Friday, February 28, 2014

Thanks for your concern

My last post was about a real issue that I deal with.  I have told you before that I spend more and more time in the past.  Doing that, brings back things that upset me then, and they upset me now.  It is like I am reliving these painful memories all over again.   If you think you were upset by what I wrote, you should have been in my head!!  I did not sleep for two or three nights.   This is related to me living in my memories and loosing my mental ability to sort these things our, past from today, and done with verses still facing!    I believe it is also connected to my loss os social filters.  But, I am not a doctor, so I may be all wet!

Still, I have received emails to my personal email address and comments on the blog side making sure I was OK.  Friends from Church and LBD friends.  I really appreciate all the confer, prayers, and advice.  It is good to have a support group this big and this caring.

So, as many of your in the LBD community know,  I will probably have to deal with these issues forever.   Writing about it actually helps me deal with these issues.  I also go see a psychologist in the next week or so and that may also help. I am reserving judgement.

I have read other LBD blogs and understand what I am going through is not abnormal.  That is actually comforting to me.  For instance, when I punched my wife when I was having a violent dream, I felt terrible.  I had no idea that was going to be a LBD problem.  My neurologist's reply was; "I was expecting that!"  She could have warned me!  I would have bought my wife a catcher's mask!

So, onward and upward.  I am doing better.  Not great, but better.  And you had a big part in making me feel better!  Thanks.

And for the people I mentioned in my previous post;  I am still mad at you!  Call me or I will call you.  Unless you are already dead!!  Than, I will leave you alone.

Tuesday, February 25, 2014

Chasing life

I am up again tonight.  Unable to sleep because of anger issues.  It is interesting, as I look back over my life at the decisions I have made.  The accomplishments of my life and my failures.  The goals I have chased and accomplished and the goals that are left unfulfilled.  There are things that haunt me but few things that give me comfort.

One of the things that cause me great angst and emotional pain is the fact than no one that is a blood relative to me, in my generation or older will have any contact with me.  I have a half brother in Westlake, Ohio with the exact same name as me and he will not talk with me or write to me.   Maybe he thinks I want to take my share of the magnificent Dolence fortune!  Of course, there is no Dolence fortune.  Then there is my half sister, that contacted me!  She is our fathers daughter by his first marriage.  I was born after her, probably while her parents were getting a divorce.  She actually knew our Grandparents for a short time.  If you have not figured it our, our Father was a womanizing Cad that took NO responsibility for his progeny.   At least until after Sandi and were born.  He never paid a dime of child support for me.  He left my Mother to fend for herself.  He never wondered about me or had anything to do with me.  I did finally locate him when I was 31.  We talked on the telephone twice.  I told him I had a son, so he had a Grandson.  He was not interested.   He died in 1989.  Too bad.  His loss for not knowing me.

There are other kids out there fathered by Donald Andrew Dolence Sr.  They will have no contact with me either.  Curious, when I see one of those movies or television shows where the parent gets together with the long lost child.  You know the ones with the tearful happy, reunions, after decades of being apart.  Generally, the child was given up for option after a teen pregnancy!  Sound familiar.  Well, it is my experience that no one in polite society wants to have any contact with the "Bastard" son.

My birth Mother's own sister in law called me that!   Yes, Aunt Ella, Uncle John Kampf's wife, my Mother's Brother, did not want Betty's bastard son falling in live with her daughters!  Love, I was just happy to meet someone that I was related too.  I'm not from West Virginia, I don't date relatives!  Especially, First Cousins!!

Now, I was raised by the very best people in the world.  They loved me!  They were concerned that I would grow up angry at my circumstances.  They gave me direction and taught me to work hard.  I learned a lot from Mom and Dad.  They spent their retirement years raising a child that was not theirs!  They too me in, with little or no monetary help, and raised me.  I will never be able to repay them for their kindness and love.

