Tuesday, December 31, 2013

The stress of the Holidays is over

I am very happy that this is the end of the year and tomorrow marks the end of the Holidays.  Don't get me wrong, I enjoyed Christmas.  Family, friends, good food, and decorations.  Yet, from my youth, Christmas has never been a happy time for me.  I get depressed, feel disconnected,  feel unwanted, and anxious.  I have bad memories about Christmas past from my youth.   Yet, Christmas is when I officially proposed to my wife.  I met her on a blind date on Thanksgiving Day and we got engaged on Christmas.   She is my other half.  She completed me, helped me to grow, and taught me to really love and enjoy life.  So, Christmas has some good memories.

Just the same, the Christmas holidays stress me.  There is so much to do and it is all so temporary.   And New Year celebrations are just a reason to get drunk!   Which is something I quit many years ago, thank God!  So, I am very happy that this time of the year is done.

Since I have been diagnosed with LBD, I have tried to find positive things in everyday.   This is how I deal with the effects of LBD.  I can laugh at my memory failures.  Snicker at my imbalances and falls.  And even be amazed at my loss of muscle mass.  I say that my legs are "unhappy" when they hurt every evening.  And I even understand my body temperature swings and constipation issues.

But my emotions still confuse me.  While I can laugh at my issues, I still get severely depressed over things that should not effect me.  For instance, Christmas cards.  We send cards to friends and family and we do not get return cards.  I realize people are busy, mail gets lost, and things happen.  Yet, we make an effort to contact people that are important to us and they act like they don't care.  Silly, I know, but it is how my mind works.

One of the most cherished things in my life are friends.  I have everything I need.  If I find something I want, I buy it.   But friends, true, loyal, friends cannot be bought.  They are a gift from God!  

LBD is a disease with a blessing.  Dementia makes your short term memory fail.  Later in the disease, long term memory fails.  In the middle of the disease, your autonomic functions begin to fail.  The loss of short term memory is a blessing in that the things the depress me, upset me, and disappoint me, I forget, quickly.  While I am depressed today, I will forget why, tomorrow.

There I go again, finding positives among the problems.

Wednesday, December 18, 2013

This Blog is s lifeline for me!

Being able to write about my journey is a lifeline for me.  There are stresses, fears, and frustrations, that I can express in writing but not openly in discussion.  It is like I am writing to a very close friend!  That may be weird to some of you, but it is therapy for me.   It is also a connection to a support group.  Many times, you reply wit encouragement, suggestions, or even criticism.  Each reply is welcomed and cherished.  It is like family or close friends trying to help!

I have been blessed with the ability to express what is going on as I go down the LBD road.  Many LBD patients cannot do that, and I am sorry for them.  Maybe they need encouraged or enabled to blog.  That is what my wife did for me.  I would have never ventured on this journey without her enabling me.  Now, I write all the time.

I have also made some friends and compatriots in the LBD community through blogging.  That is a big benefit of being open about this disease.

So, I thank each one of you and I pray that you are all doing as well as you can.  You will always be in my thoughts and prayers.

Tuesday, December 17, 2013

A diagnosis of Lewy Body Dementia

Lewy Body Dementia is the second most prevalent form of Dementia following Alzheimer's.  Yet few Doctors know much about it and the public is all but ignorant of the disease.  I have an acquaintance at the local recreation center that had been diagnosed with Parkinson's.  He does have some of the Parkinson's symptoms, but not the shaking.  But his short term memory os nonexistent.  I just heard that he finally has a confirmed diagnosis of LBD.  I am happy the neurologist finally came to a decision.

In this gentleman's case, the neurologist has not prescribed the most effective Alzheimer's drugs and therefore, he has not experienced the benefits that I have.  Maybe now, he will start taking Arecept and Namenda and I hope they at least slow his mental decline.

Getting an accurate diagnosis is required to receive the correct medicines.  But it is even more important than that.  With an accurate diagnosis, you are first in line for new medicines that are compounded to help your specific condition.  Treating someone with LBD with the standard Parkinson's drugs is useless.  For instance, Sinemet does not work for the rigidity and instability caused by LBD.  Yet, neurologists constantly give those drugs to us!  I am lucky that my neurologist here in Florida realized that.  Now, my stomach is not upset all the time!  But I spent a long time with the dry heaves from Sinemet!

I have been blessed in my LBD journey because I had neurologists in Virginia and here in Florida that actually understood LBD.  But I have also had a couple of neurologists that found not even spell Lewy Body Dementia!!  It is terribly frustrating to have something wrong that your Doctor can not understand, well enough diagnose.  Again, I am glad this gentleman has finally received a definitive diagnosis.  But LBD is a difficult diseases because of it's ups and downs.  One day you feel pretty good and the next day, you are worse than you ever have been.  At least, with an accurate diagnosis, we can get the best treatment for our disease.

Sunday, December 15, 2013

Indecision, confusion, and doubt, about the future

I have a lot of confusion and indecision about our future living plans.   I have written before about us being on the waiting list to move into a Continuing Care Retirement Community (CCRC) here in Pensacola.  It is a great facility with a wonderful reputation and track record.  Their financial balance sheet is healthy.  Just the same, there is a significant initial outlay and there is a stout monthly fee.  That is the price of future security.  There are facilities that do not require an up front fee, but they do not offer any future care guarantees.  You are at the mercy of the fees at the time you need the care.  In a CCRC, your monthly outlay does not go up when one or both of you require assisted living or professional care.  That is what you are purchasing with your initial outlay and your high monthly payments.   Sort of like the old FRAM oil filter commercial; "You can pay me now, or you can pay me later!"

However, I am becoming reticent to move at all.  I am becoming very secure in my surroundings and the idea of moving frightens me!   When we discuss the move and the size of our Apartment, I become quiet and frightened.  And this was always my idea!  But now, any change unnerves me.

We worked very hard all of our married life.  We saved very diligently, both worked most of the time, and did not live too far above our means.  We could have saved more I suppose, but we wanted to have some fun along the way too, and we did.   The initial outlay will take about one-third of our savings.  That idea frightens me too.  However, staying in our home has known and unknown expenses that can deplete savings quickly.  So, I realize there is no perfect living situation.

I like the idea of renting, because I do not have the responsibility of any maintenance.   And in the Panhandle of Florida, both is permanent thanks to Hurricanes!   So the home you love may not be there next year!  And the CCRC we are on the waiting list for is on high ground and made of cement. It has withstood a Cat 4 Hurricane and survived with little damage.  So, it is a good candidate for storm survival.

What really bothers me is moving, change, costs, initial outlay, and did I say change?!   I also question the need to make this move.  I am doing pretty good right now, I think.  Maybe I am too close to make a correct estimation of where I am.   But the neurologist is useless.  My psychiatrist want me is Assisted Living right now!   And I know I don't need that level of care.  Do I?!

I have had problems making decisions for quite a while.  I just can't settle on any decision!   My wife is very good at looking at the pros and cons of any decision.  Through our marriage, I have made good decisions and some bad ones.  My weaknesses have been cars and houses.  We have owned seven houses and a mobile home.  Most of them I made money on.  All of them were good for the time we were in them.  But now, moving out of the, most probably, the last home we will own is a decision I cannot make.

So, the best thing I can to is trust my wife's decision making and try to not come apart mentally as we get closer to our next, and final, move.  While I feel somewhat better as I described in my last post, I also know that mentally I am not able to deal wit changes is my routine or living conditions.  I hope that once we are settled the new place will be my place of security.  Right now, I am up in the air.  

Thursday, December 12, 2013

I am feeling better! What next?

The fact is that LBD is s roller coaster ride or feeling good and bad.  Symptoms get better and even seem to disappear and then, BAM!  You are much worse than you have ever been.  So I am very reticent to say that I feel much better.   I have been down this road before and I know what's coming.  Just the same, it feels great to be on the upswing.

I was discussing this with my Wife as we drove home from our weekly Bible study at the local Assisted Living Facility.  There have been a couple of changes in my life.  First, at the direction of my GP, I have lost over 50 pounds!  I now wear 36 inch waist trousers.  I was tight in 40's!  I actually tried on 35 in Wranglers and they fit great.  But I bought 36's because Jeans shrink!

Another change is the addition of a new miniature poodle in our home.  She is almost 13 years old and her parents died recently.  Their children did not want her and the caregiver is a friend of our Daughter in Law.  We met her and immediately adopted her.  She has fit into our family.  Marcel the Wonder Dog loves having a sister.  They seem to be buddies already.  She has been to the Vet and received a remarkable report.  While she needs some dental work, she is very healthy!  We have both fallen in love with her and all four of us are settling in well.

These two changes may be the reason for my recent upswing, or not.  It is hard to tell.  My energy levels are up a bit.  My strength is still not there, and my short term memory is poor, but I feel better.  I feel like the gloom has lifted!  It is amazing!

