Saturday, September 19, 2015

What it is like to have Lewy Body Dementia, the Second Half!

I am well into the third quarter of my journey with LBD.    Many changes have occurred since I wrote the first article about my condition.  So, I thought it was time for an update.

Depression is now my constant companion.  The vast majority of the time, I feel that no one cares about how I am or my needs.  I shun contact with most people with the exception of a few very close friends and small children!  I find i enjoy and crave spontaneous interaction with young children.  Why?  Maybe because they do not know me and do not know I have LBD.   They have now knowledge of how I was before the disease nor how the disease has impacted me. These interactions are short, fun, and without any future connection.  I love to make small children laugh, feel important, and wanted.  Funny, as I write this, all of these emotions are missing in my life since LBD has progressed.

Sleep is my escape.  My bedroom is my sanctuary where I can thing, deal with my anger and other emotions on my terms, and be away from others and the world.  I seldom watch the news but prefer to get my news from the Internet, in small doses that I can control.   This isolates me from the diatribe of patrician people.  My Nation is in a fatal decline, just like me, and the news of the day painfully illustrates both truths to me.

Most people I love have withdrawn from me.  Oh, some are here, close to me, physically but not emotionally.  That is their way of dealing with my disease.  I now understand why the elderly, especially those with Dementia's are placed in care facilities and forgotten.  To invest time or emotions in these folks, like me, is too painful for the loved ones.  It is like keeping their loved ones dead body in the bedroom!   Well, I am not dead yet and I am still mostly here mentally, and I need mental stimulation and emotional and physical love!

I do not drive because of my disease.  We made that decision to protect us financially.   I love to drive, and being a passenger is painful to me.  But, it is the right decision and everything I get in the passengers seat, it cements that decision so that when I am no longer able to make that emotional decision, I will already be used to NOT driving.  It is sort of a reconditioning of my brain.  The same that happened at 16 when I received my driver's permit.

Not driving, does make me a prisoner.  While the community I live in offers many social events and opportunities to interact with others, I cannot go any where outside of the community without someone driving me.  There might as well be a all around this compound with guards and gun emplacements!  

Many times, I am overwhelmed by noise, as I have written recently.  That night, I was violent angry and ready to fight someone, anyone, over the attack on my senses!!   I am also overwhelmed with a sense of not caring about myself or anything or anyone else.  When this overwhelms me, I feel "no one gives a shit"!   I want to be alone when this occurs.  Alone in all senses of the word.  Yet, I wish someone would hold me, kiss me, tell me I am loved, important, and needed.

Physically, I now NEED my cane for balance and I feel lost without it.  I have involuntary arm and leg movements.  My major muscles ache most of the time.  My digestive system is in turmoil.  I suffer from constipation/diarrhea bouts every couple of days.  There are no normal bathroom days.  Incontinence is not a constant condition but is starting to occur.  My vision is now impacted and I have difficulties seeing any distance.  I have great difficulty reading and comprehending.  My speech patterns have been altered to short, sentences and long searches for words to describe most things.

My Blood Pressure fluctuates causing me to become dizzy and unstable on my feet.  This autonomic disruption also impacts my sexual ability.  I cannot maintain an erection hard enough to achieve insertion or long enough to achieve orgasm.  This, along with loosing my independence leaves me feeling less than a man.

Mentally, I am loosing my memory of my favorite past, my Navy days.  I have periods of name remembrance and then loose those names and events.  My writing in my Navy Blog has all but stopped.  I get angry and abusive over events that I should not.  I have no social filters.  Much to my Wife's dismay.

I have been abandoned by my Congressman, Jeff Miller, of Florida and the Veterans Administration.  Congressman Miller and his staff have done nothing to help me with my VA claim.  The Disabled American Veterans Association has been a great help.  But, they can only do so much.  Congressman Miller has clout, but I guess I am not important to him!

This has, more and more, become a lonely, solitary, fight.  The doctors do not have a clue and I feel they learn more from me than I do from them.  Even the closest family and friends keep me at arms length not wanting to invest in a dieing person.   People I meet tell me I do not look sick, even retired doctors.  Even though they have no base line or insight into my mental or physical condition.  If someone has cancer and they tell a new acquaintance, that new person does not say; "You don't look like you have cancer!".   Yet they do say, you don't have Dementia!  The end of their statement is never said but only thought; "You lying sack of shit!"  But, I hear it and it hurts and frustrates me.  Someone is going to get hurt someday soon when I canon longer control the emotion to punch that uncaring individual in the nose!

As you can see, I am now full consumed with Lewy Body Dementia.  In the beginning, I had the perspective of: "That is interesting" when a symptom occurred.   Now, I only feel rejection and hopelessness.  Much of the writing concerning Dementia is centered on the caregivers.  Well, from my experience, they have it easy.  Just detach from the patient and go on about your life.  No one really want to know what the Dementia Patient is gong through and experiencing.  Every time I tell someone what I am experiencing, they tell me they have even more horrific issues.  So, I seldom tell anyone anything.

Like I said, this is a lonely journey with a terrible disease, that none knows about or cares about.   I would be much better off in a Dementia ward of a skilled care facility, with others on a similar journey.  Just lock the doors and keep the gawkers out.

This was a long, very personal, post for the sole purpose of baring all about my journey with LBD.  It was not meant to hurt or get back at anyone.  It was meant to educate anyone who really cared about someone with Lewy Body Dementia.  If that person really exists.

My posts will not become further apart and shorter as I find it difficult to write in this or my Navy blog.  I am still here, just moving much slower.



  1. We appreciate all that you share. I know how very difficult it is. Know that we do care about you, friend.

  2. Thank you so much for writing this blog. I found your blog through the award you won for your blog, congratulations! I work in a dementia unit & to hear & feel how you feel about things helps me communicate in a better way with my patients. I admire the effort that you make to continue writing & thank you for your honesty in what you write. I wish you & your wife all the best in your continuing journey. Again, THANK YOU. Patsy

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  4. I think you are the bravest man who ever lived!

  5. I am still interested and reading your blogs.Thank you for writing as it gives me a better understanding of how my husband felt prior to his passing from LBD. He could not speak well enough for many including myself to make out what he wanted to say. I think he just often gave up and as you he would retire to sleep often. It is a journey that I wish we had not had to take. i miss him terribly but I know he is in a better place now and does not have to deal with LBD anymore.If I were there I would give you a big hug because I know how much that means.

  6. I know it feels like nobody cares sometimes but we are out there! I am a medical student from the UK writing about dementia and hearing about the experience of LBD from your point of view is really eye opening. Thank your for writing, it will help anyone who reads it to understand. We are doing a buddy scheme at my university where we pair up people with dementia and under-10 schoolkids in weekly activities sessions to help the kids learn about dementia and make friendship bonds between generations. It has been really successful so far :)