Monday, September 29, 2014

We passed the test!

Today, we passed the cognitive ability test at Azalea Trace and we are officially under contract as Life Care Residents.  This means, whatever health or mental issue occurs, we are taken care of by the facilities at Azalea Trace.  Of course, they do not have a hospital, but full rehab facilities are there as well as skilled nursing, assisted living, and memory care.  We will be in the Independent Living portion of the community.

As we walked around and ate lunch today, I could not help but be amazed at the number of people that came up to us and introduced themselves. As you know, this has not been the common practice we have experienced here.  We ate lunch with a very nice couple that have been residents for a year.  The Husband told me, he has never regretted moving in there, as he enjoyed his custom made chocolate soda for desert!!

The Cognitive testing was administered by the RN that oversees all health care.  She was very pleasant and interested in us.  I enjoyed her.  Which is good, because her office is right next to our apartment.

Wednesday we meet with the head of Facilities to pick all the remodeling things for our apartment.  Colors, cabinets, flooring, moving walls, bathroom fixtures, everything!  That should be fun, until I have to pay for it,  But, it is our home.

I even met with the Staff Chaplain.  He offered me Pulpit time already!  Seems he needs some Sunday relief ever once and a while and he has had no one to depend on! It was nice to be wanted again.

So, today was a good day and we feel good!  More later.

Friday, September 26, 2014

I do not react well to stress

As I am sure you know, we are in the middle of the approval process to move into Azalea Trace, a continuing care retirement community in Pensacola.   If all goes well, we will sign our contract for occupancy on Monday.  Before that, we meet with the nurse and go through a cognitive skills test of some magnitude.  We have been assured by the staff that we will be admitted.  We did drop our medical screening reports from our doctor off today.

The next step will be to select the changes that we want made to our apartment.  We are not planning anything to drastic.  But we are going to move a wall to open up the kitchen.  Our tentative move in date is the first week of December.  So, things will begin to move quickly after Monday.

We have to sell our home, liquidate some furniture, and other home items including some larger kitchen equipment.  We will eat our main meal in the dinning room of Azalea Trace so we do n to need all the kitchen equipment required to prepare a meal for a Cruiser size ship's crew!!

Today, we went to the credit union and moved the money required for the down payment of the Entrance Fee.  We than will have to pre-pay the cost of the renovation and then, before we move in, pay the remainder of the Entrance Fee before we move in.

All of these events, issues, financial decisions, decorating decisions, have me stress and upset beyond belief!  Change is difficult for me and this will be much, much more difficult than the move to Florida three years ago.  While the end product will be good for me, the next two months are going to be tough.   I find myself getting angry and stressed whenever we discuss these issues.  My wife has to deal with these issues and she does good with me.  But I know my reactions stress her too.

I have an appointment next week with my neurologist and I am going to ask for some meds to help me deal with my anger and stress.  He has said before he could help with these issues and I am now ready to let him help me.  So, I will be adding another medicine to my daily regimen.

Living with this disease is challenge without any changes in my life.  With changes, I am overwhelmed and much more effected by my anger and stress.

Thursday, September 25, 2014

New OLD issues!

I was doing some research on the Autonomic issues caused by LBD.  I have had and written about a number of these problems that I have encountered in increasing amounts.  Inability to control body temperature, urinary and bowel issues, and even vision issues.  But, today I learned about two that I did not know about.  First one is irregular heart beat.  Now, I was diagnosed with that a while ago, but was that caused by the LBD or a heart issue?  I cannot say.  Then there is the fainting!  I have had issues with the room spinning, getting dark, and me passing out or almost passing out, ever since the beginning of this disease.  Now I learn it may be caused by my Autonomic system not being able to control my Blood Pressure!    It is already documented that my BP is erratic.  But now I know, or at least strongly believe, that this is caused by LBD!