It may also be the happiness of the Christmas season!  Our home is decorated and family plans are all made.  My Wife is planning to make her specialty pies and all the presents are wrapped.   The joy of the season permeates my being.  Christmas is the celebration of the beginning of God's Perfect Plan to bridge the gap between sinful mankind and Himself.  Jesus Christ stepped into the stream of humanity as a child to be Crucified, Dead, Buried, and Resurrected 33 years later , to pay the price, once and for all, to purchase us,you and me, out of the chains of the slavery of sin!  Now that is a reason to celebrate and feel great!

SO, while this may not last long, I will cherish it as long as I can.  After all, it's Christmas!!

Monday, December 9, 2013

A topic no one wants to talk about

I once quoted the Poem by Robert Frost; "Stopping by a Woods on a Snowy Evening" in an early post on this blog.  A friend that I worked with at the time, who was having his own battle with a terminal disease came to me and said; "After I read your post, I thought you were going to commit suicide!"
I told him, no.  I was fine.  Barry died last year after a long battle with cancer.  He fought for normalcy up to the end.  He worked far longer than he should have, yet work was his normalcy.  So, in retrospect, he did things right.

Suicide is something no one wants to discuss.  The neurologist I owe my long time existence too used to ask me, every visit, if I was suicidal.  I always told he no.  Once she asked me if I was suicidal and I replied, no.  She then asked me if I was homicidal, I told her; "No, I liked women!"  She laughed! And that was good because she seldom smiled, well enough laughed.  But suicide is not a laughing matter.

I cannot tell you that I have not considered suicide because I have.  If you will be honest with yourself, most of you have too.  In that difficult time,  probably as a teenager or young adult, when all seemed too bleak, you thought about it for a moment.  Then, you decided suicide made no sense, and you were correct!

If you are a true Christian.  A faithful follower of Jesus Christ, suicide is probably repulsive to you.  Why, because God gave us life!  Then, because we were sinners, he enacted His perfect plan for our salvation, the birth, life, death, torture, Crucifixion, death, burial, resurrection, and accent ion, of Jesus Christ!  Our Savior defeated death once and for all!  Since we do not have the power or the right to start life, we do not have the power or right to end our own life.  One of the Ten Commandments says;  "Thou shalt not murder."  It does not say thou shalt not kill!  There is a difference.   Murder is taking an innocent life.  Killing is what soldiers do and that is covered in the Old and New Testament were we are told to follow our leaders and they will be held accountable for the actions they order us t do.  Suicide is murder.  Self murder!

Just the same, I can understand fully, how someone, in an impossible situation, facing pain and suffering much greater that he or she can endure alone, may decide to end their life.  It is an action that I cannot judge.  "Judge not, lest you be judged."

For those of us with LBD, decisions come hard.  In my personal life, I was once very decisive.  Now, I have difficulties deciding when to go to the bathroom!  And sometimes, I get than decision wrong!  For instance, a few months ago, we decided to place our names on the waiting list for a local Continuing Care Retirement Community.  Both of us agreed, but now, I am having second thoughts.  Why,  costs, the act of moving somewhere again, what to do with all our possessions that won't fit in our new place, the thought of giving up what little independence I have, and most of all, the idea that moving there cements the fact that I will never get better.  It is the final move, the beginning of the end.  The point of no return.

So, Robert Frost's poem again has meaning to me.  While I fantasize that I have "miles to go before I sleep." reality tells me different and that depresses me.  Depression leads me to deep, dark, thoughts.  And those thoughts inevitably lead to speeding up the process.  If the endgame is death, and if I am only going to get worse, why no bypass the next downturn and just end this now?!

But then, my mind shifts focus to things I still want to do.  My wife, son, grandsons, family and friends that I love to be with.   I am not afraid of death because Jesus has already defeated death.  "In the twinkling of an eye" after I take my last breath, I will be in the presents of the Lord in Heaven.  I have no fear!  But, I don't want to have the sin of murdering myself as the first topic the Lord brings up!  So, I will stay here until God calls me home.  He has work for me to do and I will do my best to accomplish that work.

If you are suicidal, or homicidal, don't hide it.  Talk to someone, your Pastor, your doctor, you spouse, a friend, or even the suicide Hot Line!  Talk it out!  Put your emotions and feelings out there for all to see.  Don't hide your pain like I do.  Why, because your friends and family can help you bear that pain, if you permit them too.

Friday, December 6, 2013

Ups, down, and holidays

We have discussed this before, yet as I sit here ready to explode, I thought it would be therapeutic for me to discuss this again.  I have felt frail since I woke up this morning.  Unable to focus, diminished vision, weak muscles, and instability.  My memory is foggy and I feel generally diminished.  This accounts for the down portion of this posting.

We took a long walk today because it was 75 degrees out and very pleasant.  We walked at a brisk pace and completed 3.2 miles in 59 minutes.  A good pace for two folks over 62!  We enjoyed the view of our surrounding neighborhood and the nature that lives in this area of Florida.  When we returned home, I was exhausted, in a good way.  But, as we relaxed, I became frail feeling again.  Finally, I decided to take a nap.  Not a new thing.  But the urgency to take a nap was new.  So, I went to bed and slept for 3 hours.  I awoke, suddenly and in somewhat of a confused state.  I had a violent dream and actually woke myself up punching my pillow.  Not a good way to wake up.

The staccato stress of the Holidays, is difficult to deal with.  Actually, anything out of my normal routine upsets me most of the time.  OK, all of the time.  It is confusion because I enjoy the outings and Linda does a great job limiting our social schedule.  But, as I have wrote before, it is the planning of any event that stresses me more than the event itself.  The running around planning, making things, packing things, setting up schedules, drives me up the wall.  I would be much better if I was just told, an hour before the event, to shower and get dressed to go out.  When I do my studies for the Bible Study we lead at our local assisted living facility, I do that study and preparation the night before the study!  This takes away the pre-stress and also has the study fresh in my mind for the next day.  I truly enjoy the Bible study because I enjoy the people in the study.  Both the preparation and event are controlled on my timing.

It is much like meals, getting ready for meal and cleaning up after a meal is torture for me.  Now, I am better here if I do the clean up.  Why, because it is done at my pace.  I am in control and alone in the kitchen, lost in my thoughts.

So, as we rush towards Christmas, I need to find a way to decompress and relax.   I need to concentrate on the fun and fellowship of the event and not the stress of the preparation.   So, as we learn to manage this disease,  I need to be more open with my frustrations and fears.

Monday, December 2, 2013

Holiday stress

Thanksgiving is over and Christmas is 24 days away, I can feel the stress growing already!  We do our best to reduce holiday stress.  We decorated the house already, all the Christmas shopping is done, and our party planner is kept purposely empty.  We also do our best not to be out after dark, because I do not do well in the dark!

But there is still stress that comes naturally with the season.  I really do not know how to deal with that.  We try to keep our routine intact.   That helps me.  But there are stressors that lurk in the decorations!

We change many things inout home with the decorations of Christmas.   Familiar items are put away  to make room for treasured momentous.   We have some precious ornaments that are now displayed on a small wire tree.  I knocked the tree over and onto the floor the other day trying to operate a wall switch!  I broke a Lennox Cross that has been with us forever!  I felt horrible!  I apologized many times and my wife is being very understanding over this.  The accident is the result of my rigidity and loss of vision from LBD.  We both know that, but it still frustrates me and causes extreme stress for me!

I am sure there will be other issues caused by LBD.  This is the first of the year!  And the incident set a negative tone for me.   Hopefully, I will forget it soon.  That is also a benefit of LBD!  But we will be ever vigilant to reduce stress this Christmas season.

Tuesday, November 26, 2013

The benefits of having a disease that leads to death!

Yes, there ARE benefits to having a degenerative neurological disease that is fatal, you do things you probably would not have done!  Today, at the Gulf Coast Alabama Zoo, we had the wonderful opportunity to spend 30 minutes with two beautiful tiger cubs.  They were Bengal Tiger cubs, three months old, and full of energy, wonder, and mischief!  The Zoo uses "animal encounters" to raise support since the Zoo is self supporting.   My Wife, Son, Daughter in Law and two of my three Grandsons were in a private area with a professional from the Zoo and a male and female cub.  The were BIG!  They had BIG paws, teeth,  weighed 30 pounds, and plenty of strength.  They loved playing with their prospective food, humans!  The loved to chew and lick.  If you got on the flow and layer down, they loved to walk on your back, lick you hair, chew on you, and play as only Tigers can.  They bite necks, legs, butts, and in my case, ears!  Not hard bites, but playful bites to see your reaction.   It was just plain fun.  And for someone who grew up next to "Jungle Larry's" first exhibit at Puritas Springs Park on Puritas Avenue on the west side of Cleveland, it was a dream come true!

I have always loved animals and encounters like this excite me and give me great pleasure.  In the past, I may not have agreed to spend the money to experience this, but now, I have learned to take advantage of opportunities when the present themselves.

I have known individuals in similar circumstances as mine who still don't take advantage of fun and exciting opportunities.  They are saving their money for something that may happen in the future.  And I agree with holding some back for that unknown event.  But, life is short, so if I can, I will.

Now, I am extremely exhausted from the drive to and from, and the event.   My legs hurt and I am having trouble moving around.  But it was well worth the pain.  So, I will sleep in tomorrow morning,  and then, I will begin looking for another life experience to try!  

