Saturday, October 5, 2019

Recent happenings!!

We recently went through a tough spell caused by a change in my routine.  I must remind everyone that all of us are learning how to deal with Lewy Body Dementia, every minute of every day.   Linda and I were reminded of that fact, abruptly, about 10 days ago.  She brought an orphan, feral, kitten into our home, ostensibly to foster.  Our dog, Zeus, wanted to play with the kitten since he likes all animals.  The kitten was not so sure of that fact.  We purchased all the necessary kitten supplies and some things not necessary.  The kitten was living the "GOOD LIFE"!  Zeus became jealous on the second day and I was becoming very agitated because my routine had been altered.  Zeus decided to show his jealousy by urinating on his newer, luxurious, dog bed!   I exploded!  Yelling, cussing, I threw the dog bed in the dumpster and said I never wanted the cat and wanted it gone, now!  Or words to that effect.

Luckily, a CNA in Assisted Living where I live, was looking for a kitten to adopt.  We took the kitten to her and she agreed.  The kitten went to his luxurious new home that afternoon.  But that is only the beginning of the story.

I became very closed off from Linda and everyone else.  For three or four days, I did not shower, brush my teeth, or shave.  I missed meals, and did not talk with Linda except for mandatory issues.  She, kept trying to get me to talk, but I refused.  I was in a very DARK PLACE!

She finally got me to discuss my issues and she in turn brought up some issues that were bothering her.  It was a frank, pointed, tense, discussion.  It was not an argument.  We were both open to the other's opinions and issues.  At no time did either of us discount what the other one said.  And, the exchange helped me settle down.  But, as Linda knows, I am still not completely over this.  My short term memory has suffered, I am more easily agitated and have blown up since then,  I am more closed up and reclusive, and I run from anything that makes me agitated.  For instance, I love Barrett Jackson Car auctions on the Motor Trend Network.  There is one in Scottsdale Arizona that I watch faithfully, start to finish which is 7 days long!!  The Las Vegas event was this weekend and I was anxiously waiting for a much advertised collection to come up for auctions.  What did the morons at the Motor Trend Network do?  Put commercials on for half of the collection being auctioned off!  I shut the show off and WILL not watch it again.  The pissed me off!

The point of all this is, the recent happenings have impacted me in a very negative way.  Introducing that kitten into our life was a mistake.  I know Linda wanted to make sure that under nourished, black kitten lived a good life and I agree.  But, it caused both of us issues that will impact me for ever.  Changing my routine is not a good idea.  But she did not fully understand that she she started.  How could she?!  It is not her fault!!  There is no manual on how to be a LBD care giver, written by a successful LBD caregiver.  Why, because there has never been a fully successful LBD caregiver!!

So, LBD caregivers, take note!  Everything is an experiment.  Some work, some don't!  Learn from your mistakes!

Thursday, September 26, 2019

Check out Teepa Snow Videos!!

I recently viewed on Youtube, a video from Dr. Teepa Snow on our problems with doing things and depression.  She presented a fact that our brains are impacted by the dementia and we cannot do the things we once liked to do.  It is not hat we do not want to, we CAN'T!!  She further stated that anti-depressants will NOT help this issue!  I have taken anti-depressants for a long time with no positive effect.  Now I KNOW WHY!!

MOST DOCTORS AND SPECIALISTS ARE NOT INFORMED ON THESE ISSUES!!  Today, we went to se my neurologist and she had no idea about BAN 2401!  She told us she did not do research because her life was too busy..  I can understand that, but where does that leave us, the patients?

So, I encourage each of you to be more informed through the use of the internet.  Yes, there is junk on the internet.  But there is a wealth of information out there also.  Go find it!  Check reputable sources, like the National Institutes for Health or Mayo or ALZ.Org. to LBD.Org, or other known entities.

To be fore warned is to be FORE ARMED!

Tuesday, September 24, 2019

I have not written in a while...

I just have not felt like writing.  My world, my life is closing in on me.  I am very content in my Cabin in Assisted Living.  I have little desire to be with people, although I try very hard to be pleasant when I encounter folks.  I still enjoy being with my Wife and Zeus, the Wonder Dog.  But I am most comfortable alone in the Cabin, in the quiet, alone with my thoughts and dreams.

One of my frustrations and angers is the reoccurring thought that those things I wanted to accomplish will never BE accomplished.  Linda and I discussed that tonight.  I think she understands.  Much of what I liked to do I am isolated from here in East Lower Alabama.  My friends, My hobbies, My interests are not here.  I am a prisoner of this condition.  It is no-one's fault.  It is just what it is!

