Friday, August 29, 2014

Highs and Lows of LBD

I wrote a couple of days ago about how happy I was with our new car. And I still am.  But, that emotional high has been replaced by the issues of LBD.  For instance, yesterday, we were in a store and I was pushing the basket.  I could not see anything.  No, I was not blind, but my distance judgement and perception were so impaired that I was running into everything and tripping over things as I walked.   Then today, we went to the Commissary and I had the same issues.  I actually ran into a pole in the aisle.

LBD has a habit of tang away the things you took for granted before!  Like seeing things in their proper perspective!  These setbacks cause emotional distress for me, and others with LBD I am sure.  I get frustrated and depressed over these issues.

Tomorrow, I will try to recapture the Spark of the new car.  Tonight, I am just going to rest.  More later.

Wednesday, August 27, 2014

A new car has given me some SPARK in my life!

We have been blessed with the purchase of a new Subaru Outback.  I wanted this model because it has all the new electronic safety devices like Blind Side alert, rear cross traffic alert, and Eye Sight, which stops the car if we do not!  It is a technological marvel!

But this car has invigorated me to wax, seal, polish, and learn!  I have done more in the last couple of days than I have in a long time.  I have been online learning about new Nano Technology car waxes, UV protection for dashboards and tires, and learning how to operate all the new technology in this wonderful car.

I have always loved cars.  I have always lusted a Corvette!  But this 2015 Subaru Outback has really excited me.  And that level of excitement is god for me!  I feel good!

What I have learned from this is;  I need something that interests me.   I need something to work on.  And I need to be passionate about something.  Without these things, I turn inward, and that is not good.

But, I suspect that is the same for most people and the vast majority of Dementia patients need something to bring passion into their lives.  At least, I did.  And I have it now, and I am glad.

Can I work in the heat as long as I used too?  No.  But, I do work and I enjoy the results of that work.  The car looks brand new! Oh, it is.  But what I am doing will keep it that way for a long time.  Which is how long it will last!  I expect this Outback will be the last car I ever purchase.

See, not all I write is negative!

Monday, August 25, 2014

Saw my psychologist today

I had my monthly meeting with my psychologist today.  He has been a key member in the management of my journey with LBD.  He is s new addition.  Well, relatively new.  I really do not know how long we have been meeting.  What I do know is I can tell you is I discuss issues with him that I do not reveal to anyone else!   And having that person is necessary in the management of this disease, in my estimation.

Today, we discussed some of my fear issues.  Some of these, I do not reveal to anyone else.  The fact that I can openly discuss these things, helps me understand them and in turn, he helps guide me on that path. He has never told me HOW to solve or deal with an issue.   But, he has caused me to delve deeper into my feelings, emotions, and root causes of these issues.

I left his office feeling more on top of my game!   I had a good day as we ran some errands in town and I have continued to feel good the rest of the day.  It is like a massage for the mind!

Some of you may question this openness with an outsider.  Why can't I tell my wife about these issues?  Well some of my issue are caused by her or made more difficult by her.  Not purposefully, and not intentional.  Some things are her actions, responses, or lack of responses.  He has helped me address issues with my wife that I was uncomfortable to address before.

Another fact is, I was afraid to talk to a psychologist.  It was my GP that recommended me to a psychologist.  And that referral has really helped me.  So, if you are a person with any type of dementia, I recommend you partner with some type of professional counselor.  If you are the spouse/caregiver of a LBD or dementia patient, do not be threatened by this new member of the team.  That person will help both of you deal with your journey.

Wednesday, August 20, 2014

Lonely, alone, and abandoned.

It is 9:30 PM, I am up, alone, the television is off, I am having my usual hallucinations of small animals running on the floor, and I feel lonely and abandoned.  And this is normal for me, now.

In the beginning of this journey, I felt connected to life.  I had friends that I saw on a regular basis and that I could see almost anytime I wanted to.. They were happy to see me and I was always happy to see them.  Now, I am alone with the exception of my two loyal miniature poodles.  It is good to have them, because if I see something and they don't bark, I know it is a hallucination!

Alone and abandoned is probable a normal issue for LBD patients or most dementia patients.  As I retreat into the world as my mind sees it, I become more isolated from society, people, and reality.  Even when I go to place with people I at least have a connection with, I am alone.  They do not know who I am or anything about my background.  Yes, we have polite conversation.  But nothing substantial and nothing that would challenge my mind.

Last weekend, we went to dinner with my son and his family.  One of my Daughter in Law's sisters were there and her husband and a couple of the grandson's friends.  I told some sea stories to my son's brother in law and he suffered listening to me.  AS we left, I picked up the tab.  I had cash, but I could not decide if the money I had was sufficient to pay the bill.  Yes I saw the numbers, but they did not compute.  I used my credit card, but did not line out the tip portion so the restaurant could have charged me anything they wanted!!  Again, I was not connected to life around me.  I was alone.

