Tuesday, August 30, 2016

Dull, disconnected, and lost

Many people ask me how I am doing.  My standard answer is; "I am progressing".  And that is a true answer, but not totally accurate.  I have written recently that I have entered a new, phase of LBD.  One more difficult than the past.  This is the REAL LBD!  The past has been the warm up!

Mentally, I now feel completely disconnected from the world around me.  Everything seems distant and no connected to me.  I have little interest in most things.  Things seem dull to me!  Not "Dull" like boring, but dull, to my senses!  No excitement or enjoyment.  Everything is a burden to do.  I have lost my zest for life!

There is nothing I want to do and few things I will do.  My Wife has me participating in some exercise classes here at Azalea and they are good.  But if she did not take me, I WOULD NOT go!  Yes, I understand they are good for me, but what's the purpose?  I guess that is a reflection of the depression I am dealing with.

I now know everything I deal with before in this journey was "Kid's Play"!  It served to soften me up, like a boxer uses body punches to weaken the opponent.  Now, the real punches come when I am at my weakest and I cannot endure them.

Our Pastor who is a wonderful Pastor, Teacher, and friend, sat down beside us before Church last Sunday and asked me about the new issues I was experiencing and I could not remember any of them!  Linda had to fill him in!!  I guess that is a good part of LBD, I forget the things that bother me.

Another issue.  We were walking down a hallway for exercise last evening and I saw a cat, that frightened me!  I was physically and emotional scared!  It turned out to be s stuffed animal, but it frightened me, twice!!  This is getting ridiculous.

So, LBD is now winning!  And try as I might, I know I am not going to win or break even!  And I know the fight from now on will be a difficult, loosing battle.  I hope it is a short one!

Friday, August 26, 2016

Why should I do it?!

My Wife and I would like Azalea Trace to start a Dementia Patients Support Group.  They have a Caregivers Support Group facilitated by Covenant Care that covers all caregivers.  But, I recommended to Management a Support Group for those with Dementia to help us share experiences of the journey that will help each other deal with early and mid level Dementia.  I also recommended tours of Assisted Living and Skilled Care including meals in those facilities, and tours of the rooms and even day stays in these areas to get us accustomed to the facilities so that when we HAVE to move, it is not a shock to us!

A recent article in "Neurology Now" discusses Alzheimer's Cafe" that provide a place for Alzheimer's Patients to meet, without the worry of trying to be "Normal".  My idea of the "Support Group" is similar.  But, management has not moves on this and my Wife has pushed me to start the group on our own.   I have two Dementia patients ready to meet, but we have received some PUSH BACK from the established resident representative.

My question is, why do I have to organize this group?  If Azalea Trace's organizational goal is to be the BEST, then I would think they would have already read the article I quoted and They would be setting this group up!  Not to mention that my Wife and I told the Executive Director, Nursing Director, and Staff Chaplain about my idea, over three months ago, with NO action!   They all said it was a good idea, but no one took action.

So, I am dragging my feet because I do not want the pressure of setting this up and getting frowned at by some "Normal" residents.  And, I do not want to be in charge of this group.  I want the benefit and not the lead!  I am the patient here!!  Not the Doctor, Psychologist, or caregiver.  I need the help!!  So, here I am.  Without a Support Group and under the gun!!


Tuesday, August 23, 2016

Today, someone actually cared!

Here at Azalea Trace, we have many opportunities to volunteer.  For instance, when the Staff Chaplain needs someone to fill in for a Service or Bible Study, I help out.   Well, our annual fun raising event for the fund that helps those who outlive they savings takes place in October.  One of the Committee members had me in mind for an assignment, but, that individual knew I had LBD.  Instead of asking me to volunteer, that very thoughtful individual called my Wife and asked Her if I would be overwhelmed by the assignment they had in mind for me!