Thursday, November 21, 2013

Unfulfilled Dreams

Before we left Virginia, I had an appointment with a neurologist that was new to my doctor's practice.  She was young, just out of her residency, and full of new knowledge, looking for someone to use it on.  After a short time of talking, she told me that I had not YET come to terms with my disease.  I disagreed with her, loudly.  Now, a couple of years later, I can say that she was right!

I can now say that I am fully engaged with my Lewy Body Dementia.  It is forefront in my thoughts and it fills my days with reminders that LBD is here to stay.  In the beginning of this journey, I looked at my disease as though I was looking at someone else dealing with it.  Now, I see it in the first person.  I also used to say;  "If you have to have a disease, this is a good one to have, because you forget the bad parts."  That is no longer true and I don't say that anymore.  I believe this is the middle innings of this journey and the stakes have increased!

I think continuously about the past.  Friends, events, places, things I did wrong, and unfullfilled dreams.  There comes a point in this journey when you realize, it is over!  You have done all that you will accomplish.  No more new mountains to climb or challenges to win.  Your legacy is already written and the ink is dry.

That's not a bad thing.  It is true that I have now accepted the totality of Lewy Body Dementia.  But there are some things I wanted to do that I just never did.  For instance, I always wanted to be a survivalist.  Live on a large piece of property, off the grid, growing the majority of what I ate, making my own electricity, totally independent from society.  My thoughts in the evening still go to my concrete house, on 25 acres, with solar and wind mill electricity, no phone, television, computer, or neighbors.  But you and I know that will never happen.

Another exceptional blogger who is a caregiver for her husband who has LBD, wrote an early blog about her husband purchasing a new pick up truck with all the bells and whistles!  It was shiny, chrome covered, and beautiful.  He dented it the first day he had it!  That truck was most likely his dream and he was going to fulfill it, at least for a day.  I also knew of a retired Naval Officer who was diagnosed with terminal cancer.  He always wanted a Corvette.  So, he went and bought a brand new Corvette.  Drove it home, parked it in the garage and never drove it again.  He died less than a month later.  But, he had his Corvette.

For someone on a journey like mine, that unfulfilled dream haunts us.  Work, family, responsibilities, saving for the unknown future retirement, saving for security, all take precedence over paying for dreams.  We work crazy hours, to pay for things we don't want, to satisfy the needs and wants of the ones we love.  Most men sacrifice their dreams for family and security.  But in the end, I never knew someone who said; "I wish I would have worked longer or harder."  In the end, we realize that money does not purchase happiness or security.  It does not satisfy our inner needs.  It is dreams that fill our thoughts with happiness and pleasure.  And even though I will never have my concrete survival home, every night I go there and lock the door before I go to sleep.

Wednesday, November 20, 2013

Telephone calls are a lifeline for me

Since we moved to Florida, I don't get to see my Navy buddies from the Tidewater Area of Virginia and other places around the country.  Many of them still work and travel is not an option.  I fully understand that.  But telephone calls keep me going!

Every week I spend at least and hour on the phone with my best friend Jerry!  We discuss anything and everything.  His calls rebuild my moral ands my spirits.  I have another friend from the USS Stein days that calls me at least once a month.  CJ and I talk about our exploits and old friends.  I look forward to his calls.

I get monthly calls from one of eh Supervisors that I worked with for 20 years in civil service.  Steve and I enjoy a special connection from our work days as well as with my disease since his Father had Alzheimer's.

Other friends call less frequent, but their calls are just as precious to me.

I remember when I was on active duty and deploying on a regular basis.  Telephone calls home, to hear my wife's voice, to talk about home, was the best, sweetest, thing I had.  Back in those days, long distance, overseas calls were VERY expensive.  But we did not care.  It was our lifeline!   Well, today, calls from friends and relatives in still my lifeline.

With LBD, it is easy to get overwhelmed with the emotion of; "No one cares about me anymore".   Depression, is a real issue, even if I deny it.  But a call from a friend is just the medicine to cure the depression blues.  To hear how everyone at work is doing, or how the last Gun Show was, is a salve to my damages psyche.  I still check out the local news on Hamptonroads.com first thing, every morning.  I check the weather report, and the obituaries too.  I need to stay connected to home.

I know it is easy to forget an friend or relative that is some distance away and impacted by a disease.  They are out of sight and out of mind.  Yes, you send them a Christmas card.  Yes, you think about them is they come up in a conversation.  And you probably tell one of their jokes or sea stories every once in a while.  But they never know that because you never call.

Email is nice, but your voice is the medicine we need.  The only thing better would be a visit.  But as with me, work always comes first.  I understand that.

The few times a month that I am home alone, I never have the television or radio on.  I enjoy the quiet, and I want to be able to hear the telephone ring so I don't miss a call from a friend.

Some time alone, to think

My wife and I are together 99% of the time.  She gets a respite from me on Wednesday mornings when she goes to a Bible study.  Linda has been involved with Bible Study Fellowship  (BSF) for many years.   It is an international Bible study that actually requires the attendees to do the assignments!  She truly enjoys this time away and it depends he walk with the Lord.

I get the only time alone at home that I get each week.  I do not go out of the house during this time.   do find projects inside the house to do, or I surf the Web, or talk to old friends.  I am pretty good at filling this time with things that I enjoy.

But it illuminates to me, our need to have some alone time, to think, relate to others, or foo something that is totally our interest.  My wife is my only caregiver.  I know that I am on her mind 24/7/365.  Managing my meds, checking how I am doing,. reacting to the many mental changes that happen throughout the day, worrying about the future, managing our finances, driving me where ever I need to go, and making sure I take my meds!  She needs a pay raise!

If it were not for Linda, I would most likely be in a professional care facility that could keep me on track.  By, Marcel the Wonder Dog and I are under her expert, loving care.  But still, she needs time to pursue things that enrich her.  I do not know how to make that happen, but we need to.

Today, my mind is more confused and detached than normal.  While I am fine to be alone, I notice that I cannot concentrate on any one subject.  It is like, surfing through an article and having advertisements pop up every paragraph.  Those BIG ads that fill the entire screen and are loud!  After the shock of that mental interruption, I have difficulty getting back to was I was doing.  As I have written before, that is caused by the failure of the "Executive Function" in my brain.  This LBD issues is more frustrating than others.  I just can't stay on point.

For instance, at this point, I really do not know what the main point of this post was supposed to be!  I sat down with a need to write a post on some important topic, but, for the life of me, I don't remember what.  Just the dame, it illustrates the condition and that is good for the readers.  Thanks.

Saturday, November 16, 2013

Feeling down

Today, I had an outing planned.  The person that I wanted to go on that outing with could not make it.  So, because I can no longer drive alone, I did not go either.  I suppose that's the way it goes.  My Dad used to say that he hated to make plans because when they happened the event was anticlimactic and if it did not happen, he was disappointed.  I am beginning to understand what Dad meant.

Older adults are treated as burdens in our society.  Our infirmities are looked on as an inconvenience to the young.  Even the Affordable Care Act penalizes the young to help the elderly.  How long will it be before the premise of the movie "Soilent Green" becomes real?  If you do not know about this movie, find it and watch it.  It is much like Orwell's "1984".

But folks with experience, and you don't get experience until you are old, have much to offer if the young would only listen.  But alas, they don't.

I wish so much, that I had listened more to my Dad and learned more from him.  I had more time with him than many other young people do.  But it was not enough!  Now, I long for his sage advice and teaching stories.  No computer, blog, book, or recording can ever replace one on one discussions with a person of experience.

Instead, Marcel the Wonder Dog and I sit in my power recliner and lament our situation.  I once knew an older person who told their children; "If you don't come see me now, don't bother coming to my funeral!"  That was a difficult pill to swallow then, but I understand the sentiment behind the statement.

When we are young, we are in a hurry and we tolerate nothing or no one that will slow us down.  Career, interests, friends, love, excitement, all come first.  Then, we get old, and all of the things that kept our attention seem to fade away.  And, because we did not take time to build relationships, we are alone, wondering what went wrong.  A friend sent me an email the other day that had this saying on the bottom;  "We grow too soon old, and too late wise."   How true it is.

Friday, November 15, 2013

Good days and bad days, a way of life.

I received a comment today from a reader that asked me if I had good and bad days.  The short answer is yes.   This is a cardinal symptom of Lewy Body Dementia.  But I actually experience changes from good to bad or bad to good during the day.  This morning, when I woke up, I felt like there was nothing wrong with me.  We had Marcel the Wonder Dog groomed this morning and then headed to the Commissary to do our grocery shopping.  Halfway through the Commissary, I was confused, tired, and disoriented.    That passed later in the afternoon, however, I am now experiencing my sundowning issues.

I have written before that I almost hate the good times because I know a bad time is just around the corner.  The roller coaster ride of LBD is most aggravating.

Another question related to stability.  I use a cane often as a stabilizer.  I also have a rotolator that I use for longer walks and outings.  In the house, I stubbornly refuse to use my cane.  I have fallen but normally I just stumble or wobble.  I guess I am like a Weeble!  My mobility issues are rigidity, mostly in my legs at the moment.  As I understand it, my "Push and Pull" muscles are fighting with each other.   My muscles normally feel like I have just completed a marathon!  They are sore, tender, and stiff.  The rigidity is moving to my arms and my lower back.  This rigidity effects my balance especially in a slippery or uneven surface.  

