Sunday, March 30, 2014

The blessing of friends!

This blog was originally established to help me and to leave a legacy to my friends and family.  But it has grown into much more.   Through the emails and comments of those who read these posts, I have received countless blessings and strength.  Many of you who write to me are caregivers for dementia and LBD patients.  Husbands, mothers, fathers, wives, all connected through this blog.  I truly cherish every communication I receive from each of you.  You have helped me through difficult times and even kicked me in the seat of the pants when I needed exactly that!  Like family, you seem to know when I need encouragement, kindness, and counseling.

While I never thought I would be involved in an endeavor as important as this, I cling to each post, each reply, and each email, connected to this blog.  I used to complain that there was no support group for LBD.  That no longer is true.  You are my support group and I strive to be part of yours.

Some of you are farther down the path of LBD than I am. I learn from each of you.  Some of you are new to this challenging journey.  I hope we as a community can be an assistance to you.  I also bring your attention the LBDA.Org site and the blog "Lifeafterlewy.blogspot.org" Both of these sites offer great information and insight.  I learn from both of them daily.

As many of you know, my condition has taken another downward turn.  Taking the dog's thyroid medicine was an indicator.  So has me looking for my cell phone all day today.  It seems the dog's pill did not help me track things!   I have learned that it is good to laugh at how Lewy impacts you.  

Another issues I have written about lately is our search for a continuing care community.  It is fantasy to think I am the only one that will need special care.  My wife has a strong genetic link to Alzheimer's and she was exposed to the same chemicals I was in the Navy because I brought my dirty uniforms and work clothes home to be washed when I was not deployed!  There is also brown hips and osteoporosis.  What would I do if she was in a nursing home and I was left at home alone?!  I don't even know what meds I take!  Obviously!!  So a community that provides for both of us is paramount.  But the community we want has a waiting list as long as Interstate 10!  We have continued our search without results.  But, God will provide.  My Pastor's wife at Grace Community Church in Virginia Beach says;  "God has taken god care of me this far, I have no reason to think he will let me down now."  Sound logic to live by and I will.

So, let's keep in touch, supporting each other, and keeping everyone informed on how we are doing.  We will all be better because of our working together.

Monday, March 24, 2014

Toughest day of all

I wrote earlier today about my mistakenly taking my poodle's levothyroxine.  That mishap has lead to a very stressful and depressing day.  This is the day, that the reality of LBD hit me like a ton of bricks!   Today is the first time I actually had the emotion; "Why me?"

Now before you write me and give me a lecture on "Why me?", let me help you.  I know God chose me to have LBD before I was formed in my Mother's womb.  He also chose me to be born out of wedlock, raised by loving people not related to me, and to become the youngest Master Chief in the history of the Navy.  I know it is God's perfect plan.  That being said, I still am presently overwhelmed with the "Why me?" emotion.

Today we also started to fill out the financial questionnaire for Azalea Trace, a continuing care facility in Pensacola.   That has left me feeling like we do not have enough money coming in to cover the cost of living there.  Even though we were assured we would.   The fact is, we may not.  It remains to be seen.

That would leave me in the Armed Forces Retirement Home and my wife in an undetermined location and care. This was not a good day.  The stress of trying to prudently plan for our future, has left me depressed.

Even though we saved and lived below our means for most of our married life, we may have missed the mark.  That had added tons of stress and emotion to our lives.  The recent down turn in my disease has illuminated a number of issues that we did not adequately address.  Maybe we were in denial.  But we certainly are not now.

Medication management

I gave up managing my media long ago after I messed them up so bad I did not know what drugs to take when or what drugs I even had.  However, with my wife's oversight, I have continued to take my meds, as she has them laid out in my pill box.  She always checks on the pill box to make sure I have taken all my pills.  And on busy mornings, she makes sure I take both morning groups of pills.  Some before I eat, some after I eat breakfast.  I also dispense our two elderly poodle's drugs.  Marcel, our 11 year old male, has Hypothyroidism just like me.  He and I take our morning pill at the same time.  It is even the same drug, he just gets a higher dose than I do, until this morning!