I look at my Navy career.  From my first day in Boot Camp, I liked the Navy.  Why, because I belonged!  I was the same as everyone else and I had the same chance at promoting as anyone else.  It took hard work, dedication, and sacrifice.  When advancement tests were coming up, I studied 2 hours a day, 7 days a week, for 6 months before the test.  When I took the Navy wide test for Chief (E-7), I got the highest score possible; 80 out of 80!  I was one of the youngest Master Chiefs (E-9) ever in the Navy.  I was promoted to Master Chief Gunner's Mate at 14 years, 6 months of service.  I was the first Surface Warfare Qualified sailor on the west coast.  The first Master Training Specialist designated at Great Lakes in 1977!  I took the tough jobs and did the best I could.  I love the Navy.  It finished what my Mom and Dad started!

I met an LDO Boat's wain who was on the Insurv Board when I was a Gun Mount Tech Rep for NAVSEACENLANT.  He swore up and down that he knew me from back home.  Talked to me about it a number of times.   Then one day, her said he made a mistake.   would bet money he knew my brother Donald, and after talking to him, stepped away from me.  You know; "Step AWAY from the bastard!!"

I wish I did not drink as much alcohol as I did!    Bill Mowery's wife once told me;  I never knew you drank until I saw you sober!  Not a good testimony.  I wish I had half the money I wasted on booze!  Atleast I quit that habit.

I met and married a wonderful Christian woman who helped me deal with many of the demons that haunted me.  She lead me to a saving knowledge of Jesus Christ.  Taught me Bible.  Encouraged me to teach an lead in our many churches.  Then I me Pastor Fred Devan who took all the good my wife, other Pastors and a few Navy Chaplains had done and built a Pastor in me.  I remember when Fred told me I should preach!  But I did learn to Preach and I did a fairly competent job.  AT least no one got up and left during one of my sermons!  But, I know it is God using me, and not me being so good, when I preach God's word.  That is the most humbling part of working for the Lord.

I have other failings I will not discuss with anyone.  Things I am ashamed of and that only God knows about.  They are forgiven by God through the atoning sacrifice of Jesus Christ!  But, much like pounding a nail in a wood barn door, and then taking the nail out.  It leaves a lasting mark!

I wish I was better at so man things.  I wish I appreciated what I had when I had it, instead of always chasing the next goal.  I never really enjoyed where I was at.  I was in too much of a hurry to get up the ladder.  Never really knowing where I was going too.  Now, with age and maturity, I can see I ran past many enjoyable experiences, missing them all together.  Why, because success was just around the corner.  Never knowing, I was already a success.

Much of what I lived my life for is being destroyed by today's Progressive movement.  Who I was and what I did is looked on as a wasted life.  Today, to be a success, you have to smoke pot, be in a homosexual relationship, and be on the government dole!  Sorry folks, none of that applies to me.

But, you know what hurts the most?  With the exception of my wife, no one really understands my pain or even cares that I have it.  As long as they don't have to meet me, or acknowledge me.  Their happy.  Even Sandi Share, my half sister who contacted me out of the blue, will not talk to me or agree to a meeting.

But, I guess I am still in a hurry to get somewhere.  In a hurry for this disease to progress.  Since I am such a "Black Sheep", the blessing of dementia will be a relief instead of a personal burden.  I know, when God calls me home, I will be in the presence of the King of Kings and the Lord of Lords.  Then I will really be where I am supposed to be.  And I will be with my Father in Heaven, and my Christian family.  Maybe, that is where I have been rushing to be, all along.  All I know is, this disease makes me live, mentally, in my past.  And while I think about the Navy most of the time.  Painful memories come to the forefront also.  Things that make me angry and regretful.  Writing this blog is my best therapy. But it is still difficult to be who I am.

Again, this blog is my therapy.  I do not write it to embarrass anyone.  I write it to get things off my chest and the burr our from under my saddle.  If I offend someone, Oh well!  It is MY blog and nothing I write is untrue. So, live with it.  Or better yet, contact me!  I would love to talk with you.

Sunday, February 23, 2014

We are not alone!!

I am receiving more and port comments and emails from caregivers of LBD patients that are traveling the same path as I am.  They look OK, act OK, talk OK, to the uneducated.  They look normal to the people that do not live with the.  Most people do not see them in a rage after the sun goes down.  Their relatives don't see them do the crazy things that we do and don't understand why we get yelled at for them.  Like making a paper hat at a Church meeting and then wearing it!

