Thursday, January 25, 2018

More on the reason for my move to Assisted Living

I have written about my increased issues with agitation and anger.  The recent, very public angry outbursts have brought this issue to the forefront!  If you do not know me very well, let me give you some background.  I was a Master Chief Gunner' Mate in the United States Navy.  A warrior, and a person in charge of every explosive device on a Navy ship.  As I used to say, I was responsible for and work on everything from a .22 cal pistol to Nuclear Weapons.  As I promoted from E-1 to E-9,  I was mentored by men that were "Old School" Navy Chiefs.  I was taught and expected to know what I was doing, be able to technically prove I was right, and never, EVER,  back down!!  And that is exactly how I was for over 40 years.

When we discussed the move with our Son, I said I was having issues with angry Outbursts.  James said: "You have always been subject to angry outbursts!"  He is right, when something was wrong in my estimation, I let everyone know, in no uncertain terms!

The difference is, then, I controlled that anger and dispersed it based on the severity of the issue that was wrong and the audience I was addressing.  Otherwise, I used my verbose, loud, bombastic, personality, to my advantage in any situation!!  Now, I do not control that anger and I do not control the way is is used.  Little, inconsequential things cause me a big an explosion as a really important issue.  Then, there are issues I perceive  to be wrong, but are truly not!!

Te danger of this is, and the reason to move to an area where there are professionals trained to deal with my issues is, one day, my anger will elevate to violence.  It did before LBD and it will now.   This is very difficult for me to put in print, in the public domain.  But, I must be honest in all that I experience.   And while I have not felt my anger boiling to violence, I have to recognize that is may in the future.  Forewarned is forearmed.  

So, I know the move to AL is good for me, my wonderful Wife, and all that live in my community.  Enough said.

Vision Issues

My eyesight has suffered in the last year or so.  I had depth perception issues that make hallways look like tunnels and things look very close to me.  When I am riding in the car, in the from seat, I jump and yell as my wife pulls up to a stop light!  It appears to me that she is WAY too close to the car in front.   She calmly tells me; "I have this."

The other, peculiar thing is print media looks very small to me.  I have difficulty reading and on the computer, I enlarge the print.  My hand writing, which was never very good, is now small and almost unreadable by even me.  I put things on the shopping list we keep on the refrigerator and my wife has great difficulty deciphering my hen scratching.  Of course, I seldom remember what I meant when I wrote the request.

I am reticent to see an eye doctor because, here in Pensacola, the people in the Medical field can't spell Lewy Body Dementia, well enough treat it!  And, there is probably no treatment for this issue anyway.  

Hallucinations persist

I have not written about my Hallucinations lately because they are almost always with me.  They have become a normal part of my New Normal, so I just don't mention them.  But, I had a couple in the last couple of days that were interesting.

It has been cool here in East Lower Alabama.  How cool?  Some recent night have been in the low 20's with day time highs in the 50's.  Trust me, I am from Cleveland, Ohio.   That is SPRING  weather for some of us!  But here in Pensacola Florida, the local think the sun died!  But it is cold enough to have the reptile community in hibernation.  But, in the last day or so, when my Wife and I were walking out to the car, I saw a snake scoot around the curb cut just in from of us.  No, I could not identify the species because it moved too fast,  But, it was about 18-24 inches long, brown, and about an inch in diameter.   I know the snakes are sleeping, buy my hallucinations do not!!

I have also been revisited by my touch hallucinations.  The last couple of nights, after I settle in bed, and Zeus the Wonder Chihuahua is settled right next to my hip, I feel something walk across my feet on top of the covers.  Might be that snake I saw looking for a warm place to sleep.  But I did not see anything, just felt the weight and motion of whatever it was.

Do they bother me?  No, not really.  The touch events have been mission for a while so their return surprised me.  But, now it is no big deal.  More later.

Decision making is HARD!!

I have written before, I was a Navy Master Chief in the Weapons and Ordnance community (GMCM). I made life or death decisions everyday.  When I retired, I became a Civil Servant working for the Navy at a Command that provided on site technical assistance for every system on every ship, submarine, and Aircraft Carrier, worldwide.   In that capacity I managed a multi million dollar budget, made high level technical decisions and lead 20+ professionals.  I was a decision maker in high stress jobs for over 40 years!  I considered what I did easy.   Now, making any decision is almost paralyzing.  If it were not for my wife, I would be unable to decide almost anything.  

I wrote that we decided to move me into AL.  There have been a few "bumps" in this decision,  Some unexpected costs.  And those "bumps" have caused me agitation, anger outbursts, and depression.  She has helped me deal with these issues, but there is always the underlying thought of; Am I doing the right thing?  My wife now believes we are doing the right thing and our Son and Daughter in Law agree.  Even our Grand Daughter in Law who is very caring to us and very intone with medical issues since she is training to become an RN, believes we made the right decision.  But my decision making abilities have been compromised and I always question my own decisions.

Yet, when we visit AL and look at my room being remodeled, I have a sense of contentment.  I guess I just need to visit the room more often.

