Wednesday, October 30, 2013

You know what makes me angry..

OK, I am not Earl Pitts!  But there are two things related to LBD that cause me to get angry.  First, even though Lewy Body Dementia is the second most common form of dementia, there are very few local support groups.  You may be thinking, why don't YOU start one.  I am the one who needs it!!  I am no longer capable of taking on that level of detailed organization.  Not to mention tax exempt status and all the legal issues.  I retired from my job because I could no longer do that sort of thing.

Second;  When a Senior Citizen is getting ready to move into a Continuing Care Retirement Facility, there are very few individuals of businesses that can help you down size, check out facilities, provide financial counseling, or even give you the latest inspection reports from the facilities you are looking at.  No, instead, we are operating in the dark!!  Trust, me, in this lost community of Pensacola, there are no helpers available.  I have done exhaustive research on the Internet and finding CCRC's is difficult.  Finding someone to provide you any information is impossible.

So, those of us who are LBD patients and our care givers are on their own as we search for facilities, check out financing, and try to sell valuable furnishings that will not fit in our new lifestyle.   Did we select a great community?  Is the entrance fee fair?  How did the Memory Care unit do on it's last inspection?  I know what the community we chose told us.  But, is that their view or an objective agencies view?

As my generation ages, services like this will be more and more in demand.  And we can't be the first people who want this type of help.  Yet, here we are, out in the dark, groping for a direction.  And you know how much I don't like the dark!

Tuesday, October 29, 2013

Nights are not my friend

I know I have written about "Sun Downing" before, but tonight I may have a better understanding of this condition that so many of us deal with.   Every night when the sun goes down, I feel trapped, alone, abandoned, encased, angry, and vulnerable.  I sit in my chair with a light glaring on me.  My dog by my side, I seldom move.  If I do move, it is just to go to the bathroom, get more coffee, or go to bed.   Once in bed, I tuck myself in tightly, my dog lays close to my side, and I try to go to sleep as quickly as possible.  If I do not go to sleep quickly, I start to have angry thoughts about the days activities, or about life.  Sleep is better.

I did not realize all the emotions that I experienced until tonight when my wife asked me; "Are you angry?"  The answer is no and yes.  I am not angry at Her, but yes, I am angry.  Angry at the other emotions that trap me.  I can only imagine the frustration and pain someone feels that has this issue and cannot express themselves.

My Father in Law had Alzheimer's in the late 1980's.  He died from Alzheimer's in 1991.  He was a deaf as a stone.  He spoke with a thick German accent and because of his deafness had problems communicating with people.  He never expressed his emotions or his experience with Alzheimer's.  He did escape to sleep as I do and slept for over 24 hours a couple of times that I witnessed.  He suffered and died because he could not tell us what he was experiencing.  Of course, there were not medicines like Namenda or Arecept in those days.  He was silent, alone, and isolated.  I now, at this minute,  understand.

Sun Downing is difficult to endure but at least I can tell others about my experience.  One other frustration.  I know that every night, when the sun goes down, I will experience this prison.  Unlike other LBD issues,  Sun Downing does not come and go, it happens every single day.  My own terror that never misses it's appointment.

So that's it.  Personal reflection has lead me to begin to understand how Sun Downing effects me.  I hope this helps others.

Monday, October 28, 2013

More medical professional intercourse!

Now before you get all excited, intercourse is a conversation between two people.  That's what I had today with my newest neurologist.  I like Dr. King, he listens and responds to our questions  and concerns.  Today, he wanted to prescribe a new drug to deal with the hallucinations.  We pushed back because I am tired of being a science experiment.  And, he could not say the new drug would have a better than even chance of accomplishing what it is I was taking it for!  So, no new drugs.

I also asked him about surgery under general Anestassia for my left shoulder rotator cuff.  The pain for in my shoulder is substantial and it wakes me up at night.  But, I don't want to wake up from my surgery in another time zone either!  Dr. King said he would get with the shoulder doctor and get a decision.  OK, I can deal with that answer.

