Saturday, September 30, 2017

The HIGHS and lows of LBD

Today, I have experienced the HIGHS and lows of Lewy Body Dementia.  Azalea Trace has celebrated Active Aging Week and there has been some wonderful activities all week.  Today, we had Hot Air Balloon rides early in the morning, right here on our campus!   I have never ridden in a Hot Air Balloon but today,  thanks to Azalea Trace we got to experience Hot Air Ballooning.  Yes, it was a tethered ride, but we still floated with only the power of heated air!  We were high enough to look over the stately tree tops and see the Escambia Bay!!  It was exciting and exhilarating!   But the remainder of the day has been depressing and difficult to walk through.

The experience of this morning brought back many memories of the exciting and dangerous things I did during my Navy career.  It all was brought to the forefront of my mind, and those thoughts have illustrated to me that I will never do anything like that again and that my life is drawing to a close.  That does not bother me but it is something that is difficult to deal with and I am not really sure I am dealing with it very well.  I miss my Navy buddies and the camaraderie of those friendships.  I miss not being able to go places, drive, take care of my own issues, like haircuts or clothes shopping.   I miss being independent, capable, and in charge.

I have come to understand Pensacola is my final destination.  It is the last place I thought I would end up, but not the worst place to be.  Right now, the emotions of the day have overwhelmed me and It is time to retreat to the safety of my bed.   Maybe I will address this more tomorrow,

Friday, September 29, 2017

A discussion with my wife

We went to to Long Horn lunch today.  I have been trying to get my Wife to eat at Long Horn Steak House for a month!   She agreed today and we had a great meal.  We also had a discussion about my LBD and how she is dealing with it.   Now remember, my social filters are not functioning!  I was talking about the Memory Support Group and how some of the spouses do not take advantage of the information available about the different dementia's.   I then told my Wife she was not taking advantage of information I had discovered and made available to her.  She then told me this;  I want you the way you were, while understand you need to be comfortable the way you are!

That was an eye opener!!  She brought back to my memory how my Dad reacted to my Mom's end days, suffering with Cancer.  He would say;  "All she needs to do is get up and walk around the block,  Ten she will feel better."   My Wife told me, my Dad did not want Mom to be sick and that was his way to deal with it.   She also said those of us with Dementia are each different just as all caregivers are.  I agree with that.

But I do not understand why a Spouse would not want every bit of information about the disease their spouse had, and then use that information to make the Spouse's life easier, more comfortable, and better.   Denying the fact that the Spouse has a disease does nothing to help that person.  It may make the Caregiver Spouse feel better, but that seem selfish to me.   But, I am not the caregiver.

LBD, and all Dementia's are a tough, confusing journey for both the patient and the caregiver.  I believe the more factual information both people have, the better both people will be able to deal with the disease.  Of course, I could be wrong.

Wednesday, September 27, 2017

The confusion and disorientation continues

Today, while my Wife was at her weekly Bible Study and I was home alone, I was gazing out our patio doors and all of the sudden, I was wondering why the cars I saw did not have front license plates!  Virginia has front license plates and you can get a ticket if you don't have a front license plate!!  Then, it came to me that I was in Florida and not Virginia.   The question then became;  How the Hell did I get to Florida!!??

I spent quite a few minutes contemplating that question.  Then, I realized we lived in Florida.  Things are getting confusing, at least sometimes.

Monday, September 25, 2017

I am not in the present!

All of my conversations revert to my Navy life!  I never get involved in any conversation about events of today!  I can change the topic and flow of any conversation to my Navy life!  Today, does not exist in my mind!!   As a matter of fact, I am not interested in the events of today!

This is not abnormal for Dementia patients, but it illustrates to me, and anyone who cares about me, where I am in my LBD journey.   I am comfortable with my memories and experiences from my 40 years with the Navy.   I am uncomfortable with today's events and I don't like the culture of today's America or the World in general.  So, instead of dealing with things I dislike, even hate, I regress to where I am comfortable,

From what I have learned, this will progress even more.  I am OK with that.  As a matter of fact, I welcome it.  Those around me may not like it, but, that is there problem.  I am a the one with LBD!

