Thursday, March 30, 2017


People with LBD normally deal with Hallucinations.  It is a normal symptom of this disease.  I have had Hallucinations, off and on, since the beginning.   I have seen horses in my back yard, men crossing the freeway in heavy traffic, cars ready to hit us, all sorts of animals around me, and recently a man poking in our patio window.  I have also experienced vocal Hallucinations where I hear voices that I recognize and do not recognize, calling my name or asking me questions.  Additionally, I still experience touch Hallucinations where I feel someone or something walking on me in the bed or someone touching y shoulder to back when I am alone in the bed.

Some of these have been frightening and some not.  I have recently been startled by men I see, approaching me, when I am walking the dog in the day or the evening.   That is probably because of the progression of the disease.

I know other LBD patients that have similar Hallucinations.  Again, some frightening and some just things they see.   The truth is, LBD is a disease that has Ups and Downs and Hallucinations are part of that.  It is not abnormal for a person's Hallucinations to stop for a while and then return with a vengeance!   These occurrences are normal!  So, try to deal with them like the other issues of our disease.  I understand it is difficult, especially if your Hallucinations are unnerving or frightening.

I actually have had a Hallucination that scared me so much, I made a special appointment with my Psychologist to discuss it.   I have recommended before having a complete "Team" for your care including a Psychologist.  This is a disease that requires a complete team approach.  Trying to understand your experiences with LBD with only a GP or Neurologist is handicapping yourself, in my opinion.  Yes, I understand there are financial limitations, but if you can, build a team.

Hang in there.  Try to find a support group in your area. Look into the local Alzheimer's Association, a local hospital, or even a local College or University, for a support group.  The more support you have, the better your journey and the easier your family will be able to deal with the disease also.

Again, this is my advice based on my journey, so far.   I am not a medical professional of any type.  

Monday, March 27, 2017

An issue I can't remember

Earlier in my journey, I had an event where, I was sure then and I am still sure, that I was followed by a family member when I went out for a while to get a sandwich.  This morning, I was very bothered by something similar that I cannot remember.  Sounds strange, I know.  I was up before my wife and I was very agitated and upset over this, now unknown, issue.  Now I am very  upset by the issue and the fact I cannot remember what it is!!

I am also becoming more curt with people and I reply to people in a manner that is unfiltered and without respect to their feelings some times.  These issues are not constant but they are not announced either.  I do not know she they are going to occur!

This, coupled with an increase in very realistic hallucinations has caused me to realize things are getting worse.   I absolutely must stay in our apartment until February of 2018 to keep the monthly rate we have now.  

The LBD journey is getting more difficult and the decline is steeper.   I guess I will just have to get tougher.

Sunday, March 26, 2017

You don't look sick! Again

I discussed my anger over the comments of people on my journey with LBD with my Psychologist last Monday .  You know, the comments those self-proclaimed neurologists that work other jobs that tell us we are faking.  In any case my Neurologist tried to tell me those comments were actually "COMPLIMENTS"

I can see that.  It is like telling some very overweight woman; "You don't sweat bad for a Fat girl!"

Compliment my butt!  The people that tell me I look "normal" are telling me I am faking my disease like some "Welfare Queen".   You are lying to get money from the government!  You are faking to get sympathy!  You are pretending to have a disease they really cannot diagnose so you don't have to work.  

Let me state, that I disagree with my Psychologist, completely!  And that I think he had a FAKE Phd diploma from a Cracker Jack box.

There, I feel better.  Anyone want pancakes?

Friday, March 24, 2017

The other side of Dementia. The care giver's pain!

I know a man where we live that visits his wife, who has advanced Alzheimer's, every day.  He talks to her and tells her of the news, family happenings and the things he has done that day, to keep her informed of the life she is missing.  For three years, she has not talked, reacted to anything he said, his touch, kisses on the cheek, or even loud thunder and lightening!  She has her eyes open, but responds to nothing!

A few weeks ago, he planned a Birthday Party for her.  All of their children and grandchildren we in attendance.  There was a custom made Birthday cake and the party room in Skilled Care was decorated for a BIG Birthday Celebration.

He and the nursing staff moved his Wife into a wheel chair.  Before he pushed he into the decorated room for the surprise party, he told her; 'Happy Birthday Sweetheart!"  When they entered the room, to the family shouting "Happy Birthday Mom, Grandma, Great Grandma"  His wife, who has shown no voluntary movement or response to any stimuli for three years reached out for her husband's hand and squeezed it!!

My friend broke down and cried!

He told me later, "I never say anything in her presence that I do not want her to hear.  I always knew she was still there!"   That hand squeeze was worth everything to Him and Her!!

This is a good lesson in how to interact with those of us who have dementia.  We are still here.