Let's talk about the hallucinations.  I have been holding this information back until now.   But, now I am ready to divulge the changes in my condition.  My hallucinations have taken on a more realistic dimension.  Recently I have seen people, real people, in locations that are logical for real people to be.  These people looked real, but upon questioning my wife, they were not there.  This had happened about a year ago and I actually was going to pick a fight with the person, who my wife said was not there.  But these recent hallucinations have set me on edge.  I have reduced my driving and never go out without my wife or someone I trust.  This is a major development in my disease.

Dr. King asked me if I saw a Psychiatrist and I do.  The Psychiatrist I see specializes in dementia.  So he is an exceptional person to help me.  I see that doctor tomorrow, so more intercourse!  We will see where this appointment leads.

Others of you in the LBD family have dealt with this development and I am not all that surprised.  But I am very concerned.  This change will definitely change my life and my wife's.  I will keep you informed.


Friday, October 25, 2013

Stress of my caregiver

We have seen some down grade in my condition and I have noticed some signs of stress on my wife.  We have noticed me experiencing more realistic hallucinations, more confusion, more exhaustion and weakness.  She is with me 24/7/365 without a break so this should not be a surprise.   We had one of our long discussions today and her stress and anxiety.  She has not been sleeping well for the last month or so and is emotional with me.  We had a disagreement that ended in some very hurt feelings on both of our parts.  This is totally not normal for us.  Arguments have NEVER been a part of our 40+ year marriage.  We both agreed that this is a part of her stress and anxiety over the progression of my disease.

This is a new, unwelcome, development in our journey with LBD.  I have written about our decision to apply for residence in a continuing care retirement community.  The one we applied to has a waiting list and that causes some stress also.  Waiting is never easy, especially when you are working against an unknown deadline.  What deadline you may ask?  The deadline of me still being well enough to be judges able to live independently by the professionals at the CCRC.  Yes, I have to pass an inspection of my cognition.

Life is never easy and life with Lewy Body is an even greater challenge.  So, all of these challenges have combined to cause stress, anxiety, and anger in my wife.  I am pretty much impervious to these mental issues.  They slip my mind and I just don't think about them.  Convenient, I think.  Bad short term memory can be a blessing.

But my wife has perfect short and long term memory and she thinks about all of the possibilities, negative and positive, of our future, all the time.  No wonder she can't sleep.  She is a planner.  Financial, moves, even furniture placement in an apartment we have not moved into yet.  Just the same, her planning has kept us in great financial condition for over 40 years.  You cannot argue with success!  But, I wish the stress and anxiety would leave he so she could get some restorative rest.

I am sure other care takers suffer from the same issues.  But in our case, their appearance is relatively new or at least relatively newly expressed.  So, as with all the other issues of LBD, we will trust God and look to Him for guidance and rest.

Monday, October 21, 2013

Who I was and who I am now

One thing I can state is that who I am now is totally different than who I was before this disease.  my personality, demeanor, build, strength, stamina, even how I talk are all radically different.  I know it is a shock to my wife and son.  But there is a strange metamorphosis when I am around Navy friends and acquaintances.

Today, a friend who worked with my wife called us and said she and her husband were in town and would like to stop by.  Besides the fact that they woke us up at Oh Dark Thirty, we were glad to have the visit.  Her husband was career Navy and is enjoyable to talk too.  We have some things in common, but he was a Navy Counselor, and if you read my Navy Blog, you know my opinion of that rate.  Just the same, for two hours, I got to be who I was.  A gruff, opinionated, hard core Master Chief Gunner's Mate.  Then, they left to continue their trip and I was back in LBD mode.   I find that change interesting because I never really saw it until today.

Around Navy people, I can go back in my mind and be who I was.  I see myself as young, powerful, knowledgeable, determined, and in charge.   Once I am out of that influence, I realize I am none of those things anymore and I slide back into reality.