Friday, September 22, 2017

The impact of a long term disease on those around you

In the beginning, people I knew were shocked, upset, even sad about my LBD diagnosis.  Now, in many cases LBD is a slowly progressing disease.  Especially with the new drugs that are available If and ONLY IF they are prescribed very early which my Neurologist in Norfolk, Virginia did.    And you should also know that LBD is a cyclic disease.  Ups and downs, that occur in an unpredictable manner.  Then there is "Showtime" that occurs when people not normally in the LBD patient's circle are around.  During "Showtime" episodes, the LBD patient seems "normal".

All this being said, it has been 5 or more years since my early diagnosis and people treat me very differential now.  They seem aggravated when I mention my disease as if they are very tired of me and LBD.   People expect me to have all the stamina, mental acuity, attention span and capabilities of someone without LBD!   When situation overwhelm me, they are annoyed!  Even angry and disappointed with me.  They want me to do things and be in situations that overwhelm me and tire me out quickly and leave me wasted!

I realize it must be frustrating to those around me to look and me and believe in their mind I am not sick!  But, they do not see the total picture.  They have watched me slowly deteriorate so they do not realize it is occurring.  For instance, no one can tell me when my hair turned grey and then white!  It just happened over a long period of time.  Well, that is how LBD has robbed me of mental and physical abilities.

Today after some running around doing some financial things, we w net to the commissary.  My wife likes to keep bottled water around.  We bought a 24 bottled case of water and I cannot carry that any distance at all.  That fact escaped her mind.  The fact that I had to get a cart to take our small grocery load to the apartment was just not in her mind!  She was frustrated with me.  Much like my previous post, she forgets I am impacted by LBD and wants me to be "ME".   When I am not "ME" she unconsciously gets upset.   It is not her fault, it is a normal reaction to a situation she hates.

But, like I said in my last post, these episodes take my DIGNITY from me.  I am reduced to someone who is worthless!

Patience for the LBD patients spouse, family member,  or caregiver is the most important quality!!  Compassion is nice, but patience is mandatory!

Monday, September 18, 2017

Advice for Caregivers and Spouses

Many of you know I spent 40 years with the United States Navy.  I was the Force Master Chief of the Surface Forces, Atlantic Fleet, a Command Master Chief of a Destroyer and an A-6 Air Squadron, Leading Gunners Mate on numerous ships.  The Gunner's Mate Detailer, and Instructor at Gun School, Great Lakes.  As a Civil Servant for the Navy, I was a Gun Mounts and Turrets Tech Rep, The Gun Systems Replacement Manager, the Programs Branch Head, the Search Radar Branch Head, and had numerous collateral duties of note, like the recovery of the USS Cole and the repair of the MCM's in Bahrain.  Needless to say, I had a very impressive, responsible, productive, Navy Career.

Now, my cognitive skills are not what they used to be and it shows, everyday.  The challenge for the caregiver or spouse is to NOT treat me like a mental midget!  A more correct way to express this is to say;  Spouses and caregivers should respect the Dementia Patients DIGNITY!  

I try, everyday, to be helpful, useful, and productive.  If I am asked to do something, I do it to the best of my ability.  And, although what I produce, write, make, may not be grammatically perfect, written the way you would write it, or done in a manner you would have, please don't redo what I did.  If you do not want to accept what I do, don't ask me to do it!   This treatment causes me to be angry, resentful and to withdraw from all contact!

Telling me I did not meet your expectations, through your actions, facial expressions, or comments, does nothing to make me feel useful or wanted.  Instead, those actions invoke feelings of uselessness and give me the idea I am not wanted.

Does this sound a little sensitive to you?  Well, I am sensitive.  I was a powerful man, able to do things most of you can't even imagine.  When I said things, brought forth facts, and made decisions, high ranking Navy Officers and Civilians listened and most often acted!!  Now, it seems there is nothing I can do right and no one that listens to me.

