Tuesday, April 28, 2015

I just figured it OUT!!

This morning, like I do every Tuesday morning, I attended a 6AM Men's prayer group at my Church.  16 men meet to pray for each other others, and the Church.  We also have a discussion time.  One of our member's relatives is dealing with Alcoholism.   That individual is in a treatment program and doing well.  Praise God!!

But, we discussed how individuals with addictions have problems staying away from the things they are addicted too.  One important issues is for them to find a totally new friend group.  When I drank, all my friends drank.  Now, none of my friends drink.

Many folks with addictions turn to the Lord for help and salvation.  They go to Church and are shunned!  Why, because they look, act, talk, different.  They were not raised up in the Church so they don't know memory verses, hymns, praise songs, or where John 3: 16 is in the Bible!  So, the regular Church gores shun them and those seeking help from the Church and God's people leave the ONE place they need to be.

I have commented before on my issues with people telling me I am not sick, I do not have dementia, I look and act perfectly fine, and on and on.  They are doing that for the same reason Church people shun addicts!   They don't want to be around them.

Maybe those who do not have an issue don't want to catch an issue from us.  Cancer is OK, they know you can't catch that, even from a toilet seat!  But, maybe they can catch dementia!  Or alcoholism!!  After all, those diseases are dirty!!  People with dementia soil their under ware don't they.  We can't be around people like that.

But, as ling as the "Washed" ones deny I have dementia, they can be around me, at a distance.  And tat is ho people treat me, from distance!  If I hide my disease, I am being dishonest and not transparent!  I thought, as a Christian, honesty was the only way to be.  Evidently, not so.

Even here in Azalea, I feel a coldness from folks that I have told about my disease.  Yet, we see and talk to a number of folks that have early signs of dementia.  Trust me, if you have dementia or you are the spouse of someone with dementia, you can see the signs.  But, if they deny it,they are OK!  So, they lie to themselves or others, and they are accepted.

I once told you I felt very much at home in a Memory Support facility we looked at before we moved to Azalea.  I really think I should have insisted I move there, either then!!  That was the most comfortable and accepted I felt in a long time.  Why, because I was with my kind!

SO, no I understand why I am treated the way I am.  I figured it out!!

Monday, April 20, 2015

How do I hang on?

Those of you who knew me before I came to the saving knowledge of Jesus Christ knew me as a wild man.  But, Jesus changed me a through the power of the Holy Spirit.  I am a totally different person and because of that, I am secure in my life and my eternity.

LBD has effected me.  The effects of LBD caused me to retire earlier than we had planned.  It also caused my wife to retire 5 years earlier than she planned.  LBD also lead to a completely unplanned, unexpected move to Florida to be close to our son and his family.

While all of these changes were unexpected, but they worked out to n\be positives.  Just like God planned!  You see, God is never surprised and never runs into unexpected circumstances, even though we do!  And while we had to leave our home Church and all our friends in Virginia, we have grown personally and spiritually here in Florida.

These thought came to me while I was sitting in my power lift chair, listening to George Jones and Vestil Goodman sing country gospel music, petting my oldest poodle.  If God can care enough about an old drunk like George Jones. Enough to lead him to salvation, we all have the opportunity to seek salvation.  God changed me and leads me through the life's challenges, you too can have this surety of eternal life.

Tomorrow, I will stand in for the Azalea Trace Chaplain and lead the weekly Tuesday Chapel Service.  Many of the attendees are wheel chair bound, have dementia, or have other debilitating, life threatening diseases, yet they seek the comfort Jesus and depend on God for everything in their lives.  That alone, gives me peace.

So, how do I hang on to happiness and peace dealing with LBD.  I depend on God, for everything.  It has worked for me and I know it will work for you.  Seek ye FIRST, the kingdom of God, and all these things will be added to you!

Sunday, April 19, 2015

When is the last time you were intimate with your Dementia mate?

This is an important question from the point of the LBD patient.  I see couples holding hands. hugging, kissing, and having their arm around each other.  I see wives rubbing their husband's necks and twirling their hair.  These are acts of intimacy between a husband and wife that express love, sexual acceptance, and an intimate connection that we need, no matter our age to medical condition.