It is good for me to know I am not the only individual doing strange things and saying things that people are shocked by.  My poor wife is constantly trying to keep me in line.  Not because I embarrass her but because she is trying to keep me from embarrassing myself!

More and more, I avoid social engagements.  Crowds or even small groups of people overwhelm me. When we go to Church on Sunday morning, I am frightened of the crowd.  My vision closes down to a pencil point.   I look around me, but I see little.  I do much better at home.

So, I am glad my little blog acts a an avenue to bring us together!!  I encourage more of you to join our support group!!  We can help each other deal with the ups and downs of LBD.  Thanks!!

Saturday, February 22, 2014

Not so good a day.

Today, we volunteered at the concession stand for our Grandson's Lacrosse game.  The team makes the money it needs to equip and travel the team through the selling of food at the games.  The parents provide the man power.  They had a need for volunteers, so we pitched in.

The amount of work was  not difficult.  It was a slow day for food and drinks.  I had time to talk our middle Grandson's Father.  He works for the Navy and has a deep background in Navy things I enjoy.  He even know many of the folks I used to interface with.  He and I talked for about a half hour and at the end of the conversation I could feel myself sagging mentally.  By the time we got home, I was a basket case.  I actually had to sit down because I was unsteady on m feet.  I feel completely depleted of energy and I cannot deal with any conversation of mental interference.

I feel dizzy and unstable on my feet and my energy level is on empty.  This is completely opposite from where I was yesterday.   This is a prime issue with LBD.  But this drop was more pronounced than before.  Maybe because I was exposed to so many folks I did not know.  Or maybe the 30 minute conversation, high energy,  centered on Navy.  But I am worn out and headed to bed.

Friday, February 21, 2014

Good Day!!

The weather has been war the last few days.  I have been able to get out in the fresh air and sunshine.  I always feel better when it is warm and I can get out.  Yesterday, I felt so good I mower the lawn.  Well, actually, the winter weeds.  Yes, in Northwest Florida we grow winter weeds!!  Both mowers started right up.  Thank you Stabil!  I really enjoyed riding the tractor around the back yard.

I went to bed very early last night.  I was tired and I felt the effects of "Sundowning" coming on and I did not want to put up with it!  I sole up this morning raring to go.  By 9AM I was cleaning the inside of the car.  Vacuuming the carpets in the car, washing the windows inside and out.  The car is now clean, inside.

Then we went to Lowe's and bought some week killer, mulch, and a new string trimmer.  We came home and I spread the pre-emergent week killer, spread the mulch around our Crepe Myrtle tree in the front yard, and used my new string trimmer to trim the fence line in the back yard!  I was a ball of energy.

Now, I am resting.  For the first time in a while, I feel like I accomplished something.  This is a good feeling.  It is important for me to do the things that I used to do.  Next week, I am going to wash and wax the car.  That may take all week and in the past I could accomplish that in 4 hours.  But it will be done, by me.  Maybe I can't drive alone anymore, but I can wash and wax the car, just like old times!  That will make me feel better.

Since it is warming up, the old fight is coming back and I feel good.  I hope this weather pattern stays with us.   I know I can get depressed, grumpy, and difficult to be around.  Even though I try not to be.  But days like this, get me back on track.  So, I knew I had to share this with you.

Tuesday, February 18, 2014

Have you ever admitted you are defeated?

Today, I had a Doctor's appointment with my GP.  She is an exceptional doctor.  Caring, interested, and dedicated to my well being.  I have told her how lucky I am to have her as my doctor.  In our discussion I admitted to her, at her questioning, that I normally pretended, acted like, and put on the face of, being normal.   I also admitted to her that, for the first time, I feel defeated.  The symptoms, issues, and problems caused by the Lewy Body tangles in my brain, are overwhelming me.  That's it, the fight is over, throw in the towel, I loose.  Lewy Body Dementia has won.

Now, much like a football team, down by 10 touchdowns, in the third quarter, I am not going to stop playing.  I just know I cannot win and the loss will only get worse.  That may upset some of you.  It did me until I admitted it.  Now, I am OK with it.  Like the football team previously mentioned, admitting defeat may be the better part of valor.  The bottom line is, I need to give into the issues of LBD and quit fighting them.  I am tired of fighting.