Saturday, January 20, 2018

The STIGMA of Assisted Living

We live in a wonderful CCRC.  There are many folks here that truly need to be in Assisted Living (AL) but will not move because they have preconceived notions about AL.  So, they live in Independent Living, sometimes paying out of their pocket for Home Health Care, when the same or better services are available in AL for free because they live in a CCRC!  There are also some individuals that should be in Skilled Care but refuse to move so they pay, out of their pocket, for 24 hour care n their Independent Living apartment.  That makes no sense to me.  But people have issues about moving to a higher level of care.  What issues, I can only guess.

Most people do not educate themselves about what health conditions they have and how AL can extend their lives and extend their enjoyment of life.  Where we live, there are more electric scooters and rollators in use in Independent Living that there is in AL!!  That is curious.

I am moving because all of the studies support moving a Dementia Patient to AL or Memory care when the patient is still has enough cognitive ability to understand and participate in the move.  There is less mental and physical shock to the patient if he or she takes part in the move including room selection, furnishing and decorations.  I am actually excited about doing this.

Another issue is that caregivers need respite!  Living with a Dementia patient 24/7/365 and being the only person caring for that patient takes it's toll, FAST!! 

Here at Azalea, I will be able to freely move between AL and Independent Living.  My wife can stun overnight in my room if she desires and I can spend an occasional night in our apartment with her.  She can eat in AL with me or we can eat in the Independent Living dining room.  Or we can go out and eat!!  These freedoms makes the transition easier on both of us.   When I am having a difficult time, I can stay in my AL room and have the care I need and m Wife has the freedom to rest and know I am well taken care of.

But, some people have this negative stigma about higher levels of care.  Again, I do not understand why, I just know it is there.  I hope my move will help erase some of those erroneous pre-conceived notions.  

Thursday, January 18, 2018

Decision Made!

We live in a wonderful CCRC community!  The management here at Azalea Trace, an. ACTS Retirement community, is very responsive to our needs.  We met with the Director of Assisted Living today and he was all ready to help us!  Now in truth, he sees me every week when I conduct the memory Support Group in new the Assisted Living Recreation Room.  The staff helps me, makes sure I have coffee, and treat me with loving kindness.  Also, to me totally transparent, I ran in to our Executive Director the other day and she asked me how I was doing.  I was honest with her and she said, let me know how I can help!  And today, when Linda and I me with the Director of Assisted Living, he was ready to do whatever it took to help us.

But, to the point.  We were offered a one bedroom suite so that both of us could move to Assisted Living, but that would not meet our needs.  Linda does NOT need AL.  And I need a place to cocoon, alone.  The Director explained that I could move back and forth between out apartment and my AL room, as I wanted.  And, my wife could stay in my AL room, sleep with me, and spend time there.  So, after an afternoon of discussion, we decided to take the singles room foe me and keep her in the One Bedroom apartment we now share.  The best of both worlds.

If I predecease her, no issues, she is still in our apartment customized as we wanted it and as we PAID for it!!  And, on the outside chance that I would omit live her, I would be exactly where I should be.

So, the decision is made.  We will tell the AL Director tomorrow morning.  Thanks Azalea Trace!!  You have given us  peace of mind!!

Monday, January 15, 2018

People I would like to punch in the nose!

See, I told you my LBD was getting worse!!  I am actually writing about how difficult my anger issues are getting.  However, people that tell me I am not sick, or a Doctor I go to Church with who says he does not see any LBD symptoms in me, need a punch in the nose!!   For instance, read the symptoms listing from Dr. Galvin or from LBDA.org and then look at me with your eyes open, and yo will not make stupid statements.  But, as I have said before, there are few if any competent Doctors in Pensacola!!   And any Doctor that made a career of the Military was NOT a good Medical Practitioner.   Trust me, I knew many doctors and dentists in the Navy and the good ones got out when their school loans were paid back.  Why, because after pay grade O-3, they are administrators and not practicing, hands on, doctors.   And the quack at Church retired from the Navy and went to work for the Veteran's Administration!!  And you probably know the VA is not a repository of medical professionals!!

So, since my agitation and anger issues have increased, the emotions that I fight when people treat me with such little respect really fire me up!  Will I punch someone in the nose for telling me I am not sick?  Not yet!!  And I hope I am in a higher level of care before I get to that point.

How agitation turns into an angry outburst

I think I have written about how agitated I have become.  It is normal for where I am in my LBD journey.  I have been trying to understand how these angry explosions happen and today, I cam up with a very accurate analogy.

If you ever had stomach flu, you may remember the feeling of a vomit attack approaching.  You felt that feeling begin in your stomach.  It grew in intensity, and you ran for the bathroom!  The pressure expanded and you could feel the product of your pain begin to travel up your throat.  Then BANG!!    Vomit everywhere!!  There was nothing you could do to stop the deluge!   Them thankfully it was over.  But your throat burned, and you felt even worse than you did before your threw up.

That is how my agitation turns into an angry explosion.  I feel the anger begging to expand and as it expands I know what is going to happen, but I cannot stop it or control it!  Then BANG!!  I have said things I did not want to say, offended anyone in hearing distance, and I feel worse that I did before it began.

Now you know.