LBD impacts many functions.  Memory, hallucinations, balance, even your feeling of safety and well being.  I often say this is a good disease to have because I forget the bad parts.  But, it is also a difficult disease to have considering all the parts of your life it effects.

The last part of the comment related to professional care.  My wife and I know there will come a time when I am too difficult to care for.  She cannot life me out of bed now, so if I am unable to get up, we would be in trouble.  The reality is, most of us with LBD will require professional care.  Most of that care is provided in a Nursing Home or Memory Support Unit.   We are presently on the waiting list to move into a Continuing Care Retirement Community that provides independent living and all levels of assisted living including professional care.  Planning ahead is the best way.  Of course, sometimes LBD moves faster than you can plan.  We are blessed that my journey is somewhat slow at this time.

I have said it before, those of you who read and comment on this blog are my support group.  I love to read your comments and hopefully, provide you some insight into my journey.  As Red Skelton used to say;  Keep this cards and letters coming!  Thanks.

Wednesday, November 13, 2013

What helps you feel better?

Those of us who are in the first half of our journey with Lewy Body Dementia, still seek out the pleasures of life.  Food, travel, companionship, hobbies, intimate relations, all still bring us pleasure.

I love to eat.  However, my Doctor has put me on a reduced carb diet.  It has worked wonderfully.  I have lost 45 pounds so far and my Triglycerides and blood sugar are now well with in normal specifications!  Does this mean I don't eat what I like?  No, I just eat less of it.  For instance, tonight, we decided we wanted Cheese sandwiches and tomato soup for dinner.  How did we do it?  We each had one toasted cheese sandwich on lower carb bread than our old favorite, Milton's Bead.  We made the tomato soup with water instead of milk.  It was great.

We have learned that I do much better if we connect with friends, nature, and ourselves.  We walk for exercise, enjoy Church, shopping, and family outings.  While I want to sit in my recliner, alone, I am much better if we do something interactive, interesting, different.  Interaction challenges the brain.  While I ride in the car more than drive, I still enjoy being out and around.

I am interested in what helps you feel better.  I am always open to learning from other with more experience than me.  So let me know!

Tuesday, November 12, 2013

The feeling of not being here!

Many times, especially in the evening, I tell my wife that I feel like I am not here!  I have a feeling of being far off, distant, disconnected, and not engaged.  I will stare off into space and see nothing.  The television will be on, but I do not hear the program.  I am mentally not in the room.  It has also happened when I am riding in the car, mostly in the back seat.  My wife and son are in the front seat having a discussion, and I am in the back seat, in my own world.  

This is a common issue for those of us with LBD, but it is very unnerving for us who actually suffer from this issue.   If it were not for the clock with a calendar that sits on the television stand, I would never know the day or date.  In my defense, being retired, I have six Saturdays and a Sunday.  So the days mean very little.  But there are days that we need to be somewhere, like a doctor's appointment!  So knowing what day it is, IS important.

Being able to express how these symptoms impact and effect me is a blessing, for my family and I hope for those of you who read my blog.  When my wife and my neurologist in Norfolk, Virginia encouraged me to start this blog, they both wanted me to express how I was dealing with this disease. The idea was to get me to look at my disease honestly.  It has worked.

In the beginning, I had a "Third party" view of my disease.  I used to look at myself as if I was out of my body and looking at someone else.  Now, I know it is me and I view my issues as my issues, not someone else's.  I know this sounds strange, but it is exactly how I have progressed through this journey.   In the stages of Grief, I am now in the acceptance stage.  I have LBD, it will not get better, and it will get worse!  I never would say that in the beginning.  I always thought, deep, down, inside that I could beat this disease.  Much like the surgery took my colon tumor away.  Well, I now know that is a fantasy and I am in this for life.

So, while I feel disconnected much of the time, I really do know what I am facing.  But it is the disease that causes me to be detached from my surroundings.  Another issue to deal with.

Monday, November 11, 2013

The Lewy Body Dementia Association WebSite

There is little information available about our disease.  WEBMD does a fairly good job giving the basics, but there is no other place to find first hand information that the LBD association site.  Not only do they give good, up to date , information.  But the offer a place to communicate between care givers and also those of us effected by LBD.  I encourage everyone impacted by this disease to check out this site.

They also provide information on the most recent developments in research on this disease.  It has always amazed me that LBD is the second most diagnosed form of Dementia yet no one ever heard of it.  I have dealt with doctors that do not know what LBD is!  So I believe those of us who are impacted by LBD should get the word out also.  

I would like to see more networking within the LBD community.  More workshops, more local support groups, and more one on one support between LBD patients and caregivers.  Something like the Alcoholics Anonymous program.  Why, because someone newly diagnosed with LBD needs to talk to someone who has had the disease for a while.  We need first had answers and support from someone who knows what is going to happen.   That type of first hand knowledge will go a long way to mitigate fear and stress.

I seem to spend much of my time trying to figure out why something is happening to me.  Yes, I know it is caused by the disease.  But what stage am I in?  And yes, I understand I am getting worse, but, is the latest change expected?  Do most LBD sufferers have tis issue?  My neurologist is of little help.  My psychiatrist is better equipped to deal with questions, but I still do not get the answers I need.  There is the LBD patient I see at the local rec center.   He and I trade issues and understanding and I find my infrequent conversations with him my best help.

So, check out the LBD association web site and then, get the word out.  And thanks for your comments.  The information I get from each of you is precious medicine to me.  I get information that lets me know I am "Normal" for having LBD!  

Thursday, November 7, 2013

Sometimes I get tired of the fight!

When you have Lewy Body Dementia, every day is a fight!  You fight to maintain some resemblance of being normal.   You struggle to do things.  You struggle to hold your temper when the night brings the angry and agitation.  Now I have to struggle with my doctors and CVS Pharmacy on who writes which prescription.  Since we moved to Florida, my prescriptions have been in constant turmoil which causes major stress for my wife and me.  Frankly, I am tired of the fight!

I have complained before that there is no on to help those of us impacted by LBD or any other dementia.  Each one of us is on our own to fight the many conflicts that arise.  We have no organization, business,  or individual to turn too for help and advocacy.  Again, I hear you saying;  "Why don't you start one?"  I am busy enough trying not to pee in my pants well enough start an organization or fight with a pharmacy or doctor's office.

This is the place where I begin to think I would be better off in a Memory Support unit or in an Assisted Living Facility where they deal with my fights.  Of course, I am not ready for that, yet.  But it is a tempting proposition.

If you are a care taker, you have my everlasting respect.  I know my wife is burdened with a tremendous amount of responsibility and the stress that goes with that.  I really cannot help that much.  The best thing I can do is stay out of the way.

So, the fight goes on.  Right now, LBD is winning.  I suspect it will stay in the lead until the end.

Wednesday, November 6, 2013

Early to bed...

Monday night, I went to bed at 6:30PM!!  Why, because I felt myself getting angry and mean and I knew bed was the best place for me.  I could escape to my mental safe place there.  Quiet, dark, alone, and able to think about things that soothe me.

I have written before about sundowning.  This has been a continuing issue for me.  There are certain things that now upset me more than ever and when that happens, combined with the sundowning, the best place is bed.  Yes, I could stay up and express my anger and frustration.  But for what purpose?  I will only anger my wife/care giver.  And that is never good.  I may have LBD but I am not stupid, at least not yet!

Where and when did I learn that bed was a safe place?  When I was 12.  It was Christmas eve, a particularly tense time in my life.  All Christmas eves were tense and there was much sniping going on in the house, so, I went to bed at about 7 PM.  I did not tell my Mom or Dad, I just went to bed!  They missed me eventually, and even came up and checked on me.  But, I was asleep, safe, in my own thoughts.

My wife still does not understand that I react more to things that bother me.  For instance, money issues, or political issues.  I would be much better off if I never watch a political news show again.  As far as finances go,  it would be better for me if that topic never came up.  I have no control over finances, so why even tell me about where the money is going.  My opinion does not matter now.  So I sit in my recliner and boil slowly.  My blood pressure rises as my anger increases.  But I try very hard to hold my tongue and to keep quiet.  Expressing my anger is counterproductive.

As you can see, just writing about these topics makes my blood boil.  And I know that being angry only makes everyone around me tense, angry, and upset.  I really don't want that for anyone.  So, why won't others treat me that way?  Maybe I am just too sensitive now.  But, there is always the bedroom, my haven of darkness, quiet, and solitude.  I go there often.

I have read on the LBDA website that others  with LBD have this issue also.  I am not alone.  I only wish the people around me would do the research also.  Then they would understand my issues and all of our lives would be smoother.  Maybe I am just making water in the wind.

Monday, November 4, 2013

Traveling, or not

One of my mentors in the Navy passed away last December and their are just planning his funeral for next weekend.  There were some legal issues and the parties involved have finally decided to bury the Master Chief.  I have been in contact with his Niece and have been invited to the funeral.  But, as much as I would like to be there, I just can't make myself leave my friendly confines and travel.

