Tuesday, June 23, 2015

Security, as seen through my eyes

It amazes me what gives me the feeling of security and calm now.  Before, my idea of security was a stockpile of food, water, ammo, and guns.  A home sturdy enough to defend and a vehicle that would endure most weather conditions.

Today, I have a total different perspective.  This evening, we took our own tour of the Assisted Living and Skilled Nursing care facilities here a Azalea Trace.  Our tour was after dinner, totally unannounced, and without fanfare.  Boy was I impressed!

First, if you have ever been in a Skilled Nursing Facility, you know the smell of adult incontinence products is always present.  Well, not here at Azalea Trace!  There were no calls for attention, and no one abandoned in the hallway.  Instead, I saw content, well cared for individuals whose needs were being met.

Then we toured Assisted Living.  I asked one of the Nurses on duty to show us a vacant apartment.  She was more than happy to show us an empty couples apartment.  It had a large living room, a separate bedroom that would easily fit our King Size Bed, a bathroom that was roomy, safe, and fully equipped for my needs.  It had a well equipped kitchenette with microwave, refrigerator, and plenty of cabinets.

The Single apartment was one room with a private bath that was roomy, clean, and well appointed.  There was an outside area that made me feel secure since it was enclosed by other wings of the facility.   There were benches, swings, a picnic area, and plenty of green spaces.  Inside, there was a multi-function room with BIG screen television and another separate lounge with a television and gas log fireplace.  They provide three meals a day, snacks, drinks, and coffee, 24/7.   I was ready to make the move right then and there.  Of course, my wife is not and I agree with her.  But, it gave both of us a sense of security and comfort knowing that Azalea Trace had these beautiful facilities ready for us when we need them.

I honestly feel secure here.  That is very important for me, and I see a smooth transition when the time comes.   As a Baby Boomer, it is good to know ACTS has our needs and wants in mind.  Thanks!

I can no longer meet my own security needs.  But, the community we live in can and does!   So, I am secure and comfortable.  That equals contentment for me.

Friday, June 19, 2015


I know that I act and look better when I have company, or when we are at Church, or when we are shopping or on some outing.  I know that phenomena is refereed to as "Showtime".  I know I do it and so does m wife.  What I did not understand is that it is not a voluntary action!

I was reading a post on the Blog, "The Lewy Body Roller Coaster" and learned that "Showtime" is an involuntary reaction caused by the effects of LBD on the brain!   That makes sense to me, since I once said I was going to "STOP" looking normal just to fit in.   Now, in my defense, I forgot I made that comment, but now I realize I cannot stop looking good when I am in situation with people.  Does that make sense?

So, telling the caregiver of a LBD patient of the person afflicted with LBD themselves that the look and sound normal is really true. because of the involuntary "Showtime" effect.  It is also one of the most insulting, insensitive, comments you can make, IF you know the person has LBD.

I also realize most folks do not know anything about LBD, or Alzheimer's, Parkinson's, the common cold, electricity, of food preparation.  As a matter of fact, the average American is as dumb as a tree stump!  So, they cannot be held accountable for insulting us.  Now that fact should really want you to stop taking your meds!

Tuesday, June 16, 2015

You're NOT that sick!

I have written a few times about the comments folks make when I tell them I have LBD.   People make judgements based on how they THINK I should act or appear.  I never understood that, until now.

As I was going to sleep for my afternoon nap, it came to me how good I have had it!  Because of Dr. Mary Bowles' fast action in getting me on Namenda and Arecept, my experience with LBD has been gentle and slow, until now.   You know that I have reported the speed and course change of my LBD.

In the past, I probably did look "perfectly normal"!  As I have said many times before, I was not drooling on my shirt and peeing in my pants.  And since those characteristics are what people expect from a dementia patient, I can now see their point.

Another point is, because of the "Show Time" response for most LBD patients, I almost always tried to look as "normal" as I could.  That probably masked my disease from others.

I also realized I no longer feel comfortable with people outside of Azalea Trace!  I do not like being on the roads, interacting with people I do not know or do not share something in common with.  Nor do not like crowds.  I feel safer, within the confines of my retirement community.  I have commented on feeling so secure and comfortable in one of the "Memory Care" facilities we looked at drink our search for a community.  That facility still seems the most acceptable for me.