People who see me for a few hours always say I look good or that they cannot see any effects of the disease.  That is because, for that period of time, I feel like the clock has turned back 20 years.   I have read that this is called "Playing to the crowd" or being a "Spot light player".  Personally, I see it as being in a comfortable place in my mind.  When I am with Navy folks that actually share interests with me, I am mentally comfortable.  When I am not, I feel distant and disconnected.

The only other place I feel mentally in charge is when I am doing God's work as a Pastor or Bible Study leader.  Again, I am with people of like minds and I concentrate on that commonality.  I like cars so I can connect on that subject.  But few people are really interested in cars.  I like fire arms and because of my Navy background, I am a subject matter expert in that area, but again, it is not good dinner conversation.  I steer clear of politics because I get angry over the course of the Country.  And again, if you read my blog at all, you know I try very hard not to get angry.  Other than those four things, I am not interested in anything.  So being engaged with folks outside of those areas is a strain.  One other interest area.  I like football, and I watch most games on television.  But if you ask me what games I watched the next day, I can't remember the teams names!  I can remember outstanding plays but not the team that made them.  Again,  as I have commented before, I find that mental disconnect interesting.

I do not like who I am now.  I am somewhat of a stranger to myself so I must really be difficult for my wife and son to understand.  This truly is a cruel and perplexing disease.  

Am I all that difficult to be around? Or is it me?

I have said before that when the sun goes down, I have emotional and mental difficulties.  I have also commented on my view of how people close to me appear to treat me.  Now, I am questioning my own thoughts and comprehension of how people treat me.  Can I be the problem?  Am I reading an attitude that is not there?

You have probably heard the statement; Just because I am Paranoid does not mean they are not all out to get me!   Am I Paranoid?  I have told you about how I view the people here in East LA, the Panhandle of Florida, as clannish, unfriendly, and aloof.  Could it be my misreading them?  Even my wife, seems distant and gruff with me in the evenings.  That is certainly not her manner with me normally, but recently, that is what I observe.  Again, are my observations valid?

Could my mind be playing tricks on me?  In the past, I have accused family members of following me and spying on me.  No one has convinced me they were not!  Yet, this recent feeling of dislike I am feeling may be just my Sun Downing impacting my ability to understand people.  Days seem fairly normal, but the evenings are a totally different matter.

I feel disconnected from those around me.  I have commented to my wife that feel like I am somewhere else.  Not really here.  I know that is hard to understand.  But things seem different in my perception.

My days are jumbles of events that I try to replay in my mind before I go to sleep.  Many times that replay frustrates me.  Maybe I am reading too much into this issue.   Or maybe I am the issue!

Living with a Lewy Body Dementia Patient

Living with a Lewy Body Dementia patient, 24/7/365 must be a very difficult burden to bear.   We see things different that most.   If our care taker is quiet, sullen, preoccupied, we see that as anger towards us.  We must know where our care giver is every minute of every day.  We want our time schedules met.  Meals on time.  Television shows on time.  LBD patients become very demanding.  I know because I am.

That's right, I did some self-evaluation and realized that I am demanding.  It is not on purpose but it is there.  Again, not our of meanness but out of need.   My wife is my security.  She is the one thing in my life that is not changing!   But just the same, she is continually the care giver.  And I see where my being dependent on her could drive her crazy!

The question is, how do we deal with this issue.  Well, now, it may not have an easy solution.  After we move into the Continuing Care Retirement Community,  I think the opportunities will be increased for me to have activities out of the house, that are safe and controlled.  It is no longer a good idea to let me out alone!  

But, just the same, I see the stress on my wife and I worry.  I know that other caretakers are impacted by the same stress and fatigue.  I would be interested how those people deal with this issue.

I seem to have a "Tank Full Float" issue!

I realize that LBD will progress and it is.  The most recent development is that my "Tank Full Float" is not functioning correctly.  I do not receive the "Tank Full" indication until my gray water tank is already in overflow!  This can be an issue if you like dry pants, furniture, beds, and carpets!!

