Friday, May 26, 2017

Trying to sleep, but my life keeps me awake

OK, I admit that the withdrawal form Effexor is difficult.  And going to sleep is very difficult and I have had to stay up latter than I want to, to get completely exhausted so I can finally go to sleep.   And during that awake time, m mind wanders back through my life.  The things I spent the majority of my life doing, and how useless it all seems to be to the world, my fellow citizens, and the people I live with.  Yes, when I was living the life of a career Enlisted man was exciting, dangerous, wild, and crazy.  And, all of us who served together through the Cold War, Vietnam, Lebanon, Libya, Central America, Iran/Iraq War, and various other then Classified operations believed that what we were doing was important.  Now, I am not sure my 66 years were well spent.

The prospect of death changes one's view of their life.  At least it has mine.  No one really, truly cares, or is interested in what I did.  The people I live with don't even believe I am telling the truth when I try to explain what I did.  To them, if I did not fly a fighter, I was nothing but a low priced enlisted slave.  What I did  had no value.  To be discarded is the worst fate of all.

Thursday, May 25, 2017

Living in a community I don't fit in.

The community I live in is a wonderful, luxurious, community.   I have written about this before.  But, the vast majority of the people that live here are over 80.  The community caters to people of that generation.  Nothing in the way of entertainment, eating venues, or care are modern, up to date, or state of the art.  There is an expansion of the Assisted Living and Skilled Care areas that is planned to start this year.  But, the first shovel of dirt has not been turned and it is almost June.  And while the plan for the extensions of these communities has a publicized Memory Support community, there is no information about these units or when they will be available.  With new Memory Support communities opening in Pensacola, I wonder if we made the right decision, based on the attitude here.

The present community has little capability to deal with Dementia patients.  My efforts to start a Memory Support group for those of us with Dementia was originally met with a brick wall from management and the nursing staff.  Persistence got the group started and now we are getting marginal, cursory support from management and the nursing staff.  But there is still NO publicity in any calendar or in the comment news ether about the group's meetings.  

Another issues is, since the average age is so high and so many of these folks still cling to Independent Living Apartments, there is little opportunity for younger Seniors to move in.   Many of these folks employ personal aids to take care of them in Independent Living apartments.  Sort of a personal, assisted living community!  That coupled with the fact that Azalea Trace is knows as a "Nursing Home" instead of a CCRC, does not help with the recruiting of younger residents.  But the "Nursing Home" reputation is well earned and deserved.

For instance, many people that live in Independent Living apartments cannot walk down stairs, use rotators or electric carts to move around, and if a FIRE broke out on a floor above the first floor, would be TRAPPED in their apartments, doomed to die.

Another issue for me is, the over 80 club that runs this place is also a bunch of retired Military Officers, most of which were reserves that never did anything, and all of them think Enlisted Personnel are personal servants who have no value and did nothing but scrub pots and clean toilets.  Trust me, you can't swing a Cat and not hit an O-6 around here!  (And I bet you do not know what the phrase "Swing a Cat" means!  No one here does, trust me.)

Maybe I am just having a difficult day.  I do have friends here, but no one that I am considered equal too.  I am always the "Burdened" individual in any conversation or situation.  I do many things to help the community including filling in for the Staff Chaplain for services and last year the Christmas Program.

Again, maybe this will pass, when I am 80!  The truth be told, I will be surprised if I make it to 67.

A bad day

Yesterday, I felt on top of the world.  The withdrawal symptoms had subsided and I felt the best I had in a long time.  Today, I have been in the doldrums.  The withdrawal symptoms are back and I am very depressed.  My Wife and I were discussing this tonight and she commented that yesterday was the regular meeting with my Dementia/Memory Support Group.

She is right.  That group helps me be me!  I am with others that are walking the same journey I am. We are related by diseases.  We support each other.  We are all very open with each other because we are comfortable and we trust each other.   Meeting with those people is good for me!

This support my belief that living in a community of that are on the same journey is good for us.  If I look back at my Navy career, I was always very comfortable and happy on ship with other Navy professionals.  We were experiencing the same things, helping each other, supporting each other, everyday.

Oh well.  I can look forward to next week's meeting.

