Sunday, June 29, 2014

Why do I live in a house in Florida?!

If you have followed my unfortunate move to Florida, you may remember my fight with swarms of termites!!  The little monsters are everywhere each year around Mother's Day!  Seems fitting since I live her because my wife wants to be near the Grand kids.  The first two years, the winter was warm, and we had MILLIONS of termites swarming.  In the house, in the garage, coming out of the vents, the sewer vents, everywhere.  I had damage in the walls where I saw, and killed, live termites coming out of the dry wall.

This year, because we had an exceptionally cold winter, we had very little swarming.  So, I thought, good!  Then, my wife asked to look at a molding in the bathroom yesterday.  It is completely eaten by termites!!!

So, here I sit, trying to control my rage, frustration, and overwhelming desire to sell this house.  But, because of my respect for my wife and her emotions, I keep my issues to myself.

I know many people, right on our street, deal with termite issues.   But, they deal with their issues with an unencumbered mind.  I feel the bugs are actually out to get me!!  I will call our bug contractor tomorrow and he will make things right.  But, I will now forever feel violated by these Formosan aliens that want to eat MY home!!

I hate everything about Florida.  The area, the people, the bugs, snakes, frogs toads, hurricanes, torrential rains, floods, did I mention the unfriendly people!!   Yes, there is no income tax, but you pay for that with the unfriendly people!!

I am overwhelmed, alone, and empty.  

Wednesday, June 25, 2014

As long as I am venting.....

There are many well meaning people in my life.  They say;  If you need anything, I will be there.  Or; If you need help, just ask.  Or, how about this?  Have a room ready, we will visit often.  We have had four visitors since we moved to Florida.  My Sister, our best friends, my active duty Navy friend and his new wife, and a lady and her husband that worked with my wife.  Only two stayed overnight.  Now, before I complain, I realize everyone has their own life.  Their own family, their own things to do.  Plus, they work and have careers, have a home to maintain, kids to deal with, and all the stresses of normal living.  Doing things for me falls low on their list and I understand.  No problem!

Recently, I had a post on the Lewy Body Dementia social media site, making my case for living close to my friends.   Someone replied in a mean manner, that my friends would not "toilet" me!  Well, neither will my family!  They have a life and responsibilities of their own too.  But at least I will be around people that know me and I have things in common with!!  I don't need care, I need companionship!  And that does not exist here in the panhandle of Florida!!

I enjoy writing this blog and my Navy blog.  But neither replaces sitting down with an old shipmate, drinking a beer, and telling sea stories!!  And as far as family goes, well, my sister visited.  My son and daughter in law have two very active teenagers to keep up with.  My son travels for his job and is seldom home and when he is, there are home responsibilities.  I understand, I was in his shoes, 40 years ago.  The bottom line is, I need friends to be with.

Can I change this.  No!  Not now.  We are waiting for the Armed Forces Retirement Home in Gulf Port Mississippi and that would fulfill my shipmate need, in that there are plant of retired Navy folks there.  Someone must have served on a Destroyer!  But, for me to ask my wife to move away from our son and his family would be selfish and inconsiderate!!  I moved her too many times.  Now IS her time!!

So, I will do my best to wait, as hard as that is for me.  Yes, I will continue to complain.  I need to vent!

Future? What future?!

I have been married for 41 years.  Much of that time, we made little money.   After I made Senior Chief, our finances started to look up.  Now, because of my many deployments, my wife has always ran our day to day finances.  She still does, even in retirement.  Why, because she is the best budget manager in the world!  I owe our credit rating, our economic accomplishments, and our financial security to my wife's magnificent financial management.  My part of our financial plan has been the long term decisions.  Early in our marriage, I had little to do. Later, I made some good decisions that made us good interest on our savings.   Because of her day to day management and my long term planning, we have a good retirement.

But now, I see no future!  When we are told to "Wait" for admission to the ONE acceptable Continuing Care Retirement Community in the Pensacola area, I have great difficulty waiting.  I have issues that no one understands or even know about.  Why?  Because they do not look at life from the same prospective that I do.  It is IMPOSSIBLE for anyone that does not have LBD, to understand how anything impacts me.

Early in my journey, my wife angrily told me that this disease was not just about me!  Well, yes it is!!  I will admit that the way the disease impacts me has an impact on her.  But, I am the one that has these issues.  She still has a future.  It may be without me, but she still has a future and a good one.  Me, not so much.  And any future I do have will be with severe limitations.  I already cannot drive alone.  I am a quasi prisoner in my own home.  I can't even go get a haircut without an escort!!  I used to go around the world on Navy ships and go on liberty in places most of you would never think of going!  Now, I need a baby sitter.  Yes, it IS about me!!