My Doctor recommended I make an appointment with a counselor that I can openly address these issues with.  I know she is right and I am going to contact a counselor that she recommended tomorrow.  I need to talk to someone that has no investment in me!  Why?  Because everyone who has an investment in me wants me to be 100% all of the time.  Because of that, I put on a brave front and act 100%.  And, because of that, I am not honest about my how I feel mentally or what is happening in my mind.

Again, LBD is a journey.  There are numerous way stations along the way.  Victories and losses.  Highs and lows.  But if you ask the Quarterback of that loosing team if they had a chance to win when they came out for the second half, the answer would be a resounding, YES!  Even though he knew they were out weighed by 1000 pounds on the offensive live and the receivers  on the opposing team were a foot taller than their defenders!  Oh, and the quarterback of the loosing team was blind!  At some point, you have to get tired of saying, I am still going to win!  And I am.

I also remember my best friend, Jerry's Mom at his daughters wedding.  She had Lupus and we all worried about her.  Evidently, many of us had asked her how she was doing and it was wearing thin.  I stepped into an elevator that she was already on and I asked her;  Hoe are your holding up?  She replied loudly and curtly; Fine, what about you!  The point is, she was tired of people asking and having to put on a brave face.  She was extremely tired and worn out.  I did not take exception to her comment and I hope most of you won't either.  It's time for me to let this disease do it's thing.

Sunday, February 16, 2014

Being consumed by Lewy Body Dementia

When I was young, I never understood why older people always talked about their medical issues.  Now I know!  You medical issues are always on your mind!  From pills, to doctor's appointments, to future plans.  Everything you do or will do rotates around what is wrong with you.  In my case, I am consumed by what my future mental and physical capabilities will be.  I have a pretty good idea, and that is what drives my waking thoughts.

It is said we become our parents.  There is also an old saying I learned in the Navy; " I know a lot of old people, and I know a lot of dumb people.  But I don't know any old, stupid, people!  You have to be smart to get old!!"  That being said, I am going to use some of that accumulated wisdom to guide the rest of my life.

Psalm 139 tells us, all the days of our life, were written in God's book, before we were formed in our Mother's womb!  Since that IS the truth, God knew I was going to have this disease.  And God already knows how this will turn out.  SO, why should I waste my time and energy worrying about how to provide for myself and my wife in the future.  In the twelfth chapter of Luke, Jesus says God feeds the worthless ravens and give the grass better clothes that Solomon had, why do we worry about what we are to eat of wear?  Since God loves us much more than that worthless raven and lowly grass!  Again, if that is so, and it IS, then I should trust God to take care of Linda and me.

This is now my new plan for what remains of my life.  I am going to live as if I have no disease.  Live as a "Saved by Grace" son of God.  And lay ALL my burdens at the foot of the Cross!

Now, understand, I am still going to follow medical advice.  I have limited my driving, I take all my prescribed medicines, and I exercise and eat a balanced diet.  I visit my GP, Dentist, Neurologist, and Psychiatrist, as scheduled.  But, I am going to LIVE my life for Christ.  That does not include moping around waiting for the next shoe to drop.  Yes, a few have dropped recently.  But, I feel better today, after Church and lunch, than I have since Christmas.  No, my hallucinations have not stopped.  I saw a horse on Interstate 10 today!   With saddlebags!!  You don't see that too much on freeways!  But, who cares, I know it was not real.  Or at least I am fairly sure.  I still have something to give and that is what I am going to do.  So, for the foreseeable future, Gulf Breeze Florida is our home base.

God's Word offers us so much wisdom and so much encouragement.  We must stop listening to the world and start listening to God.  The world wants us defeated!  God wants us empowered.  He wants us empowered so much that He defeated the power of death through the sacrificial death of Jesus, His son.  If we claim that promise, we are untouchable by the world.  Jesus told his decibels, the world may kill you. but not one hair on your head will perish.  Now I understand what he meant!! Praise the Lord!!

