Saturday, April 22, 2017

Pensacola Obituary: Marcel Dolence

Marcel Dolence, Miniature Poodle, 14 hers old in Human years, passed away today, 22 April 2017, In Pensacola Florida.  He was a long time resident of Virginia Beach Virginia.  He was born in the finger Lakes Region of New York.

I lost my best friend today.  He was my Velcro puppy, always by my side, always loving, and always forgiving of my foibles.  Marcel and I fell in love when I first met him.  He was a small puppy my Son and Daughter in Law had just adopted and he and I were made for each other.  I loved him!!  From the first time I saw Him, I wanted him tone my puppy and he wanted to be my friend!  I will always love him.

As he aged, he had some serious health issues.  A seizure about 5 years ago that lead to the discovery of Hypothyroidism.  Later, a heart murmur that required medication and continued to get worse.  He lost most of his hair due to the Hypothyroidism in the last year and he had many bumps, boils, and hot spots.  Yet, he was always gentle, loving, and calm.

Marcel could not stand to be away from me.  Last year, we took a trip without him and he nearly died! He looked like he was on his last legs when we got home.  We went to the Vet, nursed him back to health, and had a good last year together.

Marcel even let a homeless, elderly, miniature poodle invade his home.  Cherie was sickly and neglected but he befriended her, shared me with her, and she had three years of relatively good health before we needed to have her put down at 15 ½ .  Marcel missed her and grieved for Cherie until the day he died, today.

I love Marcel and He will always be in my heart.  When I die, his cremains will be placed in my coffin.  I will always miss him.

Friday, April 21, 2017

Caring for a Dementia patient.

I have read extensively on the topic of caring for a dementia patient.  Most of what I read is directed at the drugs available for the patient to slow down the progression of the disease and calm the patient.  There are also extensive writings on what drugs NOT to give to those of us with LBD.

All of this research is very valuable and worthwhile.  But, none of it addresses the patients need, hunger, and desperation to be intimately touched by the ones he or she loves.  Hugging, kissing, sitting close holding hands, cuddling in bed help calm the dementia patient and make him or her feel loved, important, and wanted.  Even listening to a story told many times by thee patient give that person self worth.

Putting it personally, there is little I can do to show my usefulness to how worthwhile I am.  I cannot work, drive, even perform sexually anymore.  As kiss, hug, closeness in bed or on the sofa bring back times of intimate relationships.  Times of love and vibrancy,

Instead, we are left alone in our lift chair, or taking a nap alone, while the spouse continues his or her active, normal life.  The patient is an after thought or worse, a burden.  Who is going to sit wit Him while I go out to play?  Kenny Rodger's song "Ruby, don't take your love to town"  illustrates the emotions and frustrations of the handicapped individual.

Please don't replace us with activities that you could do after we pass!  I have seen this happen to many times.  Now, when the Dementia has progressed to the point where the patient is only a shell of his or herself, shorter visits, less in-depth conversations, and fewer memory exercises may be warranted  But that Dementia patient, no matter war stage their Dementia is in, needs, requires, and searches out that intimate connection from humans and predominately from the Human they love!

Do care givers need a break?  Certainly.  Is respite care valuable and necessary?  Yes.  But doing your thing while the patient wastes away in the chair is not care giving,  It is torture, for the patient.  I know I have little or no value.  But, telling me by you actions and interest that do not relate to me only make me feel more worthless and tell me you really do not care anymore.  When we realize that is the case, Dementia patients tend to sit down and retract into their cocoon.  They sleep more, eat less, participate less in any activities, and refuse to do things they once enjoyed,  Why, because they were told they are now useless, unwanted, and even repulsive.

As  progress I see these things occurring in my life and impacting me more and more.  There truly is nothing I enjoy to do.   My worth is that of a little child.  Sit there, don't tough anything, be quite, and don't embarrass me.

PS:  One more important point.  Dementia, no matter what type is a death sentence.  We are dieing because our brain is failing,  We may mentally die before our body quite.  But we are going quick. Drugs slow the progression of the cognitive decking, sometimes!  But, death is just around the corner just the same.  That kiss, hug, special whisper in the ear may be the last one your Dementia patient hears.

I encourage you to think about your relationship with your special Dementia patient.  How do you treat and interact with him or her.  Put yourself mentally, in their position, an then see if you would like the treatment.  It could be an eye opener.


Thursday, April 20, 2017

This HAS been a great life!

I realize the nature of LBD causes me to complain.  I am sorry, but there are plenty of issues that give me a reason to complain.  Just the same, I have had a very good run the first half my LBD journey.  Thanks to a great Neurologist, Dr. Mary Alliston Bowles, in Norfolk Virginia, I have been on Razadyne and Namenda and depression meds that have slowed the progress of this "always advancing" disease.

Recently, those drugs have started to loose their battle with the progression of my LBD and I have experienced more issues, as I have reported.  My Neurologist here in Pensacola, Dr. James King, and his Nurse Practitioner, Lacy Hilton, have increased my dosage of Clonizipan and that has calmed me down at night.  So, I am now more relaxed and calm at night and I can go to sleep easily and sat asleep.   I am sure this will require continuous increases to continue the positive effect.  I accept that.