There was a Ship's Reunion for the USS Caron.  A ship and crew that holds a very special place in my heart.  I did not go, even though we planned to go.  Why, because I just could not bring myself to travel 1200 miles and stay in a place I have no connection to.

Yes, we went back to Virginia Beach in September.  But that was home and I was glad to be there.  I knew my way around, had friends to be with, and visit.   I was in my home Church and always surrounded with familiar locations and people.  So, I was pretty good with that trip.

But truthfully, I wonder if I will ever go anywhere overnight again!  I really cannot describe the feelings that stop me from traveling.  In the planning stages of the USS Caron reunion, I was somewhat excited.  But as we fleshed out the plans of the travel, I became completely overwhelmed!!  Planning the trip became a total block to me going.  I feel safe in my home and the ares around it.  Hotels are OK, for a night, if I can have Marcel the wonder dog with me.  But I don not feel safe or comfortable in crowds of people I do not know.  I do not like mass travel venues like airports.   And I want to be in familiar surroundings all the time.

Then there is the cost.  I do not participate in the day to day finances of the household.  But, from what I hear, I need to be careful as to how we spend money.  That being said, she we are planning a trip, I become frightened of spending money.

I guess, all in all, I am afraid to travel much past the bridge that leads to Pensacola!   Will I travel again, I don't know.  There is little I want to do or see.  I loved being back in Virginia Beach since I miss my friends, the Church, and the area so much.  And my wife has a family reunion in Iowa next July that is very important to her.  So, those may be the only two trips we make.

Maybe it is the planning that bothers me.  If we just got up and went,  I might be better.  I am not sure and it confuses me to ponder this topic too much.  But, as this blog is about the journey, I thought I had better address this topic while I remembered.  More later.  

Friday, November 1, 2013

How others see my symptoms

I had a telephone call with my sister today.  She lives in the Cleveland area still and we do not get together as much as we would like.  She asked me about how I was doing and I am very open to tell her.  I told he about my hallucinations and she got very quiet.  I joked about the and than she relaxed. She said I had a good attitude about what was going on.  My reply was;  "I can be grumpy and a pain for everyone to be around or I can find something funny about what's happening!"

It's true, the Psychiatrist said the same thing to me the last time I saw him.  I choose not to be negatively impacted by LBD.  Seeing things that are not there IS a shock.  But as long as they are not attacking me, I can laugh at them.  But I was shocked at how she handled my symptoms.

Loved ones seem to internalize my issues and not really face them head on.  Since my Sister is a far distance away, she probably has built these symptoms up in her mind.  I probably would do the same thing if it were her that was effected.

But no one can really understand what I am experiencing.  For instance, today, I saw a piece of paper sticking out of my cell phone  which was on the table next to my chair.  I pushed at the paper and it disappeared into my cell phone.  So, I picked up my cell phone and opened to up to remove the paper.  There was no paper there!  It never was there.  So, how does someone deal with that as the observer?  I am sure it is frightening to them.  But I choose to enjoy this journeys much as I can.

Another thing I have recently discover that I lost was my "Third Party" view of LBD.  In the beginning, I could look at what was happening to me as if I was disconnected from the symptoms.  I had the feeling like I was watching this happen to someone, but not me.  Not, I know it is me!

Another new issue is that my short term memory is even worse.  Writing this post is difficult because I cannot remember what I wanted to write next!  So, I have to sit and rerun my thoughts back, read what I typed, and try to remember the next though I was going to express.  These posts do not come as smoothly as they used to.  At least I can still express myself, even if it is more difficult.

Like most diseases, LBD does not just effect the person that has the disease, it impacts everyone in the sufferers life.  I am aware of that and try to be as tough as I can and I try to defer as much worry on the part of those who love ma as I can.  I fear that soon, I will loose that ability also.

Wednesday, October 30, 2013

You know what makes me angry..

OK, I am not Earl Pitts!  But there are two things related to LBD that cause me to get angry.  First, even though Lewy Body Dementia is the second most common form of dementia, there are very few local support groups.  You may be thinking, why don't YOU start one.  I am the one who needs it!!  I am no longer capable of taking on that level of detailed organization.  Not to mention tax exempt status and all the legal issues.  I retired from my job because I could no longer do that sort of thing.

Second;  When a Senior Citizen is getting ready to move into a Continuing Care Retirement Facility, there are very few individuals of businesses that can help you down size, check out facilities, provide financial counseling, or even give you the latest inspection reports from the facilities you are looking at.  No, instead, we are operating in the dark!!  Trust, me, in this lost community of Pensacola, there are no helpers available.  I have done exhaustive research on the Internet and finding CCRC's is difficult.  Finding someone to provide you any information is impossible.

So, those of us who are LBD patients and our care givers are on their own as we search for facilities, check out financing, and try to sell valuable furnishings that will not fit in our new lifestyle.   Did we select a great community?  Is the entrance fee fair?  How did the Memory Care unit do on it's last inspection?  I know what the community we chose told us.  But, is that their view or an objective agencies view?

As my generation ages, services like this will be more and more in demand.  And we can't be the first people who want this type of help.  Yet, here we are, out in the dark, groping for a direction.  And you know how much I don't like the dark!

Tuesday, October 29, 2013

Nights are not my friend

I know I have written about "Sun Downing" before, but tonight I may have a better understanding of this condition that so many of us deal with.   Every night when the sun goes down, I feel trapped, alone, abandoned, encased, angry, and vulnerable.  I sit in my chair with a light glaring on me.  My dog by my side, I seldom move.  If I do move, it is just to go to the bathroom, get more coffee, or go to bed.   Once in bed, I tuck myself in tightly, my dog lays close to my side, and I try to go to sleep as quickly as possible.  If I do not go to sleep quickly, I start to have angry thoughts about the days activities, or about life.  Sleep is better.

I did not realize all the emotions that I experienced until tonight when my wife asked me; "Are you angry?"  The answer is no and yes.  I am not angry at Her, but yes, I am angry.  Angry at the other emotions that trap me.  I can only imagine the frustration and pain someone feels that has this issue and cannot express themselves.

My Father in Law had Alzheimer's in the late 1980's.  He died from Alzheimer's in 1991.  He was a deaf as a stone.  He spoke with a thick German accent and because of his deafness had problems communicating with people.  He never expressed his emotions or his experience with Alzheimer's.  He did escape to sleep as I do and slept for over 24 hours a couple of times that I witnessed.  He suffered and died because he could not tell us what he was experiencing.  Of course, there were not medicines like Namenda or Arecept in those days.  He was silent, alone, and isolated.  I now, at this minute,  understand.

Sun Downing is difficult to endure but at least I can tell others about my experience.  One other frustration.  I know that every night, when the sun goes down, I will experience this prison.  Unlike other LBD issues,  Sun Downing does not come and go, it happens every single day.  My own terror that never misses it's appointment.

So that's it.  Personal reflection has lead me to begin to understand how Sun Downing effects me.  I hope this helps others.

Monday, October 28, 2013

More medical professional intercourse!

Now before you get all excited, intercourse is a conversation between two people.  That's what I had today with my newest neurologist.  I like Dr. King, he listens and responds to our questions  and concerns.  Today, he wanted to prescribe a new drug to deal with the hallucinations.  We pushed back because I am tired of being a science experiment.  And, he could not say the new drug would have a better than even chance of accomplishing what it is I was taking it for!  So, no new drugs.

I also asked him about surgery under general Anestassia for my left shoulder rotator cuff.  The pain for in my shoulder is substantial and it wakes me up at night.  But, I don't want to wake up from my surgery in another time zone either!  Dr. King said he would get with the shoulder doctor and get a decision.  OK, I can deal with that answer.

Let's talk about the hallucinations.  I have been holding this information back until now.   But, now I am ready to divulge the changes in my condition.  My hallucinations have taken on a more realistic dimension.  Recently I have seen people, real people, in locations that are logical for real people to be.  These people looked real, but upon questioning my wife, they were not there.  This had happened about a year ago and I actually was going to pick a fight with the person, who my wife said was not there.  But these recent hallucinations have set me on edge.  I have reduced my driving and never go out without my wife or someone I trust.  This is a major development in my disease.

Dr. King asked me if I saw a Psychiatrist and I do.  The Psychiatrist I see specializes in dementia.  So he is an exceptional person to help me.  I see that doctor tomorrow, so more intercourse!  We will see where this appointment leads.

Others of you in the LBD family have dealt with this development and I am not all that surprised.  But I am very concerned.  This change will definitely change my life and my wife's.  I will keep you informed.


Friday, October 25, 2013

Stress of my caregiver

We have seen some down grade in my condition and I have noticed some signs of stress on my wife.  We have noticed me experiencing more realistic hallucinations, more confusion, more exhaustion and weakness.  She is with me 24/7/365 without a break so this should not be a surprise.   We had one of our long discussions today and her stress and anxiety.  She has not been sleeping well for the last month or so and is emotional with me.  We had a disagreement that ended in some very hurt feelings on both of our parts.  This is totally not normal for us.  Arguments have NEVER been a part of our 40+ year marriage.  We both agreed that this is a part of her stress and anxiety over the progression of my disease.