I need to move into a community that I can have some movement in.  A place that has recreational facilities, a library, a coffee lounge, a barber shop.  A place where the people recognize me and can make sure I don't go too far.  I need some freedom, with limits, I understand, but some freedom.  That place is a long way off if at all.

So, when someone tells me to wait, that will happen in the future.  Maybe 6 months from now.  My reply, always silent, is what future?  I just don't see it.

P.S.  I said my reply to statements to the future is always silent.  This forum is my only outlet of frustration and pain.  My personal goal is to isolate my wife from as much of the frustration of LBD as I can.  I read on the web site about caregivers dealing with verbal and even physical abuse form their loved ones.  I never want to be abusive to her in any way.  So, as long as I am able, I will keep my emotions inside.  She has enough to worry about.  Now, I do tell her about my issues and frustrations in a soft and gentle way.  Maybe that prevents her from really understanding how these issues effect me.  This truly is a difficult thing to manage.

Friday, June 20, 2014

Evening anger, over and over again

Tonight, like every evening, I sit her, absolutely angry, grumpy, overwhelmed, and pissed off.  Everything grates on me.  Noise, commercials, the dogs antics, my wife's chatter, the news, the telephone ringing, the door bell, everything!!

Every night is like this!!  Like, right this minute, there is a commercial on the television with a man YELLING!!  It sends me through the roof.

Now, I can still control my yelling and screaming.  But, more and more, I have problems even being civil to my wife at night.  She understands, but that does not make it easier on me!  I do try very hard not to yell because it causes her issues and I want to be respectful of her emotions.  Just because I have issues does not mean I should make her miserable.

My question is;  What is bothering me that makes me so angry at night.  Yes, I understand the concept of "Sun Downing".  But, there has to be more to it than the sun going down.

Tonight, and the last few nights, I have had overwhelming thoughts of my own death.  Now, death has not bothered me for decades.  I was a career Gunner's Mate in the Navy and a Gunner's Mater Tech Rep as a civilian for a while.  In that profession, you deal with the continuous proposition of death because of gun mounts blowing up, mechanical equipment killing you, electrocution, explosions of ammunition, and the normal dangers of going to sea on a combat vessel.

Yet, I see my LBD progressing from inside my being, and I know this will lead to my "going home".  Again, I am not afraid of death.  I am a born again believer and servant of the King of Kings and the Lord of Lords.  Jesus paid the price for me to enter Heaven.  Yet, my own death has been a constant companion for the last few days.

It could be the serious medical issues my Pastor friend and mentor in Virginia Beach has been going through that has my thoughts on this topic.  I am not sure.  But, the thought is in my mind in any case.

LBD is a lonely disease for me.  I suffer it in silence, alone, enduring the diminished menial capability that others do not notice.  Or, they say;  You look find.  I would not know you have LBD!  Then there is the recent increase in instability.  But, most don't notice.  Yet, I do, and it is constantly on my mind.  I forget words, things I wanted to remember to do, even where I am at times!!  Yet, I suffer alone.

Naps help.  I go to sleep early when I am so grumpy that I am bad company for my wife.  I mental fight the urge to scream at the thing that frustrate me.  But, the fight is alone.

So, every night I deal with my anger, frustration, and even depression.  No wonder I don't like evenings.  

Wednesday, June 18, 2014

The benefit of this blog, to me, and YOU, I pray

I had an appointment with my Psychologist this week.  Meeting with him is something I desperately need because it gives me a safe place to express why I feel and experience as I travel down the pond road of Lewy Body Dementia.  He and I can openly discuss anything that I need too.  He is a God send for me.

This Blog serves the same purpose!  Most of you do not know me, so I can write about any topic.  This anonymity protects my privacy, just as Doctor Patient privilege protects me with my Psychologist.  You profit because I write about topics that I would not openly discuss if you knew me.

Now, yes, some of you do know who I am.  You are best my friends and family.  But, you need to know about my journey also.  I trust you will not be embarrassed when I describe personal issues that are impacted by LBD.