These are important symptoms to understand.  They also let me know what parts of my brain the Lewy Bodies have effected.  But it also causes me concern.  I have passed out and get very light headed very often.  What is that going to become?  And, during my recent hernia surgery, the doctor asked me when I woke up;  Do you have an irregular heart beat?  Obviously I do and now I know why.

As a person with LBD, I have found out that the research into what this disease causes and effects is up to me!!  Most doctors, including neurologists, can't even spell Lewy Body Dementia!  It's true, I have had to spell it for doctors before!!  So, discovery is up to me.  Which means, it is up to YOU if you are a caregiver or person with LBD.

This truth is sad, if you think about it.  But it is the TRUTH!  So, arm yourself with reliable information before you see your doctor or have to go to the Emergency Room.  It may save your life!

Tuesday, September 23, 2014

Anger comes out!

Today, we had to go get my wife's medical exam for our pending admission to the Continuing Care Retirement Community.  After that, my wife recommended we get a haircut.  The lady who cuts my hair cuts my Wife's bangs also.  She does a good job, but she is set up in a women's beauty parlor with all the ugly smells of those places.  I know because my biological Mother lived behind a beauty parlor and I lived with her for about a year.  That is another story, but suffice to say, I got myself in a lot of trouble because she worked until 2AM every night!!

In any case, the barber was taking a long time with the fellow before us and after she was done with the haircut she was doing smart phone training for the idiot she had just barbered!!  After ten minutes of this foolishness, I stood up and asked her, loudly, are we cutting hair or selling cell phones?!   She told the patron I was kidding and I convinced these two fools I was certainly NOT kidding!!!  The fellow slinked off, apologizing to me.  I did not accept his weak apology.  I would rather have kicked his but!  Then my wife sat in the chair for her short trim.  I was in a seat, around the corner from where the barber chair was, so I could not hear their conversation.  The barber told my wife;  "It's OK, I understand, my Mom has dementia too."

It was nice that she understood and my wife appreciated that.

Earlier in the day, at my Wife's doctor's appointment, a topic, I will not divulge, that is very emotional for me, came up.  I exploded loudly in the doctor's waiting room!  I walked around outside of the office while my wife had her appointment.  I was calmed down by the time she came out.

The point here is, I am loosing my control of my temper!  Thing that aggrieve me or anger me I now let whoever is near know.  I realize this is a product of the failure of my social filters.  But, it is a big negative step in the progress of this disease for me.

Believe me, I try to control my temper and in the past, I have done well.  But recently, very recently, that control has failed.  Especially when I am tired or it is the evening and my sun downing has taken effect.  Clearly, the Lewy Body tangles have finally disabled the portion of my brain that controls my emotions.  I have also had a strong urge to cry recently.  Another classic symptom of dementia.

So, here we go dealing with a new issue.   I wonder how this is going to turn out?    

How I react to things that don't go smoothly!

How I was before LBD is not important.  What I did before LBD is not important.  How I deal with life now is.  And I do not do well or react well to things that do not go as planned or smoothly.

For instance, if something we plan get changed, or delayed, my immediate reply is to quit, or cancel the contract, event, purchase, or what ever it is!  If that purchase or event does not happen as advertised, I want nothing to do with it!

I have said before how the mere discussion of our budget drives me into fits of anger, depression, and introversion.  I want nothing to do with our finances.  Now, it is not that we are not doing well.  It is that I do not want any connection with the topic of budget.

I now seek the path of least resistance.  And, when things become choppy, I turn around and retreat.  Why, because if I don't, I will blow up!  And that will only make everything worse.  No, I tend to stay by myself, alone in my thoughts, remembering the things of the past.  Asking forgiveness for my past sins and treasuring the good times I have had.   I do not pay attention to the majority of the news.  And if I do see what is going on in the world or my co unity, I shut it out of my mind as soon as I can.  The world will have to go on with out my input.  I prefer the company of old shipmates, my wife, and my two old poodles.