I have become very reflective, and I realize my life has been pretty good.  It started out in poverty, as a throw away unwanted child.  But, because of the love of two wonderful people, Addison and Evelyn Mills, I was raised well and given great moral values.  School was not my style but the United States Navy fit me to a "T"!   That "Dream Career" lasted 40 years!  MY other Dream has been my wife, Linda.  An intelligent person who shows Christ's Love in everything she does.  God used Her to guide me to Jesus Christ and then to make me usable to God in Children's Ministry and as an Associate Pastor.

Now, we live at Azalea Trace, my third career, truthfully.  I have the opportunity to help the Staff Chaplain and we have established a Memory Support Group to help other Dementia patients.   This group keeps me in a positive state of mind.

So, as my mind diminishes and my physical capabilities decrease, I still find happiness helping others and in turn, being helped by them.  I try to present a Positive Attitude to everyone I meet in the hallways or in the dinning room.  Because, I know each of them have their own physical and cognitive issues.  We are a family here at Azalea Trace.

So, I apologize for being so negative and complaining.  There are reasons and excuses, but they are not as important as me making every effort to be thankful to God for the wonderful life I have had.   I have NO FEAR of death and I am sure it is closer than ever before.  Even closer than it was when I was a Navy Gunner's Mate.  And I am totally at ease and comfortable with God's next planned step in my life.  As a matter of fact, I look forward to it and embrace it!  Life has been very good.  Praise God!!

Sunday, April 9, 2017

Walking on EMOTIONAL eggs as a caregiver

I grew up with older parents.  I was about 3,  4 , or 5 when Mom went through Menopause.   I did not understand her emotional distress and in 1954, there were no medicines to help.   Additionally, they had no money to go to the Doctor for help.  So, I got yelled at a lot, saw her cry a lot, and learned that things I said, and the manner or way I said them, often caused GIGANTIC issues, for me!   My Dad, worked extra hours and player pool!  He found distance was a good defense.  Me, I had none.

Then, as a Husband, I went through Menopause with my Wife.  I had more experience and more education that my Dad did.  Just the same, many times, no matter how hard I tried, I failed and came out as the villain, no matter what I did.   It seemed, no matter what I did, how well I planned, how well I did, what accomplishments I achieved, I was a dirty no good!!!  I was defenseless again!

It seems, some of my Wife's Menopause issues have resurfaced in recent years, most likely from the stress of being my caregiver and the worry of facing my early death.  I am sure, she always thought I would be her, healthy, capable of anything, bullet proof, do it all man like I was when I was 30!   So, I can assign little fault to Her for her emotional explosions that seem to come from no where and have no rational basis.

But those emotional explosions from my Wife cut me to the quick, when I am trying my best to be helpful around the home, friendly to people, and do my best to Serve God here at Azalea Trace.   I make every effort to hold my emotions in, so that I do not upset her,  Again, I know she has a full plate.  But, I need some consideration too.  Or, maybe that is just too much to expect.   In any case, It has been a difficult day for me from 30 minutes after we got up until now, when I go to bed.

This goes back to post I wrote a while ago.  Maybe the Patient and the Caregiver should NOT live together.  Maybe the patient living in Assisted Living makes sense.  What I do know is, I am tired of doing everything and having none of it meet the satisfaction of my wife.

Obviously, more night time drugs are needed!  



Friday, April 7, 2017

My thanks to Azalea Trace and Lacy Hilton of Sacred Heart Neurological

Six months ago, we started a "Dementia Patients Support Group" here at Azalea Trace.   We meet every week for an hour and help each other deal with our individual Dementia Journeys.  Tonight, the Nurse Practitioner at my Neurologist's Office, Lacy Hilton, had dinner with those of us in the Dementia Patent's Support Group.  We had all the members of the group, their spouses, and the Nurse Practitioner from Azalea Trace, Missy Clements, in attendance.

It was a wonderful meal and time of fellowship.  But the information Lacy provided was the best part of the evening.  After she gave us an update on the latest research in Dementia care, Lacy answered questions and interacted, personally, with each member of the group.  Her factual approach and reassuring nature helped each member of our group feel at ease and open.

Having The Sacred Heart Neurological Group ready to interact with Dementia patients and their care givers is a blessing to all of us.  Future meetings are planned and more outreach is needed here at Azalea Trace and through the country.  People need to understand Dementia, not run from it.

Again, I thank the medical team and Administration here at Azalea Trace for setting the stage for this type of personal education program and Lacy Hilton for starting what will become the model for other retirement communities to follow!

It was a Great night!!

Thursday, March 30, 2017

Hallucinations

People with LBD normally deal with Hallucinations.  It is a normal symptom of this disease.  I have had Hallucinations, off and on, since the beginning.   I have seen horses in my back yard, men crossing the freeway in heavy traffic, cars ready to hit us, all sorts of animals around me, and recently a man poking in our patio window.  I have also experienced vocal Hallucinations where I hear voices that I recognize and do not recognize, calling my name or asking me questions.  Additionally, I still experience touch Hallucinations where I feel someone or something walking on me in the bed or someone touching y shoulder to back when I am alone in the bed.

Some of these have been frightening and some not.  I have recently been startled by men I see, approaching me, when I am walking the dog in the day or the evening.   That is probably because of the progression of the disease.