I address this issue in a  mechanical way because of my Navy background.   I find it easier to deal with problems in a vernacular that I understand and identify with.  If a sewage tank on a ship is approaching the "Full" point, a float rises and tells the operator or watch stander that the tank is almost full.  That way, he can shift sewage discharge to another tank instead of overflowing sewage into the ocean.  If you are old, you may remember we used to dump raw sewage over the side, everywhere!  In port, at sea, everywhere.  But now, that is illegal and we keep sewage in tanks and treat it, sterilize it, and then discharge it as an inert substance or, in port, we pump it into the sewer system.  Humans are the same.  When we are young, we pump our sewage anywhere, anytime!  Then, as we learn, we dump sewage in the appropriate sewer connection or we hold it until we find an appropriate place.

Then we get old, or get impacted by a disease like LBD.  Then we get erroneous alerts on sewage discharge requirements.  Like, when you run to the bathroom and then, stand there and nothing happens!  Bad "Full Float" operation.  Or, you are sitting comfortably in your recliner, and you get the "Tank Full" alert as sewage is leaking out already!  Not good!

We do have ways to deal with this malfunction but it Depends on user interface!  Someone has to empty and dispose of the temporary holding system!  Just like when we were really young!  

right now, the alerts are JUST early enough to avert a major spill.  But it is an issue I have noticed and in the spirit of this blog, I thought I would address this issue in the open, frank, honest, method that I address all LBD issues.  Now, all I have to do is find the "Dut Engineer" and see if we can adjust that faulty "Tank Full" float indicator!

Wednesday, October 16, 2013

Being with people like me!

Today, I went to play table tennis with a friend that has Parkinson's.  We manage to play once or twice a week.  In spite of his affliction he is a great table tennis player.  We play at a recreation center operated by the local Methodist Church.  Many folks from the neighborhood come there to workout, do aerobics, and just talk during the week.  On Sunday, it is a Church, meeting on the full court basketball facility that seats over a thousand for two services every Sunday!

While we were playing, an acquaintance I know who has Lewy Body Dementia like me, walked by.  I would much rather talk with him and his wife than get beat like a nail by a fellow with advanced stage Parkinson's playing table tennis.  Andy, his wife, Sam, my table tennis partner, and myself sat a talked for 30 minutes.  I cannot tell you how refreshing it is to compare symptoms and problems related to LBD with another person with LBD.  He and I are on the same sheet of music, even though he is a step or two further down the path than I am.  We can and did compared testing experiences, hallucinations, medicines, muscle pains, and other issues he and I share in common and some he has that I don't or that I have an he does not, yet.

For that 30 minutes, I forget that people call me a liar and say I am not sick.  I forget that I hurt every night, can't remember my last thought, don't know what meds I take, and sometimes forget how to read.  Instead, we are the same.  We are a community of two, dealing with life the best we can.  We do not have a disability we have a challenge.  If you do not have LBD you cannot understand the comfort I feel being with another LBD patient.  I believe sufferers of cancer, MS, or even Diabetes may have the same issue.  Being with someone, talking with someone, commiserating with someone, walking the same path as you is comforting.

For instance, I have written about REM sleep disorder and how I live out "Fight" dreams in my sleep.  And how I punched, no poleaxed, my wife one night.  And how I now take meds to help that issue.  Andy has not had that issue.  I am glad and I hope he never does!  But he was understanding and interested in my issue.  That is comforting and helpful.

My wife and I plan on having them over soon to make our bond stronger.  This was a good day.  

Monday, October 14, 2013


I have heard personally, from more than one Dementia patient that they feel their wives, family, friends, do not respect any more or respect them less because of their diagnosis.  So I though I would try to dissect this  a little.

You will notice, I only refer to men.  I do not know any female Dementia patients.  So, I have no basis to address their issues.  Second, I am a man and as a man, trying to understand the Psyche of the female is pointless.   But, I fully understand being a man.