Friday, February 14, 2014

High level of cognitive function

I have received some "Flak" over my ability to write and describe my journey with LBD.  Some have even question if I was a fake!  Well, I assure you I am not malingering.  But I read a post on the Lewy Body Dementia Association web site from a wife/caregiver who's husband has also been able to retina a reasonably high level of cognitive ability, especially in his writing  He too had an exceptional memory and mental capability before being diagnosed with LBD.  He also was prescribed the Alzheimer's drugs Excelon and Namenda, early.  She stated they their neurologist told them it was rare for someone to resting that level of cognition.  But, there he is!

Much like other LBD issues, since we do not have a media that we can communicate our issues on, in the open, we don't know what others are experiencing.  The LBDA Social Forums do offer some insight into others journey with LBD.  But it is sporadic and subject to the ability of the writer to convey the issued experienced buy their loved one.  For instance, my dreams are horrific!  Last night I was terrified to go to bed because I had such horrific dreams when we napped in the afternoon.  My wife said I was "Punching the air" in my sleep and she stayed away from me in self defense.  Since I HAVE punched her in my sleep before, that was good reasoning.  She asked me what my dream was about and the description did not do the dream justice.  That is the issue in second hand writing.

So, while I have a fairly thick skin, some comments about being a "Fake" do effect me.  It was good to read about another LBD suffer that was retaining the ability to write.  I wish he would start a blog to educate others about the ravages of this disease.

As for me, my LBD is progressing and dreams, dark moods, and other issues continue to be an issue. I prefer to be alone or only with my wife.  I avoid crowds at all costs.  I have increasing difficulty finding the words to verbally express what is in my mind.  Writing is easy, because I can stop, use spell check, and go back and rewrite, as needed.  In verbal communications, those corrections show, blazingly.  I no longer remember the activities of the day before and those autonomic functions continue to fail, malfunction, and operate intermittently.  Not fun, but not a show stopper either.

I am better off than many of my fellow LBD compatriots and I am glad for that.  But I am farther down the journey than most of you realize.  I can still play the part of a "normal" person when I need too.  It is a game!  But, more and more, I don't want to play the game.  I need to be comfortable with the condition that I am in, and so do you.

Read the site and learn more about this disease before you throw any more rocks my way!

Thursday, February 13, 2014

Death, our next step

Today, I was notified that three separate men who I was contacted to, directly or indirectly, passed away.   Death is always a sobering event for us.  We cling to life so strongly that we fear death.  Why, because it is the unknown.  No one we can talk to can tell us about death.  What happens when you die.  What is next?  Now, I am a born again believer and I believe what the Bible tells us about death.  1 Corinthians15:52 tells us that "in the twinkling of an eye" we will be with Jesus.  What happens next is important.  If we have accepted the free gift of salvation paid for by the atoning death, burial, and resurrection of Jesus Christ, we will be in Heaven.  If we denied that free gift, our destination is Hell.

Today, three men died that I believe are with our Savior right now.  The first notification I received was the death of a close friend where I worked.  His Dad was a World War Two veteran who spent the entire War on the USS Bache (DD-470).  He survived two Kamikaze attacks.   Don and I shared stories about our Dads.  Their habits, humorous times, and life stories.  We used to laugh at how our Dads did things, and how WE were becoming our Dads as we aged!  His Dad passed away a couple of days ago.  I know Don will miss him.  I do too and I never met him.

The second was a man who suffered from the same disease that I do.  He was also a Navy Gunner's Mate.  I faithfully read his wife's Blog as she described her journey as a caregiver for her husband who had Lewy Body Dementia.  Our kinship in our journey made his passing personal for me.

Then, this evening, we received a telephone call from my wife's 93 year old cousin in Iowa.  Her husband, a great man of God, passed away this morning.  This was a second marriage for both of them.  Both were widowed early in life and they married and had 27 great years together.  Louis was a great example of a husband, man, and Christian.   He and I became friends when we visited them a few years ago.  It was like we had always been together.  He passed from this life into the presence of the Lord, quietly, gently, in his sleep.  Just as if Jesus Himself was ushering Louis into Heaven.

 Looking at today's events, my fear of Death has all but passed.   But I marvel at the passing of people I know.  Yes, I miss them.  But in most cases, I realize they are in the presence of the Lord.  They are in His loving arms.  Welcomed home.  That is something to look forward too, not fear.