There are numerous things that LBD impacts that most of you would never believe.  I have written about my occasional loss of bowel control and urinary control.   I have written about how REM Sleep disorder has caused me to punch my wife drink violent dreams.  I have written about my bodies inability to control m body temperature.  I have also written about my anger and rage issues.   But, I have never written about sexual dysfunction!

Yes, sexual ability is also impacted by LBD!   I never realized this, even though it is on the list of symptoms on the site.  Why? I guess I psychologically skip those words! No man wants to face the fact that he may not be able to perform sexually!  Men brag about the sexual capabilities.  Thy even embellish their sexual abilities.  Yes, I know that surprises some of you!  Right!!

But loss of sexual ability does cause depression and even anger.  Drugs do not work.  Why, because it is an issue caused in the brain, based on the effect of the Lewy Bodies effecting the brain.  This elite plaques that make portions of the brain fail.  Just like the part of my brain that no longer works to stop me from acting out my dreams when I sleep.  This tangles now have clogged the part o my brain that causes an erection.

Now, the effect is "on and off" right now.  Some days, I can perform and those are good days.  Most days, I cannot.  But that is the truth of LBD.  Some days are good days, yet, now, most are not.

So, we will continue this conversation.  Discussing issue cause by those plaques in my brain, and in the brain of your loved one.  Their problems, my problems, are not their fault.  They do not cause them.  Nor can they control them.  But, openly discussing these issues helps me deal with them, and I hope, helps you understand your loved one.

Thanks for being there.  I need each of you.

Monday, June 16, 2014

Doing things causes me issues.

That's right!  Anything out of my routine causes me stress, tension, anger, physical pain, mental anguish, and depression.   If I planned to mow the lawn and I get diverted to an outing, my route is disrupted and I suffer from that disruption.  It is not the fault of the person who offered the change in my routine and it is not my fault.  It is an effect of LBD on my brain.

Right now, I can "Spotlight" and act happy, interested, normal, and even excited.  But when I get home, my neck hurts, I have a headache, I am agitated, angry, and completely out of sorts.  Soon, I will not be able to play the part of the happy camper and things will get worse.

My poor wife suffers the most because she has to be with my 24/7.  She has to watch me get angry and melt down.  I try not to, but I cannot control myself.  She is an amazing woman and I love her dearly.

I can only hope we will get into our Continuing Care Retirement Community soon.  There, I will be insulated from the outside world.  There, I can hide in familiar surroundings, safe from the disruptions that cause me this discomfort.

But for now, I can only wait.

Friday, June 13, 2014

What value is an early diagnosis of Lewy Bdy Dementia?

Based on some of your comments, your answer for me might be; A longer time to complain!  And you may be right.  But, I did say I would write about all of the effects of LBD on me including the emotional issues!

But, there are many benefits in having an early Dx.  First of all is proper treatment!  I have read many posts on the community columns about individuals that were NOT receiving Namenda and Arecept early in their journey because the doctor failed to recognize LBD and diagnosed the patient with PD.

Second, and probably self-evident is the chance to get you affairs in order.  I have a friend who died suddenly.  Well, it was sudden to him. He had three major heart attacks and two by-pass surgeries.  A Quad and a 5X.  Then, 5 years after his 5X by-pass, he had another heart attack, that killed him!  Since he never quit smoking, changed his diet, or gave up drinking, he should not have been surprised.  In any case, it took his widow a year to get everything in order.  His idea of a filing system was everything in or on the desk in no specific order!  Who pays the bills in your home?   Having you finances, will, power of attorney, living will, insurance beneficiary, who to contact when you die, the distribution of your IRA or 401k, all make your survivor's life easier.  There is also the issue of where you will spend eternity.  If you always meant to talk to that Pastor that always stops by to witness to you, NOW might be a good time!

Then there are life style changes that can and should be made.  For instance, if you live on 10 acres, 50 miles from a hospital, and you spouse never wanted to live that way, you might consider selling and moving closer to all the things she will need to care for you.  What about a Senior's Community with assisted living, memory support, and skilled nursing, co located with independent living apartments?  That would make your life, and your spouses life better when you really need help.

Then there is the issue of your job.  Can you retire on a disability?  If you can, and trust me, it is not all that hard, you may be blessed with a couple of goo years to enjoy with your spouse and family.  These years have been wonderful for us.

I am sure there are other good things that come from an early diagnosis.  And there are some negative things also.  For instance the stress, on you and your spouse, of having a degenerative mental and physical disease.

