Wednesday, March 30, 2016

Latest update

I realize my most recent string of posts is somewhat negative.  Nut it is how the progression of my LBD has left me.  Tonight, I went to play billiards as I do on Wednesday evening.  I really enjoy the fellowship of the other men and trying to play pool.  I wish I would have listened to my Dad when he tried to school me in Billiards.  He was amazing!  I am too.  Amazingly bad.

I left the pool room about an hour early because I feel tired, depleted, and weak.  I have no idea why, but I felt bad enough to believe home, in our apartment, would be a better place than in the pool room.  I ave not pushed the medical alert button.  I do not feel that bad.  But I have told my Wife how I feel and I will keep her informed if my condition changes.  I do believe I will be going to bed early even though I had a good nap.

Since I have been experiencing a cascade of downward symptoms, this comes as no surprise.  But it requires vigilance.

Tuesday, March 29, 2016

Discussing Dementia, NOT!!

No one openly talks about Dementia!  It is like your spouse is pregnant out of wedlock!!  Or like they had an affair!!   Dementia is a medical condition that people suffer from through no fault of their own!!  We nee to get "Dementia" out in the open for our own good.

Now, some of the blame belongs with those of us who have "Dementia"!  We deny it, we cover it up, our spouses hid our "Dementia", they do the bills, speak for us, make excuses for us!!  Well, the time for hiding DEMENTIA in the closet is over!!

We must get Dementia in the open.  We must discuss Dementia with family, friends, neighbors, Church members, Doctors, and anyone else who will listen.  And as a person with Lewy Body Dementia, I plead with all of you to be honest about your symptoms.  I plead with your spouses to be open with us and our families about our issues.  The more we openly, honestly, discuss Dementia, the better our care options will be.

I live in a Continuing Care Community called Azalea Trace in Pensacola.  Today, we had a presentation about the Wellness Program that ACTS has in all of their communities. The Wellness Program includes Dietary issues, physical wellness, and Spiritual Health.  All Very, Very, Important to our health and well being.

But, they neglect to even mention Dementia.  I recommend a program that introduced a Dementia Care Continuum that started when an individual is first exhibiting Dementia symptoms.  A program that addressed the progression of the disease, familiarized the Dementia Patient and their Spouse on the care options available.  As the Dementia progresses, visits to the Dementia Care facility in the ACTS Community would take away the stigma of these places for the Dementia patient, thus aliening the fear the patient may have.  Meeting the care givers so they become friends will help east the pending transition.

Presently, we move the Dementia patient into a sterile, strange, hostile, environment when they are at their weakest, most confused time.  One reason for this is we deny we have Dementia until we are so bad, denial is futile!  Dementia patients need to be open, honest, and comfortable, discussing their disease.

I remember when President Ford's Wife, Betty, had Breast Cancer and openly discussed her disease and her treatment.  That openness paved the way for millions of Americans to seek treatment, early!!  We need the same opens with Dementia and Communities like Azalea Trace are the place for this opens to begin.  But, even a great Community like Azalea Trace and a great organization like ACTS cannot effect change until us, the Dementia patients, openly discuss our condition and seek treatment early instead of later!

I challenge  Dementia patients, Spouses, and Families to encourage each other to come out of the closet and openly discuss this disease.  This opens will facilitate better treatment and better care for our loved ones.  The ball is in OUR court!

P.S.  I have been open about my disease from the beginning.  I have resisted the nay sayers and the stigma of having Dementia.  I have made decisions that, while difficult, will give me control of my future and relieve my wife of having to make decisions when I am so bad that no one will take me!  I retired because I could no longer do my job, even though my employer was ready to make extraordinary conditions to keep me employed.  While I appreciated their loyalty and respect, I knew it was not fair to my fellow employees fro me to get special consideration.  I have always lead by example.  I wrote this post to ask the Dementia Community to join me in bringing our disease, be it Alzheimer's, Lewy Body Dementia, Frontal Lobe Dementia, or other Dementia, to the forefront!  It is to our benefit to do so and we hurt our future care if we fail.

Saturday, March 26, 2016

What is really important?