As a successful man, I was fully in charge of my life.  Yes, I acknowledge GOD is in control of my life and all of life.  But for this discussion, we will look at this as seen through a man's point of view.    I worked, all the time.  Made good money, saved, invested, bought and sold homes, made some good and bad decisions. Took credit for the good and responsibility for the bad.   I was intelligent, resourceful, witty, and caring.  My wife looked to me for guidance, answers, knowledge, on many issues.  I fixed things around the home, the car, the lawn mower, the landscaping, the Church.  I was capable, physically fit, not overly emotional, and even dependable.  I was sexually capable, at least in my mind.  Concerned for the emotional and physical well being of my wife and son.  Did I have faults, yes!  But none so bad that I would get fired from any position in my life.  I did the best I could to provide and better the life style of my wife, my son, and those around me including in-laws and extended family.  I had good, close friends that counted on me and I counted on for help, advice, and support.  All in all, I consider myself to be an all around good guy.  Not perfect.  But not fatally flawed either.

Does this sound like the man you are married too?  I thought so.  Then why, when he is effected by a degenerative neurological disease, do you treat him like he is a juvenile delinquent that can't be trusted, can't do anything right, and does not listen to anything you say?!  I mean that!!   I talked to another Lewy Body Dementia patient at a local rec center I go to and he told me the same thing.  If anything goes wrong, it is his fault!  He fits the description I just laid out.  He is a retired Navy Captain!  Yet today, he is treated like an E-1 Seaman Recruit.

We don't screw up on purpose.  We don't sit and think, how can I piss her off today!  Instead, we think, how can I stay out of trouble today!  The Captain told me, he tries to be dressed and ready to go out the door 10 minutes before his wife says they have to leave.  He told me that as his wife was walking u to us and she said;  He is the reason we are always late!!  Why berate someone for trying to meet the standard you set?

I have a theory.  We are being disrespected because we are no longer what we were!  It is like we are now useless.  Like a car that won't start, or a cracked tea pot, or a broken chair.  Broke beyond repair and not worth a place in the home.  Well, if that is the way you fell, put us in some care facility and leave us there.  We cannot defend ourselves.  We cannot do better and I promise you we will do much worse.  If you can't love and respect us in the stage we are in, I promise you really won't be happy changing our Depends and treating our diaper rash!

None of us planned on getting Dementia.  I certainly did not go out and get infected with the Dementia bug on purpose.  But, I have it.  I can't change it, and I am tired of apologizing for it.  When you went through menopause, did we treat you with disrespect.  I did not and I believe your husbands did not either.  Why do I say that with confidence?  Because you are still married!   Most men who can't deal with menopause get a divorce.  If your are still married, he cares!  So, why not try to understand his issues now that he has Dementia?

I know this sounds emotional, and it is.  But those of us trapped in Dementia are emotionally compromised and angry words, harsh looks, and disapproving comments impact us more than ever before.  We try to meet the standards we lived up to our entire lives.  We can't!  It is physically and mentally impossible.  But we hurt inside because we can't.  We feel diminished.  Less of a man, and even lees of a lover.  It is difficult to tell you how bad we are hurt by our disease.  And then, the disapproval we incur for trying is even more cutting than you can imagine.

Maybe it is difficult to respect the man who could do everything and now does not have the energy, mental capacity, or physical strength or ability to do what he used to.  But remember, you don't wear size 8 dresses anymore either.  Neither is a reason to disrespect you spouse.

Friday, October 11, 2013

Why I write

This blog has been a labor of love for me.  I started this endeavor at the encouragement of my Wife and my Neurologist.  It is a sort of therapy for me but I hope it is a source of first hand information on how Lewy Body Dementia impacts the person effected by LBD.  I have explained and discussed all but the most personal issues of how LBD has affected my life.  But the most rewarding part for me the may comments you, the readers, post.

Many of you have commented on the "First Person" approach I have used.  God has given me the ability to write about what I experience and feel in this journey.  Other well written blogs approach LBD from the "Care Giver's" point of view.   I read these blogs and have gained some very useful information and my Wife and I appreciate their candor and truthfulness.   It is very important for the care givers with experience to inform the new care givers of the issues they face.

