your gonna DIE!!"

Today, I visited my Neurologist.  He is a good, adequate, caring doctor.  He is not Doctor Bowles of Norfolk!  He asked how I was doing and what issues I had.  He also asked if we thought the disease had progressed further.  Then, he asked if I was going to kill someone or myself?!

I have dementia, I am not crazy!!!  If I kill someone, I am going to prison or the death penalty.  Of course, with the length of going to trial, the trial, and the appeals process, I will be so far down the Dementia road, I will not know or care if they put me to death!  Maybe he has a point!!

And as far as committing suicide, well, I intend to stick around as long as I can and be a burden on society!  I paid all these years for Blue Cross, Long Term Insurance,  Social Security, Medicare, and Tricare for Life!!  If I kill myself, I will never collect on these investments!!

So, I am here as long as God has planned for me to be.  I think the Neurologist should pay more attention to my symptoms and less to my demise!!

Saturday, May 23, 2015

Sad, Lonely, Depressed, and Empty

We have been busy the last few days.  A young man we both love and respect graduated from High School in Biloxi, Mississippi and we drove there and back Thursday night, just to support and honor him at his Graduation.   He is our adopted Grandson and he grew up under some less than perfect circumstances.  He overcame them and has become a responsible, young man.

Then today, we had our middle Grandson's High School Graduation.  While we did not have to drive three hundred miles for this graduation, it was still stressful and demanding for me.

Tonight, like most nights, I am experiencing emptiness, loneliness, depression, and a deep need to locate, talk with, and be with Navy shipmates.  These feelings go deep and most ofter leave me in a state of exhaustion and anger.

I am loosing this battle.  I am fighting it alone.  And I am exhausted.

Wednesday, May 20, 2015

Second straight morning of stucado Commands!

Some folks don't learn things easily!!!  Reread yesterday's post for a refresh.  I need quiet in the morning. I do not want to hear complaints, orders, reasons why life is bad, or negative issues when I am trying to wake up.  For instance, I got ten minutes on why all the towels we have do not dry her!  The dry me!!  It takes me a while to get myself on an even keel in the morning.  I dream, all night and it is difficult to disengage my mind from my dream state to reality. These are the truths of LBD.  Learn to live with it!!

Of course, later in the morning I get quizzed on why I am upset!  Reread yesterday's post and you will know why!!!!  I finally explain why.  Like I have before!!

The truth is, LBD has progressed and IS taking over more and more.  But people still treat me like nothing is wrong.  I guess they want me to be "Normal".  Well, I am not "Normal" and I never will be again.  So, again, learn to live with it!!

As you may realize, I am still angry about the recent mornings and the way things have been gong in general for recent time.   Now, I try very hard, to control my anger and keep my emotions in check.  This causes internal stress for me which amplifies everything else!   I recommend everyone who knows me read the Lewy Body Dementia Website to learn about what I am going through and what is coming around the corner.  We have arrived at the real, terrible, issues of LBD!!  Again, learn about it, and then, live with it!!  I am tired of the way I am being treated and dealt with.  I ned to be treated like I have LBD.  Why?!  Because I have LBD!!

I am sure other LBD patients have these issues also.  They, like me, probably do not voice their frustration.  Then, one day, they explode in an emotional diatribe and you, the caregiver, look surprised!  Well, wipe that fake "surprised" look off your self-centered face and educate yourself.  This is serious stuff and we need your help, understanding, and most of all, your full attention!!!

This phase of my LBD journey is more difficult and involves issues that are harder to deal with for me and everyone else.  Sometimes, I believe it would be much easier for me to be in a facility that deals with dementia patients.  Untrained, uneducated, caregivers are not prepared or equipped to help and deal with the issues a LBD patients is experiencing.

Now, realize, I am reacting from two days of emotional upheaval and stress.   But, other caregivers, do you ever wonder why your LBD patient is reacting the way he or she is?  Maybe, I have given you some insight into my issues and emotions.

LBD is not easy, not benign, and not going away.  Again, get educated and deal with your LBD patient where he IS, not where you want or think he is.  Missing the mark here causes big, negative, issues for both of you.

Monday, May 18, 2015

My "Drill Instructor" care giver!

Every morning, I get up before my wife.  I take my thyroid medicine, make the coffee, and check email.  She normally gets up just as I am sitting down to drink my coffee.  As she comes into the living room, I say "Good Morning Beautiful", and then it begins.

You see, my wife's mind NEVER  shuts off!!   She wakes up with this flow of ideas, jobs for me, and list of things I have done wrong.  Then, as she enters the living room, she obviously sees more thing that are my fault.   Funny, nothing is ever HER fault!   As I am trying to drink my coffee, trying to wake up, she is flying around the apartment doing what ever is on her mind, telling me what I have done wrong, and giving me, in rapid succession, my orders for the day!!

If it did not upset me so much it might be funny.  And YES, I have calmly discussed this "Mental Torture" with her on numerous occasions.  I have told her that I need quiet in the morning to get myself awake and on a even keel.  It has not sunk in!   So, every morning is a replay, somewhat like the movie "Groundhog".

Sometimes, I think spouses should not be caregivers.


Sunday, May 17, 2015

A lone visit to the Commissary

Friday, my wife had duty in the Azalea Trace Library.   Since Friday is also the day the Azalea Trace bus makes a trip to the Commissary we decided I would shop alone, for the first time in a long time.  No problem, I thought!  Linda mad a very good shopping list to keep me from spending a couple of hundred dollars on impulse buys and I am comfortable with the folks that normally ride the bus on Fridays.  So, off I went, at 8:30, on time, on my own.

The ride over was good and I had a number of friends to talk with.  When we arrived at the Commissary, it was apparent everything was different!  They were having a "Case Lot" sale in the parking lot.  There were lines of people every where!  Change!  My biggest fear had struck.