I would much rather be with other dementia patients, in a facility that offers every necessary service.  That being said, I am doing well here and would not move.

I now know fully, what LBD is like and so does my wife.  I am sure that others who interact with me on more than a cursory level, see this also.  If not, they are either not looking or don't care.  But, they should understand, neither do I.

So, that is the latest update.  Painful to some, but all truth and reality.

What's next?!

More and more, I see myself sliding at an increasing rate of decent into the malaise of dementia.  I am loosing days, do not know where I am sometimes, and find more comfort being alone than with people.

Yes, I can still function in a group of people, but, since my social filters are no longer working, sometimes I embarrass myself with what I say!  No matter, I forget it soon, so there is no lasting effect on me directly.  I am sure the others remember my embarrassing statements.  But again, I don't care.

I forget appointments and events, even though they are on the calendar.   People's names are lost on me, and for a brief time last Sunday evening, while enjoying my usual billiards outing, right here in Azalea Trace, I did not know how to get back to my apartment, or even where that apartment was.   It is now fully evident that I have mentally and cognitively "slipped a cog"  or maybe even two!  But, no worries, since I really don't seem to care.  At least, it does not bother me.

I related all of this to my psychologist, who I have gone back to meeting with after a short respite.  He seems to take these issues in stride and without surprise.  So, I will too.

My wife still seems happy to rail on the parking issues, or how someone is doing something wrong.  Me, I could care less.  Actually, there is nothing I get too upset over and little I care about.  I realize I can do NOTHING to change the direction of the country, the community where I live, the traffic, or even the availability of covered parking at Azalea Trace!  So, why get all worked up!  And, since I forget things so quickly, if I Did get worked up and upset, I would be angry over something I could not remember!  It's true!!  So, I just ignore things around me, try to keep myself intertwined, offer some encouragement to my wife, and make sure the dogs get out often enough!

What's next?  I don't really know, and I really don't care.  The malaise of dementia covers all.

Monday, June 8, 2015

It's the simple things that are the most frustrating!

I have told you before that I had near total recall before LBD.  Now, I cannot remember simple things that everyone, including me, took for granted.

For instance, something to search on the Internet will come into my mind, and before I can type it into the computer, it is gone.   There are other examples of this frustrating issue caused by LBD.  For instance, writing this post.  I had a number of examples in my mind to relate to you, but the telephone rang, I answered it, and now, I am at a loss as to what I wanted to write!

This may seem inconsequential to you, but it is maddening to me.  What I could do and how I lived is now gone!  I am a prisoner of a deep, dark, abyss, void of recent thoughts.  Instead, I think of the past and those who I knew.  I have little connection to the present.

Again, another issue caused by LBD.  More later.

Friday, June 5, 2015

Blowing off STEAM!!

I realize that my emotional control system is compromised.  I also realize my social filters are compromised.   I wish those around me understood these issues.  I also understand I need some way to blow off the built up emotions that I try so VERY hard to control!  But, I have no way, unfortunately.

When I was on active duty in the Navy, we used to go out and drink!  Beer, booze, or both!  We used those times at the "Club" built camaraderie and helped us get rid of the built up stress!   Since we all shared the same stress levels from the same problems, it was a "Support" group for stressed out sailors.

While I do not recommend this type of "Stress Relief" it did work for us.  Since I no longer participate in this sort of stress relief, I need to find a way to relieve this pressure before I blow up!

Screaming, punching walls, abusing the dogs or my wife are non starters.  And, since I cannot do ANYTHING about any thing that stresses me, I am all the more frustrated!!  For instance, my Wife continually brings up the parking issues her at Azalea Trace!  There is nothing in the world I can do to fix this issue. Why in the Hell do I hear about it, everyday!!  I had a spirited discussion with the Executive Director, to no avail.  Any other discussion of this issues only serves to piss me off!!

I have written about this before, at length.  You need to realize this is THE ONLY avenue I have to vent.  And short of beating the ship out of someone right now, it will have to do.

This is a terrible disease and I am tired of fighting with it.