Friday, February 7, 2014

Other issues

Since we moved to the Pensacola area, there are services we were used to in Virginia Beach that East Lower Alabama just does not have.  Like street lights, schools that teach, anything of the service sector open on Saturday or Sunday, and anything serving retired people.  I know you think; "Move to Florida for retirement."  Well, that is Tampa, Orlando, Miami, anywhere in the peninsula of Florida.  The panhandle is really Alabama in every sense of the word.  These morons even import "Sticks".  The are not IN the sticks.  They have to go get them.  Now if you lived here your entire life, it probably would not bother you.  Since you can't read, don't have manners, and have expectations lower that a sewer pipe!  I hate this place!

Why am I so upset?  Well, the only Men's barber shop in Gulf Breeze is only open Monday through Friday, 0730-1700.  No nights, no Saturdays.  Now, I hate going to places that do women's hair for a hair cut.  I hate the smell of the junk they put on their hair!  Beauty parlors, an oxymoron, smell terrible and I will not go in one!!  I get my hair cut by men in a Men's Barber Shop.  No women allowed.  I do not go where the girly men go!

So, I called ahead and got my name on the list. I showed up when I was told to.  And they were chock full!  Even though my name was on the list, I waited 90 minutes and I still did not get a haircut.  I finally left when the barber I used to like took someone who missed his turn, before me.  It will be a cold day in Hell before I go into that barber shop again!!  Not to mention I paid $20 per haircut!  Screw them. Screw East Lower Alabama.   I will cut my hair myself.

Now, my anger is another issue that has surfaced over the last few weeks.  I normally hold my anger in check except for the rare times someone pushes me past my limit.  Then, I always could be dangerous.  But I have not been this angry since the Spanish immigrants in the Seniors Apartment in Virginia Beach commandeered the elevator in our building to move in and would not let us use it to take our groceries up to the third floor.  That one almost caused a fight.

I am not a happy camper and I will be in bed soon.  Don't call me tonight,  It would not be pretty!

Update;  Do you see your loved one in my diatribe?  Anger at things we can't understand or can't control is a real problem.  I have been angry since this morning when my bathroom incident occurred!  As I have said before, this is a brutal disease that negatively effects the patient and the caregiver.

Changes, down turns, and new issues

Since after Christmas, my wife and I have noticed some "changes" in how LBD is impacting me.  Some of the changes are subtle and some not so subtle.   And each separate change probably would not be a big issue but combined they spell a new level of the disease.

Mentally, I have noticed a number of changes.  For instance, I am having more disturbing dreams and I am continuing those dreams into my waking hours.  Sometimes, I have a task that I am doing in my dream and I try to figure out how to complete the task I can't quite remember during the day!  This is quite upsetting when I realize it was a dream and not something in my waking hours.

Second, I am loosing more and more long term memories.  Names, places, events, that now are shadows that I cannot bring into mental focus.  An old shipmate from the USS Caron called me the other day and I had problems remembering some of our times together.

Also, I used to be able to think about a time ahead of where I was and concentrate on that to deal with stress.  For instance, when I relaxed during a deployment, I could mentally transport myself to the time I would be home.  I also used this method to do things in my mind to relax.  Like, work on the car, or some other activity I enjoyed.  Now, I cannot do this form of relaxation.

Words are harder to find and I am more agitated.  I walk around the house looking for something that I can't recall.  This is also disturbing to me.  In conversations, I find myself describing words that I need to use.  My wife is very helpful in finding he word, but it is embarrassing for me.  This surfaces when we are conducting our Bible Study at the local Assisted Living Facility.

Now, the most embarrassing thing.  I am having more and more bathroom accidents.  It seems I do not know, all the time, when I am about to have a bowel movement.  There, I admitted it.   This is truly difficult for me.  Maybe even more embarrassing and degrading than loosing my driving privileges.  Which I still have, as long as I am with someone who can monitor me.  Messing in my skivvies is something I never really expected, at least right now.  But, here it is.