Friday, September 19, 2014

I have dreams!

I have commented before about how real my dreams are.  Many times, I wake up, continuing what I was doing in the dream.  Then, long into the day, I realize I was "Chasing a Dream" in reality.

I have had a continuing dream theme that has be owning and operating a large motor yacht.  I am at the helm and we are going at a breakneck speed.  No matter what I do, how I turn the wheel, or adjust the throttles, I cannot control the boat or direct it's course.  Then, I see a pier, and I am obviously going to crash into it!  Then, BANG!!  I crash into the pier in a ball of flame and explosions!  And I wake up.

Today, as I was drifting into the relaxation of my afternoon nap, that dream came to mind and I began to ponder what the meaning of this dream was.  Never before had I ever thought about this dreams meaning.  Nor, was it ever evident to me.  But today, the meaning became very evident to me.

The dream's meaning is loss of control, and specifically loss of the control of my life. LBD has robbed me of that which I cherished for so many years of my life.  For most of my adult life, I have controlled where I went, what I did, and even the course of my career.  I thought!  Of course, I now know that God is in control of my life.  I also know that all the days of my life were predestined and recorded in God's book before I was formed in my Mother's womb!

Those of us with any dementia, will, eventually loose control of our lives.  But, truthfully, we never have control of our lives.  That personal control is just a mirage in our minds.  And I have learned that there is "Peace" in understanding the fact that we are never in control and surrendering control to God is the answer to inner peace. Now, that dream will no longer haunt me.  I am at peace with my disease and the results of it.  Now there is knowledge worth having!

Tuesday, September 16, 2014

This is a busy week!

We are very busy this week.  Well, busy for us.  we have to complete our required medical screening for our admittance to Azalea Trace.  That includes a TB test.  We also have a birthday party this week for a friend.  But, the big events are the Subaru Dealer's class on our new Outback and the Realtor placing our home on the market, both on Thursday.

All of these events take their toll on me.  For instance, today we had my doctor's appointment for the screening and then we had to take our 11 year old miniature poodle to the Vet for an annual check up.  So, by the time I got home, I was beat.  We even ordered Pizza instead of cooking!!  I will pay for that tomorrow.

One of the things that happens often happened again today.  Our Vet, who is a good Vet and congenial man stepped on my mental land mine!  He said, I did not look or act like I had dementia!  I was nice and he recovered well.  I still get sensitive over those comments.  Why, because I feel the person is calling me a liar or a goldbrick!  He probably was not, but that is the effect of those comments on me.  Think of it this way.  A person with cancer, say Leukemia, does not loo physically sick in the beginning or even middle of their disease.  But, when they tell someone they have Leukemia, that person does not say;  You don't look sick?  Are you sure that is right? Instead they say;  Sorry to hear that.  How are you doing?  Is the treatment giving you problems?  Or, You are looking good.  See the difference.

I know this seems petty to you.  But it IS an issue for me.  So, file that away for future reference!  Now, I know some of my good friends, especially my Navy friends.  They will "Burn" me every time they get a chance now.  Don,  You don't look sick.  Who did you pay for that diagnosis?  Did the VA do it?  Those are sugar pills aren't they?!  Yes, I can see it coming now.  At least I will be prepared.

For those of your who are caregivers, those of us with LBD get treated like our disease is a fantasy, we don't have it, or we have something else, by doctors everywhere.  When we tell a new doctor we have LBD, almost always, we get that blank stare, followed by the quizzical look, followed by; WHAT?!  So, be sedative to our emotions on this topic.  I am much more sensitive in the evening or when I am tree, or when I am on a downward swing with the disease.  And, since you, the caregiver should know when we are in these sensitive conditions, you could defend us and deflect some of the comments.  Either that, or watch me punch some one's lights out!  Your choice.

I will be very glad when we are finally moved into Azalea.  Then, I will be able to stop putting on the show of normalcy.  I can't wait!