But, I have observed that the opposite is true.  Why?  Well, first of all, those of us with LBD and other dementia's loose our sexual function due to the disease.  Our mates then think that loss of sexual function displays our dislike for intimate contact.  Nothing could be farther from the truth.

I need, cry out for, and deeply desire intimate contact from my wife.  It brings back fond memories of when I was young and healthy.  Many times, I find myself thinking; "I need to have sex with my wife."  Of course, the realities of the disease prevent this.  But, the intimacy that leads up to that act is still needed and wanted.

Dementia of any type is a lonely disease.  You are trapped inside your mind, in another time zone.  Many times, old friends and family avoid you.  Visits, invitations, and telephone calls become few and far between.  Even your spouse struggles to find ways to communicate with you.  I can see that.  On the outside, I am not the same man I was before LBD.  But, inside, I am the same man with all the same needs.  The real problem is, how do I communicate that to her?  Trust me, it is more difficult than you might imagine.  So, I fall deeper into my internal dementia time zone.  Having this disease has permitted me to finally understand why my Father in Law acted the way he did.  The big difference is, I now have a point of reference for him and me, and I can communicate these emotions with others.  My hope is, others will learn and add to this knowledge to actually help LBD patients and caregivers.

I deeply miss those days of loving intimacy.  If you are the spouse of a LBD or other Dementia patient, take heed.

Wednesday, April 15, 2015

I feel lost, distant, and disconnected

I have recently written that my experience with LBD has moved further down the road.  That is even more apparent to me now.  The last couple of days, I have felt lost and isolated.  Things seem far away and I am disconnected from the here and now.  This is dementia!  Now I understand where my Father in Law was, so many tears ago when he suffered with Alzheimer's.  No one knew how to help him then, and there were no drugs like Namenda and Arecept.  They just tied him i his chair to prevent him from wandering.

Much has changed, yet much has not.  I can still function in our apartment.  But, I am not here, I am somewhere else.  I recognize my wife and I still interact with people.  But that is a chore for me now.  I once was very out going.  Now, I would much rather be insulated in the cocoon of my mental world.

This is dementia, finally coming into full bloom.  I think it will be comfortable for me.

Tuesday, April 14, 2015

Why do we live at Azalea Trace?

Today, we had a water leak.  We noticed it when we got up from our afternoon nap.  It was after normal working hours, so I called the maintenance number.  In a matter of minutes, Security was in our apartment doing an assessment of the situation.   After determining that the leak was a condensate drain issue Security called in the duty maintenance man and he was here in less than 20 minutes!

Mean while, Security showed up with a shop vacuum and began cleaning up the water!  Our Security folks are wonderful people that are our life lines.  If someone signals a medical emergency,  Security is there.  If there is an after hours maintenance issue, Security personnel do the preliminary troubleshooting.  Many times they solve the issue, immediately.  Even if your car has a dead battery, Security comes to the rescue.  All of this, while making security rounds, throughout the community.  Again, they are our life lines!!

Back to the leak.  The maintenance man, Mark, discovered the problem in less that 15 minutes and had it repaired in less that 30 minutes.  Then, he and the Security person tested to make sure the condensate drain was working correctly and cleaned up after themselves.

Why do we choose to live in a Continuing Care Retirement Community like Azalea Trace?  Because Continuing Care not only means all the medical possibilities are covered and provided for, but the emergencies and daily maintenance issues are dealt with.  If we owned a home, we might still be waiting for a plumber or AC&R technician.  Or, I could crawl up in the attic and try to find the issue. Oh, wait, I am not allowed on ladders anymore.

Today just cemented in my mind that we did the right thing.  Thanks Azalea!

Friday, April 10, 2015

An issue solved, that I caused!

If you do not read my Navy bolt, you do not know that I was having some minor, but irritating, issues with our CCRC.  Now, this is a beautiful place to live and as it turned out, I was probably a major part of the issues.  So, I learned a few things today and I wanted to copy the final post a bout these issues on my LBD blog as well.