We were going out to eat breakfast with our son.  That changed my morning routine.  That was the issue.  My routine is my lifeline.  Change it and I do not guarantee the results.  This morning, I took Marcel's thyroid medicine!   I did not figure it out until I went to give Marcel his pill!

I feel OK, my stomach is a little upset, but I guess I will live.  But it upsets me and illustrates to me that I am loosing control of my ability to manage things in my life.  It is frightening and disconcerting, but not unexpected.  Actually, I am surprised it has taken this ling for me to reach this point.  I owe my slow progression to Dr. Mary Bowles in Norfolk, Virginia.  I need to go home and give her s hug.

So, we will cautiously watch this new indicator and see if it is an anomaly or a trend.  Meanwhile, I am not scratching flees and I have not chased any squirrels in the yard, yet!

Sunday, March 23, 2014

Vision problems

I have been having problems with my eye sight the last few months.  Yesterday, my son and I went out to test drive some cars for him.  Since I am a car nut, I am always up for a car shopping trip.  He drove the cars and I rode.  He drives like I used too, fast.  When he did, I reacted like Mr. Magoo's Mom!  Going fast seems to make everything seem to be crashing in on me all at once.  Frightening!!

I think I shocked my son with my exaggerated reaction to going fast.  But, it is what it is.  I also notice that I have difficulty seeing small thinks.  For instance, I now have to wear my glasses to shave!   That caused me to from my goatee back.   That way I do n to have the close shaving issues.  Just wide open face and neck on either side!   Much like other things here in the Panhandle of Florida, the last eye doctor I went to was a moron with the customer service skills of a mass murderer!!   So, I am not going to go to another eye doctor here.  Therefore, I will just have to deal with my vision issues.  I did purchase a big magnifying glass to help me see things.   That is better than getting treated like a freak!

When someone tells you Florida is god for retirees.  Or Florida knows how to deal with retirees.   Punch them in the nose!  The Panhandle of Florida, or East Lower Alabama or "East LA" as I like to refer to this hick infested backwoods hell hole, has no capability of helping or dealing with retirees or anyone with a disease more complicated than a hangover.

Oh well, as a friend of mine who is the In Service Engineer for the MCM Diesel engines says; "It is what it is."   I can't change it and I am too tired to try.

Tuesday, March 18, 2014

Where do I go from here?

My last post generated some comments that I appreciate.  It is always good to have someone give you a gentle, caring, kick in the seat of the pants!   But the point is, the Psychologist WAS correct!  In my 40 year Navy career, I used my Type "A" personality to inject myself into every important mission.   Because of my experience, knowledge, boldness, and belief that I was the one who held the knowledge they needed, I was very successful.  Even those who did not like me had to respect me because I was almost always right.  You can't argue with success.

Now, my life is different.   So, how I deal with this is critical.  That was the Psychologist's message.  And I am now looking at my life and ways that I might be able to add "Value" to my life.  As Kathy reminded me, God did choose me to live the LBD life.  It was planned before I was made in my Mother's womb. (Psalm 139)   And yes, this blog is something that I do that has value.   This blog is also therapy for me.  I can express my frustrations, pains, and fears, to you, my LBD support group.  Thanks.

Since we moved to Florida, the frustration of not having any value connection has grown.  I tried volunteering at the USS Alabama Memorial.  But the drive to Mobile is too much for me and there is no one that can take me.  Also, the work on the Turrets was too physical for me.   So that was a non- starter.

There is also the Bible Study at the the Assisted Living Facility is something I love and they depend on me too.  But getting ready for that study is demanding for me.  I also write a Navy blog that is also therapy for me.  

There is another point that I have never discussed before.  I am stuck between two worlds.  Most of the time, I think I am still able to do anything!  Until I try to do something.  Then I realize I am not mentally or physically able to do what I used to do.  But I still want to!  Then, there are times when I don't want to do anything.  Especially in the evening.  Many nights I am somewhere between screaming and crying.  I miss my friends, my Church, the Navy, shooting events, and knowing people.    I am frustrated and even angry about what has happened to me.  Yet as I reflect on my life, I see so many mistakes, missteps, and character flaws.  Reflecting is not always good for me.