Someone actually took into consideration my condition!  This is the first time this has happened with the exception of my Wife, our best friends Jerry and Marcia, and my Son.  I am sitting here, many hours after that telephone call to my Wife, surprised and happy that someone finally considered my disease.  I feel like I have been accepted!  Someone actually cares that I have Lewy Body Dementia!!  I will say it again, this is the first time this has happened!!

My Wife and I have decided to do the assignment together, to lesson the impact on me while still permitting us to serve this very important event.  

I can actually tell you I am happy!  

Monday, August 22, 2016

The right to be the way I am

I read an article in "Neurology Now" about communities and Memory Care facilities setting up areas for Dementia patients to socialize where they do not have to feel embarrassed or self-conscience of the disabilities they are experiencing.  I thought, what a great idea.  A place where I can be the way I am, without embarrassment or retribution!!

Forgetting words, loosing thoughts, forgetting names, and even getting sleepy, when I am in a discussion is embarrassing!!  I used to be know in the Gunner's Mate community as a person with near total recall.  Now, I forget my Wife's name!!   And that IS embarrassing.

The other embarrassing thing is having my memory work perfectly when I am with people that know I have LBD!  Yes, that IS embarrassing because it makes them say; "See, there's nothing wrong with you!!"  And then I am on the defense about my diagnosis.

I would love a place that permitted me to be me!  Me with all my issues, foibles, and faults.  To be free to be the way I am with no fear of someone's indignation or judgement.  And trust me, people DO JUDGE ME!!  I have heard, too many times; You don't have dementia!  

Friday, August 12, 2016

Living each day, one at a time!

I certainly hope my family reads this blog, because it is going to become my new life's motto.  I intend to live each day, one day at a time.  I will no longer clutter my life with plans, budgets, dreams, or expectations!  Instead, each day will unfold in the manner God has planned!  I will no longer care or bother myself over money, bills, or the future.  I have no future and I have done all I can to ensure my Wife's future.  There is nothing else I can do!!   So, why worry or fret about it!  And I won't, anymore!

Today was a day of my Wife's scurrying around trying to meet other people's expectations, trying to make the world fit into her mold, and trying to get me to engage in her busy life.  Hey, I have dementia, remember!!  I like quiet solitude, slow motion, and serenity.

When we still lived in Virginia, my Neurologist gained a new partner.  This new Neurologist specialized in Dementia's.  She asked me if I had come to terms with my disease, and I assured her I had.  She then said, very boldly; "Bullshit!"  She was right, then.  I was still trying to be "normal" and to meet every one's expectations of me.  Now, that I am in the beginning of the fourth quarter of my LBD game, I actually HAVE dealt, fully, with my disease.   I understand where I am going the rest of my LBD game and I fully understand the end is death.

So, living each day, one day at a time is a way for me to live with less stress, less fuss, and less anger.  Everyone who depended on me to solve their problems, will have to solve your own problems from now on!  If I knew the solutions, the stress of addressing them would still drive me over the edge.  And, since I know I probably do not have your solutions, trying to help you hurts me!  So, you're on your own!!

A long time ago, I was a rabid football fan.  I was watching a game with a team I supported and they were doing badly.  I was yelling and cussing at the television and my Wife turned the television OFF!!  I asked her, loudly, why she did that!  She asked me: "Do you think they are listening to you?"   Get the point!!  Me getting angry and upset over things I cannot control, makes no sense at all.

So, please help me live the rest of my life, one day at a time! 

Note:    Obviously no one close to me read this post! 15 Aug 2016 @ 1922

Please QUIT saying I am "High Functioning"!!

People close to me say I am still "High Functioning".  They say I do not look like I have dementia.  They even say only I know I have LBD!  Nothing could make me more angry!!

I applied for and was granted a "Disability" retirement from Civil Service because I could no longer remember how to do my job!  Social Security granted me "Disability" retirement.  At NO TIME did I use an attorney to fill out any of these forms or applications.  I filled them out, had my Neurologist fill out the medical issues and submitted them!!  They were approved, first time in!

