Friday, April 29, 2016

200,000 Views!! Thank you.

Today, this blog went over 200,000 views!  I appreciate all of your views and even more so,all of your comments of support, encouragement, and help.  When my Wife and Dr. Mary Alliston Bowles, practicing in Norfolk, Virginia, recommended I start this blog as a manner of therapy for me, I never thought I would meet so many wonderful people and receive so much love and care.

While I write this blog to help me, I also write it as a way t chronicle my experiences with LBD and to also help others dal with Lewy Body Dementia.   The truth is, LBD has few first hand reports of the journey and even fewer support groups for those of us suffering with Lewy Body Dementia!!  If I have one complaint, it is that those of us with LBD have no one to discuss our disease with!!

However, I have all of you, and I appreciate that fact very much!!

Monday, April 25, 2016

Loss of control of my life

I realized tonight, in my nightly sundowning that I have lost control go my life.  I cannot do anything on my own.    I cannot drive, so I cannot go anywhere only own.  Even haircuts are dictated!  The lady that works in the beauty parlor also cuts men's hair.   She tries, but the person that cuts our poodles hair could do better.   But, I cannot go out and find a barber shop and my wife is certainly NOT interested in that search.  We will spend hours finding anything she is interested in, but, none for me.  I don't drive.

Then there is what we do.  If it is not something the wife likes to do, it does not happen.   So, I peruse few gun stores and even my occasional trip to the local gun show is short because I ride with my son and his schedule is always full.

There was a time that I had my own vehicle, and I went places alone.  Shooting competitions, Gun Shows that were 250 miles away, or visits to friends in the area.  Now, I am restricted to barracks.

Now, I do have a social life here at Azalea Trace and I cherish that.  I enjoy my billiards days and I enjoy conversations with the other residents I am friendly with.

But, I still have to meet certain conditions that my wife, intelligently imposes on my when I am out of the apartment.  Like;  DO I have my emergency button with me, do I have my cell phone with me, when will I be home, and where am I going.  All of this is prudent considering my condition, but it still causes me issues, because I am not in charge of myself like I was before LBD.

I realize I am more free than I will be this time next year.  But, the restrictions still rankle me.  And I would really love a good haircut!

Time to quit!

I realize my mind is not as sharp as it once was.  I also notice that when I tell people things that I am concerned about, they dismiss my views, out of hand.  Well, maybe they are right.  How I view things is impacted by my LBD.   I will freely admit that.   So, I now think it is time for me to sit down and shut up.   Because, based on peoples lack of response to my concerns, I must be totally off base.  A person who thinks that he is right and everyone else is wrong is delusional.  And, since that is how I feel, I must be getting delusional.

So, from now on, I will keep my opinions, concerns, views, and ideas to myself.  That is no issues for me, since I forget my opinions, concerns, views, and ideas, very quickly.

Saturday, April 23, 2016

Lost, Disoriented, Confused

I was just out walking the miniature poodles.  We are a group without a direction!  Marcel is almost completely deaf and blind as a bat.  His nose still works, so he smells his way around.  Cheri see's better, but she is so "Smell" oriented that she gets into a smell circle.  I feel lost, confused and overwhelmed when I am out of our apartment or in the well known confines of Azalea Trace.

Recently, we have noticed that I am uncomfortable whenever we are out.  I know I have written about this issue before, but it is getting more pronounced.   I like to be in my apartment and in the portions of Azalea Trace I know.  For instance, I have no issue walking to the Chapel in Willow Brooke Court.  I know the way, I know the people, and all is familiar, as long as I stay in the hallways.  If I get out of the normal halls, I am confused and in a small panic attack.

Oh well, it is the normal progression of my LBD.  And trust me, it is progressing.

Throw away people

In case you are new to my blog or have as bad a memory as I have, I live in a Continuing Care Retirement Community.  Folks move in her and live in Independent living.  For the most part, they are social, energetic, mobile, people.  At some point, some of them are moved to Assisted Living or Skilled Care.  Both of those care levels where I live are s good as they can be.  Assisted living offers some assistance with daily issues and three wonderful meals a day.  Skilled care is Skilled Care.  However, here it is done with a more "Human" approach.

I visit people I minister to in Skilled Care.  Many of them are still mentally active.  Some, have declined.  And still, some have Dementia to the point they are no longer interactive.  One of the things I have noticed is, people that are moved to Assisted Living or Skilled Care, without their spouse, are forgotten after a short period of time.  How is that?  Forgotten?!