Linda and I discuss me getting my driver's license back at least once a week.  She patiently tells me why I can't.  I get frustrated, but I know she is right.  More shackles on my prison chain.  (Ha ha!)

Today, talking to Jerry, we reminisced about the Gun Shows in Virginia we often enjoyed.  After the call, I looked up the Big Show in Richmond.  I long to go to that show again.  To experience the freedom, see old friends, and be me. But, it is not to be.

Tomorrow is Memory Group.  Always a good time but a very demanding and tiring time for me.  Thursday, we finally go to see the Neurologist about Linda's testing.  Medical care her in East Lower Alabama is rudimentary at best!   I believe a Witch Doctor would be better.

See why I have not posted!  LBD is winning and I am running out of fight.

Friday, September 6, 2019

OK, Let's get back on topic

I was down for about two weeks with Bronchitis.  I knew it was coming, I got a cold, went to our GP, and told her it was going t turn into Bronchitis, as it has for years.  And when it does, because of the orthostatic hypotension, I cough until I pass out.  Bur, she said, no, it is just a cold.  The next night I was in the emergency room for 5 hours!  Then over 5 days, in my room in Assisted Living, coughing up stuff that looks ugly, and discovering two new hernias!    No issue, I can still manage them.

I am on the mend now, getting out, even back to walking every evening.  But, my chest is still tight and  still cough.  And, I am still using my albuterol inhaler a couple of times a day.  Normally, bronchitis takes 6 weeks to completely clear up if I don't get another bout of it!   Again, I hate passing out when I cough!!

Linda and I have noticed this bout has impacted me in a number of ways.  But, that is normal.  I never regain those losses in cognition or stamina.  It just IS the new normal.  I am napping more, sleeping in later, and more agitated.  I can't even have the sound on when I watch Football because it agitates me terribly!

During my bronchitis issues, my GP prescribed Advair.  I tried it for two days.  My heart kept trying to either stop or jump out of my chest, in alternating patterns!  I read the pamphlet that came with the drug, and after that, decided the cure was worse than the disease!   Can Cause THRUSH!!  The heck with that!

I can see downward progression of my LBD journey.  Both physically and mentally.  Linda sees it also.  We try to manage these issues with exercise, diet, rest, and understanding.  She has really become completely intone with me and my mental and physical abilities.  If we go out to shop or do errands, she is constantly monitoring my mental state.  She knows when to take me home, just before I am completely worn out.  I really appreciate her help and care.

Being in groups of people for anything but a very short period of time is overwhelming and always leads to me getting agitated and angry.   But, she watches that too.

Sleep comes more difficult lately.  I go to bed tired, but my mind gets overwhelmed with negative thoughts and scenarios.  It takes me a long time to sort them out and finally get to sleep.  Sometimes, I get up, play more computer games until I can't keep my eyes open.

Well, that is my update for now.  Time for quiet, Freecell, and sleep.

Thursday, August 29, 2019

And the HITS just KEEP on comment; Part Two

I would like to thank ACTS Corporate and the Regional Vice President for openly discussing the issues of the replacement of our Executive Director.  The VP openly discussed the issues in a Town Hall Meeting and answered wide ranging questions about the future growth of our community.  He met with numerous residents, one on one, to answer their questions.  To say he was brave, especially in the Town Hall meeting would be fair!  People can be direct, self-centered, and self-serving in these circumstances.   He did a very good job keeping the questions and topics on track.  Not an easy job!  I know from personal experience.

I am even willing to state, for the record, that my previous post WAS  way too direct, disrespectful, and out of line.  Certainly I knew ACTS and the Regional VP were going to come address these issues.  I was wrong to use this forum in the manner that I did and I ask your forgiveness.  Sometimes, I bark when I should sit sown and shut up.  This was clearly one of those times.  I was clearly one of those self-serving, self-centered people.   Please forgive me.

I honesty, truly, love living at Azalea Trace.  I like the people here and I love the caring staff.  I am very defensive of the staff, because they treat my wife and I so well.  The past Executive Director was one of those people.  And, while I admit I do not, nor do I ever want to know what happens behind the scenes in the management offices. her demeanor and caring attitude made me feel safe, loved, and welcomed.  But, that is how Azalea Trace, and ACTS in general makes me feel.  And I still feel that way.  I just need to realize I am not in charge of anything, anymore.  There are wonderful professionals taking care of me and making sure I am happy, safe, and comfortable.  We could ask for nothing else.  Thanks ACTS and Azalea Trace!

Sunday, August 25, 2019

And the HITS just keep on coming!!!