Thursday, June 4, 2015

Veteran's Aid and Attendance Pension

I may have written about this before in this venue, or it may have been on my Navy blog.  Regardless, it bears repeating!  The MOST unused Federal Pension Program is the Veteran's Aid and Attendance Pension.   It is designed to help those who served honorably one day in the Military during a War or combat action like the Cold War.  It benefits the Veteran and the Spouse.

There are some asset restrictions, but they are reasonable and do not include your home or other possessions.   And, you can have money in the bank and still qualify!

How many of us have parents that need money for retirement, health care, or other living expenses?   This program may be the help they need.  I have a number of friends that have accessed this VA Pension and are now much better off.

I strongly recommend you check out this program on the Veteran's Administration Web Site.  If it does not help you, it may help someone you know!  Please spread the word.  It pains me to see our Veterans living without the care they need.  Especially if they are living in a Nursing Home or Assisted Living Facility!  Additionally, this program will pay for in home care, and other living issues.

Thanks for your help!

Tuesday, June 2, 2015

The mental impact of Dementia

There are the obvious mental issues of Dementia.  Depression, Anxiety, Hallucinations, Isolation, and other lesser issues.  But, there is also the issue with the individuals will to live.   Yes, I think about life and how to live it often.  For instance, I know I do my best when I am doing God's work.  That is when my mind works the best and I feel my best.  Teaching Bible Studies, Preaching, visiting the sick, and just witnessing to others.

But, I also know that I have times when I am not on my game, and not in control of my cognitive abilities.  That is when I am at my lowest and when I question everything.

The truth is, I have thought often, recently, about stopping all of the Dementia drugs.  Especially after the negative issues with Namenda XR.  That was a very low time for me and one full of self doubt and questioning.

I believe all of us dealing with LBD ask ourselves the same questions.  We all want to live and be active and connected to life.  None of us want to be incapacitated and lost in a world that none else can enter.  So, the inner conflict continues and the effects of Dementia continue to confuse my cognitive abilities.

 I believe that most people will not openly discuss this topic and I also know my family will not enter into this discussion with me.  I understand their position.  They love me and want me to be OK.  They cannot possibly see my position.  I also understand that truth.  But, it is something caregivers and LBD patients should discuss, openly.  So, I bring this up to al lot you, now.

I will bet, this will make many of you uncomfortable.  It makes me uncomfortable.  But, it is a fact of this disease.  When do we stop medicating ourselves and let the disease take it's course.  Especially when we as patients, know things for us are not as good as those on the outside think.  For instance, ask my son and wife how I am doing and they will say; very well.  My view is not near as good.  So, right off the bat, we are at an impasse.  And the Neurologist only know what I tell him!  So, his view is tainted to begin with.  My Psychologist knows better that any other Doctor where I am.  And he is very open with my wife as to where I am and what I am dealing with.

Where am I right now.  Some days I am good.  I am not as cognitively talented and gifted as I once was.  My short term memory and executive functions are severely limited.  I have problems separating my dream life from my reality.  I hallucinate still and my leg pain is increasing.  Additionally, I am having difficulty with stability when standing and walking.  I am still hard headed and do not use my cane often.  It is funny, when I have my cane, I feel much more stable and secure.  But, I seldom use it.  Like I said, I am hard headed, and a little forgetful.

I have been diminished by the disease and I am frustrated by that.  The Dementia drugs are not working as well as they once did.  Or more correctly, the disease is more powerful than the drugs.  However I put it, I am slowly going down hill.   Will that speed up.  Only God knows.  And he has a perfect plan for that.  So, I do not worry.  Just the same, I ponder these issues often.

And why not, I have few other things to ponder.  More later.  

Colonoscopy; Part Two

Well, in Navy Gunner's Mate vernacular;  "Bore Clear, No apparent casualties!"

All went well, even the dreaded clean out!  They have a new clean out drug that is much more gentle and does not taste nearly as bad.  Now, it does not taste good and it will not marketed as the new soda!  But it is not totally repulsive!

So, I have a clean bill of colon health for another five years!   Since I had a big issue with colon cancer, I guess these checks are warranted.  And, I will continue to participate as long as I know I am participating.

If you have not had a colonoscopy and you are 45 or older, I recommend you do so.   It is a life saving procedure and it is not difficult, uncomfortable, or even expensive since most insurances cover it, and even recommend it!

So, there you have it.  Now, on to the next issue in life!  What ever that is.