For those of us with LBD, there is little chance to interact with a fellow LBD sufferer.  The LBD Association does a great job keeping us up to date on treatments, research, and symptoms.  But there is still a need to understand the silent issues the LBD sufferer faces.  Sun Downing, vivid dreams that meld into your waking hours, the urgent need to know where your care giver is, 24/7/365, and other annoying issues we have.  These are the areas I try to provide input for and I will as long as God gives me the ability to write.

That being said, it is more difficult to express myself.  As I have described before, my anger issues have increased and that makes it difficult to write an unemotional blog.  You probably agree with me on that.  But I will continue to try.  LBD can be a lonely journey for the person with the disease and the care giver.  Very few people even know what LBD is!  And then, when you tell them about it you get the reply;  "He doesn't look sick!".  Well, try being with him after the sun goes down.  Trying sleeping with him when he dreams of a fight and punches you in the nose!  So, we all need to educate those around us about this quiet, tortuous, disease.

I appreciate your readership and friendship.  I very much appreciate your comments and suggestions.  We are in this journey together.  When one of us grieves, all of us must grieve.  We are our own support group and I encourage even more of your to blog about your experiences with Lewy Body Dementia.  There is plenty of room for all of us!  Again, Thanks!!

Wednesday, October 9, 2013

Sun Downing is really becoming an issue!

Winter is coming, even in Florida, and the days are getting shorter.  Darkness causes Sun Downing.  A symptom of dementia.  I suffer from this issue and have for quite a while.  But lately, it is becoming more pronounced and more of a problem for me and my wife.

As the sun goes down and the house gets darker, even with lamps on high, I get agitated, grouchy, and easily upset.  Comments made take on negative connotations i my mind and I get angry and combative.  Not physically, at least not yet.  But outbursts are common and my anger is noticeable.

This is new as I have written before, since the LBD has progressed I have tried earnestly to control my temper.  I know how angry I can get and I don't want that temperament to take over my life.  But, lately, as it gets dark, my mood does too.

I must always know where my wife is and anything she says can invoke a grumpy response from me.  If she goes into another room and I don't notice I yell for her.  I even get angry with Marcel the Wonder Dog.

I will go to bed early if I feel I am overwhelmed with the Sun Downing and that has become a habit lately.  Sometime escape to the sleep world is the better part of discretion.  I hope I can keep that level of self-control.

As far as I know, there is no help for this.  As my best friend Jerry says;  "It is what it is."  And ith that, I am going to bed.

Tuesday, October 8, 2013

What starts you clock?

I spend much of my awake and sleeping time thinking and reminiscing about the past.  And recently, those thoughts have turned towards the things that excited me.  I spent 40 years of my life in or working for the Navy.  In those early years, I was motivated to promote, accomplish qualifications, pass inspections, complete required training, deployments, transfers, choosing challenging duty assignments, and learning as much as I could about being a Sailor.  Then I retired from the Uniformed Service and joined the Civil Service working for the Department of the Navy.  Those years were filled with the same motivators.  Nothing changed.

I also married during my Navy time and I was dedicated to caring for my Wife, homes, moves, raising my son, Church programs like AWANA, and getting a college education.   Additionally, I was interested in competitive shooting, the NRA, The Friends of the NRA, and being a urban survivalist.   I also followed politics, football, NASCAR, and Baseball!  All of these things kept me going, kept my internal clock ticking, kept me interested in life.  

But now, I cannot tell you what, if anything, motivates me, excites me, keeps my internal clock ticking.  Yes, I have the time to do things but no desire and no one to do them with.  Yes, I enjoy shooting, once I get there,  But I have no desire to expend the energy to plan an outing.  The things I spent so much time and money obtaining are now the things I am worried about safely storing and keeping from theft.  They have become a burden not a pleasure.   Actually, almost everything has become a burden and not a pleasure.