Yes, forgotten.  They are not visited by their spouse, their children, or even their friends in our community.  The people I know in Skilled Care and Assisted Living hunger for a conversation a loving touch, even a smile.  I know of one nice lady, who is mobile, and very confused by Alzheimer's.  Her husband seldom visits her.  He tells me, she is better off that way.

Look folks, even if the person does not recognize you, they at least know you are friendly and they will talk to you, smile, and want your attention.  They are not dead!! 

It seems little has changed in the attitudes people have of the elderly.  Put them in a nice facility, and forget about them.   After all, there are people there, trained and paid to take care of them.  I have my life to live.

Even people living in Independent living have few visitors and even fewer overnight guests.  Mostly, people come to eat dinner in the dinning room and then leave, spending two hours with their supposed loved one, at best!   I guess thy come to see when they will receive their inheritance check.

King Solomon was right;  Every thing is vanity.

Monday, April 18, 2016

Another, unreported issue

Another issue I have not reported is my skin issues.  I have bumps that arise, resemble pimples or boils, hurt, and some times erupt in clear liquid or blood.   These bumps also open up when I wash with a wash cloth.  They are occurring on my face, arms, back of my neck and in my hair.  To say the least, this is annoying.

The bleeding may be exacerbated by my blood being so thin because of the prescribed large doses of Omega 3 and aspirin.  I have always told you I am a science experiment.

So, as I said in the last posting, the symptoms and issues are increasing in occurrence and intensity.  My body is breaking down, my skin is breaking down, and my mental capabilities are breaking down.

I guess long term investments are not in my future!

Not yet recovered from yesterday's SCARE!

Yesterday's aspiration event has left me feeling weak and tired.  But, I am also feeling mentally diminished  I feel like I have been dropped another mental level and my wife has noticed it also.  I am not sure if this will last, but it is definitely here right now.  

I used my inhaler again today to clear out my lungs again.  I feel weak and sluggish.  But the real issue is how this impacted my outlook.   The truth is, death lurks closely around any dementia patient, especially when a dementia patient is in the second half of the game as I am.  I am not frightened by death,  I am a Born Again Believer and I trust in God's promise.  But, I have never died before, so I am frightened of the process of death.  I have a friend in California.  She is the widow of a Navy friend and mentor.  She took care of her Father and Mother in their old age.  Her father had a heart attack and was without any vital signs for a period until the paramedics revived him.  When Chester woke up, he asked Cathy; "What happened?"  She said:  "You died!"  Chester replied:  "That wasn't too hard."  I think I will dwell on Chester's experience.

 have had a very good first half of my LBD journey.  I have NO complaints.  But, the second half is picking up steam and my symptoms are getting worsts and more frequent.  My energy levels are low and my desire to do anything is very little.  I have lost most of my desire to fight and my interest in anything worldly.  I still enjoy, immensely,  serving God in any capacity He presents.  For instance today, while walking in the hallway, the staff Chaplain, Jim Dietz said to me; "I need you to preach two weeks in June."  I was immediately excited!

So, I will accept each day as a new opportunity to serve God, knowing that each time may be the last.  I spend as much time with the love of my life, my wife Linda.  She watches over me like a hawk.  But she knows the score too, yet she never voices it.  Much like the manager of a team that is loosing badly.  She always looks for the rally!

Again, it has been a great journey and I have been blessed to communicate my journey to all who read this Blog.  I deeply appreciate your comments and readership.  I will keep writing as long as I can.  Don;

Sunday, April 17, 2016

We had a SCARE today!

This afternoon, I was sitting in my recliner watching the television.  I was drinking some cooled coffee and I aspirated, BIG TIME!   I spit some coffee out on my IPAD and on the floor and my shirt.   But I could not breathe!  I jumped out of my chair, my wife encouraged me to put mu arms in the air as she pounded on my back.  But I could not clear my airway or my lungs.   I stumbled around the living room and after a while I got some air into my lungs.  It took me some time to get breathing somewhat normally.  I had to use my Rescue Breather for Asthma to get my breathing back to normal.  I also had a lot of phlegm to deal with that was not there before I aspirated.  

I was about one second away from having my Wife push the Emergency button.  In hindsight, we probably should have.  But, I settled down and got back to breathing.  But, I am truly not over this episode.

I have aspirated before.  Maybe not as bad as this one.  This one scared me.   It also brought my mortality to the forefront.  The number one cause of death in LBD patients is aspiration!

So, another issue comes to the forefront.  More later.

Thursday, April 14, 2016

My reaction to changes in plans

The cable provider is updating the entire cable installation here at Azalea.  It is a wonderful, much needed, and very much appreciated update for our residents.  Television, Internet, and telephone, will all be faster, more clear, and expanded by their effort.  I thank Cox Cable and The ACTS management for this upgrade of our facilities.