I know other LBD patients that have similar Hallucinations.  Again, some frightening and some just things they see.   The truth is, LBD is a disease that has Ups and Downs and Hallucinations are part of that.  It is not abnormal for a person's Hallucinations to stop for a while and then return with a vengeance!   These occurrences are normal!  So, try to deal with them like the other issues of our disease.  I understand it is difficult, especially if your Hallucinations are unnerving or frightening.

I actually have had a Hallucination that scared me so much, I made a special appointment with my Psychologist to discuss it.   I have recommended before having a complete "Team" for your care including a Psychologist.  This is a disease that requires a complete team approach.  Trying to understand your experiences with LBD with only a GP or Neurologist is handicapping yourself, in my opinion.  Yes, I understand there are financial limitations, but if you can, build a team.

Hang in there.  Try to find a support group in your area. Look into the local Alzheimer's Association, a local hospital, or even a local College or University, for a support group.  The more support you have, the better your journey and the easier your family will be able to deal with the disease also.

Again, this is my advice based on my journey, so far.   I am not a medical professional of any type.  

Monday, March 27, 2017

An issue I can't remember

Earlier in my journey, I had an event where, I was sure then and I am still sure, that I was followed by a family member when I went out for a while to get a sandwich.  This morning, I was very bothered by something similar that I cannot remember.  Sounds strange, I know.  I was up before my wife and I was very agitated and upset over this, now unknown, issue.  Now I am very  upset by the issue and the fact I cannot remember what it is!!

I am also becoming more curt with people and I reply to people in a manner that is unfiltered and without respect to their feelings some times.  These issues are not constant but they are not announced either.  I do not know she they are going to occur!

This, coupled with an increase in very realistic hallucinations has caused me to realize things are getting worse.   I absolutely must stay in our apartment until February of 2018 to keep the monthly rate we have now.  

The LBD journey is getting more difficult and the decline is steeper.   I guess I will just have to get tougher.

Sunday, March 26, 2017

You don't look sick! Again

I discussed my anger over the comments of people on my journey with LBD with my Psychologist last Monday .  You know, the comments those self-proclaimed neurologists that work other jobs that tell us we are faking.  In any case my Neurologist tried to tell me those comments were actually "COMPLIMENTS"

I can see that.  It is like telling some very overweight woman; "You don't sweat bad for a Fat girl!"

Compliment my butt!  The people that tell me I look "normal" are telling me I am faking my disease like some "Welfare Queen".   You are lying to get money from the government!  You are faking to get sympathy!  You are pretending to have a disease they really cannot diagnose so you don't have to work.  

Let me state, that I disagree with my Psychologist, completely!  And that I think he had a FAKE Phd diploma from a Cracker Jack box.

There, I feel better.  Anyone want pancakes?

Friday, March 24, 2017

The other side of Dementia. The care giver's pain!

I know a man where we live that visits his wife, who has advanced Alzheimer's, every day.  He talks to her and tells her of the news, family happenings and the things he has done that day, to keep her informed of the life she is missing.  For three years, she has not talked, reacted to anything he said, his touch, kisses on the cheek, or even loud thunder and lightening!  She has her eyes open, but responds to nothing!

A few weeks ago, he planned a Birthday Party for her.  All of their children and grandchildren we in attendance.  There was a custom made Birthday cake and the party room in Skilled Care was decorated for a BIG Birthday Celebration.

He and the nursing staff moved his Wife into a wheel chair.  Before he pushed he into the decorated room for the surprise party, he told her; 'Happy Birthday Sweetheart!"  When they entered the room, to the family shouting "Happy Birthday Mom, Grandma, Great Grandma"  His wife, who has shown no voluntary movement or response to any stimuli for three years reached out for her husband's hand and squeezed it!!

My friend broke down and cried!

He told me later, "I never say anything in her presence that I do not want her to hear.  I always knew she was still there!"   That hand squeeze was worth everything to Him and Her!!

This is a good lesson in how to interact with those of us who have dementia.  We are still here.

Sunday, March 19, 2017

You don't look like you have Dementia! You don't look SICK!!

Those two statements send me into a rage!  If you have read my other posts, you already know that.  Today, we came home from Church and ate Lunch in the dinning room of Azalea Trace.  A wonderful meal, like all of them here.   We ate with a couple that we know and the woman is a leader in a Bible Study that my Wife is also a leader.  We are friends with them, have eaten with them before, and helped them with problems.  The husband asked me about my disease and how I was diagnosed.

I am very open about my journey.  I will openly, truthfully, describe everything that I have experienced to anyone interested.  And I answered his questions.

Then, after lunch, we split up, and I went to our apartment to let Marcel the Wonder Dog out, before his bladder broke.  My Wife was sidelined by the Wife of the man who questioned me about my LBD. She said;  Your Husband does not look or act sick.   He shows no signs of dementia!  

I have been told that by other folks here.  And truthfully, it is getting old and very difficult to deal with in a polite manner.

What actually, does a Mid-Term Dementia patient look like?  I drool, pee my pants, I have very thin skin that bleeds easily, scabs slowly, and refuses to heal.  I am unstable in my walking, use a cane all the time.  I seldom remember any one's name, do not drive the car anymore, at the recommendation of my Neurologist, and take enough prescription medicines to keep a small pharmacy in business until I die!!  And these are only the outside symptoms that a blind man on a galloping horse could see.