The people around me do not know these things happen to me.  Even my wife missed the issue in the restaurant!  I told her and she will take care of any bill paying in the future.  But, because no one knows what I am going through, they don't pay attention to me and in my mind, they don't care.

When I had friends, I made it my business to understand the issues in their life.  Now that I am dealing with a disease that is not outwardly apparent, people just abandon me.  I am a throw away person.  Not interesting, worthless, and a burden on their time.  No one comes to visit, no one calls, except my best buddy Jerry in Virginia.  Hell, the fellow I played Ping Pong with, who has Parkinson's, does not even want to play Ping Pong with me anymore.  He never calls!!

I am depressed.  I know that.  But, there dis little I can do about it.  Another thing that drives me further into my own mental prison is when people do ask me how I am doing, and then DISCOUNT my issues by telling me how bad they have it!  Gee, I am sorry that I infringed on your pity party.

So, I become more and more alone.  And more and more unhappy with life.

If you have a LBD patient that you are taking care of, take heed.  They are suffering from exactly what I am.  Do something to help them relate to people.  Break down their prison walls.  Look at us as people with social needs, not as a burden on your life.  Or, just put just in a nursing home and leave us alone!!  Maybe that would be better for all concerned.  

Wednesday, August 13, 2014

Non-existant social filters

I have written about Sun Downing issues.  Another part of this issue is my now non-existent social filters!!  For instance, tonight as is my norm, I was studying for the Bible study I present at the local Assisted Living Facility.  I normally use a room that is mine, in the front of the house.  I can see the street and I enjoy that room.  It has my Navy memorabilia in it and is furnished to suit me.  My two miniature poodles are always by my side.  But, people walking on the street cause them to bark.  That lead to me blowing up tonight!!  Now, the wife and both dogs are upset!

In the past, I would have handled that differently.  Not tonight.  Now I had to go all Master Chief on them!!  And believe me, I can yell loud.

This happens often now.  I have an ongoing disagreement with my Subaru salesman that I escalated to the owner!  I received a call from the sales manager at a time when I was calm, in the middle of the day. So, things are calm now.  But I email some things I would do not have in the past.  Why? You might say I don't care!  But the truth is, I don't have the social filters to sort out what I should say or not say.

This can be a big issue!  Like telling Adult Content sailor stories and jokes to my Grandsons.  They like it, but my wife seems to think I am wrong.  Me, I don't see an issue.  Other times, I say things that are offensive, even secret!  Again, at the time, it seems OK to me.

These issues leave me feeling alone, unwanted, and devastated.  The dogs are still not talking to me.

I also DO things that are socially not acceptable and at the moment, do not understand why.  I wrote about an incident like that a while ago.  If someone is doing something I do not agree with, I will probably "Flame Spray" them now.  I did that once, in a very crowded Pannera Bread store when I was placing a large order after waiting in line for a while.  The person taking my order, stopped and answered the telephone and took and filled that telephone order, leaving me standing there.  It was before I could not drive alone and my wife was not there to control me.  Bit did he get it!!  The Manager came out from the back, probably because he heard the walls vibrating. and solved the situation.  Other people were looking for cover!!  I can be abrasive.

This disease has many issues, some not listed on any Symptoms list.  This is one of them and it is getting harder for me to be civil.  I hate that, but there is no control in me anymore.

Tuesday, August 12, 2014

Evening anger and agitation

I know I have written about this a few times, but I admitted tonight that this is getting worse.  I told my wife that we must address this with the neurologist.  I notice an increase in my anger and agitation as the sun goes down!   I can still control this rage, but I am not sure how long that will continue.  

I have read about other LBD sufferers and their battle with agitation and rage on the website.  Well, mostly, I read about the caregiver's battle with the LBD patient's agitation and rage.  I have read about ways to control or mitigate the issues of the patient.  Maybe some of those will work for me.  But, I am not sure I can get my wife to massage my feet for hours!

When I am in this state, the things that are unresolved and not going the way I want them too become issues and the center of my agitation.  For instance, my dislike for the area of Florida I am a prisoner in.   I am sure you have seen that is prior posts.  Then there are things that have always caused me issues, like TV volumes going up for commercials or bad audio drink a program I want to watch, like football games.  Of changes from what I know is my schedule and routine.  For instance, "Unforgettable" was not on Sunday night as scheduled!!  I was livid!

This issue is becoming more disturbing to me and probably to my wife, but she never let's on.  My wife is a tough Navy wife!!  I am sorry that I am putting her through this!  That is my biggest, most devastating, regret!

So, hopefully my neurologist can help.  Otherwise, I am going back to drinking, a lot!!

Monday, August 11, 2014

Agitation, anger, and frustration; Take ?

