Tuesday, July 22, 2014

I had an appointment with my Psychologist today

I have to admit, I NEVER thought I would be meeting with a Psychologist.  I was a U.S. Navy Master Chief Gunner's Mate!  We are tough, independent, leaders, that do not ask for help!!  Well, LBD taught me that I needed help.  I needed someone, who I could talk too about MY issues with this disease.  Not to mention MY issues with my Wife and family as we all deal with this disease.  And it has helped me!

Today, we discussed our trip to Iowa and my "Christmas Tree" hallucination.  His opinion was than the "Christmas Trees" impeding my trip to the bathroom represented me being trapped in my routine.  He said that I cling to my routine so hard, that my fingers hurt!  He is correct.  He also said it was good that we took the trip and broke my routine.  He was also pleased that I actually enjoyed myself and had such a good time visiting with my Wife's cousin.  All that is true.

Some of the things we discuss I will not write about.  But, it is good to be able to talk to someone, unrelated to me, without retribution, that has a professional opinion that can help

I meet with my Psychologist once a month.  I find that is all I need right now.  I am totally open with him and I know he is totally confidential with what I tell him.  These meetings are beginning to help me deal with Florida and helping me feel more comfortable here.

We also discussed how secure and serene I felt in the Memory Support unit at a local retirement community that we visited.  He seemed surprised at first at my contentment with the confines of the facility.  Until I told him of my need for security and safety.   Then he understood.

So, if you are a LBD patient, I recommend a visit to a Psychologist.  It is not a sign of weakness!  It IS a sign of strength.  It takes strength to admit you need help.  I know!

Monday, July 21, 2014


I dream every time I go to sleep.  My dreams are very realistic.  Realistic to the point that sometimes, I continue to act on the topic of the dream throughout the day.  Many times, my dreams are about a tack or job I am working on and when I wake up, I continue to think and try to accomplish that job.

Other dreams are about people of my past that I miss.   Some of them are now passed on, some are not.  Many times, I wake up trying to contact that person, as if they were still alive.  Many times these dreams upset me.

Then there are violent dreams.  Fights, survival, Navy events involving gun mounts or small arms.  Many of these dreams cause me to actually "Fight" in my dream.  Or, I am moving my hands as if I was using tools in the gun mount.  I know this because my wife has observed these actions and been the recipient of one of my punches in my sleep.  This REM Sleep disorder is "normal"in LBD patients.

Sleep is my refuse and I like to sleep.  I nap daily and I retreat to the bed whenever I am upset, agitated, or angry.  If my two miniature poodles and I are in bed, I am secure.  Why, because if I hear, feel, or see something, and the dogs do not react, I know what I see is not real.  I did not have that insurance policy in Iowa recently when I was trapped by the Christmas trees when I got up to go to the bathroom!  That hallucination has upset me greatly.

My dreams continue to effect me and upset me.  Much like my hallucinations, they seem real to me.  And the reality of these dreams and hallucinations is increasing.  We will see where this leads.

Sunday, July 20, 2014

Fear of the future!

I have been trying to figure out why I am so upset, so agitated, and why I am trying so hard to find a retirement community to live in that meets my wife's standards of location, care, accommodations, and cost.

It may be fear.  Fear of my future.  Fear of the destination LBD is taking me.  Fear of the unknown.

I am consumed over finding a safe place for me to spend my remaining days.   I know I have lost my ability to protect myself and my wife.  My hallucinations have become more real and more disturbing.  The Christmas Tree hallucination really unnerved me.  And now I know where my fear originates.  In the unknown.

My wife does not understand.  I am unable to explain.  But I am sure that I need to find that place of safety and security soon.    Am I depressed?  Yes.  I have lost my independence, my manhood, and my ability to make my way in the world.

Fear never drove me before.  It is a strange emotion for me.  But, fear is now the driver.  Not fear of death, but fear of living with LBD.   I hope I find that safe place, before I do not recognize I am there.

Friday, July 18, 2014

I can't remember anything!