Thursday, January 11, 2018

What is REAL and what is NOT?

I have been having thoughts and dreams that start out as random and then become real, and then I become obsessed with them and have to flesh them out!!  Some times, I am able to determine the issue I am tracking down is no more than a thought or a dream that I had and it is not real.  But, that realization is coming much slower now.  I have had this issue for a while but it is becoming more intense and more real to me.  I know I am sliding down the path of LBD, faster and faster.  But things like this are beginning to frighten me.  There are a number of "What If" issues that bother me about these thoughts and dreams that become "real" to me.

Wednesday, January 10, 2018

Family and Friends Frustrations

I remember very vividly, when my Mom was about to die.   My Dad would say; "If she would just get up and walk around the block, she would be OK!"  Of course, the cancer and the ravages of the Chemo and Radiation therapy of the 1970's were invisible to him and us.  But Dad saw her as he wanted to see her,  He wanted her to get better and get back to a "normal" life.  Of course, that was not going to happen.

Today, my Wife, Son, and many friends and acquaintances treat me the same way.  Now, I am not addressing the MORONS that say I am not sick!  Including an supposed MD I go to Church with.  No, I am addressing people that see something is wrong but they want me to be as I was.  So they treat me as if nothing is wrong, expecting that to make me better!  That is a noble attitude, not giving into a disease.  But it is also very frustrating and maddening to me!

Another frustrating issues is when people that KNOW I am NOT doing WELL continue to do things that aggravate me even after I have told them numerous times, that action or habit DOES AGGRAVATE ME!!  Get a CLUE, would you!!   I will give you an example and I admit it is a silly issue but it drives me up the wall.   Every time I get woke up, by the dog, the alarm, or just wake up, and my wife is still in bed, the first thing she asks me is; "What time is it?"  First of all is, we do not have a lighted clock in our room because she demands total darkness,  Second of all,  how the Hell do I now!??  I am in the same dark room you are!!!  Third of all, What difference does it make?!!   I have addressed this issue a number of times, to no avail.

Look, I am not going to get better, I am getting worse if you would just look and see.  All of your trying to make me better just makes me worse by aggravating me.  And while I am complaining, no.  never mind.

The bottom line is;  Running around the block will not make me as I once was.  Those days are gone.


Wednesday, January 3, 2018

Progress update

Yes, almost every post I write is an update on how I am doing.  But, I have become involved in a Facebook page sponsored by LBDA.Org where I have posted some issues I have not addressed here.  The Facebook page is a closed group for LBD patients and their caregivers.  It is very informative and very helpful because I can get replies from someone going through what I am.  But, I also want to keep those of you who don't do Facebook up to date.

My LBD journey was fairly gentle up to now.  Yes, there have been some downturns that caused me issues, but I have always been able to adjust to the "New Normal"; until now.  Recent issues with angry, emotional, uncontrollable, outbursts have left me wondering about the next "Act" of LBD.

Twice, in the last month or so I have blown up over seemingly minor issues.  Today was the day we planned to take down the Christmas Tree in our Lobby.  The storage boxes were supposed to be there, magically appearing from some hidden storage area.  But, they were not there at the planned time.  I went looking for someone to tell me where the magical boxes were.  No luck.  My Wife is a bull dog when it comes to things like this and everything MUST be done on time, in a controlled, precise, manner that she directs.  So, it became my responsibility to locate the magical boxes.  A long time resident knew where the boxes were stored but she did not know where the keys were.  So, she and I went to the basement and found the secret storage area.  The lock was OPEN!!  So, we retrieved the boxes and headed to the elevator back to the first floor lobby.  This is where things got bad.  There is one elevator that goes to the basement.  Two others that go from the first floor to the sixth floor.  It seems today, the elevator that goes from the basement to the sixth floor was commandeered by morons!!  One of them was a person, living in Independent Living that should be in skilled care because that individual cannot walk, move without an electric chair, or reach the elevator buttons.  And this invalid lives on the sixth floor!!  I can't wait for the fire!!  In any case, this moron took the elevator to the basement to get some one to push floor SIX for him!!!  In any case, we waited 20 minutes for the elevator to get the boxes to the first floor lobby to take down a Christmas tree!!!  By the time I got the boxes to the Lobby I was EXPLODING!!!!!

My wife, who knows me and what I am going through, gently directed me to our apartment to cool down.   She really handled me very well and I appreciate her because she save me from further embarrassment.  You see, the "Landed Gentry Elite than live here do not know about Lewy Body Dementia, so, I obviously do not have it and I am a liar!!  And since I was ranting and raving like a lunatic, throwing my cane across the lobby, I ended saving from myself!

It makes sense to note here that recently, I have been thinking I did not need , note did I want, to move to Assisted Living.  After my blow up, I thought;  I really drove a nail in my Assisted Living coffin!!

In any case, things are getting worse for me and I am having great difficulty dealing with this recent massive downturn.  LBD has finally thrown me a pitch I cannot hit.  I give up!!  I realize I need to be in the quiet, controlled environment of Assisted Living.  I cannot deal with people and all of their issues, agendas, ignorance, and opinions.  I am finally in total control of LBD.