Those of us who have Lewy Body Dementia are living with a death sentence.  But, truly, everyone knows they are going to die, someday.   So, the question really is, what IS important?

People talk about "Bucket Lists".  But experiences, like money, mean nothing eternity.  However, how you treat the ones you love, the things you taught your children, grandchildren, the moral truths you leave them, IS the thing of value you leave behind.

I have made numerous mistakes, committed too many Sins to count, and have hurt the feelings of too many people I love and respect.  My goal for the remainder of the days God gives me is to leave a lasting memory that encourages those who know me to live a moral, God honoring life.

Just because I have failed in the past does not mean I have to continue to fail.  And no trip to somewhere will not leave a lasting impression of God's love on the hearts of those I love.  Yes, I want to see my friends and family, everything I can!!  And truthfully, I do not see them enough!  But going to see something or do something, when I can go see a friend or relative, is out of the question.   I will fill my bucket with the love of good friends and family.

During my recent downturn, I have seen more clearly, how I must spend the remainder of my life.  As for me and my house, we will serve the Lord.

Thursday, March 24, 2016

Operating a Half Power

We went to the dog groomers today and then spent two hours at our Son and Daughter-in-Law's home.  It was a great visit, but I noticed I was less engaged in the conversation and I felt overwhelmed and disconnected.   commented to my Wife when we got in the car that I felt like I was operating at half power!

That is a very accurate description of my mental ability.  I am like a light bulb during a "Brown Out".  Not as bright, weak, and flickering.  I cannot keep up with a conversation between three or more adults and I find myself interrupting the conversation asking who they are talking about.

I have commented recently about the recent, rapid, progression of my disease.  I also have seen an increase in my instability and the dizziness.  The bottom line is, my experience with LBD is getting more intense and deeper.

Still, I seem to find a way to deal with this disease and move ahead.  My Wife remains positive and thankful for the good time we have had, and so do I.  But, we both know the future is much darker than the past.  But, God will help us through these difficult times.  Times like these are when Faith grows and strengthens, EXPONENTIALLY!!

As always, I will report things as they occur, in the most honest manner I can.

Monday, March 21, 2016

It IS time for me to move to assisted living.

Regardless of the positive effects of the increased dosage of nortriptolene at night, I am increasingly unable to positively deal with things that aggravate me.  For instance,  today my wife washed some dark clothes and left a kleenex in a pocket.  There was shredded kleenex every where in the wash!!  Since I took the clothes out of the wash and placed them in the dryer, I had to deal with the residue.  She came to help, which the required me to get the vacuum cleaner out!  I was perturbed to say the least.

Then, the television has had a constant drone of politics on it, all day!!  I have explained at length that politics, replayed over and over again, with the same inane questions and answers makes me crazy!!  Of course, then, she has to ask me questions or make statements about what is being said.  I will say it one more time.  It matter not who America elects.  Te same results come out of it.  It is like eating fresh organically grown vegetables and grass fed beef.  It still comes out as shit!!  That is my view of politics and I do not want to be beat over the head with it.  In case anyone does not know it, I have given up on America and the World!!

Sunday, March 20, 2016

New medicine update and other issues

Well, it has been a couple of weeks and my Wife believes the increase in my nightly dose of Nortriptolene is helping me.   I still feel the anger and agitation sometimes, but it is less intense.  The one benefit I see is I go to sleep, immediately!   As soon as I get situated in the bed, I am gone!  So, if I am happy with the results in that I sleep better and my Wife believes I am easier to live with at night.

I still see the LBD progressing and getting worse.  I am having problems, sometime, making complete sentences and sentences that make sense.  I also have great difficulty finding the correct word to describe something.  The noun name of things becomes a long description to my Wife and she has to cypher out what word I am looking for.  For instance, when I am writing these posts, I have to ask my Wife; "what the thing is that does whatever is called."  She is good at deciphering my encrypted question and gives me the correct word.  So, the word issue is much less frustrating than the inability to make sensible, complete sentences is.  However, before the sentence construction issue arose, finding words was the biggest issue.  So, things change, and for the worse.