I told my wife the other night, and I wrote in in my personal journal, that I feel lost, misplaced, out of place.  I am not where I need to be but I don't know where I am supposed to be!   Sometimes, I want to throw everything away.  And other times, moving into a smaller place terrorizes me!  I am truly lost, without a direction, and without a desire to find out where I am supposed to go.  Lost!  I don't know where I was, where I am, or where I am going.  That frightening feeling was the first feeling that I experienced before I started this journey.  Totally lost, with no real value.  It would appear that I have found the root cause.

But, where do I go from here?  That is another question I don't have an answer too.

Friday, March 14, 2014

I no longer have value!

When I was at the Psychologist's office yesterday, he said something that I have been mulling over this morning.  He said I was a Type "A" personality guy and had a long, successful, carer in the Navy.  There I had value.  People sought out my opinion and looked to me for technical solutions.  I was a leader.  I briefed the Secretary of the Navy, the CNO, and other Admirals, not to mention the crew of just about every ship in the Surface Force of the Atlantic Fleet.  On ships, I was the senior Ordnance person.  I was, as the CPO Creed says,; "The fount of wisdom."

Now, no one looks to me for anything.  I am away from my Navy friends.  The grandsons have their own lives, and even my wife corrects me most of the time.  There is no place in my life that I am the subject matter expert.  No one who looks to me for critical answers.  And there is not even one person who wants to listen to my sea stories!

The Psychologist wants me to get involved in something I am passionate about.  Nothing comes to mind!!  Yes, I love our Bible Study at Bay Breeze Assisted Living Facility.  But they are the only people that are happy to see me and depend on me for anything.  Otherwise, I am mostly ignored, and sometimes a burden.

Maybe that is why my mind spends so much time back in the Navy.  There I was somebody of value. The Psychologist was right!

Thursday, March 13, 2014

New doctor visit

Today was my first visit with the psychologist for counseling.  It turned out better than I could have planned.  He is my age or a little older and he did his homework about LBD before my appointment.  He included my wife in the first visit in order to get to know us.  He was very congenial and cringe in his approach.    My wife and I both believe he has my best interests regarding my mental health as his priority.  We spent a considerable about of time discussing continuing care facilities.  He was antimate that we should get into a community sooner than later.  He said I would qualify now but that window is closing.

That brought up a discussion about the community we saw in Alabama, an hour away from where we presently live.  I have discussed this before.  While that facility has his recommendation, the distance from our area and the grandsons keep it from being a contender.

My wife brought up that facility on the way home and we had a discussion about it when we returned home.  We never have an argument.  I can count the number of arguments we have had in our 41+ year marriage on one hand.  But our discussion about the Alabama facility was "Spirited".

Today was a good day.  I am happy I was referred to this new Counselor and I look forward to my next visit, where he and I can delve into issues I have, alone.

Wednesday, March 12, 2014

Doctor humor!

After the move to Florida, we had to build a medical support group again.  I had the best Medical Support Group in Virginia with the primary member being my GP, Dr. Robert Dowdy.  Building a new team was not easy and it took a while with a few doctor firings and some tense moments.  But, we are about 90% there now.

Our Family Doctor is very good.   She is not Bob Dowdy, but she is good.  A few days ago, I had an appointment with her and I discussed some of the physical issues of my LBD.  Like me "soiling" my self.  She came back with some advice.  She asked me if I had seen the movie; "Bucket List"?  I had not.  So she regaled me with a line that Jack Nicholson used in the movie.  She told me; "Never trust a fart or waste an erection!"

That is good advice!  Since passing gas has lead to embarrassments and so has having to scratch my bottom.  The second half also makes sense since that part of my life is as messed up as everything else.  So, I am taking that advice when I remember it.  Generally I remember her advice after an accident!  Sort of like closing the barn after the horses have left!

Having a disease that will not be fired and will only get worse, requires a sense of humor!  My Family Doctor has one and I appreciate that.  Tomorrow, I go see a Psychologist to help me with some of the other emotional issues I have been struggling with.  I am reserving judgement until after a couple of visits with him.  A Psychologist can help me, or he can ruin my life.   In Florida, and in other states, he has the power and authority to institutionalize me, take away certain rights, like driving and ownership of things I cherish.  So, I am going to be reserved with him until I get a read on him.  That is, if I remember to be reserved with him.  It could be like my doctor's advice on passing gas!