This is a new, unwelcome, development in our journey with LBD.  I have written about our decision to apply for residence in a continuing care retirement community.  The one we applied to has a waiting list and that causes some stress also.  Waiting is never easy, especially when you are working against an unknown deadline.  What deadline you may ask?  The deadline of me still being well enough to be judges able to live independently by the professionals at the CCRC.  Yes, I have to pass an inspection of my cognition.

Life is never easy and life with Lewy Body is an even greater challenge.  So, all of these challenges have combined to cause stress, anxiety, and anger in my wife.  I am pretty much impervious to these mental issues.  They slip my mind and I just don't think about them.  Convenient, I think.  Bad short term memory can be a blessing.

But my wife has perfect short and long term memory and she thinks about all of the possibilities, negative and positive, of our future, all the time.  No wonder she can't sleep.  She is a planner.  Financial, moves, even furniture placement in an apartment we have not moved into yet.  Just the same, her planning has kept us in great financial condition for over 40 years.  You cannot argue with success!  But, I wish the stress and anxiety would leave he so she could get some restorative rest.

I am sure other care takers suffer from the same issues.  But in our case, their appearance is relatively new or at least relatively newly expressed.  So, as with all the other issues of LBD, we will trust God and look to Him for guidance and rest.

Monday, October 21, 2013

Who I was and who I am now

One thing I can state is that who I am now is totally different than who I was before this disease.  my personality, demeanor, build, strength, stamina, even how I talk are all radically different.  I know it is a shock to my wife and son.  But there is a strange metamorphosis when I am around Navy friends and acquaintances.

Today, a friend who worked with my wife called us and said she and her husband were in town and would like to stop by.  Besides the fact that they woke us up at Oh Dark Thirty, we were glad to have the visit.  Her husband was career Navy and is enjoyable to talk too.  We have some things in common, but he was a Navy Counselor, and if you read my Navy Blog, you know my opinion of that rate.  Just the same, for two hours, I got to be who I was.  A gruff, opinionated, hard core Master Chief Gunner's Mate.  Then, they left to continue their trip and I was back in LBD mode.   I find that change interesting because I never really saw it until today.

Around Navy people, I can go back in my mind and be who I was.  I see myself as young, powerful, knowledgeable, determined, and in charge.   Once I am out of that influence, I realize I am none of those things anymore and I slide back into reality.

People who see me for a few hours always say I look good or that they cannot see any effects of the disease.  That is because, for that period of time, I feel like the clock has turned back 20 years.   I have read that this is called "Playing to the crowd" or being a "Spot light player".  Personally, I see it as being in a comfortable place in my mind.  When I am with Navy folks that actually share interests with me, I am mentally comfortable.  When I am not, I feel distant and disconnected.

The only other place I feel mentally in charge is when I am doing God's work as a Pastor or Bible Study leader.  Again, I am with people of like minds and I concentrate on that commonality.  I like cars so I can connect on that subject.  But few people are really interested in cars.  I like fire arms and because of my Navy background, I am a subject matter expert in that area, but again, it is not good dinner conversation.  I steer clear of politics because I get angry over the course of the Country.  And again, if you read my blog at all, you know I try very hard not to get angry.  Other than those four things, I am not interested in anything.  So being engaged with folks outside of those areas is a strain.  One other interest area.  I like football, and I watch most games on television.  But if you ask me what games I watched the next day, I can't remember the teams names!  I can remember outstanding plays but not the team that made them.  Again,  as I have commented before, I find that mental disconnect interesting.

I do not like who I am now.  I am somewhat of a stranger to myself so I must really be difficult for my wife and son to understand.  This truly is a cruel and perplexing disease.  

Am I all that difficult to be around? Or is it me?

I have said before that when the sun goes down, I have emotional and mental difficulties.  I have also commented on my view of how people close to me appear to treat me.  Now, I am questioning my own thoughts and comprehension of how people treat me.  Can I be the problem?  Am I reading an attitude that is not there?

You have probably heard the statement; Just because I am Paranoid does not mean they are not all out to get me!   Am I Paranoid?  I have told you about how I view the people here in East LA, the Panhandle of Florida, as clannish, unfriendly, and aloof.  Could it be my misreading them?  Even my wife, seems distant and gruff with me in the evenings.  That is certainly not her manner with me normally, but recently, that is what I observe.  Again, are my observations valid?

Could my mind be playing tricks on me?  In the past, I have accused family members of following me and spying on me.  No one has convinced me they were not!  Yet, this recent feeling of dislike I am feeling may be just my Sun Downing impacting my ability to understand people.  Days seem fairly normal, but the evenings are a totally different matter.

I feel disconnected from those around me.  I have commented to my wife that feel like I am somewhere else.  Not really here.  I know that is hard to understand.  But things seem different in my perception.

My days are jumbles of events that I try to replay in my mind before I go to sleep.  Many times that replay frustrates me.  Maybe I am reading too much into this issue.   Or maybe I am the issue!

Living with a Lewy Body Dementia Patient

Living with a Lewy Body Dementia patient, 24/7/365 must be a very difficult burden to bear.   We see things different that most.   If our care taker is quiet, sullen, preoccupied, we see that as anger towards us.  We must know where our care giver is every minute of every day.  We want our time schedules met.  Meals on time.  Television shows on time.  LBD patients become very demanding.  I know because I am.

That's right, I did some self-evaluation and realized that I am demanding.  It is not on purpose but it is there.  Again, not our of meanness but out of need.   My wife is my security.  She is the one thing in my life that is not changing!   But just the same, she is continually the care giver.  And I see where my being dependent on her could drive her crazy!

The question is, how do we deal with this issue.  Well, now, it may not have an easy solution.  After we move into the Continuing Care Retirement Community,  I think the opportunities will be increased for me to have activities out of the house, that are safe and controlled.  It is no longer a good idea to let me out alone!  

But, just the same, I see the stress on my wife and I worry.  I know that other caretakers are impacted by the same stress and fatigue.  I would be interested how those people deal with this issue.

I seem to have a "Tank Full Float" issue!

I realize that LBD will progress and it is.  The most recent development is that my "Tank Full Float" is not functioning correctly.  I do not receive the "Tank Full" indication until my gray water tank is already in overflow!  This can be an issue if you like dry pants, furniture, beds, and carpets!!

I address this issue in a  mechanical way because of my Navy background.   I find it easier to deal with problems in a vernacular that I understand and identify with.  If a sewage tank on a ship is approaching the "Full" point, a float rises and tells the operator or watch stander that the tank is almost full.  That way, he can shift sewage discharge to another tank instead of overflowing sewage into the ocean.  If you are old, you may remember we used to dump raw sewage over the side, everywhere!  In port, at sea, everywhere.  But now, that is illegal and we keep sewage in tanks and treat it, sterilize it, and then discharge it as an inert substance or, in port, we pump it into the sewer system.  Humans are the same.  When we are young, we pump our sewage anywhere, anytime!  Then, as we learn, we dump sewage in the appropriate sewer connection or we hold it until we find an appropriate place.

Then we get old, or get impacted by a disease like LBD.  Then we get erroneous alerts on sewage discharge requirements.  Like, when you run to the bathroom and then, stand there and nothing happens!  Bad "Full Float" operation.  Or, you are sitting comfortably in your recliner, and you get the "Tank Full" alert as sewage is leaking out already!  Not good!

We do have ways to deal with this malfunction but it Depends on user interface!  Someone has to empty and dispose of the temporary holding system!  Just like when we were really young!  

right now, the alerts are JUST early enough to avert a major spill.  But it is an issue I have noticed and in the spirit of this blog, I thought I would address this issue in the open, frank, honest, method that I address all LBD issues.  Now, all I have to do is find the "Dut Engineer" and see if we can adjust that faulty "Tank Full" float indicator!

Wednesday, October 16, 2013

Being with people like me!

Today, I went to play table tennis with a friend that has Parkinson's.  We manage to play once or twice a week.  In spite of his affliction he is a great table tennis player.  We play at a recreation center operated by the local Methodist Church.  Many folks from the neighborhood come there to workout, do aerobics, and just talk during the week.  On Sunday, it is a Church, meeting on the full court basketball facility that seats over a thousand for two services every Sunday!

While we were playing, an acquaintance I know who has Lewy Body Dementia like me, walked by.  I would much rather talk with him and his wife than get beat like a nail by a fellow with advanced stage Parkinson's playing table tennis.  Andy, his wife, Sam, my table tennis partner, and myself sat a talked for 30 minutes.  I cannot tell you how refreshing it is to compare symptoms and problems related to LBD with another person with LBD.  He and I are on the same sheet of music, even though he is a step or two further down the path than I am.  We can and did compared testing experiences, hallucinations, medicines, muscle pains, and other issues he and I share in common and some he has that I don't or that I have an he does not, yet.