The people who pass judgment on my do not observe how bad my nights are, how confused I get.  The fact that I hallucinate realistic and sometimes frightening people, animals, and situations, often.  I have difficulty reading, do not know were I am, what day it is, or even what time of the day it is.   There are many other issues, but you get the idea.

How does a person with early cancer look?   How does a person with a colon tumor look?  I had a pre-cancerous colon tumor that caused me to have the ascending portion of my colon removed!!  I looked just fine!  

I am actually thinking of getting a name tag made that says;  I have Lewy Body Dementia!  I am NOT faking!  If you cannot deal with that, leave me alone!






Monday, March 6, 2017

The impacts of LBD; Part Two

I may be selfish and self-centered.  It is hard not to be when you are suffering from any incurable, progressive, life ending, disease like LBD.  Yes, the end can come slowly, but it IS coming.   And sooner than it would have if I did not have LBD; at least in theory.

I also know family and friends have their own lives.  Their jobs, families, hobbies, children, and home maintenance, to name just a few things that keep them from visiting and calling.   My Navy career took up the majority of my life from 1969 to 2010.   I neglected my family, son, parents, other relatives, and friends to do what the Navy needed me to do.  I volunteered for the tough assignments, rode deploying ships,  worked late to make sure my equipment worked, and avoided anything that looked like easy jobs. So, I do understand their position.

Just the same, I feel abandoned and neglected much of the time.  Are these feelings valid on my part?  I guess that depends on which side of the issue you are on.  I do not expect or deserve 24/7/365 care, visitation, and coddling.   But, once in a while would be welcomed.

So, that is the end of my self-centered complaining for the moment.  LBD IS a lonely disease.  And I have written before that I believe living in Assisted Living is better for the spouse of the Dementia patient because she would get the good times with me and I could be alone, in the care of the professionals, when I am being difficult.  But, she has to bee there to share the good ties or my theory is wrong.  I believe she will be.




Sunday, March 5, 2017

The impact of LBD on the spouse

We live in a retirement community that has a large population of older folks.  Many in very good health, others with serious health issues, and some that deny having serious health issues.  But I have watched how different diseases impact married relationships.   Some couples draw closer together and find new strength to find a way to live with the disease, closer together, more in love.

Yet, some couples fall apart, loose contact, and are no closer that two people that live in the same town.  I see spouses of Dementia patients that protect their spouse and shield them from life.  And I see spouses that dump their spouse in Assisted Living and never visit them.  The travel, go out, enjoy their new freedom, without the anchor of the Dementia Spouse to ruin their lives.   This "Disease Divorce" happens in all debilitating diseases that I see here.  So, Dementia is not the only Disease that causes this.

I completely realize I am difficult to live with.   That is why I asked the Neurologist to give me a medicine to calm me down and let me sleep at night.  And, since my LBD is getting WORSE I, more and more, don't want to be with people.  I refuse telephone calls, don't call people I used too, and do not pay attention to the world around me.  Many nights, I go to bed angry, depressed, and ready to fight anyone for any reason.  Of course, the Clonazapan finally takes hold and I go to sleep.

But soon, hopefully not for another ten months, I will move to the Memory Support Unit in Assisted Living.  I wonder how that will work out.  Right now, i have difficulties  being positive about anything in my life.


Friday, February 17, 2017

Waking up disoriented and frightened!

The other night, I was just drifting off to sleep, alone in our bed, and I sat bolt upright completely unaware of where I was.  I did not know what State, City, home, room, or even the day or month!  I was lost.  It took a few minutes for that to pass as I looked around the bedroom and began to recognize where I was.

This has happened before, but this time I was more frightened.  

I had my six month check up this week with my Neurologist and she spent some time questioning on this event and then connecting it to my hallucinations.  They may be related.  I had not considered that.   But then, I am not a Neurologist.

We also addressed m night time anger and agitation.  I was diagnosed clonazepan  to take at night to help me with this.  I took it early in my journey and I remember it helping.  My Wife has a different memory of this drug.   One of the doctor's here in Pensacola changed it and I have had night time issues since then.  I hope it works this time.

Taking different drugs is an experiment every time.  We will see how this goes, starting tonight.

Tuesday, February 14, 2017

Cocooning

As I have written, we moved to a one bedroom apartment in late December.  We were in a 1200 sq ft two bedroom apartment and I never felt comfortable there.  I wandered around the community and talked to people, looked at different parts of the community, and looked at vacant apartments.  If I was in the apartment, I sat in my chair or went to bed.  I seldom used the other rooms except to escape the political discourse on television that my Wife liked to watch.  Then I would go in the second bedroom, which we used as an office and put my headphones on.

Now, in our 600 sq ft one bedroom, I am comfortable.  I feel safe and complete.  I seldom go out of the apartment to seek companionship or relaxation.  The apartment has become my "safe place".  I also love the view out of our living room winds.  Trees, large lawn, bushes, flowers, squirrels, butterflies, birds, and the changing weather.  Both Marcel the Wonder Poodle and I love the show out of that window.