Also, I am much more frightened to be alone in the house or anywhere else.  I am very apprehensive and suspicious of just about anything and anyone.  In my mind, things go missing.  Thing I know were there.  For instance, we went to the Commissary and I told Linda we only needed two cans of coffee because we had one in the pantry.  When we returned home, the one in the pantry was gone.  Now I know that coffee was there before we left!  Where did it go?  Got me!

All of these issues are part of the disease.  Look at the symptom sheet from the LBDA web page.  I am like a catalog of LBD symptoms.   And they clearly tell me and my wife that I have progressed to the next level.  If I was in school, that would be a good thing!  But, in my case, it could be looked at as a negative.

But the increase in symptoms also takes some of the fight out of me!  I have the attitude of;  Why fight it.  It will progress at it's own pace anyway, no matter what I do.  I know, "Bad attitude".  But, it is where I am at this time.

I guess on the positive side.  At least for the moment, I am not constipated!  That's a god thing.  Right?

Tuesday, February 4, 2014

Appreciating your spouse

In most cases, the primary caregiver in any dementia patient is the spouse.  But the spouse has a much more intimate connection than just being a caregiver.  There are issues the spouse must deal with that a caregiver will never deal with.  The most important being the pending loss of your spouse.  That loss starts long before death.  Memory loss, sleep issues, ugly dreams, disorientation, sexual dysfunction, sun downing, mood swings, and many other issues.  Some begin early and some come on later.  But it is the spouse that has to deal with each and every one.

I have punched my wife, HARD, acting out a dream.  Woke her up in the middle of the night and asked her what her name was, had bathroom accidents in the shower and my pants, and she has spent many an evening with me being so grouchy and jumpy that bed was the only good place for me.

Then there is the loss of the marriage partner.  The person you used to make decisions WITH!  The other person who drove the car, mowed the lawn, washed the car, or even cared that the car was dirty!  You see, the personality of a dementia patient completely changes.  Apathy, depression, lack of interest in daily living,decision making ability,are all gone or severely degraded.

All of these losses are uncompensated!  There is no one to help your spouse with the things you used to do.   And, it is never going to get any better.  Truthfully, it is going to get much worse!  No wonder many marriages end in diverse for dementia patients.

I am blessed, my wife is my best friend.  She is the person I want to be with, share everything with, and trust, totally!  We are committed to seeing this through.  Committed may be a destination however!  Lewy Body Dementia is a crazy journey.   But I know we will make it together.

If you are related to someone who is the spouse of a LBD patient, help them.  Be their friend, support, and shoulder to cry on.  Spouses that are caregivers lack a person to share the frustration with.  Someone that has a shoulder to cry on.

I appreciate the sacrifices my wife is making.  This is certainly not the retirement we planned.  But, we are together and working for the same goal.  We are in love and respectful of each others abilities and problems.  I am blessed.  I pray others are too.

Your network of supportl

I have learned that is is imperative that someone with LBD have an extensive network of support.  There are the obvious members of this read; Neurologist, GP Family Physician, maybe even a physical therapist.  But what about a Psychiatrist?  Or a Psychologist?  A strong medical team is important.

But what about respite care?   How does your caregiver get a break from the crushing daily stress of taking care of everything you need?

I can tell you that having a counselor to discuss the many mental disturbances that come with LBD may be the most important person on your team.  It does not necessarily need to be a Psychologist.  It can be a trained mental health counselor or even a Pastor.   But you do need someone to talk to.

Physical therapists deal with movement disorders of all kinds, including the swallowing issues that cause us to ASPIRATE!  That is the number one cause of death in LBD patients.  I am having en increasing problem with aspirating.  Even the rote reflex of swallowing saliva has caused me to aspirate recently.  I have an appointment with my Neurologist soon and I will ask for a referral to a physical therapist for this issue.

Friends, are the most important part of your support network.  Nothing cheers me up more than a call from my best friend Jerry Hart!  I can be ME with him.  We talk Navy issues,  cars, football, health issues, even politics.  Each week, he and I spend at least an hour on the telephone and it keeps me going.  Of course, having friends that can come sit with you while your caregiver goes out to shop, Bible study, or with friends for a break is important also.  I remember when I had my colon surgery, almost 13 years ago.  The two days before the surgery, I had to fast.  Jerry sat with me both days while my wife was at work!  His company, our conversations, made me forget that I was not eating.  Friends like that are few and far between.  If you have one, you are blessed.