OK, as you could tell from last night's post, I was suffering from agitation and frustration.  We spent our weekend helping our son and his family move into a home thy have recently purchased.  It was a good move, but that much exertion always has it's pay backs.

It seems that my mind wants to do what my body, mental capacity, and stamina cannot!  In Navy terms, my butt is writing checks my body can't cash!  And remember, I cleaned that up for you civilians.

But, after two days of harder work than I have done in a long time, I was done.  And it showed in my demeanor last night.  After a good night's sleep, I am just my grumpy old self!  And not agitated.

Today, I am home alone for the first time in a long time.  I enjoy solitude and quiet.  Especially after the weekend.I puttered around the house, but mostly I just enjoyed the quiet.  No television, radio, or discussions.  Just quiet.

Now don't mistake my calmness for liking Florida.  This is still the most unfriendly, backwater, scum bucket of a place to live, that I have ever seen.  At least in Pascagoula Mississippi, they are glad to see your money!!

The lady across the street died last Friday night.  She had cancer and fought it for a long time.  She was on experimental chemo drugs, and after three different experimental drugs, she died, in her sleep.  He husband, Fred, woke up Saturday morning to her, dead, next to him.  She was young, not yet 60!  She had lost her rite arm to the cancer, and other body parts.  She was a tough old bird, and I will miss her.  Her husband is taking it hard.  I visited him today.  We talked, but he is not really there.  His nerves are still to raw to deal with reality.

That brought me to my thought on living.  God only give us a preplanned, infinite, number of days to live.  That number is predetermined before we are born.  God also gave us a free will!  We can spend those days any way we want to.  We can accept his "Free Gift" of Salvation through the sacrifice of His Son, Jesus Christ, or we can deny it.  Of course, as with any decision we make in life, there are consequences!   But, it is our choice.

My choice is not to live in the panhandle of Florida anymore.  Of course, that decision has consequences,  And like this weekend;  My mind may be making a decision my butt can't cash!!  Probably so.  

Sunday, August 10, 2014

More things I hate about living in the panhandle of Florida!

I have written before about my disdain for the East Lower Alabama, (i.e. The Panhandle of Florida) part of our dysfunctional country.  This is the end of the line for technology, shopping, intelligence, entertainment, and news casters!   The local television and radio news casters are the bottom of the barrel.  There are no national stores of stature.   There are no luxury car brand dealers here.  Funny, Mobile has a Lexus and Infinity dealer.  Mobile!  No, the panhandle of Florida is the end of the line in may ways.  But today, I found out how backwater this place is.

They do not have a radio station that carries the Motor Racing Network (MRN)!!!  I cannot get a NASCAR race on the radio!!  Just shoot me know!!!

I got the MRN in Dahlgren Virginia!!  Now these idiots that cannot read or write root for college football team like they own them!  Go figure.  Just to illustrate my point.  As you enter Alabama, from Florida, on Interstate 10, there is a large, billboard with the cartoon figure of a car that struck a large tree.  The caption is;  Collisions with trees can kill you!!  Do they really need a billboard for that fact of life.

No, East LA is the next step to a third world country.  Cities that cannot handle rain water and let their people flood, and leave that water there for three weeks!!    Newscasters that are ignorant, unable to speak english, and report dribble.  No shopping, no services, no seniors communities, and no way for me to live.  I wish I could change this, but, I am powerless.  Getting old is not for wimps.

Wednesday, August 6, 2014

How do I report what I report?

I have had some comments from readers about how I report the progress of my disease in the coherent manner that I do.  Good question.  Some would say I am a ruse or a charlatan.  Others might say that I have good and bad periods and that I write during the good periods.  Yet others may say that my wife or some other "Ghost Writer" writes these posts.  Well, none of those theories are correct!

First of all, I can assure you that I am the writer of every post, except one that my wife wrote.  She identified herself as the author of that post, and in fact, I would like her to write more about her experience as my care giver.

Second, I can assure you that I indeed DO have LBD and the symptoms I report are happening to me.

I do have good and bad times, as all other LBD patients have.  It is one of the signature symptoms of LBD.

But, I will tell you that I believe God has given me the ability to clearly report what is happening to me in order to unmask the terror of Lewy Body Dementia and other Dementia's.  Yes, God is my enabler!!

I am blessed with a wonderful wife that takes exceptional care of me with unbelievable patience.  She now is in control of every aspect of my life.  Meds, finances, driving, appointments, even what I watch on television.  My wife controls everything in my life.  She understands the disease and where I am in my journey.

She had noticed the recent degradation of my mental capabilities and also the changes in my physical symptoms.  She rescued me when I began to shake uncontrollable while serving Communion at our local Assisted Living Facility.  I am doing as well as I am because of her care.

I will continue to report as long as I am able.  Then, she will write one last post for me.  I greatly appreciate your readership and the relationship we have formed because of this disease.  Be tough, but always lean on God for your strength.