Friday, February 17, 2017

Waking up disoriented and frightened!

The other night, I was just drifting off to sleep, alone in our bed, and I sat bolt upright completely unaware of where I was.  I did not know what State, City, home, room, or even the day or month!  I was lost.  It took a few minutes for that to pass as I looked around the bedroom and began to recognize where I was.

This has happened before, but this time I was more frightened.  

I had my six month check up this week with my Neurologist and she spent some time questioning on this event and then connecting it to my hallucinations.  They may be related.  I had not considered that.   But then, I am not a Neurologist.

We also addressed m night time anger and agitation.  I was diagnosed clonazepan  to take at night to help me with this.  I took it early in my journey and I remember it helping.  My Wife has a different memory of this drug.   One of the doctor's here in Pensacola changed it and I have had night time issues since then.  I hope it works this time.

Taking different drugs is an experiment every time.  We will see how this goes, starting tonight.

Tuesday, February 14, 2017


As I have written, we moved to a one bedroom apartment in late December.  We were in a 1200 sq ft two bedroom apartment and I never felt comfortable there.  I wandered around the community and talked to people, looked at different parts of the community, and looked at vacant apartments.  If I was in the apartment, I sat in my chair or went to bed.  I seldom used the other rooms except to escape the political discourse on television that my Wife liked to watch.  Then I would go in the second bedroom, which we used as an office and put my headphones on.

Now, in our 600 sq ft one bedroom, I am comfortable.  I feel safe and complete.  I seldom go out of the apartment to seek companionship or relaxation.  The apartment has become my "safe place".  I also love the view out of our living room winds.  Trees, large lawn, bushes, flowers, squirrels, butterflies, birds, and the changing weather.  Both Marcel the Wonder Poodle and I love the show out of that window.

I find this interesting since we spent much of our life chasing bigger, better, newer, and more modern!   Now, I seek a compact, safe, comfortable, apartment that holds me in it's soft, secure embrace.

Thursday, February 9, 2017

People, and their opinions, anger me

Trust me, I cleaned that title up!  I enjoy playing billiards on Wednesday and Sunday Evening.   I am even improving!  But, there are a couple of men that play those nights that are very, very liberal  ;politically!    And they like to espouse their left wing dribble when we play billiards.

Now, I am a very conservative person, politically.  But I seldom express m political views here at Azalea Trace, because I know some of my fellow residents are very liberal and I do not want to offend the,  But these two individuals do not seem to have the same common sense and decency that I have.

In any case,  last night the liberal pool players were on their game, politically that is.  And the aggravated me.  Now, I had two choices.  First choice;  Get very angry, verbally flame spray them,  therefore alleviating them.  This was a bad idea because I was beginning to feel my old "Kick some Ass" emotions beginning to rise.  The second choice was to leave.

Since I still want to be respectful of other people's feelings, I left, after winning the game we were playing.  I said nothing about why I was departing.  I just left.  I spent the rest of the night pretty upset!  But, no one got hurt!  And no one's feeling got hurt, I hope.

I am going to stop playing for a while, to see how my emotions settle out on the issue.  I am also going to cocoon for awhile, just to help me calm down.  Of course, last night I was going to destroy my Pool Cue!

Since so many folks deny I have LBD, they are not in tune with the idea that I have emotional control issues because of my disease.  The deny the impact of "Sundowning" and they show now concern for my well being.   Actually, they are a group of self-centered assholes who need their ass kicked!!  I wonder what the community punishment is for that offense.  No, I think I will just cocoon for a while.  Discretion IS the better part of valor.  I hope I remember that for a while longer.

Sunday, February 5, 2017

I don't know what's happening; But it's happening fast!!!

My wife is showing the effects of the stress that comes because of the impact of LBD on me.   She denies it, to me, but I know.  Little things become overwhelming issues for her.  She is having memory issues of her own.  Short term memory issues caused by the stress of watching me deteriorate.    Difficulty doing things she really likes, because her mind just cannot process the steps to complete the task.  Even driving is becoming frustrating and difficult for her.   She recognizes these issues but will not address them.  I have asked her to, but she refuses.