I know some folks that hide their disease.  They try to look normal.  They do not want anyone to know and do not want sympathy.  I suffered from part of that fantasy.  While I embraced LBD, I made light of it!  And I did not want any one's sympathy.  Well, now I realize I need every one's help and I no longer try to look normal.  As a matter of fact, I am completely open about my disease.  Why, how else will someone learn about the second most diagnosed dementia?

LBD is a frightening disease!  It is not something you want to face alone.  So having a complete support network is important.  I am sure you can add other members to this team.  The more the better.

The "Ups and Downs" of Lewy Body Dementia

Most if not all of you understand that LBD is a disease that hammers you one day and you feel almost normal the next.  That is frustrating for the patient and the caregiver.  But, it is a defining symptom of LBD.

It seems to me that the fluctuations had increased in frequency and magnitude over the last few months.  I have felt like moving to my concrete home on 40 acres and live without assistance, independently and then, just as quickly, I feel like I need to be in a memory support facility immediately!  Again, you can see how frustrating this is for all concerned.  But, more and more, I realize that I will never I've independently again.

This realization has really effected me.  For instance, I love cars, pick up trucks, campers, motorcycles, and anything else with wheels and an engine.  The realization that I will never purchase a vehicle for my primary use again, has hit me hard.  I have described my indecision over future living accommodations.  But again, I know, more and more, that we need to be in a facility that has the capability to deal with my issues now and in the future.

I used to say that I wanted to retire before I was drooling on my shirt and wetting my pants.  I did, and I am glad that we were able to do that.  Because now, half of that statement is a reality!  So again, I am being reminded on a daily basis that independently living is a thing of the past for me.

Just the same, I am sure that I will have another fluctuation where I am pricing out a new truck and property in the country!  My wife understands and "Humors" me.  She know this will pass, soon.

Just in the time I have spent writing this post, my mental outlook and attention has slipped and I am having difficulty concentrating on what I want to say.  That is a constant struggle for me that my wife and I notice more and more.  It effects everything I do.  We notice it even when I am conducting our Bible study at the local assisted living facility.  Thank God, those folks understand!

Saturday, February 1, 2014

Understanding what I did not understand before

I have said before that my Father in Law had Alzheimer's.  He had it a while before we knew about it.  His wife, kept him going.  She was his memory, his direction, his motivation.  Then, Kelma died and Kurt was completely lost.  Kelma had a letter written telling Kurt to come to Virginia and live with us.  That was a good idea, except we had no warning of his disease.  To top it off, Kurt was a deaf as a stone wall!

We did all we could to get him physically healthy.  He had some serious dental problems they an oral surgeon fixed and made some new dentures for him.  We bought him a new hearing aid, that did not help!  But we tried.  We made a bedroom for him and did all we could to make him comfortable.  But he wasn't.  The doctor he went to finally told us he wanted to go back to California.  We made that happen.

Now, having a parent live with you is always difficult.  Add in his mental handicap and the fact that we were never told about it, and things were very difficult.  You might say, we should have known he had dementia.  Well, he was so deaf, and always was, we thought that was his issue.  We were wrong. Add to the fact that we were in our 30's and had a preteen son.  I was making deployments on a Tin Can and trying to make a living for my family, including Kurt.

Kurt later came back to us and we found the best professional care we could.  But, there were no Memory Support facilities in the late 1980's.  He only had social security coming in.  Again, we did our best.

Now, when I see things like the Gaither Homecoming Shows, I think of Virginia and long, so much to be home with my friends and in my Church.  I miss my Navy friends.  They are my family too.  I muss hearing my Pastor preach and him and his wonderful wife sing.  I miss the hugs and friendship of longtime friends.   I miss knowing where I am.

I now understand why Kurt was so disrupted in his move to Virginia.  I wish I would have understood his confusion and agitation then.  But I do now and I identify with his distress.  I never thought Kurt and I would be kindred spirits, but we are.  I now understand.