I have found that even small groups of people wear me out.  I used to be a very outgoing individual.  An EXTROVERT!  I actually gained energy from a crowd and I enjoyed working the crowd.  of course, back then, I had a wonderful memory!  I remember every one's name, what they did, their families names, and any other important issued about any individual I met.  Now, memory is a fleeting memory!!

Even writing these posts is becoming difficult for me.  Stringing my thoughts together is nearly impossible.  If I start to write one and a new thought pops into my mind, I either loose the thought I was writing about or the new one!  I guess I will never write my novel!!

Well, more later.  If I remember.

Thursday, March 17, 2016

What do I do when drugs do not help my depression, anger, and agitation?

I wrote a while ago about the Neurologist increasing my night time Nortriptolene to help me deal with my Sundowning.  The first couple of nights, it helped.  But now, a couple of weeks into the increase, I am as bad or even worse than I was.  Nights are absolute horrors for me and I expect even worse for my wife!  I am beside myself because I do not know which way to turn and I have no one to talk too.  As I write this, I have rear in my eyes.

This disease is winning.  And I am at a loss to find a way to fight back.

Tuesday, March 15, 2016

The Memory Center

If you live in Virginia and you have a loved one, or you, need Memory care, the Memory Center in Virginia Beach and Richmond look like great places.  I emailed them today, and I received a return phone call before my email stopped vibrating on Kathryn's screen in Virginia Beach!!

She was very informed on Dementia, cared about me, or she is a GREAT actor, and even gave me her personal cell number.

No, I do not work for them and they do not pay me!!  But, I do know a good thing when I see it.  The Memory Center uses the newest research to provide a home for those of us who have Dementia.  A facility that looks like a town, with residences in neighborhoods, segregated by cognitive ability.

The are sending me information and I intend to visit this place this summer!  For me, to live in a place dedicated solely, to my well being, security, and comfort, as a Dementia patient, is worth just about any amount of money.

I will keep you informed.  But, if you live in Virginia Breach or Richmond, go check these places out and let me know what you think!!   I would be grateful for your insight! 

Being Comfortable With my Own Kind!

I have noticed that I feel much more at ease when I am with other Dementia patients. There is a lady here at Azalea that has Frontal Lobe Dementia.  She is also still able to live independently, with help from her Sister's visits.  She and I run into each other in the hallways and when we discuss our issues, I feel myself relax.  I know, when I am talking with her, that I do not have to try to be "normal".

I have described this before in posts that I said I feel more at ease in a Memory Support facility.   But, this is even more comforting.  Being with another person dealing with the same cognitive issues takes away the stigma of having Dementia!   Yes, we do feel different, diminished, and out of place when we are with people that have fully functioning brains!

We discuss the issues of our Dementias and find we have many of the same issues.  Then, we describe what remedy has worked and which ones have not.  For instance, she has the same leg issues I have!  And, this week her Neurologist has her starting Physical Therapy.  I was able to tell her about the folks here at Azelea Trace that provide the PT.  That set her mind at ease!

Beings with people that have Dementia sets up a support group!  That is what we need and what is lacking in every program I have looked at except one.  That being the Memory Support Center in Virginia Beach, Virginia.  It is a new facility, dedicated to caring for Dementia patients, only!  They house their residents in communities based on their cognitive abilities!  The entire facility is played out like a town, with a main street with shops, restaurants and coffee shops that actually are open and working.  You actually can get a Frapochino at the Coffee Shop or a Beer at the Tavern!!   I truly would love to live there.

In anycase, I have one person that understands my journey.

Wednesday, March 9, 2016

Memory as it applies to Pool

I play Pool, 8 Ball, every Wednesday and Sunday night.  I am like many people in that I have good and bad days.  But, what gives me fits is I can make a number of difficult shots and then forget how to make the simplest shot the next time it is my turn.

The truth is, I cannot remember how I made the last good shot, no matter how hard I try.  And the harder I try the worse it gets.  I accredit this to LBD since I used to be able to remember simple things!

I know it frustrates the men who are unfortunate to be my partner.  And most of them deny that I have LBD!   So, I never mention it anymore.

Sometimes I would like to quit playing Pool, but, it is the only activity I participate in here.  And, I enjoy the fellowship.  But not being able to be even moderately consistent is frustrating.