I find this interesting since we spent much of our life chasing bigger, better, newer, and more modern!   Now, I seek a compact, safe, comfortable, apartment that holds me in it's soft, secure embrace.

Thursday, February 9, 2017

People, and their opinions, anger me

Trust me, I cleaned that title up!  I enjoy playing billiards on Wednesday and Sunday Evening.   I am even improving!  But, there are a couple of men that play those nights that are very, very liberal  ;politically!    And they like to espouse their left wing dribble when we play billiards.

Now, I am a very conservative person, politically.  But I seldom express m political views here at Azalea Trace, because I know some of my fellow residents are very liberal and I do not want to offend the,  But these two individuals do not seem to have the same common sense and decency that I have.

In any case,  last night the liberal pool players were on their game, politically that is.  And the aggravated me.  Now, I had two choices.  First choice;  Get very angry, verbally flame spray them,  therefore alleviating them.  This was a bad idea because I was beginning to feel my old "Kick some Ass" emotions beginning to rise.  The second choice was to leave.

Since I still want to be respectful of other people's feelings, I left, after winning the game we were playing.  I said nothing about why I was departing.  I just left.  I spent the rest of the night pretty upset!  But, no one got hurt!  And no one's feeling got hurt, I hope.

I am going to stop playing for a while, to see how my emotions settle out on the issue.  I am also going to cocoon for awhile, just to help me calm down.  Of course, last night I was going to destroy my Pool Cue!

Since so many folks deny I have LBD, they are not in tune with the idea that I have emotional control issues because of my disease.  The deny the impact of "Sundowning" and they show now concern for my well being.   Actually, they are a group of self-centered assholes who need their ass kicked!!  I wonder what the community punishment is for that offense.  No, I think I will just cocoon for a while.  Discretion IS the better part of valor.  I hope I remember that for a while longer.

Sunday, February 5, 2017

I don't know what's happening; But it's happening fast!!!

My wife is showing the effects of the stress that comes because of the impact of LBD on me.   She denies it, to me, but I know.  Little things become overwhelming issues for her.  She is having memory issues of her own.  Short term memory issues caused by the stress of watching me deteriorate.    Difficulty doing things she really likes, because her mind just cannot process the steps to complete the task.  Even driving is becoming frustrating and difficult for her.   She recognizes these issues but will not address them.  I have asked her to, but she refuses.

It seems to me, our lives are falling into an abyss of confusion and dispair.  I have known for a long time that LBD would run my life, eventually.  Well, we are there, and there is not good.  
 

Sunday, January 29, 2017

Thought: Does it make sense for a LBD patient and the spouse to live together?

Think for a moment.  I have Lewy Body Dementia.  I suffer from "Sundowning" and my evenings are difficult at best.  I try VERY HARD to keep an even keel for my Wife.  She does not understand what I a going through, even though I have tried to expelling things and she has scanned clinical information related to my disease from LBDA.Org.  So, as the sun goes down, we are on a different plain with different expectations.

I understand that she cannot possibly understand how noise, projects, personal demands, budget issues, and many other normal life matters negatively impact me.  She also cannot understand how hard I try to stay calm, and unexcited for HER well being.   Of course, all of this makes my life worse.

So, as I sit here, trying not to get upset by the morons on "Finding Bigfoot", and it cross my mind, maybe it is impossible for two people, one without Dementia and the other without Dementia, to live together.  Also, it may be a very bad idea for a spouse or other close relative to be a Dementia patient's caregiver.  Because the are NOT trained to care for us and they want us to be normal again.  They also want us to live forever, and that is not going to happen either.   But, the Wife, Husband, Child, wants their Husband, Wife, Father, to be normal and there always.   That emotion is normal, but not rational and not comforting to the Dementia patient.  At least, not to me.

And everything in my life has changed!  I am unable to have sex, drive, do simple tasks like math or budgets.  I get exhausted doing things I used to do all day and all night.  Everyday requires a nap.  The things I watched and did for intertwinement and recreation are now either too upsetting or beyond my capabilities.  The things I was interested in, passionate about, are now uninteresting because I KNOW I will never do them again.  All that I was is gone, dead, and I am a captive of LBD.

I am completely overloaded with frustration and anger.  I feel unimportant, not listened too, and ignored.  I also feel like a burden.  Because I have LBD, I do not meet anyone else's expectations.  And, to make me meet their expectations, they beat me with their reality!   Do this, look at this, what is your opinion on this future issue!  The temperature is too hot, now it is too cold!  Truthfully,  I don't care!  Just deal with it.

No, I believe, based on how I feel, that living in a Memory Support Facility would be better for me and also for my Wife.  The shock initially, would be emotional and traumatic.  And, since we just moved to this one bedroom apartment to reduce our cost of living, we have to live here one year before either of us moves to a higher level of care to keep that reduced cost.  So, I will stay in the apartment, trying to keep my emotions in check, and trying to pretend to be as normal as I can.

Remember, I try to write true emotions and to record the actual impact of this disease in this blog.  This is as real as I can get.  Don't hold it against me, just try to understand it.


Friday, January 27, 2017

Lewy Body Dementia is a LONELY disease!

