Thursday, October 20, 2016

Being with other Dementia warriors

I have written before about the group we started here at Azalea Trace.  It is a group of Dementia patients that get together every Thursday.  We discuss our symptoms, our problems, our victories, and our lives.  Normally, there are no caregivers there, just us!

The group is wonderful in that, although all of us have a different form of Dementia, we are all ONE in our fight against the disease that is taking our individuality away.  We are accepting of one another's issues and patient with each other as we discuss issues that effect us.

Yes, sometimes we repeat stories and problems.  So what!  We are there for each other and we have all the time we need to make sure each of us is herd and each issue is addressed.

Some other folks in the community have Dementia of one form or another, yet they wish to remain anonymous.  I guess they believe no one will know they have Dementia if they do not tell them!  I equated one admitting they have Dementia to the phrase; "Coming out of the closet".   Someone said, for the Dementia patient, "that closet door was never fully closed!"  

You cannot hide Dementia.  I believe being together, just one hour a week helps us cope with our Dementia journey because, for that hour, we do not have to pretend to be "normal" or try to hide our symptoms.  Instead we share our journey and gain strength from each other.

I hope more will join us.  For their sake and ours.

Tuesday, October 18, 2016

I WASHED my cell phone today!

Tuesday is the day the cleaning staff does our apartment her at Azalea Trace.  They do a magnificent job, week in and week out.  I do some things to make their job easier each week.  I clear all the kitchen counter tops, clear the bathroom counter tops and the shower of all items.  I wash the sheets and towels and make the bed.  I have this established routine that is now almost two years old.  It works!  Or, at least it did until today.

I did not mention that my Wife has her Leaders Meeting for Bible Study Fellowship on Tuesday morning, so I am alone in this routine.Today, I threw some odds and ends laundry in with the sheets, including the cargo shorts I was wearing.  I took my belt off, my hanky out of my pants pocket, and my pocket knife out and placed all of that on the counter in our dressing area.

While I was on our land line talking with my best friend Jerry, I started to wonder where my cell phone was.  After our call, I searched all of the usual places.  Then I remembered the cargo shorts that were now in the dryer.  You know, those 5.11 shorts have real good Velcro closures on the pockets!  My cellphone was securely in one of those pockets.

It was dead.  And so are my secret dreams of being independent.  I know, you are saying, people wash their cellphones, wallets, electronic car keys, receipts and many other things not meant to be washed, all the time.  Well, I don't and I never have!  I have a set routine, a procedure, that I do things by.  I run an mental checklist on every task.  It comes from my Navy training and long time experience in Weapons!!  You either do it right or die.  Today, part of me died! 

The cell phone is not important.  The replacement was $50.  and we were moved to a new plan that reduced our monthly bill over $30!  But, I failed.  My mental checklist failed.  I lost a piece of my independence today and I lost my dream of being able to take care of myself.

In the Patric Stewart movie on Alzheimer's titled "Safe House",  Stewart plays a retired secret agent with severe information on a presidential candidate.  That candidate is trying to kill Stewart to silence him.  The day he realizes he can no longer project himself, he breaks down and cries.  Today was that day for me.

I once was a romping, stompin, Master Chief Gunner's Mate, riding Navy Combatant ships, firing rapid fire cannons, solely responsible for thousands of tons of explosives and the lives of the men who worked with me and the entire crew!  My word was law, backed by by iron clad memory of procedures, safety procedures, and operating procedures.  Now, I cannot remember to take my cell phone out of my pocket before I was he my shorts!

The LBD has been progressing and Linda and I knew it.  Today was a big drop off in my mind.  I failed a procedure and even though it was a small item, I can no longer trust myself or anyone else to my care.

Wednesday, October 12, 2016

Another thing

Many things upset me and send me into anger and depression.  Politics, the direction our Nation has taken, the lack of morality in out society, how people treat me, things and events from my past, and my miniature poodles peeing on the floor!!

My Wife is at Bible Study Fellowship.  I get two mornings a week alone, to do what I want.  Today, I was doing some ironing I wanted and needed to do.  Marcel stopped me and told me he needed to go out.  No problem.  Sherry, Marcel and I went out and they did their business.  I went back to ironing, something I actually enjoy, and when I was done, about 20 minutes or so after taking them out, I walked barefooted through a new puddle of pee!!

I realize both poodles are old and infirm.  I love Marcel and I have become close to Sherie since we rescued her and nursed her back to health 3 years ago, but I am tire of cleaning up dog waste!  Mostly it is Sherie, who is over 15 and has Congestive Heart Disease and Degenerative Bone disease in her lower spine.  She cannot help her accidents.   Marcel, who is almost 14 has some bladder control issues also.  He has Hypothyroidism and Congestive Heart Failure.  They both take meds for they conditions, which add to the bladder issues.

The truth is, I am overwhelmed with cleaning up after them and walking them 10 times a day.  I hate getting eaten by mosquitoes during the night walks.  And they have gotten expensive due to they medical conditions.  But the real issue is, the make me angry when they pee and poop on the floor!!

I believe, as hard as it will be, that it is time for them to be euthanized.  I will miss both of them, but I do not need to be aggravated by something I can control, but eliminating it from my life.

I will miss Marcel terribly.  He is my "Velcro Puppy"!  But, it is time.  But, when?  Today, tomorrow, Saturday?  We will see.

How I feel

Sorry for the title, but it best fits this post.

I have written before how nights are very difficult for me and for my wife because of how I am degenerating.   Much of the time, my thoughts are of running away.  Being alone, in some out of the way place, independent, with little or NO human contact!  I enjoy being alone, without the TV, radio, or music on.  I enjoy quiet!