I have lost my Personal Dignity!

If you are a caregiver or spouse of a Dementia Patient, read and heed!

Saturday, September 16, 2017

Saturday night update

As I said in the last post, the MRA showed all was normal as far as the blood flow in my brain.  That was wonderful news.  As the lower dose of Effexor takes hold, it seems my headaches and BP are decreasing, very slowly.  I have dealt with a "Boil" on the back of my neck for 11 days, that required medical attention every other day.  They took my BP each time and except for one day, it was in the 139/90 range.  That is better tan a few weeks ago.  I still get short, intense headaches when I cough or sneeze.  But, all in all, I think things are going in the right direction.  I even went and played Pool last Wednesday.  The first time in at least three months.  I consider that good news since I have been pretty much anti-social for a while.

This may be one of the signature LBD positive swings I have experienced since I was first diagnosed.  I have learned to appreciate these respites and fear them at the same time, because they always lead to a big downward turn!  But, I will enjoy the good times while they are here.

Tuesday, September 12, 2017

MRA Results and other issues

Yesterday, I had an MRA to see if I had any vascular damage in my brain, possibly caused by high blood pressure.  Praise God, there is no aneurism or arterial weakness detected!  While I was not worried, I was concerned.  I can honestly say, it is only God's providence that has kept me through this disease.  That being said, what next?

I asked my neurologist to address the high BP issues.  I do not want to increase my Effexor dosage so some sort of BP med seems to be in order, on my mind.  I truly hate what Effexor did to me and I blame that on the so called neurologist  had when I first moved to Pensacola.  He elevated my Effexor dosage much higher than necessary.  I trusted him and He violated that trust.  Never again!

On other issues, I am still dealing with this "Boil" issue.  I still have a drain in the incision and while it is decreasing, it is still draining.  Having the drain reinstalled every other day in painful and annoying. Hopefully, tomorrow will be the last visit for this issue.

Evenings are getting more difficult.  Noise causes agitation and anger in increasing volume.  More and more, television viewing is bad for me most of the time.  Loud commercials seem to dominate television.  News programs are mostly commercials and inane dribble.  Local news is nonexistent her in Pensacola.   I find myself in bed, earlier and earlier.    Bed is my safe area.

I hope the headaches decrease soon.

Wednesday, September 6, 2017

The Azalea Trace Memory Support Group

We started a Memory Support Group here at Azalea Trace about 6 months ago.  It is made up of individuals that have a dementia or some dementia symptoms.  The basis of the group is self-support.  We discuss our symptoms, how we are dealing with those issues, and get feedback from other group members that either have the same issues or are earlier in their Dementia journey and want to know what the future may hold.  We have had a number of Health Professionals meet with us to educate us on Dementia issues and related health issues like choking, falling, exercise. 

Today, our group had a luncheon with the new Director of Azalea Trace, Ms. Tammy Hardy-Farber has extensive training in Dementia care and is very up to date on the new care methods!  She gave us some information of the new construction of the extension of our Skilled and Assisted Living facilities.  Both of these communities will have Dementia Care Communities.  This is exciting news and very much needed.

I love the fact that our Director and all of the Staff here at Azalea Trace support or Group.  Tammy especial cares about Dementia care since Her Father in Law died of Alzheimer's.   She is a visionary in Dementia care!  We are truly in good hands!!

Tuesday, September 5, 2017

Another health issue

The last couple of weeks I have been dealing with "Boils"!  I have not had a Boil since I was 6!  I have terrible memories of my Mom lancing my boils with a razor blade.  No Novocaine!   But, today, we went to the Urgent Care facility to have this Grande Boil felt with.  Naturally, that meant lancing it.  Needless to say, it was brutal, even with Novocaine!!   The Doctor pressed so hard on the Boil to get some of the stuff out that my neck muscles are sore!!  He told us "Boils" are very common in Florida!!  Who knew?!  I bet the Tourist Association does not include that in the "Come to Florida" brochure!

And, to add insult to injury, I have to go back tomorrow morning to have the "Packing" changed!!