This upgrade has been done in a very expeditious and efficient manner.  Remember, they replaced every piece of coax throughout all of our buildings including Assisted Living and Skilled Nursing Care!  The Cox personnel had to enter every apartment and room to replace cable and cable boxed.  The were in our apartment for a total of 25 minutes!  Amazingly professional.

Al that being said, this is my blog about my disease.  Today, they were scheduled to complete the installation which requires installing a small digital signal box for each television.  That box is even paid for by Azalea Trace!  I received an automated called this morning telling me the progress would bring them to my apartment, the last floor of the install this afternoon.  Around 2 PM, I went out to find where the install team was.  Why, because I had go to the pharmacy to change my prescriptions.  Actually, my Wife had to do that, and I was to go with her.  The Security Guard escorting they Cox workers told me, along with the Cox supervisor, that they would be on my floor later in the afternoon.  Then, at 4PM, I went out and checked again, and I was told they would be to my apartment by 4:30PM.

You can guess where this is going.  At 5:15PM, I went to check and they had left for the day.  I was furious!!  My BP surged, my heart beat pounded, and my body temperature rose.  I could not rationalize why I was not notified by their change in schedule!!

My Wife spend a lot of effort and time to calm me down.  As she was bringing me back off the ledge, I told her, I thought I might need to be in a more controlled atmosphere.  

I should not get excited about a small schedule change for an effort as monumental as this is.  We can go to the pharmacy tomorrow.  My Wife can then take me to the Commissary and Navy Exchange.  This will be OK, even though I love riding the Azalea Trace bus to the Commissary on Fridays.  But, it really is no big deal.

But, my ability to see things rationally is broke.  So, living in an area that understands my broken mental functions would be better, I think.  This is a difficult disease and I am no longer rationally connected to my emotions much of the time.  I am blessed to have a Wife that really is proactive as my caregiver.  But she needs time off sometime too.  It will be interesting, the direction things go, and how I react to them.  It is my opinion that soon, I will not be as connected to reality and to my emotions.  My LBD is progressing.

Saturday, April 9, 2016

Why do I feel like I do?

OK, I know the answer to that question.  I have Lewy Body Dementia.  But I am always thinking about the things that now bother me, that never bothered me before LBD!

For instance, I used to like politics.  I had my opinion, I liked to debate issues and politics got me excited.  They still do, except now it all makes me so agitated I am either out of control angry or , not watching or paying attention to politics AT ALL!!

I look at our society, how our moral standards are GONE!  There are no absolute standards.  People can do anything they want, even if it was illegal or even if it offends the majority of Americans.  Our Nation is bankrupt, financially, morally, and as a a Nation we no longer even have borders!

The things I believed in, fought for, spent my life defending, building, leading, and knew were right, proper, and moral, are now trash to today's citizens.

Am I depressed, exasperated, angry, ready to give up.  Why, because I cannot do anything about the direction of our once great country.  And what is worse is, there is no other place to go!  The entire world is going in the same direction!! If you never read Ken Hamblin's book; "Pick a Better Country", I recommend it to you!   I met Ken twice and he was a real, patriotic, American who understood we were on the path to our own distraction, a long time ago!

The other thorn in my side is, I cannot move out to 20 acres and be a survivalist because I am just too messed up mentally and physically to make that work.   I just have to sit here and watch America die!

I used to wonder what would be the thing that defeated me.  I now know, it is NOT LBD!  It is the moral decline of the world.  We have gone the same path that other great nations have.  We turned our collective backs on GOD and tried to make ourselves god.  It killed Rome, Greece, England, Japan, and now America, an me.

Thursday, April 7, 2016

Disorientation increases

I have seen an increase in my daytime disorientation.  We went to the Dentist for the six month cleaning and I was disoriented and lost in the Dentist's facility.  I could not find my way from the examining room to the panoramic X-ray machine or back.  I just followed the Dental Assistant.

I have seen this in our apartment and around the community.   It is not all the time, but is occurring more and more.  I seldom remember people's names, but, we do wear  name tags here at Azalea Trace.  Thank goodness.  And it is just one more sign my Dementia is progressing.

I am also drawing more an more into myself.  I believe I have described this as Cocooning.  I seek safety in familiar, secure, surroundings.   Mostly our apartment and bedroom.

This reinforces my point that Dementia patients need a gradual introduction into Memory Care surroundings.  I need to bring that subject up again.  It would be better to slowly get comfortable with the people, the surroundings, and even the dining facilities.  In my estimation, this would be the best way to acclimate me to my future surroundings and situation.

Just the same, I progress.  Or is it Digress?