Sunday, March 19, 2017

You don't look like you have Dementia! You don't look SICK!!

Those two statements send me into a rage!  If you have read my other posts, you already know that.  Today, we came home from Church and ate Lunch in the dinning room of Azalea Trace.  A wonderful meal, like all of them here.   We ate with a couple that we know and the woman is a leader in a Bible Study that my Wife is also a leader.  We are friends with them, have eaten with them before, and helped them with problems.  The husband asked me about my disease and how I was diagnosed.

I am very open about my journey.  I will openly, truthfully, describe everything that I have experienced to anyone interested.  And I answered his questions.

Then, after lunch, we split up, and I went to our apartment to let Marcel the Wonder Dog out, before his bladder broke.  My Wife was sidelined by the Wife of the man who questioned me about my LBD. She said;  Your Husband does not look or act sick.   He shows no signs of dementia!  

I have been told that by other folks here.  And truthfully, it is getting old and very difficult to deal with in a polite manner.

What actually, does a Mid-Term Dementia patient look like?  I drool, pee my pants, I have very thin skin that bleeds easily, scabs slowly, and refuses to heal.  I am unstable in my walking, use a cane all the time.  I seldom remember any one's name, do not drive the car anymore, at the recommendation of my Neurologist, and take enough prescription medicines to keep a small pharmacy in business until I die!!  And these are only the outside symptoms that a blind man on a galloping horse could see.

The people who pass judgment on my do not observe how bad my nights are, how confused I get.  The fact that I hallucinate realistic and sometimes frightening people, animals, and situations, often.  I have difficulty reading, do not know were I am, what day it is, or even what time of the day it is.   There are many other issues, but you get the idea.

How does a person with early cancer look?   How does a person with a colon tumor look?  I had a pre-cancerous colon tumor that caused me to have the ascending portion of my colon removed!!  I looked just fine!  

I am actually thinking of getting a name tag made that says;  I have Lewy Body Dementia!  I am NOT faking!  If you cannot deal with that, leave me alone!

Monday, March 6, 2017

The impacts of LBD; Part Two

I may be selfish and self-centered.  It is hard not to be when you are suffering from any incurable, progressive, life ending, disease like LBD.  Yes, the end can come slowly, but it IS coming.   And sooner than it would have if I did not have LBD; at least in theory.

I also know family and friends have their own lives.  Their jobs, families, hobbies, children, and home maintenance, to name just a few things that keep them from visiting and calling.   My Navy career took up the majority of my life from 1969 to 2010.   I neglected my family, son, parents, other relatives, and friends to do what the Navy needed me to do.  I volunteered for the tough assignments, rode deploying ships,  worked late to make sure my equipment worked, and avoided anything that looked like easy jobs. So, I do understand their position.

Just the same, I feel abandoned and neglected much of the time.  Are these feelings valid on my part?  I guess that depends on which side of the issue you are on.  I do not expect or deserve 24/7/365 care, visitation, and coddling.   But, once in a while would be welcomed.

So, that is the end of my self-centered complaining for the moment.  LBD IS a lonely disease.  And I have written before that I believe living in Assisted Living is better for the spouse of the Dementia patient because she would get the good times with me and I could be alone, in the care of the professionals, when I am being difficult.  But, she has to bee there to share the good ties or my theory is wrong.  I believe she will be.

Sunday, March 5, 2017

The impact of LBD on the spouse

We live in a retirement community that has a large population of older folks.  Many in very good health, others with serious health issues, and some that deny having serious health issues.  But I have watched how different diseases impact married relationships.   Some couples draw closer together and find new strength to find a way to live with the disease, closer together, more in love.

Yet, some couples fall apart, loose contact, and are no closer that two people that live in the same town.  I see spouses of Dementia patients that protect their spouse and shield them from life.  And I see spouses that dump their spouse in Assisted Living and never visit them.  The travel, go out, enjoy their new freedom, without the anchor of the Dementia Spouse to ruin their lives.   This "Disease Divorce" happens in all debilitating diseases that I see here.  So, Dementia is not the only Disease that causes this.

I completely realize I am difficult to live with.   That is why I asked the Neurologist to give me a medicine to calm me down and let me sleep at night.  And, since my LBD is getting WORSE I, more and more, don't want to be with people.  I refuse telephone calls, don't call people I used too, and do not pay attention to the world around me.  Many nights, I go to bed angry, depressed, and ready to fight anyone for any reason.  Of course, the Clonazapan finally takes hold and I go to sleep.

But soon, hopefully not for another ten months, I will move to the Memory Support Unit in Assisted Living.  I wonder how that will work out.  Right now, i have difficulties  being positive about anything in my life.