Wednesday, May 24, 2017

Quitting Effexor. Progress report

I have been in the process of getting off Effexor.  I have taken Effexor for a long time.  How long, I cannot say.  I was taking 225mg every evening.  But, recently, I decided it was not helping, and since I am on a charge to get rid of any drugs that do not work, out it goes!  However, I have discovered that getting OFF of Effexor is much more difficult than getting ON Effexor!

The Neurologist, gave me a plan t taper off of the drug.  I dropped to 150mg for a week, and now 75mg for a week, and then NONE!  The first ten days was TERRIBLE!!  The withdrawal symptoms included a pressurized feeling in my head that was horrific.  But today is the 11 day of the draw down and I feel almost normal!  I have more energy and I have some zip in my step.  I do not see any increase in my depression so my estimation that the drug was not doing me any good may have been correct.  We will save the final verdict until I am completely off of Effexor for a week.

Do anti-depression drugs work?  I think so and some people need them.  I may have needed them in the beginning, but I do not want to take them anymore.  I do have a prescription for a different anti-depressant if I need it, but my hope are that I can stay away from that type of drug.   We will see. 

Our Memory Support Group

We started a Memory Support Group here at Azalea Trace based on other disease support groups, specifically directed at those with Memory issues.  The group has grown in participation and in support and is now ready to expand again.  We now have a  professional facilitator from Covenant Care that meets with us once a month.   We have an association with Sacred Heart Neurological Group that provides a Doctor to meet with us once a quarter.  We have established a library of Dementia Pamphlets from the National Institute of Health and some books like "The 36 Hour Day".  

But the best part of the group is the trust and comeradere of the group members.   We help each other!   It is great to be part of a comfortable, accepting, community of people that are going through many of the same issues.   Being able to openly discuss personal issues, knowing no one will judge you for those issues, is reassuring and enabling!


Sunday, May 21, 2017

Difficulty expressing myself

I have started  two or three posts, only to delete them because I CANNOT express myself.  Things start out fine, and then, I am at a loss for words.  I was trying to go to sleep tonight, but I wanted to post this, to let you know why I a experiencing.

I am down to one Effexor 75mg, starting today and things are going moderately well.  The first week was the most difficult.  That was the week I went from three 75mg pills to two.  But, again, my memory of this entire process is fuzzy.  I have only been on this draw down one week!  I am confused.
The last week seemed like two weeks.  So, I guess the first part of the week was bad and the end of the month was better.  Tonight was the first one pill night.  We will see how this goes.

When I try to go to sleep, I get more agitated and more negative in my thoughts.  This is probably related to my med changes.  We will see.

On a positive note, I was blessed with the opportunity to perform the marriage of our Middle Grandson and his beautiful new Wife.  The remind Linda and I of us when we were first married.  It was a wonderful ceremony and reception and although I was very tired after the event, I was very happy I could be there and perform the marriage.  Again, it was a blessing for me.

Our youngest Grandson graduates from High School this week.  Another blessing.

I did some research and the National Institute of Health has a wonderful pamphlet on Lewy Body Dementia.  It is free and can be ordered online from NIH.  They have others relating to Dementia that also have value to the LBD caregiver.  Check them out.

I also did some research on my issues caused by the impact of LBD on the Autonomic portion of my brain.  I have mentioned before that I have had sexual performance issues.  I am now completely impotent.  Nothing works!  And it is because of the autonomic issues related to LBD.  It does not make me feel better about this issue, but it does help me understand it better.   I ma also having increasing difficulties swelling.  I choke and cough often after swallowing any liquid.   This is an autonomic issue too, along with my issues with fluctuating BP and body temperature.  All signs this disease is getting worse.

There, I did it.  Not pretty, not connected, but you know what I am going through.  That was always my goal.  More later.

Friday, May 12, 2017

Med update

I believe I posted about stopping Clonozipan.  I did that without consulting my Neurologist.  Since I was on that drug for such a short time, I felt comfortable with that and the doctor knows now and agreed with our reasoning.  I also wanted to get off of Effexor.   The neurologist has agreed to that move and gave me a plan to slowly get off of it.  I have been on Effexor for a long time and it has stopped working if it ever worked at all.

I am on a quest to delete any drugs from my treatment that we believe, do not help me.   I see no reason to take drugs that have serious side effects,  if they do not help me.

The Neurologist cautioned us that getting off Effexor may have it's own side effects.  Like more memory loss!   Also, more night agitation and increased anger issues!  Linda will have to keep track of my progress and the Neurologist told her to call if I have any negative changes.  We will see.