OK, that could be an over statement.  But, my short term and even my long term memory is degrading.  At a dinner out last Wednesday, with my Nephew and his wonderful family, I could not remember my Daughter in Law's name!    I loose thoughts while I am processing the very same thought!   This is really becoming a problem.

Right now, I have lost my entire thought process for this post.  So, I will leave it right here.  I am becoming concerned that I am loosing total control of my thought process.

Wednesday, July 16, 2014

The effects of travel on me

We just returned from a 6 day trip to Iowa for a family reunion.  We stayed with my Wife's 94 year old cousin.  She still lives in her home, cooks, cleans house and pulls weeds in the yard!!  She is doing better than I am!   It was a very pleasant visit.  The reunion was on Saturday and there were over 100 people there.  It was a big success and a wonderful time of family members connecting.

That being said, the trip has taken it's toll on me.  For instance, either Sunday or Monday night, I had to get up to go to the bathroom.  Nothing new there.  I go out of bed and headed for the bathroom, and I was immediately surrounded by decorated Christmas trees!  No matter which way I turned, there were Christmas trees blocking my way.  They seems to have substance and actually impeded my movement.  Finally, I was able to read through the trees and feel the wall, the dresser, and finally, the door.

I also had a very vivid audio hallucination and saw a man walking across the back yard that was not there.   Since we have been home, I have been more mentally disconnected, disoriented, and confused.  I have said before that I do not travel well.  But this trip illustrated that fact even more.

It is disheartening since I was feeling pretty well before we left.  But that is the nature of LBD.  The "Up and Down" nature of this disease gives you false hope one day and despair the next.  I try not to attach too much positive energy to my "Up" days and not to be too dismayed by my "Down" days.  But, it is hard to do.

Right now, I am leveling off a my lower mental stage.  Not a bad position to have.  Level, is always my goal.  It really does not matter where I am, I just want to be on an even keel.  It is sort of like working for a boss that is a jerk one day and a good guy the next!  I would much rather work for the jerk that is always a jerk!  At least I know what I am dealing with everyday.  It is the same way with LBD.  I know this will progress downward.  So, I would rather go downward and stay there, than go down and then up and down again.

So, I do not think I will travel for a while!  I am not ready for another downward turn.

Wednesday, July 9, 2014

Trials of travel

I tell people; "I don't travel well!"  It is true, anything that disrupts my routine is traumatic to me and for me.  We have been planning our trip to Iowa for a while.  But as it approaches, I have become upset, unsettled, and hyperactive.  I am worried about my puppies care and well being.  I am worried about the hassles of travel by air.  All in all, I am a wreck.

We are also trying to plan a August or September trip to Virginia.  While I very anxious to see all my friends, the thought of another trip is daunting.  I have asked my Wife NOT to bring the second trip up until the first trip is over. She can't follow that request.  Her mind runs ahead all the time and she is always planning for the worst.  A trait that drives me crazy, especially in my present LBD state.  But, there is no changing her and no training her.  She continues to plan ahead, borrow every problem, and drive me to distraction.

One thing is for sure, the next trip will be by car and the dogs go with us.  With Marcel the wonder Dog to calm me, I do much better.   Maybe we can get him certified as a service dog.

But, for those of you who "Own" a LBD patient, be careful not to overload us with details, plans, and problems!  Even in the early stages, these types of issues are unnerving.  For instance, the budget.  When my Wife tries to explain our budget, I get overwhelmed and angry.  Not because she does a bad job.  She is the BEST budgeteer in the world.  Our credit rating is because of her exceptional financial management.  But, the details of our budget, or even the talk of money, upsets me.  So, think hope upset I get when I get barraged with "What Ifs" about what can or will go wrong on a trip, with a purchase, or what ever.  I don't need or want to hear about issues or potential problems.  Just tell me where to be and what to do or say!!