For that 30 minutes, I forget that people call me a liar and say I am not sick.  I forget that I hurt every night, can't remember my last thought, don't know what meds I take, and sometimes forget how to read.  Instead, we are the same.  We are a community of two, dealing with life the best we can.  We do not have a disability we have a challenge.  If you do not have LBD you cannot understand the comfort I feel being with another LBD patient.  I believe sufferers of cancer, MS, or even Diabetes may have the same issue.  Being with someone, talking with someone, commiserating with someone, walking the same path as you is comforting.

For instance, I have written about REM sleep disorder and how I live out "Fight" dreams in my sleep.  And how I punched, no poleaxed, my wife one night.  And how I now take meds to help that issue.  Andy has not had that issue.  I am glad and I hope he never does!  But he was understanding and interested in my issue.  That is comforting and helpful.

My wife and I plan on having them over soon to make our bond stronger.  This was a good day.  

Monday, October 14, 2013


I have heard personally, from more than one Dementia patient that they feel their wives, family, friends, do not respect any more or respect them less because of their diagnosis.  So I though I would try to dissect this  a little.

You will notice, I only refer to men.  I do not know any female Dementia patients.  So, I have no basis to address their issues.  Second, I am a man and as a man, trying to understand the Psyche of the female is pointless.   But, I fully understand being a man.

As a successful man, I was fully in charge of my life.  Yes, I acknowledge GOD is in control of my life and all of life.  But for this discussion, we will look at this as seen through a man's point of view.    I worked, all the time.  Made good money, saved, invested, bought and sold homes, made some good and bad decisions. Took credit for the good and responsibility for the bad.   I was intelligent, resourceful, witty, and caring.  My wife looked to me for guidance, answers, knowledge, on many issues.  I fixed things around the home, the car, the lawn mower, the landscaping, the Church.  I was capable, physically fit, not overly emotional, and even dependable.  I was sexually capable, at least in my mind.  Concerned for the emotional and physical well being of my wife and son.  Did I have faults, yes!  But none so bad that I would get fired from any position in my life.  I did the best I could to provide and better the life style of my wife, my son, and those around me including in-laws and extended family.  I had good, close friends that counted on me and I counted on for help, advice, and support.  All in all, I consider myself to be an all around good guy.  Not perfect.  But not fatally flawed either.

Does this sound like the man you are married too?  I thought so.  Then why, when he is effected by a degenerative neurological disease, do you treat him like he is a juvenile delinquent that can't be trusted, can't do anything right, and does not listen to anything you say?!  I mean that!!   I talked to another Lewy Body Dementia patient at a local rec center I go to and he told me the same thing.  If anything goes wrong, it is his fault!  He fits the description I just laid out.  He is a retired Navy Captain!  Yet today, he is treated like an E-1 Seaman Recruit.

We don't screw up on purpose.  We don't sit and think, how can I piss her off today!  Instead, we think, how can I stay out of trouble today!  The Captain told me, he tries to be dressed and ready to go out the door 10 minutes before his wife says they have to leave.  He told me that as his wife was walking u to us and she said;  He is the reason we are always late!!  Why berate someone for trying to meet the standard you set?

I have a theory.  We are being disrespected because we are no longer what we were!  It is like we are now useless.  Like a car that won't start, or a cracked tea pot, or a broken chair.  Broke beyond repair and not worth a place in the home.  Well, if that is the way you fell, put us in some care facility and leave us there.  We cannot defend ourselves.  We cannot do better and I promise you we will do much worse.  If you can't love and respect us in the stage we are in, I promise you really won't be happy changing our Depends and treating our diaper rash!

None of us planned on getting Dementia.  I certainly did not go out and get infected with the Dementia bug on purpose.  But, I have it.  I can't change it, and I am tired of apologizing for it.  When you went through menopause, did we treat you with disrespect.  I did not and I believe your husbands did not either.  Why do I say that with confidence?  Because you are still married!   Most men who can't deal with menopause get a divorce.  If your are still married, he cares!  So, why not try to understand his issues now that he has Dementia?

I know this sounds emotional, and it is.  But those of us trapped in Dementia are emotionally compromised and angry words, harsh looks, and disapproving comments impact us more than ever before.  We try to meet the standards we lived up to our entire lives.  We can't!  It is physically and mentally impossible.  But we hurt inside because we can't.  We feel diminished.  Less of a man, and even lees of a lover.  It is difficult to tell you how bad we are hurt by our disease.  And then, the disapproval we incur for trying is even more cutting than you can imagine.

Maybe it is difficult to respect the man who could do everything and now does not have the energy, mental capacity, or physical strength or ability to do what he used to.  But remember, you don't wear size 8 dresses anymore either.  Neither is a reason to disrespect you spouse.

Friday, October 11, 2013

Why I write

This blog has been a labor of love for me.  I started this endeavor at the encouragement of my Wife and my Neurologist.  It is a sort of therapy for me but I hope it is a source of first hand information on how Lewy Body Dementia impacts the person effected by LBD.  I have explained and discussed all but the most personal issues of how LBD has affected my life.  But the most rewarding part for me the may comments you, the readers, post.

Many of you have commented on the "First Person" approach I have used.  God has given me the ability to write about what I experience and feel in this journey.  Other well written blogs approach LBD from the "Care Giver's" point of view.   I read these blogs and have gained some very useful information and my Wife and I appreciate their candor and truthfulness.   It is very important for the care givers with experience to inform the new care givers of the issues they face.

For those of us with LBD, there is little chance to interact with a fellow LBD sufferer.  The LBD Association does a great job keeping us up to date on treatments, research, and symptoms.  But there is still a need to understand the silent issues the LBD sufferer faces.  Sun Downing, vivid dreams that meld into your waking hours, the urgent need to know where your care giver is, 24/7/365, and other annoying issues we have.  These are the areas I try to provide input for and I will as long as God gives me the ability to write.

That being said, it is more difficult to express myself.  As I have described before, my anger issues have increased and that makes it difficult to write an unemotional blog.  You probably agree with me on that.  But I will continue to try.  LBD can be a lonely journey for the person with the disease and the care giver.  Very few people even know what LBD is!  And then, when you tell them about it you get the reply;  "He doesn't look sick!".  Well, try being with him after the sun goes down.  Trying sleeping with him when he dreams of a fight and punches you in the nose!  So, we all need to educate those around us about this quiet, tortuous, disease.

I appreciate your readership and friendship.  I very much appreciate your comments and suggestions.  We are in this journey together.  When one of us grieves, all of us must grieve.  We are our own support group and I encourage even more of your to blog about your experiences with Lewy Body Dementia.  There is plenty of room for all of us!  Again, Thanks!!

Wednesday, October 9, 2013

Sun Downing is really becoming an issue!

Winter is coming, even in Florida, and the days are getting shorter.  Darkness causes Sun Downing.  A symptom of dementia.  I suffer from this issue and have for quite a while.  But lately, it is becoming more pronounced and more of a problem for me and my wife.

As the sun goes down and the house gets darker, even with lamps on high, I get agitated, grouchy, and easily upset.  Comments made take on negative connotations i my mind and I get angry and combative.  Not physically, at least not yet.  But outbursts are common and my anger is noticeable.

This is new as I have written before, since the LBD has progressed I have tried earnestly to control my temper.  I know how angry I can get and I don't want that temperament to take over my life.  But, lately, as it gets dark, my mood does too.

I must always know where my wife is and anything she says can invoke a grumpy response from me.  If she goes into another room and I don't notice I yell for her.  I even get angry with Marcel the Wonder Dog.

I will go to bed early if I feel I am overwhelmed with the Sun Downing and that has become a habit lately.  Sometime escape to the sleep world is the better part of discretion.  I hope I can keep that level of self-control.

As far as I know, there is no help for this.  As my best friend Jerry says;  "It is what it is."  And ith that, I am going to bed.

Tuesday, October 8, 2013

What starts you clock?

I spend much of my awake and sleeping time thinking and reminiscing about the past.  And recently, those thoughts have turned towards the things that excited me.  I spent 40 years of my life in or working for the Navy.  In those early years, I was motivated to promote, accomplish qualifications, pass inspections, complete required training, deployments, transfers, choosing challenging duty assignments, and learning as much as I could about being a Sailor.  Then I retired from the Uniformed Service and joined the Civil Service working for the Department of the Navy.  Those years were filled with the same motivators.  Nothing changed.

I also married during my Navy time and I was dedicated to caring for my Wife, homes, moves, raising my son, Church programs like AWANA, and getting a college education.   Additionally, I was interested in competitive shooting, the NRA, The Friends of the NRA, and being a urban survivalist.   I also followed politics, football, NASCAR, and Baseball!  All of these things kept me going, kept my internal clock ticking, kept me interested in life.  

But now, I cannot tell you what, if anything, motivates me, excites me, keeps my internal clock ticking.  Yes, I have the time to do things but no desire and no one to do them with.  Yes, I enjoy shooting, once I get there,  But I have no desire to expend the energy to plan an outing.  The things I spent so much time and money obtaining are now the things I am worried about safely storing and keeping from theft.  They have become a burden not a pleasure.   Actually, almost everything has become a burden and not a pleasure.