Even my belief that I could defend the home front from intruders and marauders is but a fantasy.  Everything I cared about and work so hard for are now a burden at best and a source of fear and frustration for me.  I hate to watch politics and get angry and depressed over the Socialist, Muslim centric direction our government is headed.  So, I try not to watch.

The bottom line is, I feel useless, worn out, disconnected, and isolated most of the time.   I try to rebound, act like I am feeling better, even act normal.  But I am not and I do not know how to fix this.  I am not attached to the world around me because I don't like it and I am mentally somewhere else.  Maybe the move to our CCRC will help.  It is a beautiful place and maybe I can make some new friends.  We will have some things in common, old age!  

Even my health has taken something away from me.  I love to eat!  I love bread, pies, cake, fruits, lasagna, pasta, beer, pizza, and everything else.  But, since my body had issues processing all of those carbohydrates, and my blood sugar was high, I was directed by my GP to reduce my carbohydrate and sugar intake.  I have, it worked, at least on my weight.  Blood tests will show if my blood levels also agree with my weight loss later this year.  But, I can never eat like I did before.  Why, because all the good I have accomplished will go away!

This is not a new issue and I have written about it before.  But it is getting more pronounced.  Will these mental issues get better like my weigh and blood chemistry?  I doubt it.  I see the future and I don't like it.  This is the first time I have openly said that I am not happy with my condition.  Maybe that is good.  But the recent changes have let me know the future and my inability to get excited about anything only reinforces what I already know.  I have told you before, I don't want sympathy.  Understanding yes, but no sympathy.

So, that's where I am right now.  Maybe tomorrow will be different.  Only time will tell.

Monday, October 7, 2013

Sleep effects Lewy Body Dementia

I recently received a comment from a reader discussing REM Sleep disorders and LBD.  The reader was absolutely correct.  I have REM sleep issues including acting out my very life like dreams.  I wrote about it before, but to keep it short, one night, I was dreaming I was in a big fight and I desperately needed to hit someone!  I did!!  And I drove my Wife across the bed!!  I take some drugs for that problem but I still move around a lot and my Wife stays on alert for any quick moves on my part.

REM sleep disorders are a prime indicator of LBD.  When we told my neurologist about the punching episode she said; "I was expecting that!"  I told her a "Heads Up" would have been nice.  But she told us she did not tell us because she wants everything to develop on it's own.  Just the same, I had a hard time getting my wife to stop sleeping with a catcher's mask on!

Vivid, life like, dreams has been an issues for me the last few years.  I dream in color, with the faces of present and past friends and family, and many deceased friends and family featured.  I also have many "fight" or combat dreams.   I also have issues with these vivid dreams becoming reality when I wake up.  I have had days when I tried to complete the task I was dreaming about.  Trust me, that is unnerving!

LBD is a disease that increases with time.  Little issues start to pile on top of other issues until you have so many symptoms you are overwhelmed.  Dreams, hallucinations, memory loss, loss of reading capability, forgetting the names of those around you, fear of new places, new people, crowds, being totally routine based, thinking people are stealing from you, following you, and did I mention hallucinations.  I am sure there are other issues, but I don't remember any others at this time.

Thanks for the comment on REM sleep disorders.  It is important to keep people up to date on the problems those with LBD experience.

Sunday, October 6, 2013

Recent changes

You may have noted in my last few posts a certain edge in my attitude.  It is not on purpose but it is a further progression of the LBD.  I have wrote before how I try very hard, to hold my anger in.  Others around me get angry, shout, scream, cuss, and loose their temper in general.  But, for the most part, I hold my anger and aggravation in.   I believe, loosing my temper, showing my anger, my frustration, especially about my condition and how life around me impacts me, would cause more issues than solve.   But lately, I am having difficulties holding in my rage and when I do, it bubbles and ferments in my mind until LBD erases the reason for my angst.

I know that others around me are frustrated over my condition.  And I DO appreciate their feelings. But they are not the one unable to remember, drive, move, read, or do other things they once did.  