I have read blogs and postings on the LBDA website from caregivers who had lover ones die very quickly from LBD. and an equal number of posts from caregivers that had their loved one live for 7, 10 even 15 years.  Now, all of those years were not good ones.  And that alone causes stress and worry.  But, LBD is an unpredictable, roller coaster ride for the patient and the caregiver.

My diagnosis came early and I retired when I could no longer do my job.  Getting away from the stress of my career has actually helped me physically and mentally.  But, the disease has progressed, slower than some, faster than others, in a very unpredictable manner.  I never know one day to the next, where I will be on the LBD journey.  For instance, my insomnia of the early years has returned!  My walking has slowed and became more unstable, and my long term memory has begun to suffer.  Yet, I still do very well, in my own way.  I enjoy life as I can, even away from my friends in Virginia.   Te bed part is being with my Wife.  Even when I am having issues, her company and love are a besting and better than any meds I take.

Early diagnosis is the key to successful, effective, treatment of LBD.  There is no cure.  But the is management of the disease in the early stages that serves to extend these early stages and thus, your quality of life.

LBD is a journey.  The long good bye.  An early diagnosis make this journey as easy as it can be.

Wednesday, June 11, 2014

Friends, fellowship and fun

In my previous post today, and one that I have not posted because it is too brutal, I lamented that I am away from my friends with nothing to do and no one to do it with!  This lack of social interaction is having a negative impact on my emotional health. The Psychologist I see knows the and even tried to help with suggestions to m wife.  That did not help!

But the truth is, I miss the strong, deep, relationships I have back in Virginia.  My friends there are my family.  They are my support group.  I understand the draw of the Grandchildren for my wife.  But they are older teenagers and involved in their lives with their friends!  They see us seldom, and almost never have a worthwhile conversation with us.  No surprise, we are from different worlds!  So, the chance that we are going to influence them is somewhere between slim and none!   They are like most of today's kids, no plans, no initiative, and no motivation.  They want everything and will work for nothing!!

But, even writing this, is a waste and a frustration to me.  I am in Florida, like it or not, and this is where I will stay.  I need to take some advice from the Apostle Paul.  He said we should learn to be happy in whatever state we are in.  He said this after being in prison, shipwrecked on an island, bit by a poisonous snake, and being tried for things he was innocent of.  I need that level of faith.  So, I should be happy in the state of Florida!  I'll try.  That's the best I can do at this time.

No where to go, nothing to do, and no one to do it with!

We received information from the local Alzheimer's Association about a "Friendship Club" that met on Wednesdays for those of us with Dementia.  We went to check that group out today and the glaring truth is, this was a glorified day care for dementia patients.  There were no activities, no interaction and no friendship.  The Dementia patients were mixed with people with emotional and developmental problems of all ages.  I was disapointed!

The fact is, there are no services for Dementia patients in the area and no place for me to forge a social relationship with anyone that I have something in common with.  As I have said before, this is an unfriendly, isolated, part of Florida and outsiders are not welcomed!!

The only retirement community that is acceptable has no openings and we have been on the waiting list for 10 months.  We have looked at others, but they simply do not meet our needs.  Many of them do not have the facilities I need or are for much older, more infirm, individuals.

I would be much happier with an over 62 apartment complex that had recreational facilities.  But NONE exist in the Pensacola area.  The fact remains that I am without social interaction because I cannot find anyone that I have anything in common with!

So, the frustration and isolation goes on with no solution on the horizon.  And frankly, I am tired of looking.

Saturday, June 7, 2014

Where do I live and where am I now?

Today, we toured Pensacola today.  The local historical society had an open house and historical reenacters all over the historical district of the city.  Then, the city also had a Hurricane Preparedness event on a town square that had different vendors and county agencies with Hurricane information.

It was a warm day and we enjoyed walking around, touring the historical venues, and the Hurricane preparedness displays for about 3 hours.  We at lunch in Downtown Pensacola at a quaint, local restaurant.

During that lunch, I began to feel mentally fuzzy.  I could not remember where we were or where we lived.  After a period of thought, I began to remember I lived fairly close to where we were but I had no idea how to get there.  This is not a new issue, but one that is normally in the background.  I don't think about it, so it does not bother me.  But, today, for some reason, it was an issue to me.

When I experience this mental disconnect, I am upset, and feel like I am lost, with no idea how to get where I belong, if I knew where that was.  As long as I am with my wife, I am OK.   I have had this feeling when I was up a night, alone in the living room, I feel lost.  My familiar surroundings help then.