Monday, March 10, 2014

Decision made

We have discussed future living considerations and we have come to a conclusion.   The Alabama facility is not a player.  We will continue to wait for Azalea Trace.  If that does not work, we will shelter in place.

In theory, it makes sense.  So, I agree.  I do admit I like Florida income tax laws.  None!   Alabama does tax our 401 when we draw the money out.   That is a big issue since it makes our money go farther!

I am still dealing with this decision even though I see it is logical and sound.   I have now stopped the search and I will no longer look for a facility to meet our needs.  That will help me make the decision more concrete.   That is that.

Hallucination and other unexplained issues

I have hallucinations.  That is, I see things that others don't.  Like a horse in our back yard or a man walking across I-110 in traffic.  There are others but you get the idea.  They tell me this is "normal" for LBD patients.  I also have issues with people following me and coming into our home ant taking things!

I do't remember if I wrote about being follower or not,  That incident was a while ago.  But recently, things have been disappearing from our home.  For instance, a can of coffee, stored in the bottom of the pantry came up missing.

Now, I drink coffee like a Sailor!  Of course, that is OK because I am a Sailor.  I keep track of my coffee supply and I know that can was there.  But, when we got home from the Commissary, it was gone!  Did I hallucinate that can of coffee?  Not in my mind.

The statement goes; "Just because I am paranoid, does not mean people are not out to get me."  Well, just because I have LBD does not mean I am not being followed or that someone is not coming into our home and taking things!  But, like my acquaintance at the rec center says; "They say I have hallucinations!"  I agree with Andy.  I was followed on that day and that coffee was there before we went to the Commissary.   I just need to figure out who is messing with me.

Sunday, March 9, 2014

Disagreements, outbursts, and decisions

Maybe it will be easier when I am no long able to know or convey my desires.  Maybe it will be able when I don't care where I am or what I do.  Maybe things and people won't bother me when all I care about is sleep and ice cream.  But now, I still have opinions, desires, opinions, and emotions.  There in lies the problem!

Things upset me that never did before.  Now if you have known me for a while, you know I used to have an explosive temper.  I used that temper for good and bad.  Then, God taught me to control my temper, harness my emotions, and he taught me to love people.  For many years now, I have seldom lost my temper.  And each time I have, I have been ashamed of myself.

Now, LBD has taken away my social filters and I find myself unable to control my temper.  My outbursts are more frequent and more severe.  And while it is still not to the point of violence, I find myself more and more angry about things that should not upset me at all.  This concerns me more than anything else.

Last night, I lost my temper over an issue caused by our poodle getting under foot and tripping my wife.  I exploded!  Soon after I went to bed to brood and try to recompose myself.  It was 8PM.  When I got up this morning, I was only slightly better.  We went to Church but I admit I was very tempted not to go.  Church helped and the day progressed with me getting somewhat more in control and the gloom seemed to pass.  But the gloom returned this evening.

I have written before that I am unhappy with where and how we live.  But I would be hard pressed to select another place.  I do believe we would be better in a Continuing Care Retirement Community.  But the only one in our area is full!  We are on the waiting list, but it is not moving.  We saw an exceptional CCRC in Spanish Fort Alabama last Friday.  I believe it is perfect.  My wife disagrees.  I will not overrule her.  So, we wait and I stew.

We continue to try to make friends and establish relationships here.  But these people are unfriendly and clannish!!  We don't have a southern accent, so we are outsiders!!  Rednecks!  If they only knew us, they might change their mind!   But, since I think "Tar" is what you pave side roads with and not the four round things made of rubber on a car, we are outcasts.

My wife is a Saint.  She has a full plate, and I truly try not to add to her stress.  But it is hard when my desires conflict with her plans.  Maybe things will get better when I get worse.

Wednesday, March 5, 2014

To institutionalize or not, and when?!

OK, this is totally from my perspective.  I am still a fairly high functioning LBD patient, that is, most days and only during the daylight hours.  I have explained that nights are my worst enemy and that some days are not too good either.