My last post, some hours ago reflected on how Sundowning impacts my television viewing.  But LBD is a very lonely disease.  Yes, I talk to friends on the telephone, email them, and have individuals and couples here at Azalea Trace that I am friendly with and enjoy eating meals with in the dinning room or other activities.  But no deep friendships, people in my living room, or in-depth conversations.   My Wife is very introverted, she always has been.  Her parents were very secluded and secretive.  They have no friends and had limited contact with very few relatives, ever!  And while my Wife and I have a great relationship, I long for contact with my friends of the past.  People I have things in common with and share life experiences with.

But, alas, no one comes to visit.  

How television impacts me

I used to love ruff and tumble, gun fight programs.  Detectives, military, spy movies, hero defeats the bad guy, shows were my stock and trade.   I liked the excitement, I liked the fights and gun fights, I liked the violence.  It expressed some of things I did in my Navy career.  Those movies and series were me.

Now, especially in the evenings, those types of shows upset me and stress me out.  I get agitated angry, and frustrated.  I can actually feel my BP rise and my heart rate increase.  Neither of which are good for me since I already have issues with both.   So, we have decided those types of shows are off limits for my evening viewing.  It just makes sense for me and my Wife.  Remember, if I am having issues, she suffers from my agitation.

I realize this is because of "Sundowning", but knowing why does not make it easy to change my viewing habits.  And sometimes, I forget why things impact me.  

Tuesday, January 24, 2017

The last of the move is done!

Today, I put up the drapes in the living for the third time!  It is a long story, but the end product is, after two types of curtain rods, three different types of curtains, and two lengths of brackets, not to mention numerous holes in the wall to patch, the drapes are up and we like them.  Then, today, we finally got the pantry organized.  So, all is done, we are fully moved in, and we are very happy with our decision to move to the one bedroom apartment.

One of the funny issues is doing the laundry.   We had a washer and dryer in our two bedroom and many times, I would decide I wanted to wash the pants I had on, or the under ware I had on, when I was loading the washing machine.  No issue right?  Well, yesterday, I got to the laundry room on the third deck and decided I needed to wash the Levi's I had on.  I thought, not a good idea!  I guess I will have to plan better in the future.

This was a good move for us in everyday.  We should have moved into a one bedroom first.  But, it it s what it is.  All is good now.  I feel better, sleep better, and the smaller apartment fits us better.




Wednesday, January 18, 2017

I am a prisoner!!

Last night, as I started to relax for sleep, I started a thought process about what I would do if my Wife would predecease me.  My thoughts immediately went to leaving Pensacola, moving back to Virginia Beach and all my friends.  Getting an apartment in an over 62 community.  Buying a new pick up truck and getting back into shooting!  Then, in a shock, it came to me;  Who was going to manage my medicines?!  

You see, without Linda, I can not put my medicines together for the week, well enough remember to take them!  I also cannot manage the budget, taxes, or the events of my day.  Oh yes, and I am not supposed to drive alone!  And, most likely, the next Neurologist's visit, I will not be able to drive at all.

The, I realized, I am where I will love until I die.  I am a prisoner for life.  Oh well, it is a nice place to be a prisoner.  The food is good, the living conditions are great, there is plenty to do, and the weather is good.  I guess I can deal with tis prison.

Today, I got to know another LBD patient!

I started a Dementia Support Group that meets every week here at Azalea Trace.   There is an individual that still lives in independent living like me, that I knew had Dementia of some sorts.  I ran into him at a local store and invited him to our meeting.  Today, him and his wife came to our meeting and I found out, he has LBD.  WOW!! Was I happy!!  Someone just like me.

He has many of the issues I have and he was as happy as I was to discuss issues with someone who has the same issues.  This is my dream come true.  His son is a Neurologist and agrees with his Father's diagnosis.  This is a gold mine for me and we both intend to continue to explore our condition.  I will keep you posted!!

Tuesday, January 17, 2017

Loosing the ability to Preach

Since we moved into Azalea Trace, I have voluntarily helped the Staff Chaplain anytime he asked me.  I enjoy doing God's work and Jim provides me many opportunities.  He is very busy with funerals and hospital visits, considering the community I live in.  So, helping him, helps him serve others and for that I am glad.

The last four weeks I have stood in for Jim for the Tuesday Chapel Service in Skilled Nursing.  It is a well attended service complete with hymns, responsive reading, music provided by two very dedicated musicians,  and of course a Sermon.  Each time I stand in for Jim on Tuesday, I have to set up the entire service including selecting the Hymns and Responsive Reading as well as writing and delivering the Sermon.   It is the Order of Worship that has cause dmd increasing difficulty.  It seems I cannot translate the Hymn names and numbers from the Hymnal to the printed Order of Worship.   This confusion has become a source of humor for the two musicians.  They have to figure out what Hymn I really want.  One time, recently but not in this four week run, I used the wrongHymnal all together!   That caused some confusion for all of us!

I am also having issues and difficulties delivering the message.  I get confused with verses, cannot find them in the Bible unless I mark the pages or print out the verses on my script, and even then, I get confused.  More and more, I am feeling disconnected and disoriented even in familiar surroundings and doing familiar tasks.  

Many people do not catch my difficulties, but the Organist and Pianist both do.  They are kind about it and even find some humor in my difficulties which they share with me after the Service.  I actually appreciate they humor and enjoy the laugh.  But, things are getting difficult and I know m ability to deliver an understandable service are drawing to an end.