Our hope is to get into a continuing care facility that I can progress in.  Our search continues.

Thursday, June 5, 2014

Another caregiver burden

I am down right drifty!!  I flit and flirt from topic to topic.  This is important and we must do it, then another issue pops up.  I am having continuing issues trying to find a place for us to live, when all I have to do is show a little patience until Azalea Trace is available.  One minute I want to move to the country, the next I want to move back to Virginia.  Then, I am looking at South Carolina!!  Of course, then the possibility of a room at the Armed Forces Retirement Home in Gulf Port Mississippi, comes up.  Get the idea!?!

Then, I walk around the house looking for things to do.  Dishes, toilets, lawn, floors.  Then I want to remodel, make the screened in porch a Florida room, and get a new high tech water heater, all before or after I go through  diatribe on why I never wanted to own a house!!

I am driving my poor wife crazy.  I know she is stressed out by my flighty demeanor.  I would love to stop being so annoying, but I really cannot control how I act.  My mind bounces around from idea to idea, without any filters or decisions!   I do the same thing on our future car purchase, life insurance, vacations, and many other topic areas.  I am sorry that I am so unfocused.  That being said, I cannot control it.

This illustrates the need, and possibly the requirement, for care giver breaks!!  She is with me 24/7/365!!  I don't like me now, how can she even stand me?  Yes, I know she loves me.  Yes, I know she will care for me always.  But, she needs a break from the constant droning of my crazy mind.  I am thinking the AFRH might be the best of all options.  But, I know I will change my mound in 5 minutes.  You should see me try to decide what to wear!

Monday, June 2, 2014

I just got in trouble with my wife!!

We were watching TV and a commercial was on from the VFW whining about 65 vets committing suicide everyday.   The Commander of the VFW said; We have to stop this!  My statement was WHY!  That's when I got in trouble.

So, I had to explain myself.  That did not go well either!  So, I am in trouble.

My explanation was that veterans are not respected, wanted or cared for in this nation.  So, who cares if we commit suicide?!  The VA debacle is just the tip of the iceberg.  The VA has been the place to go die for decades!!  The VA policy on granting disabilities is to delay, deny and watch them die!  The Politicians like us for photo ops, but nothing else.  No politician ever does anything about the treatment vet get!  The complain about the cost, want to reduce benefits, and hope we will die soon!!

So, if a vet decides to commit suicide, who cares.  We are doing the nation and the taxpayers a favor!  That's the attitude I see from our nations leaders!

You may disagree with me.  But the VA has denied and delayed my disability request, even though their own data connects the chemical in Mil-F-17111 Hydraulic Fluid to Dementia.  I was hyper-exposed to this hydraulic fluid for over 20 years.  I breathed it as a vapor from the 1500 psi hydraulic systems of the gun mounts I worked on.  Was doused in it from major hydraulic leaks, and got it in cuts and swallowed it!  I served on ships that had limited water making capabilities and often ant without showers for weeks at a time.  The longest I went without a shower was 30 days!  SO, there was no washing the chemical off.  We were NEVER cautioned to wear protective clothing or breathing apparatus.  We were NEVER given any special medical treatment or training.  There are thousands of Gunner's Mates out there suffering from this toxin.  Without VA help.  Who cares if we die!

So, I am in trouble!  Oh well.  I have been there before.

Kasey Kasum has Lewy Body Dementia!!

While the idiots on the talking head shows tell you Kasey had Parkinson's, the truth is, he has Lewy Body Dementia.  Just like me, and just like those you care for!

Why is this such a big deal?  Because, having someone of notoriety suffer from a disease brings attention to that disease!  I cannot tell you how many doctors I have seen that DO NOT know what LBD is!  Even though it is the second most diagnosed Dementia, right after Alzheimer's!  Even my own Sister still thinks I have Parkinson's!!  But, she is 81!  I am NOT going to change her mind!  She never heard of LBD, so it does not exist!

But, this is a great opportunity to get our disease some front page coverage and maybe some money for research.  But frankly, I would just be happy to have people actually know what I have!

I did meet a Navy Medical Officer, early in his career, at Church who actually knew why LBD was.  He was very well informed and appreciated the opportunity to pick my brain as to how I was dealing with it.  Again, how refreshing.

So, tell your friends about the suffering of Kasey Kasum, the world's most recognized Top 40 Disc Jockey!  Then tell them you take care of someone who also has the disease!  You will be surprised how much interest they show!