Since I have always been a very gregarious person, who was energized by other people, this is totally out of the norm.  For those of you who are Psychologists or self-educated psychologists, I also have some self-destructive thoughts.  None I want to act on, but my emotions have been running high.

Since the recent downturn of my LBD, I have all but lost my self-esteem and self-worth.  The manner in which people treat me contributes greatly to this emotional issue.  I have commented before on the attitude that people use with me, denying that I have LBD, even though they do not know what LBD is.  I have been called a liar and even told I use a cane to get attention or sympathy.

Recently, people in the CCRC I live in have begun to tell me to be quiet!  They say I talk too much!   I will admit I enjoy talking with people and being friendly.  It seems they do not want to be friendly with me.  I will admit, I try very hard to be outgoing as I walk around the community.  But, for some reason, I have been branded persona non grata!   It appears the ones in political positions, that also do not like other handicapped individuals, now do not like me.  So be it.

But you can see how all of this adds up to a negative emotional burden.   And that is the issue.  I have read that Dementia patients, of all types, (i.e. Alzheimer's, Frontal Lobe, LBD, etc) are more comfortable when living with others effected by Dementia.  That makes perfect sense to me!  Much like the Leper of old, those of us with Dementia are considered outcasts!  It is this emotional chastisement that exacerbates our depression and social issues.

You may not believe it, but I am lonely, in a community of 500 people.  I no longer enjoy Billiards nights because of the cold shoulder I get from a couple of the men.  It is like I am contagious.  Or, maybe, they just think I am a liar or a malingerer.

If I were alone, these issues would not be there.  LBD is a difficult journey.   I wish it was over.

Tuesday, October 11, 2016

My Wife is a Blessing!

I truly do not understand how my Wife deals so wonderfully with me.  Especially nights are very difficult for me!  I am angry, curt, sarcastic, grouchy, and down right mean.  When I get this way, I most often go to bed!!  But, that leaves her without me.  And, she says she enjoys my company.  I truly do not understand how she could.

I am ashamed of my attitude at night, but there is nothing I can do about it.   She is a trooper!!

Sunday, October 2, 2016

I have not written in a while! (Edit One!)

I have experienced a series of recent downturns and processing them and learning to deal with these changes has been difficult.  I sleep more than ever before including a 4 hour nap everyday and in bed by 9 PM every night.  Sleep is my escape, such as it is, since I experience very disturbing dreams that cause me to physically act these dream out.

Additionally,  I am experiencing more anger outbursts and I have great difficult controlling my emotional outbursts.  My Wife told me recently, that she appreciated my efforts to control my anger and outbursts.  That means she has observed my problems and has not told me.   Linda protects me that way.

The vision issues continue, as well as my stability issues and memory issues.  The other night, I was angry when I went to bed.  To help me deal with that anger, I searched my memory for the names of my doctors back in Virginia Beach, where I dearly wish I still lived.  I could not remember any of their names,  I started to go through the alphabet to find their names.  I could not remember the alphabet!    Truthfully, I could not sequentially go through the alphabet.  So, my memory issues are getting worse.

You can see how these issues have compounded and the result is more anxiety, anger, and frustration.  My LBD journey has sped up!

One other issue;  Both of my miniature poodles are very old.  The female is over 15 and the male is almost 14.  They both have congestive heart disease and the male has hypothyroidism.  Additionally, the female has degenerative bone disease in her spine, impacting the stability of her rear legs, and her ability to control her bladder.

Cleaning up pee is my job and I am getting overwhelmed by that responsibility.  Additionally, I am their CNA and I administer their medicines.  Both dogs have their way of making it difficult for me to give them their pills.  And that is frustrating!

I am at a decision point about their future.  I love Marcel and I love Cherie.  But they have become too much for me to deal with.  I am overwhelmed.

Things that aggravate me

First of all, I am a Constitutionalists.  I believe our Constitution was written by very smart men that lived under a totalitarian government and never wanted to do that again!   They wrote our Constitution to stand on it's own, without the intervention or interpretation of a bunch of pinheaded academia that have their own agenda in mind.  I am not ashamed of my Conservative Constitutionalists position and I will express it if the situation presents itself.  I do not condemn, berate, or talk down to American Citizens who hold another view, as long as they are respectful to me.   They have the same right to their opinion as I do to mine and they can vote their conscience as I do.

That being said, I was in the take out line here in the retirement community that I live in.  One of the staff mentioned he had been called for Federal Jury duty after serving on a State jury earlier in the year.   I told him I never have been called for Jury duty.  Maybe because I am a Life Member of the NRA and a Life Member of the John Birch Society!  The lady sitting next to me, told me, very quietly; "Don't let anyone here know you are a Conservative!  Someone might try to kill you!!"  I replied; " No one her is capable of killing me!" And I left it at that.  But, I have experienced this type of treatment here, before and so has my Wife, another NRA Life Member!

But, the incident has upset me and reinforced my opinion that the vat majority of the people that live here are left wing, socialists, that believe the Government's responsibility is to care for them and suppress anyone who disagrees with them.

So, you can see why I am aggravated and questioning the wisdom of spending $250K to live here plus $4k per month.

I have never threatened someone who disagrees with me.  I am a peaceful man by nature and I try very hard to live by the Eleventh Commandment, given by Christ before he was betrayed.  He said: "Love one another, that is how others will know you are my followers, if you Love one another."  But, I am not going to subject myself or my Wife to aggression, veiled or otherwise.  And, I know a warning when I hear one and I have taken this seriously.

How do I connect this to my LBD?   Before LBD, I had the ability to brush off fools.  I could filter my emotions and keep my cool.   I have walked away from more than one fool that threatened me and forgot them all together!  But now, the incident and the words burn into my emotions and keep me agitated.  That is what I hate.