Wednesday, January 11, 2017

Restricted!!

The Activities Director is planning a trip to the USS Alabama next month.  It is on a Tuesday and I want to go.  Not as a tourist but as a tour guide for others.  I know more about Battleships than anyone here and most living people.   But, there is a problem, the trip happens on a Tuesday and that is one of my Wife's Bible Study Fellowship (BSF) days.  She told me I should not go because I get disoriented and tree and I most likely would have difficulties.  And she is very protective of me and does not want me alone if those issues occur.  So, I am restricted to Quarters!

I agree with her, in principle, but I think someone on the trip could help me if I needed it.  But, would they know what to look for in my actions and mental capabilities?  The obvious answer is no.  But it still bothers me that I no longer can go places that I want too, on my own.  It is an unavoidable fat of my LBD.

Tuesday, January 10, 2017

Changes, challenges, and frustrations

The last two weeks have been difficult.  We are completely moved into our new apartment.  Everything is in it's place, although we sometime have difficulty finding that PLACE!  But, we have not established a routine and that is causing me great difficulties.  I have not had a nap in two weeks!  My days do not have order.  That coupled with being busy since Christmas filling in for the staff Chaplain and I am overwhelmed.

I have become more confused, I have noticed my BP running higher, and last night I wet the bed.  So, the move has negatively impacted me and my LBD has definitely progressed.  Even writing this post is difficult because I cannot connect my thoughts to the keys.

Today, I had difficulty Preaching in Skilled Care because my ability to remember and deliver what I wrote was severely impaired!  I was not prepared for this and I am concerned I will not rebound, ever.


Sunday, January 8, 2017

Why did we move to a one bedroom apartment?

Living in a retirement community, you have to understand that many people want to monitor what you do.  Naturally, there is the management and staff.  That make perfect sense since they are responsible for our well being.  Then there are those "inquisitive" fellow residents that just have to know everything about you and your personal business!  Believe me, they ask some very personal questions!

So, naturally, we have been fully questioned about the reasons for our move.  Now, I know a number of folks that have "downsized" since we moved in over two years ago.  And I am very sure their under ware was thoroughly inspected also!  Still, it is a little aggravating to have the "Spanish Inquisition" directed at you every time you go for a meal!  But, here are the REAL reasons we moved.

First and foremost was our budget.  When we were offered the Two Bedroom Master, we did not thin we could afford it.  But, we were assured we could.  Well, numerous government programs and no COLA's convinced us we were right.  Now, we could drain our saving and sty in the two bedroom of another ten years.  But we are not people that spend every penny we have.  The move reduces our monthly outlay by $710 a month.  Nothing to sneeze at!

Second, having rooms you seldom use, furnishing them, cleaning them, heating and cooling them, makes little sense and also makes the electricity bill higher!  Additionally, people here at Azalea do not come to your home to socialize.  They socialize in the common areas.  The lounges, card rooms, Dinning Room, auditorium, and recreation facilities.  Their apartments are their private refuges.

Third, this move with it's reduction in rent, will also reduce the cost of any higher level of care either go us might require.  Now, we have to be in the One Bedroom for one year before we need that increased level of care to receive that benefit.  But, it is still a definite benefit.

Fourth,  a smaller, more cozy, apartment makes me feel more secure.   Remember, I have to know, every minute of every day, where my wife is.  If she was in the master bathroom and I was in the living room, I would call out and ask where she was!  In the one bedroom apartment, if I sit in y recliner, I can see every room and who is going where.  Seems silly to you, I know.  But that is how my LBD mind works.

And finally, I know I will most likely be a charter resident of the new Memory Support Facility that ACTS is adding during the soon to be started Assisted and Skilled Care facility expansion.  A one bedroom apartment would be good for my Wife with me living in a different part of Azalea.

So there you have it.  Our reasons for our move.  Oh, how do I answer the inquisitions here?  "WE moved because we wanted too!"



The MOVE; Post mortem

I wrote before that  the move, just 50 feet or so around the corridor, was very difficult.  It has impacted me in various ways.  Hallucinations have increased.  I am seeing people that obviously are not there.  I am more lost when we are in the car.  And I am very agitated!

Yesterday, we had to move a few things OUT of the apartment that just did not fit.  Our Son came to help and we were done in record time.  Now, all of the pictures are up, we have put almost everything in it's place, and our "Tiny House" apartment is starting to look like home.  I like it here!  I just have to get used to where everything is.


Thursday, January 5, 2017

The move, day 7. The last report!

We slept until 10AM today!!  Then we got busy putting things away, putting up art work and pictures, and getting rid of some things we moved into the new apartment.  Sometimes things you thought would fit, just don't!    Sometimes, you look at things you bought and ask yourself;  Why did we buy that!?

The apartment is beginning to look like home.   So, this will be the last report on the move.   It has been a very difficult process.  Tiring, emotionally and mentally draining, and overwhelming for me and Linda.   You would think moving 50 feet to another apartment could not be too difficult.  Not so.  At least not at this stage in our lives.  And, of course, downsizing has it's own issues.  But, we have found some creative places to store things!!