More leg pain

The leg pain I have described before is now from just below my waist to my toes on both legs.  It ebbs and flows all day and increases in intensity in the evening.  By the time I go to bed, I am experiencing involuntary movement of my legs.

Again, this pain is due to LBD and the fact that as I describe it; "The push and pull muscles are fighting each other."  And boy are they!

I have an extreme dislike for any pain medicine, over the counter or prescription.  I talk more than enough pills now.  But, if this pain gets any worse, I will be forced to take something, just to get to sleep at night.

It is interesting that the pain subsides considerably when I am walking.  I guess the "Push and Pull" muscles are doing what the are designed to do, and therefore the pain is not there.  Makes sense.

Tuesday, March 8, 2016

Another funny thought!

Our son is on the road for work and called me to tell me about his rental car, as is our custom.  He has a Toyota Sequoia!  He likes it and I have always liked the Sequoia,  It is a tank!!  So, I got on line and built one.  Equipped the way I would want one, it would cost $65K.  Heck, I thought, I could buy a Toyota Land Cruiser for that and they last FOREVER!

Then I thought, The Land Cruiser lasts for a minimum of 20 years!!  I will NEVER get to the half life before I die!!  It wold be a waste of money!!

Having a terminal disease helps one spend their money very wisely!  No more skivvies to purchase and now, no new cars.  Heck, I am getting rich!!  Our money will last forever!

I always look on the bright side!

Monday, March 7, 2016

Who am I?!

We walked over to the main lobby tonight, to drop off our monthly fee and some books at the Library.  Walking back, I told my wife, I no longer know who I am.  It is true, I feel as though the person inside of me is not me.   The emotions I have are strange to me.   I look at things that I know should be familiar, but they seem different.

I really cannot explain this feeling.  I can only describe it.  The one thing I do know is that LBD is the cause and my journey with LBD is progressing, faster than before.

I wish I had someone to discuss this with.  But, there is no one that has a point of reference.  Only outsiders.  This is where the loneliness of LBD comes from.  Another truth I finally understand.

Tuesday, March 1, 2016

A funny thought!

It is interesting how some things illuminate where I am in my Life's journey.  Now, I know that I do not know when I will pass from this life to Heaven.  Only God knows that.  But, things show me the futility of life and the things we hold so dear.  Things that we will leave behind and have NO value to us, at all!

Tuesdays, I wash the towels, sheets, and underwear while my wife is ate her BSF Leaders meeting.  It is a form of multi-tasking.  In any case, I was folding my Skivvies and I realized, I will NEVER have to purchase any Skivvies again!!  Now, that seems like a strange thought to enter my mind and I certainly did not put that thought in my mind on purpose.  But there it was, big as day.  I will never run out of skivvies!!

I also realize, overtime I get in the passenger's side of our 2015 Subaru  Outback, that I will never purchase another car!  I love cars!!  We have bought somewhere around 20 in our 43 years of marriage!  But, this vehicle, is my last.  Maybe because it will last 20+ years!!

We spend all of our lives accumulating THINGS!  Things that break, rust, go out of style, become obsolete, or we out grow.  Things that we spend our hard earned money on.  Money that we spent our Limited time on earth making.  Time that we could have spent with our families, teaching our children God's word, helping the sick, comforting the grieving, and witnessing to the lost.

I am afraid I have spent the vast majority of my life on things that will mean nothing after I am dead.  All I can do, is work for God now, everyone HE gives me the opportunity.  And that is my vow!

Reduced mental connection to the world around me

Lately, I have experienced a reduced mental connection to everything around me.  People, the environment, television, and everything else.  I am in a fog, far away, and disconnected from what is going on around me.  Furthermore, I am not interested in those things.

Instead, I think about the Navy, about my experiences and even have day dreams about things that did not happen.   It is as if I was transported back into the Navy, in uniform, and on a ship, working as a Gunner's Mate.  Those day dreams are very pleasant to me.

It is interesting to me to see how my mind is taking me to a time when I was more in charge of my environment and my physical and mental being.  A time of professionalism and self-confidence.

It seems I am slipping the bounds of reality and moving into a more comfortable time of my memory.  No issue.  Just a report.