I proceeded to the Commissary entrance and to my surprise, there was no line.  I showed my Military ID and proceeded to get a basket and shop.  As I read the list, all organized by isle, I became very foggy and uncomfortable.  I continued to follow the list and walk each isle in the order we always follow.  Even though there was nothing on the list in an isle, I followed the familiar path.

As I completed the path and the list, it was time to check out.  I had collected a couple of coupons as I shopped and had a couple with me.  I actually managed to use the correct bank card to pay for the groceries!   Most times, I use the credit card instead of the check card. Not a big problem, but a mistake that frustrates me.  But, Friday, I did it right.

Then, I had to find the Azalea Trace bus!  The place Frank the driver picks us up was blocked by the "Case Lot" sale.  Where was the bus.  I chose to wait with other residents until we saw the bus approach.  There was safety in numbers.

I bring this story to you to illustrate how frightening it is for a person with dementia to do things that used to be common occurrence.  I was very uncomfortable from the time I saw the parking lot full of tents and case lots of food, paper towels, and canned goods.  Any change is terrifying.  

Will I do it again?  Probably.  Will I be any more comfortable?  Most likely not.

Sunday, May 10, 2015

A great gift from my loving Daughter in Law

I have written before about my hands being "Busy" specially in the evenings.  I pick my face, chew my fingers, pull off scabs or even pull out hair.  I can't stop.  I saw "Busy Blankets" on the internet and I thought one would help me.  My wonderful wife told our Daughter in Law, who is an exceptionally talented quilter.  She set to work to create me a masterpiece and she did.

Today, before our Mother's Day dinner at Azalea Trace, my Daughter in law had our son present MY "Busy Quilt".  She wanted it ti be quietly presented as to mot embarrass me.  She is that thoughtful.

I see my busy quilt as a way to stop or at least slow my picking, biting, and bleeding.   But it also represents love and caring from my Daughter in Law.  I deeply appreciate her gift and will cherish it.

Thanks Juliette.

Wednesday, May 6, 2015

The stress of being a caregiver!

I can only imagine the stress my wife has to deal with as she deals with me having LBD.  I can see some of the indicators of stress on her and it hurts me to think me and my disease are causing these issues.  I have apologized many times for the circumstances we are in, but she always, graciously, tells me it is not my fault and it is not a problem for her.  Linda is a great wife, friend, and care giver.  I am blessed.

But, I know this is difficult for her.  She had to deal with her father having Alzheimer's and that was just the pre-show for me.  She was once removed from her father's issues since we never lived close to him until he came to live with us after her mother died.  By the, Kurt was well into Alzheimer's and deaf as a wall!  So, communications were limited.   There were some funny moments that we can look back on.  Like the fact that he did not like to wear the new dentures we bought for him, so, he hid them!   Kurt said they were stolen!  We found them after he passed away, hidden in his medicine cabinet!

Nursing homes knew little about dementia's back then, and knew even less about caring for dementia patients.  There were NO drugs to slow the progression of the disease available.  So, the progress was much faster and much more brutal.

Today, many of us slowly slide into the end stages of dementia.  Keeping at least somewhat connected to reality until the end stages.  In my case, I have had four good years of a slow, downward slide.  Very few abrupt drops off a plateau like we experienced with Linda's dad.  Thanks to drug research, my experience has been more gentle and manageable.

However, that slow progression may serve to build the pressure on the caregiver all the more!  Why, it is like waiting for Christmas when you are a child!  You know it is coming, but the anticipation is difficult to take.  Linda knows I am getting worse, she sees it!  Yet, there are days when I am much better.  That up and down progression is a signature feature of LBD.  And, it must be maddening to her.  Why, because she never really knows where I will be at any time of the week or day!  That alone causes stress.

Today is my birthday.  I truly never though I would get this old or be in this medical position.  Of course, God's plan for our lives is not revealed to us.  He knows all, but we operate in the dark, learning each day what God has provided for that moment in time.  Tomorrow is never promised to us.  That truth should make today, the most precious day we have!  This IS the day the Lord has made.  Let us be glad and rejoice in it.  Tomorrow may bring sorrow or joy.  But we have now, today, to enjoy.  Rejoice in that.

Sunday, May 3, 2015

Sunday Billiards

Tonight, as I do on most Sunday evenings, I played billiards with some of the men here at Azalea Trace.  It is a great social outlet for me.  The men I play with are exceptional gentlemen and good teachers.  All in all, I enjoy this activity.

But, I see the confusion of my LBD creeping into even my billiards.  From one game to the next, I cannot remember anything.  Who one, how to make shots, or even what balls we are shooting at.  It is very confusing and depressing.   Not because I was once a great billiards player, but that I once had a almost photographic memory!    And now, I can't remember if I zipped my fly.

I have commented before about my recent cognitive degradation.   For instance, I was disoriented at Church today.  Now, that is not totally out of the ordinary since we have a growing congregation and being in a crowd causes me issues.  But, it also illuminates the downward progress of my condition.

The first few years of this journey have been slow.  Yes, there were ups and downs, but the progress was slow.  Now, we see that speeding up.  I guess it makes sense since we are now in the second half of this disease progression.

My son called tonight as he often does.   He always asks me how am doing and I always tell him I am fine.  He knows I am not being completely open about my issues, but he needs to know I am fine with where this is going.  Yes, it upsets and depresses me.  But, I am also dealing with it the best way I can.  

So, that's my report of where I am.  It is becoming more difficult for me to convey my thoughts and emotions about this journey.  Some of the emotions are too deep and too personal to write about.  I will try to continue to write and keep you up to dat on my journey.  Thanks for being there.