Look folks, I have Lewy Body Dementia, ad I will no get any better, any time!!  And just because YOU can't seal with my condition does not mean I do not have it!!

Please give me the common courtesy to admit I am ill and in a diminished state.  I am sick and tired of trying to hold myself up to your expectations!!  If you cannot accept my condition, then leave me alone!!  You "Rose Colored" assessment of m medical condition is neither wanted or correct.

Just leave me alone!  And stop trying to make me feel better.  It only upsets me, as you should be able to see.

Thursday, August 11, 2016

Covenant Care, Pensacola; Virtual Dementia Tour

Today my wife took the Virtual Dementia Tour at Covenant Care, Pensacola, Florida.  This is an amazing, much needed, service to caregivers of Dementia patients of any type.  They used googles, mittens, headphones, noises, pads on her feet, and confusing instructions to simulate what I experience every minute of everyday.   Evidently it was effective because she said she felt like she was in a "Fog" and she felt inadequate!   Those words describe the life of a Dementia patient.

I would like to THANK Covenant Care for offering this service and I encourage everyone who is close to any Dementia patient to seek out this experience.  It will help you understand your loved one!!

Neurologist's visit

I had my six month visit with my Neurologist today.  I like my Neurologist.  He cares!  But I was surprised today because I was greeted by a Nurse Practitioner.  She was informed, up to date on LBD and she cared!  Both Linda an I were impressed!

These visits are a maintenance requirement.  Much like oil changes for a new car.  I need to be seen by the Neurologist  to continue my drugs, which have slowed the progression of my memory loss.  However, those drugs are loosing their power and things have progressed, as I have written before.  Also, my physical issues have continued to get worse.   The Nurse Practitioner did may of the familiar physical checks, and I noticed my strength diminishing.   As I said, she is good.

I also provided my usual list of symptoms, problems, and things that have become worse.  I believe this helps the Doctor help me and in this case, it was very good.  She read my list before coming into the room and was ready to ask me questions.  This helped my appointment be more productive.  But, that is a relative statement.   What can be done that has not been done before.   I am a science experiment and I accept that.

Thursday, August 4, 2016

I have a new caregiver, of sorts

I have recently developed a feeling, or a belief, that there is another woman that comes to our apartment and has authority over me.  This new woman is never really here but I have the perception she was JUST here.  I usually have this perception when I am going to sleep and in that awake or nearly asleep area of my mind.

This perception is much like me spending half my day trying to mentally complete a project that came to me in my sleep.  normally, it takes most of my waking day to realize I am trying to complete something I dream about.  The dream is not always readily apparent to me so the project becomes VERY REAL! 

That is how this new authoritarian woman is.

I still have my "projects" that I can never quite get the handle on.  They frustrate me and make me feel like I am not doing enough.  But this new "Woman" issue is very upsetting for me and my Wife.  I wonder how this will play out?

Wednesday, August 3, 2016

Staying home is best

We had to go out today, to visit a friend in the hospital.  Then we had to go to the FEDEX store.  Then, my Wife wanted to explore some more Pensacola streets.  The traffic congestion, crazy drivers, mixed with my vision issues and endless searches for a Post Office that is no where close to where the Internet says it is, a typical issue here in East Lower Alabama, I was angry, grouchy, jumpy, and ready to scream!!

I have found before our trip and DEFINITELY after the trip, that I need to stay in my cocoon at home.  I do OK going to the Commissary on the Azalea bus on Friday. The inside of the bus is familiar, I am with people I know, and I recognize the Commissary when I get off the bus.  The driver is a caring gentleman that is friendly. So, those outings go pretty well.

I just need to feel safe, in familiar surroundings, and not rushed, to be on my best behavior.   Riding in the car, with cars seemingly so close I can touch them, is more that I can or want to deal with anymore.  If you are the caregiver of a Dementia patient, this may explain some of his/her issues.