If you are from my generation, you heard that many times on the Rock and Roll radio station in your hometown.  Back to back hits from your favorite groups!  Commercial Free!!  Six HITS in a row!

Well as we age, those hits are not fun anymore.  I am just now getting better from my most recent bout with bronchitis.  Most of that misery was caused by poor, inattentive, assembly line medicine practiced by uncaring, undereducated, overworked, medical semi-professionals.  I got much better care for the Independent Duty Corpsman on a Destroyer, without a Medical Officer, than I have received in the almost 8 years I have lived in Pensacola.

However, the staff here at the Assisted Living side of Azalea Trace did a great job watching over me.  I could not have been cared for any better and I thank them for their caring, professional, attention.

During my recovery, on the first day I stuck my head out of my room, (I stayed in my room for 5 ½ days, without leaving!) I saw a memo stating that our Executive Director had been relived of her duties!  That was one of those HITS I did not see coming.  I liked her.  She helped me when I sincerely needed help.  She cared about the community and all of us here, employees and residents.  She inherited a mess and yes it got worse, but she was turning things around.  It takes a while to turn a big organization around.  There is resistance from all sides to change!

Her departure comes on the heels of the departure, without notice, of two Nurse Practitioners, and various other staff members.  At least one who should have left in handcuffs!!

All of this change, turmoil, angst, has me questioning whether I want to or need to stay at Azalea Trace any longer.   Remember, I moved to Assisted Living to get away from these sort of issues.

In my past life, I wanted and needed to know what was going on behind the curtains.  But now, I only want to see a smooth, well run facade from my side.  The inner workings are not, nor should be, my concern.  Yet, HITS like these keep focusing me on the negatives and cause me to spend hours questioning my decision to move here.

Again, in my present state, I do not need this aggravation, angst, upheaval, and turmoil.  And I expect senior management to make sure it does not occur.  But, since we moved to Azalea Trace, almost five years ago, the management of Azalea Trace has been in constant turmoil!  And since I know ACTS management reads this blog, I won't recount the past director issues, the accounts person that had sticky fingers, three lost Nurse Practitioners, and serious maintenance issues that never seem to be addressed.   Acts is spending millions of dollars building new cottages and that's fine.  And there is the promised, but yet unseen, expansion of Assisted and Skilled Care.   The pool was completely remodeled and modernized with spectacular results.  And a Complete Sprinkler System was retrofitted into the Mid-Rise, making it even safer!!  But, daily maintenance issues seem to be overwhelming.  Hell, I had to tell the Director the drain was clogged in the portico of the mid-rise causing months of flooding in the foyer!!  Maintenance never even checked that!!  A blind man on a galloping horse should have seen that one!

You can tell I am upset, but the HITS, keep on coming!   Azalea Trace is obviously broke!  And that breakage is on the Management team, hence the departure of our Director.  And since ACTS Corporate caused that departure, I ask the question; "What are you going to do ACTS Management to make Azalea Trace whole again, quickly?   If I were in charge, I would be here explaining everything in a TOTALLY open manner.  Again, the ball in in your court!  But, the truth is  I cannot take anymore hits.  And I will bet I am not the only one frustrated with this management mess.

Wednesday, August 21, 2019

Don't get sick!

I have had bronchitis for 5 or 6 days.  I went to our GP last Thursday, with a bad cold and told her, as I have in the past, that it would turn into bronchitis.  She ignored me and gave me nothing of note.  The next evening I was in the Emergency Room for 5 hours and finally got some antibiotics. The ER Doctor said I need the antibiotics to ensure it did not progress into pneumonia.  She was actually concerned about that possibility.  I did everything the ER doctor prescribed,   But, of course, it had progressed to the point that those drugs would not work.  So the Nursing Staff here at Azalea called my GP for a RX for nebulizer treatment.  My GP denied that, even though, I have had good results from nebulizer treatments in the hospital with previous Bronchial infections.  Did I mention I have not had a good nights sleep in 6 days!?  Kind of hard to sleep when you are up, coughing up brown phlegm every 15 minutes.  In any case, my GP wanted me to try....TRY  some inhaler instead.  The GP's nurse called me and explained this to me and I countered with past successes, to no avail.  It is 26 hours since that telephone call and I have not received the new, untested on me, drug yet!  I could have had three nebulizer treatments already because Azalea Trace is equipped to provide that on call.  Again, I explained that to the GP's nurse, to no avail.

Needless to say, I still feel like shit, I cannot breathe well, and I am still coughing up larger amounts of brown phlegm!

Time to find a new GP!  If I live through this one.