As those of you know, I have been experiencing anger and agitate issues ad I have progressed down the LBD road.  This was very apparent as this situation played out.  So, here is that post for your info;

We had our meeting with the Executive Director of Azalea Trace this afternoon.  I must admit, he was a very congenial and honest person.  He explained some events that lead up to him and us not meeting or forging a relationship and I agreed with him on those points.

Right up front, we both agreed that if we had started out on the right foot, this disagreement would not have happened because we would have had an open line of communications.  We have now established that circuit.

That being said, he completely answered my issues concerning the parking lot issues.  We did differ on the treatment of certain members of our community.   But, it is OK to have different opinions.  The bottom line her is, I honestly believe the parking issues will be solved, to the betterment of the community, very soon.  The truth is, based on our written question, the ED was already working on the solution.  I did encourage him to publicize the actions from the Resident Meetings on the Community Cable Channel or an email to the residents.  This would help at least me, if not most of the residents keep informed.  Waiting a month for an update seems sort of secretive.  Especially when he and his staff are actually solving the issue in a timely manner.  Why NOT take credit for your good work.   Open, frequent, informative, communications serve to beat down rumors and soothe bruised egos.

Our refrigerator issue was a little different.  It seems I did not hear the entirety of the first offer from the ED to solve our problem.  This is where I learned something today.  I either did not hear what Ginger told me or I confused what she said with my own view.  Either way, it is entirely possible that I caused the misunderstanding and I am very sorry about that.  In any case, he was very understanding and helpful concerning our refrigerator issue.  He even came to our apartment to see the problem  and after seeing it, he commented;  That would be very annoying."  In any case, we will be able to remedy this problem too.

If you read my Lewy Body Dementia blog, you know I have been having anger and agitation issues.  In his defense, the ED did not know this or even that I had LBD.  That relates back to our not meeting in the beginning.   So, another thing I learned today is, from now on, Linda will have to take the lead on these issues.   My brain can no longer logically look at issues without interjecting the emotion of the moment into the mix.   To keep peace in the community and our life, it makes sense for me to completely remove myself from these negotiations.

This has turned out to be a very draining and upsetting situation that I most likely caused.  I probably caused Ginger and her boss, Dave, more problems than I am worth.   Not to to mention the indigestion I caused the ED.  But, we are all on the same sheet of music and I learned a few things.  So, it was not a total loss.

Now, I think I will just sit down and shut up.  Good night.

Thursday, April 9, 2015

I have something to say!

Yes, I have something to tell each of you that I know you do not want to hear.  But, it is part of dealing with my journey with Lewy Body Dementia.

I had a neurologist in Virginia that asked me; "Have you dealt with your disease yet?"  I quickly replied; "Yes!"  She quickly replied; "Bullshit!  No you haven't!"  She was right.  Now, four years later, and much farther down the road called Lewy Body Dementia, that question came back into my mind during this recent grumpy, agitated, angry, phase.  While alone with myself, arguing with my disease, it came to me;  "I am going to die!"  OK, someone pick my Son up and revive him!  He is still in denial and that statement probably sent him to the deck!  But, it is true.

Since Linda and I have seen my disease progress over the last couple months, I have more and more, realized this disease, LBD, will lead to my death.  Now, that is somewhat of a surprise seeing that I always thought I would die in a blaze of glory in a gun mount on a ship!  We all know that did not happen.

But, Psalm 139 tells us; All the days of my life were written in God's book before we were formed in our mother's womb.  So, God is not surprised about anything including our death!  My Dad, who was not a religious man at all, used to say;  "On the back of your Birth Certificate is you Death Certificate, all filled out, in invisible ink!"

So, relating to Dr. Fuentes in Virginia, Yes, I now have fully dealt with the reality of my disease.  I realize it will lead to my death, sooner than later.  I realize I am further down the road that I was four years ago.  And I realize, that my death will happen.  When, I cannot say.  Remember, it is written in invisible ink!  Goof thing God can read invisible ink!