It seems to me, our lives are falling into an abyss of confusion and dispair.  I have known for a long time that LBD would run my life, eventually.  Well, we are there, and there is not good.  

Sunday, January 29, 2017

Thought: Does it make sense for a LBD patient and the spouse to live together?

Think for a moment.  I have Lewy Body Dementia.  I suffer from "Sundowning" and my evenings are difficult at best.  I try VERY HARD to keep an even keel for my Wife.  She does not understand what I a going through, even though I have tried to expelling things and she has scanned clinical information related to my disease from LBDA.Org.  So, as the sun goes down, we are on a different plain with different expectations.

I understand that she cannot possibly understand how noise, projects, personal demands, budget issues, and many other normal life matters negatively impact me.  She also cannot understand how hard I try to stay calm, and unexcited for HER well being.   Of course, all of this makes my life worse.

So, as I sit here, trying not to get upset by the morons on "Finding Bigfoot", and it cross my mind, maybe it is impossible for two people, one without Dementia and the other without Dementia, to live together.  Also, it may be a very bad idea for a spouse or other close relative to be a Dementia patient's caregiver.  Because the are NOT trained to care for us and they want us to be normal again.  They also want us to live forever, and that is not going to happen either.   But, the Wife, Husband, Child, wants their Husband, Wife, Father, to be normal and there always.   That emotion is normal, but not rational and not comforting to the Dementia patient.  At least, not to me.

And everything in my life has changed!  I am unable to have sex, drive, do simple tasks like math or budgets.  I get exhausted doing things I used to do all day and all night.  Everyday requires a nap.  The things I watched and did for intertwinement and recreation are now either too upsetting or beyond my capabilities.  The things I was interested in, passionate about, are now uninteresting because I KNOW I will never do them again.  All that I was is gone, dead, and I am a captive of LBD.

I am completely overloaded with frustration and anger.  I feel unimportant, not listened too, and ignored.  I also feel like a burden.  Because I have LBD, I do not meet anyone else's expectations.  And, to make me meet their expectations, they beat me with their reality!   Do this, look at this, what is your opinion on this future issue!  The temperature is too hot, now it is too cold!  Truthfully,  I don't care!  Just deal with it.

No, I believe, based on how I feel, that living in a Memory Support Facility would be better for me and also for my Wife.  The shock initially, would be emotional and traumatic.  And, since we just moved to this one bedroom apartment to reduce our cost of living, we have to live here one year before either of us moves to a higher level of care to keep that reduced cost.  So, I will stay in the apartment, trying to keep my emotions in check, and trying to pretend to be as normal as I can.

Remember, I try to write true emotions and to record the actual impact of this disease in this blog.  This is as real as I can get.  Don't hold it against me, just try to understand it.

Friday, January 27, 2017

Lewy Body Dementia is a LONELY disease!

My last post, some hours ago reflected on how Sundowning impacts my television viewing.  But LBD is a very lonely disease.  Yes, I talk to friends on the telephone, email them, and have individuals and couples here at Azalea Trace that I am friendly with and enjoy eating meals with in the dinning room or other activities.  But no deep friendships, people in my living room, or in-depth conversations.   My Wife is very introverted, she always has been.  Her parents were very secluded and secretive.  They have no friends and had limited contact with very few relatives, ever!  And while my Wife and I have a great relationship, I long for contact with my friends of the past.  People I have things in common with and share life experiences with.

But, alas, no one comes to visit.  

How television impacts me

I used to love ruff and tumble, gun fight programs.  Detectives, military, spy movies, hero defeats the bad guy, shows were my stock and trade.   I liked the excitement, I liked the fights and gun fights, I liked the violence.  It expressed some of things I did in my Navy career.  Those movies and series were me.

Now, especially in the evenings, those types of shows upset me and stress me out.  I get agitated angry, and frustrated.  I can actually feel my BP rise and my heart rate increase.  Neither of which are good for me since I already have issues with both.   So, we have decided those types of shows are off limits for my evening viewing.  It just makes sense for me and my Wife.  Remember, if I am having issues, she suffers from my agitation.

I realize this is because of "Sundowning", but knowing why does not make it easy to change my viewing habits.  And sometimes, I forget why things impact me.