One other point.  When we toured the "Memory Support Unit" of a Senior's Community yesterday, I noticed a man there who did not look like he belonged.  He WAS a resident of the Memory Support Unit, but he was well kept.  Shaved, hair combed well.  Clean, pressed clothes, and he was sitting, very comfortably, alone, on a couch, reading a magazine.  All the other residents looked like they belonged there.  You know the look.  Hair not quite right.  Men needing shaves.  Clothes wrinkled and disheveled, sitting in a group on a couch, staring off into space.  The man I described looked just like me!  And since I felt SO comfortable in that facility, I wondered why he was there and if I should be there!  That facility, the security, the rooms, the ambiance of the place, made me feel safe, comforted, and secure.  I find that interesting.  Maybe I am farther down the road than I think.  

Tuesday, July 8, 2014

The move to a retirement community

Today, we continued the search for an acceptable retirement community.  We have looked at quite a few communities and have our names on a waiting list for a community that is, by all accounts, the best in the area.  We have found three communities that are acceptable.  In my view, today's was the best.  The independent living portion was beautiful.  It was made up of individual cottages, all 1400 sq ft or more.  All with a garage and in home laundry.  All utilities were paid and one meal a day was provided along with weekly housekeeping.

The assisted living apartments were equally nice.  There, we would get three meals a day and therefore, the apartments did not have full kitchens.  There were microwaves and a refrigerator.  But the Memory Support unit was the best.  There were small, private rooms, with private baths.  Very nicely appointed.  Then nice common areas and outside walking and sitting areas in a park like setting.    The entire area, inside and out, was secure!  No way out for the residents.  This immediately put me at ease!

I have discussed before, that when I am home alone, I will NOT go out of the house.  I am afraid to gout on my own.  If my wife is home, I will go out, talk to neighbors, get the mail, do yard work.  But, if I am alone, I stay inside.  But walking the grounds of the Memory Support unit made me feel at peace.  Safe,  Secure.

This is a very hard decision for my wife.  There are serious financial considerations to ponder.  We have a beautiful home that I still can maintain, for now.  How long is the question.   Living in our present home is less expensive than the community we looked at today by a factor of 2.  Meaning it would cost us twice as much to go live in the community as we pay now.  So, don't think I do not appreciate the difficulty of my wife's decision.  Yet, I felt so secure, even in the independent living cottages.

My position is that we need to get into a community while I am still functioning mentally.  And we do not know how ling that will be.  Some days I am good as gold.  Others, not so much.  And the "Not so much" days are more frequent and more pronounced than they were.   In my previous position as the long term planner of the family, I believe now is the time to sell our house and move.  We disagree on this point.  My wife would like to wait for the community we are waiting for.  That wait list has not budged.  And, giving one third of our retirement savings to a management community is a little daunting for both of us.  While the community we looked at today does not require an "Up Front" fee. Of course, they do not guarantee the price of future care either.  All of these factors make this decision the most difficult one of our life.

Maybe I should defer to my wife's clear, unemotional, mind.  But, security sure was comfortable.

Note:  There is one other option.  I am on the waiting list for the Armed Forces Retirement Home in Gulf Port, Mississippi.  We have toured this facility an it is OUTSTANDING!!  I felt totally comfortable there.  There is one issue.  It is only for me!  That may be OK since mi wife may not need or want a senior community.   According to the administrator I should be offered a room in November of this year.  We will see.

All I know is I need, maybe even crave, security!  And I need to be in a facility that will meet my needs, before those needs become the driver themselves.  I hope that makes sense to you.  Because it consumes me.

One last thought on this topic tonight.  I would feel very comfortable moving into an assisted living facility like the one we saw today.  The apartments were roomy, comfortable, and all inclusive.  That thought makes my wife feel like she is loosing her independence!  She feels imprisoned by that type of facility.  That is where we differ.  I try to look at her point of view.  But, it is hard for me to see.  And I believe the independent living portion of a community is s good compromise.  Again, maybe I am wrong and it is just my LBD taking.  I no longer can make these types of decisions based on logic.  My wants are now dictated by what I perceive I need baked on how I believe I am at the time I am making the decision.  I guess I am like a two year old!  I want what I want, now!!  There, that sums my point of view up precisely.  How is that for being totally honest?