This change has been coming slowly and my wife and I have both noticed these changes.  But how it has impacted my inner control capability is new and upsetting.  I have to live in a world of people who are not effected by LBD and have no understanding of the disease.  They think I have no issues  and that I am a gold brick at best!  Yes, there are people that have told me that.  I won't say what I would like to tell them!  Self-control!  But my ability to live in this "normal" world is diminishing and soon I will start to blurt out my emotions and feelings without filter or consideration for feelings or setting.  That should be interesting.

As I use this venue as an education for those of you without LBD, I also use it as therapy.  This time, it is more of a warning of things to come.  Things I no longer have control of.  Things I would rather not have to deal with.  Things, just things!


I have participated in a group study with the Alzheimer's Association and read quite a bit of information about communicating with people who have Dementia.  But, none of those experiences or articles had as much impact on my understanding of my own issues than the GEICO Motorcycle Insurance television ad.  The one with the motorcyclist who is made of money.  He rides by, money falling off his body, and a male on a motorcycle says;  "I wish I was made of money."  And the woman accompanying him says; "So do I!".   In my mind, that is a mean, disrespectful, unloving,  comment and if she was with me, she would be walking home!

Now I have never been a fan of "walking on egg shells"  around people.   But, I also try to be considerate of others feelings.  For instance, I always call older women, Young Lady!  I have never had one of those ladies recoil or act indignant with that comment.  Instead they smile!  But, I now realize how simple observations by people around me causes me hurt, anger, and even depression!

My mind processes things different than it ever has.  Innocent thing said by individuals has caused me emotional pain.  Yet, I don't want to respond to these comments with angry words of even in a defensive way because I really can't decide if they meant what they said to be a spa or mean comment directed at me or they are simply making a general observation.   So, I just internalize what was said and how it hurt me.   This is not good foe me and I know it.

There is also the issue that those of us with Dementia need more time to respond to a question than those of you without Dementia.  That causes the questioner discomfort and leaves the Dementia patient feeling neglected.  Especially when someone answers the question for the Dementia patient or just says; "never mind!"

Also, things like the GEICO Motorcycle ads leave me feeling less masculine, inadequate, and disrespected.  And before you tell me; "It's just a TV Ad!" I will tell you people make comments to me, in the course of a conversation, that are exactly like the GEICO ad and hurt me and leave me feeling useless.  I never respond, I just retreat into myself.

But, I am sure that other Dementia patients suffer from this emotional issue too.  I have a friend that has Alzheimer's and he does tell his wife she is being disrespectful to him.  Now, I know she is not! But he sees her actions as disrespectful.  And, in the case of the Dementia patient, it is what we believe you meant, not WHAT you meant.  Remember, we live in our own world with our own perceptions, colored by our broken minds.  Even if the Dementia patient is early in the disease, or having a good mental period, we still have broken processor and perceive what is said with broken filters.

So, as a Dementia patient, who is well into the middle stages of this disease, I recommend that you, the care giver, understand the mental state of your Dementia patient and try to work with that patient in the place he or she is.  This will help both parties.

Another issue we Dementia patients suffer from is how we do what we do.  We try our best to do what ever we do, as well as we can.  I realize that I am not as good at most things as I was before LBD.  But, that does not detract from the fact that I do my very best, all the time.  Think about that when you criticize our efforts.  Remember, out brain processes thing different that before and different than yours!  Criticism hurts as much as the off hand comments I talked about earlier.  Maybe even more, because they are directed at us.

I am not trying to be mean or trying to get back at those comments.  And I am not saying that what someone says or how they say it to a Dementia patient, is wrong or bad in normal situations.  But we are not normal!  I am trying to give insight into the brain of a mid-term Dementia patient and how things said and the situations that surround those statements impact us.  We cannot "just deal" with what is said.  That part of our brain is broken, dead!  You, the person not effected by Dementia, can deal with what you say because you can understand how our minds work, if I tell you.  And, I have.