This move is good for us financially, health wise, and physically.  Our budget is in great shape because of this decision!  We have a smaller apartment to take care of, and we will have a lower rent now and lower long term care costs!  All in all, this move has positive long term budgetary benefits.

Wednesday, January 4, 2017

The move, day six!

The good news is, we are out of the two bedroom apartment.  We turned the keys in today!  The bad news is, we have pictures to hang and stuff to find a place for.  And while we have many things organized, we have quite a bit more to deal with.  I did get the drapes hung in our bedroom today.  That was something I wanted to do but never found time to do.   We also have our car loaded with things to deliver to our son and grandsons.

But right now, we are both completely worn out!  My legs hurt, I have had some hallucinations, and I am too mental exhausted to decide where things need to go.  So, we re going to bed with no alarm clocks!  While the move is not complete, it is close and we need the rest.

Tuesday, January 3, 2017

The MOVE, day five

OK, the two bedroom apartment is almost empty!  I have to take the pictures off the walls and the curtains down and mounted in our new bedroom.  That was supposed to be today, but, other things got in the way.   My wife got the kitchen completely organized today and that was a great undertaking, considering it is about ¼ the size of the other kitchen.

We are both worn out!  But, I have to have the apartment done and turned over by tomorrow.

Last night, I had a small medical issue.  I woke up about midnight, having to go to the bathroom.  I looked down at my skivvies and saw blood!   I called my wife who was still up and we discovered the right side of my scrotum was bleeding, rather strongly.  We used hydrogen peroxide to stop the bleeding and I went back to sleep.  It was no small amount of blood!   I saw the Nurse Practitioner today and she said the move caused it!!  I have been very sweaty, wearing levi's, and moving a lot, doing some heavy lifting.  Yes, I know I am not supposed to do that.  But, these things have to get done.  In any case, the sweat and chaffing caused a worn spot that bled later on.   No BIG deal!

This has been a tough move and I will be glad when we are done.  

Monday, January 2, 2017

The Move, Day four!

Last night it rained heavy!  Ferocious thunder and lightening!  So, sleep was difficult.  I had to get up early because the local dry cleaner was picking up two area rugs to clean.  Then, I had to get ready for the Chapel Service in the Skilled Care facility that is part of Azalea Trace.  I truly love leading those Worship services.  Both of those done, I went to work to help my Wife make progress emptying the old apartment.  We rented another truck to take some bedroom furniture to our son's home.   He came over to drive the truck and our youngest grandson and our son moved the  furniture.   During that event, the rains, thunder, and lightening came again, in a big way!  Even Tornado Warnings!  We also moved the cubes and now we are down to small items, more books, and papers, to put away.  We should have the old apartment empty tomorrow.

I will hang curtains in the bedroom and things on the walls tomorrow, I hope.

We sill have a lot to find places for.  Some things will not make it into the new apartment.  Some of those things have never been used!  For instance, we had enough obscure kitchen tools to start a restaurant!!   Since our kitchen is small, gourmet cooking is probably a thing of the past.  No big deal.

So, we made great progress today, but we are getting tired and worn out.  One more day of the big push and we should be living in one apartment.

Sunday, January 1, 2017

The confusion of Dementia.

Let me explain something I did.  We ordered online, some flex light strips.  They did not meet our needs and I wanted to send them back.   So, after getting a return label, I packaged what I thought was the Flex Light Strips and sent them back.  That was 10 days or so ago.  We shifted apartments in our retirement community, and I bought LED bulbs for our ceiling fan lights.  I needed this LED bulbs yesterday and I could NOT find them.  They were NOT where I put them or at least where I thought I put them.  My first and predominant view was someone stole them!  

I went to bed angry!  About two in the morning I woke up remembering the return package of the flex light strips and I remembered seeing the strips in a box of things that day.  The light came on, I sent my LED bulbs to the Online company.

I am getting more and more confused and incapable of normal mental organization.   This has been frustrating, and depressing for me.  It has also illustrated my condition and how the progression of my LBD has further reduced my mental functioning, called "Executive Function" by my neurologist.

I wonder what will happen next?

The MOVE day three

We Slept in this morning.  I got up at 10 AM and my wife got up at 11 AM.  But we hit the deck running after that.  I moved the remaining four pieces of  furniture into the apartment.  It is a little tight, but it works and there are safe, trip free passages everywhere.  We have spent the remainder of the day moving into furniture.  Book, books, and more books.  I am married to a Librarian.  We moved our clothes in and we still have the "Cubes" of genealogy projects to move.  That will be tomorrow.  I hope to be done by Tuesday.  If not, I am ordering a dump truck!  I am done.  How do we have so much paper and books!!  None of this stuff is mine!!  Oh well.

In any case, I can see the end.  Tomorrow will be another tough, busy day.  We have a dresser and two night stands to move to our son's house.  We are also giving them our rocking chair that we bought 44 years ago.  I am NOT happy about that, but it does not fit here.   I will rent a truck tomorrow and get that over there tomorrow.  That will leave the two bedroom apartment void of furniture.

Marcel, our remaining miniature poodle is not adjusting well to his new surroundings.  He lost Cherie a three weeks ago and they were pals.  He now howls when we leave him alone.  He is also peeing in the house.  I hope he gets his act together soon.

This has been stressful and that will not change for the next few days.