Wednesday, April 8, 2015

Grumpy, agitated, and angry!

 I wrote a post on the Navy blog that related customer service to command climate and it all related to my perception of how we are being treated here at Azalea Trace.  Now, don't get me wrong.  This is a good place to be.  But, even a little but under a big horses saddle causes issues.  And, those little things, combined with how I am doing in the LBD journey are making me very difficult to be around.  Then, add the fact that I have a cold, and I probably should be confined in solitary confinement.

That being said, it is becoming harder and harder to be congenial to anyone.  Of course, I reserve all my energy to be kind and loving to my Wife.  She has earned that And I intend to treat her with love, respect, and honor, until my last breath!  However, other people might want to give me a wide berth.  Mostly that is not an issue, since no one ever visits us anyway.  However, my Sister is planning a visit towards the end of the month, so I hope I am doing better by then.  No promises!

For instance, I only got about two hours of sleep last nigh because of this cold.  We decided to take a nap, but the dogs had other ideas.  They wanted out, walked, fed, petted, and now I am here, in my chair, writing to keep my sanity, while my wife blissfully sleeps.  I am glad for her since she is showing signs of this cold too.  I just wish I was sleeping too.  And that, angers me, as you might imagine.

Would that have been an issue before LBD and all the issues that accompany that disease.  Probably, but I would not be ready to punch someone in the nose for walking past our apartment holding a conversation at 1000 decibels!!!!!  Jerks!!

 I could say this too will pass.  But I know it won't.  This is the new normal and I pity my wife because of it.  She spent the first half of our marriage with me being a grumpy, impatient, loud, obnoxious, jerk.  Then, because of God, I calmed down,  And, for the past 10 years or so, I have been pretty calm and gentle.  That period of quiet seems t be done.

I don't even watch the news anymore because I get so upset over the treason that is going on in our government!   But, I have come to the realization that I cannot do anything about it.  So, I try to ignore it.  So far, so good, I think!

Grumpy, agitated and angry have been a theme for a number of posts.  But, it is where I am right now and I pledged to write the truth.  There it is.  The unvarnished truth.

And the truth is, these two blogs are the one outlet I have for my anger and agitation.  I am glad I have them.

Monday, April 6, 2015

I am worse that I seem

When someone asks me how I am doing, I normally say;  I am as well as I can be.  That, of course, is a lie!  But, I understand most folks do not want for know how I really am.  First of all, it would take me 15 minutes to give them an update.  Second, "How are you doing?" is a question that really does not beg an answer.  It is the same as "Hi or Good Morning"  Third, people in general are just not that interested in how anyone but themselves, are doing!  So, people with long term diseases lie!

But, the truth is, I am doing worse than ever with now expectation of doing any better.  Tonight, while we were picking up our dinner, I got extremely agitated and angry.  As we walked back to our apartment I told my wife I did not see any improvement from the Namenda XR experiment.  For the first time, she agreed!   Now, Linda has steadfast hung on to he belief that I was getting better since I was taken off Namenda XR and placed back on Namenda, twice a day.  Now, she admits I did not rebound and as I thought, She agrees I will not.

So, as I wrote a while back, this is the new normal.  And, it is not a pretty new normal.  But, it is the reality of Lewy Body Dementia.  And we have had a long run of drugs working and me slowly progressing.  Now, she has a grouch, stuck in his past, with a short fuze anger, to deal with!  I pity her.  Add to the anger and agitation my leg pain and instability issues and we see the future picture.

I really cannot tell most folks the truth.  Why?  Some say, you don't look sick, or you look like you are doing well.  Or other statements of doubt or ,ore directly, calling me a liar.  I ask you, since I do not want or solicit sympathy, why would I lie about having this disease?  Why would  have limited my income potential?  Why would I take a big tax hit to move into a continuing care retirement community that does not eve offer assigned parking?  And why haven't I punched someone in the nose because I am so angry.

No, I only tell my closest friends the truth.  I may never change that policy.   But, the time may come when I can no longer maintain my facade.