I have also commented on the stress I see my wife and caregiver going through.  I see her frustration and disappointment.  I experience her anger and rage.  She is going through Hell with no outlet.  Yes, she has some Bible studies that she enjoys.  But she comes home to the reality of my disease.  I understand that is unrelenting and difficult, at best!

So, the question comes to mind, she is the right time to institutionalize a LBD patient?  I just read a post on the LBDA.org Community Board about a child trying to help a parent with LBD.   Their decision, based on the fact that their Mom was still fairly high mentally functioning, was to keep her in their home.  My question is, what do you do when she has her bad times?   Or when she gets worse?  Is making a good decision when the patient can participate in the decision better than making a hasty decision when her condition get bad?

There are times that I think, at least for me, that I would be better in a facility that limited the outside interference in my life.  A quiet place that would not agitate me.  A place where I could close the door to my room and be alone.

Also, there is the issue of finding a facility when you are at the "Amen" moment of a parent you can no longer take care of.  Where do you go then?  You are at the mercy of the system.  Rooms available, quality of care, tie to search for a facility, ll close in on you when you wait until the last moment.  No, I want this decision made when I can participate in it!

A continuing Care Retirement Community meets this need.  A facility with memory care and assisted living that are on site, with a reservation ready for you when you need it.  Also, what about respite care?   My wife may need a break from time to time.  Maybe a trip to a family reunion.  There should be a way to make life easier for her!

Now, the search for a CCRC that will take someone already diagnosed with LBD is a difficult one.   Many will not take you if you already have a diagnosis.  But there are some.  And the time to look is when you still are early in the early stages.

We are on the waiting list of a local CCRC.  But that list is not moving, so we are looking at others also.  The key here is, look now!

I am ready to be in a facility that has the capability to meet all of my needs and my wife's needs.  For instance, if she breaks a hip, who will care for her, and for me? I cannot do my own meds now!  Well enough keep track of her meds.  I can cook, but going out for food is a non starter because I am not supposed to drive alone!  But, a CCRC would meet our needs for the convalescent period for her injury.

Obviously, I am firing on most cylinders mentally right now.  However, a few days ago, I was not.  You may remember I soiled my skivvies and had other issues related to LBD.   And my short term memory is shot!  I also have the issues of hallucinations, REM sleep disorder, and a little wandering.  So you see, in my mind, a little assistance would be nice.

I am ready for the next phase of this disease and ready for the next level of care.  WE just need to find the right place, in short order!

Monday, March 3, 2014

Family relationships

As a Christian, we should live our lives in a manner that is pleasing to God.  We should strive to be as "Christ Like as a redeemed sinner can be."  The goal being, hearing these words from God when our days on earth are done;  "Well done, thou good and faithful servant."

The most difficult challenge we face is how we deal with our immediate families.  All of us have been angry at our parents.   That anger started at a very young age.  Mom and Dad had rules we did not agree with.  Bed times, chores, don't stand on the dinner table, don't sass me, and curfews, are just a few that come to mind.  Yes, there were rules like, go to school, or get your grades up, or later in life, how are you going to pay this speeding ticket.

Mom and Dad's rules were not there to annoy us, although they did. The rules were there to teach us life lessons, help build our characters, and most of all, to act as a guard rail to keep us from going off the road.  Still, some of us DID go off the road.  We did things that made our parents cringe!  And they got angry at us.  Why, because they love us, know we can do better, and want what is best for us.

Now, look at the relationship between adult children and elderly parents.  Many times, the parent is suffering form a log term disease like diabetes.  You as the child know what is best for your Mo or Dad.  No donuts!  No ice cream.  But Mom and Dad still want those taste treats.  And you get frustrated with your Mom or Dad.  Why, because you want what's best for them, you love them, and you know they really can do better with their sugar management!  Sound familiar?

I said earlier that, as Christians, we want to hear God say;  "Well done though good and faithful servant.  As a parent, do you know what we long to hear from our children?  Mom, Dad, you were right!  Thanks for being there for me.

You only get one Mom and one Dad.  Since they are older than you, they will, in most cases, die before you.  When that happens, you realize just how alone in this world you are.   Take the time to love your parents.  So what if they still try to steer you in the right direction.  That only shows they still care!