Even my belief that I could defend the home front from intruders and marauders is but a fantasy.  Everything I cared about and work so hard for are now a burden at best and a source of fear and frustration for me.  I hate to watch politics and get angry and depressed over the Socialist, Muslim centric direction our government is headed.  So, I try not to watch.

The bottom line is, I feel useless, worn out, disconnected, and isolated most of the time.   I try to rebound, act like I am feeling better, even act normal.  But I am not and I do not know how to fix this.  I am not attached to the world around me because I don't like it and I am mentally somewhere else.  Maybe the move to our CCRC will help.  It is a beautiful place and maybe I can make some new friends.  We will have some things in common, old age!  

Even my health has taken something away from me.  I love to eat!  I love bread, pies, cake, fruits, lasagna, pasta, beer, pizza, and everything else.  But, since my body had issues processing all of those carbohydrates, and my blood sugar was high, I was directed by my GP to reduce my carbohydrate and sugar intake.  I have, it worked, at least on my weight.  Blood tests will show if my blood levels also agree with my weight loss later this year.  But, I can never eat like I did before.  Why, because all the good I have accomplished will go away!

This is not a new issue and I have written about it before.  But it is getting more pronounced.  Will these mental issues get better like my weigh and blood chemistry?  I doubt it.  I see the future and I don't like it.  This is the first time I have openly said that I am not happy with my condition.  Maybe that is good.  But the recent changes have let me know the future and my inability to get excited about anything only reinforces what I already know.  I have told you before, I don't want sympathy.  Understanding yes, but no sympathy.

So, that's where I am right now.  Maybe tomorrow will be different.  Only time will tell.

Monday, October 7, 2013

Sleep effects Lewy Body Dementia

I recently received a comment from a reader discussing REM Sleep disorders and LBD.  The reader was absolutely correct.  I have REM sleep issues including acting out my very life like dreams.  I wrote about it before, but to keep it short, one night, I was dreaming I was in a big fight and I desperately needed to hit someone!  I did!!  And I drove my Wife across the bed!!  I take some drugs for that problem but I still move around a lot and my Wife stays on alert for any quick moves on my part.

REM sleep disorders are a prime indicator of LBD.  When we told my neurologist about the punching episode she said; "I was expecting that!"  I told her a "Heads Up" would have been nice.  But she told us she did not tell us because she wants everything to develop on it's own.  Just the same, I had a hard time getting my wife to stop sleeping with a catcher's mask on!

Vivid, life like, dreams has been an issues for me the last few years.  I dream in color, with the faces of present and past friends and family, and many deceased friends and family featured.  I also have many "fight" or combat dreams.   I also have issues with these vivid dreams becoming reality when I wake up.  I have had days when I tried to complete the task I was dreaming about.  Trust me, that is unnerving!

LBD is a disease that increases with time.  Little issues start to pile on top of other issues until you have so many symptoms you are overwhelmed.  Dreams, hallucinations, memory loss, loss of reading capability, forgetting the names of those around you, fear of new places, new people, crowds, being totally routine based, thinking people are stealing from you, following you, and did I mention hallucinations.  I am sure there are other issues, but I don't remember any others at this time.

Thanks for the comment on REM sleep disorders.  It is important to keep people up to date on the problems those with LBD experience.

Sunday, October 6, 2013

Recent changes

You may have noted in my last few posts a certain edge in my attitude.  It is not on purpose but it is a further progression of the LBD.  I have wrote before how I try very hard, to hold my anger in.  Others around me get angry, shout, scream, cuss, and loose their temper in general.  But, for the most part, I hold my anger and aggravation in.   I believe, loosing my temper, showing my anger, my frustration, especially about my condition and how life around me impacts me, would cause more issues than solve.   But lately, I am having difficulties holding in my rage and when I do, it bubbles and ferments in my mind until LBD erases the reason for my angst.

I know that others around me are frustrated over my condition.  And I DO appreciate their feelings. But they are not the one unable to remember, drive, move, read, or do other things they once did.  

This change has been coming slowly and my wife and I have both noticed these changes.  But how it has impacted my inner control capability is new and upsetting.  I have to live in a world of people who are not effected by LBD and have no understanding of the disease.  They think I have no issues  and that I am a gold brick at best!  Yes, there are people that have told me that.  I won't say what I would like to tell them!  Self-control!  But my ability to live in this "normal" world is diminishing and soon I will start to blurt out my emotions and feelings without filter or consideration for feelings or setting.  That should be interesting.

As I use this venue as an education for those of you without LBD, I also use it as therapy.  This time, it is more of a warning of things to come.  Things I no longer have control of.  Things I would rather not have to deal with.  Things, just things!


I have participated in a group study with the Alzheimer's Association and read quite a bit of information about communicating with people who have Dementia.  But, none of those experiences or articles had as much impact on my understanding of my own issues than the GEICO Motorcycle Insurance television ad.  The one with the motorcyclist who is made of money.  He rides by, money falling off his body, and a male on a motorcycle says;  "I wish I was made of money."  And the woman accompanying him says; "So do I!".   In my mind, that is a mean, disrespectful, unloving,  comment and if she was with me, she would be walking home!

Now I have never been a fan of "walking on egg shells"  around people.   But, I also try to be considerate of others feelings.  For instance, I always call older women, Young Lady!  I have never had one of those ladies recoil or act indignant with that comment.  Instead they smile!  But, I now realize how simple observations by people around me causes me hurt, anger, and even depression!

My mind processes things different than it ever has.  Innocent thing said by individuals has caused me emotional pain.  Yet, I don't want to respond to these comments with angry words of even in a defensive way because I really can't decide if they meant what they said to be a spa or mean comment directed at me or they are simply making a general observation.   So, I just internalize what was said and how it hurt me.   This is not good foe me and I know it.

There is also the issue that those of us with Dementia need more time to respond to a question than those of you without Dementia.  That causes the questioner discomfort and leaves the Dementia patient feeling neglected.  Especially when someone answers the question for the Dementia patient or just says; "never mind!"

Also, things like the GEICO Motorcycle ads leave me feeling less masculine, inadequate, and disrespected.  And before you tell me; "It's just a TV Ad!" I will tell you people make comments to me, in the course of a conversation, that are exactly like the GEICO ad and hurt me and leave me feeling useless.  I never respond, I just retreat into myself.

But, I am sure that other Dementia patients suffer from this emotional issue too.  I have a friend that has Alzheimer's and he does tell his wife she is being disrespectful to him.  Now, I know she is not! But he sees her actions as disrespectful.  And, in the case of the Dementia patient, it is what we believe you meant, not WHAT you meant.  Remember, we live in our own world with our own perceptions, colored by our broken minds.  Even if the Dementia patient is early in the disease, or having a good mental period, we still have broken processor and perceive what is said with broken filters.

So, as a Dementia patient, who is well into the middle stages of this disease, I recommend that you, the care giver, understand the mental state of your Dementia patient and try to work with that patient in the place he or she is.  This will help both parties.

Another issue we Dementia patients suffer from is how we do what we do.  We try our best to do what ever we do, as well as we can.  I realize that I am not as good at most things as I was before LBD.  But, that does not detract from the fact that I do my very best, all the time.  Think about that when you criticize our efforts.  Remember, out brain processes thing different that before and different than yours!  Criticism hurts as much as the off hand comments I talked about earlier.  Maybe even more, because they are directed at us.

I am not trying to be mean or trying to get back at those comments.  And I am not saying that what someone says or how they say it to a Dementia patient, is wrong or bad in normal situations.  But we are not normal!  I am trying to give insight into the brain of a mid-term Dementia patient and how things said and the situations that surround those statements impact us.  We cannot "just deal" with what is said.  That part of our brain is broken, dead!  You, the person not effected by Dementia, can deal with what you say because you can understand how our minds work, if I tell you.  And, I have.

Sunday, September 29, 2013

The Decision!

OK, I have spent a number of posts explaining the process of trying to determine where we should like.  We went to the Continuing Care Retirement Facility last Friday to show our Son and Daughter in Law.   It was a good visit and they both thought this was a great facility that fit us perfectly.  So do we!  So tomorrow we will submit our deposit.  This action will place us on the Priority Waiting List.  You may ask, how long is the waiting list?   That is a hard question to answer.  There are people who have been on the waiting list for over 6 years!  But, they want a specific unit, facing a specific way, in a specific building!!  We are very open to the unit we get because there are at-least four floor plans that fit us very well.  So, we may only wait a few months.  Time will tell.

I believe this is the best place to live for us.  I freely admit that it is not the best choice for everyone.  But it answers many questions about our future that have bothered me ever since I was diagnosed with LBD.  Like, what happens when I need professional care?  What happens if my wife needs professional care because of a broken hip, or some other medical issue?  What happens if we both develop memory issues?  Yes, I have mine diagnosed now, but she has a strong genetic tie to Alzheimer's.  Not to mention stroke and cancer.  So, I believe this continuing care community meet all of our needs.

There is also the point is that most Continuing Care Retirement Communities will not accept me because I have an LBD diagnosis!  I have been totally up front with this facility and they say they will accept me in their continuing care plan.  That means, our cost does not rise regardless of what care needs we have, and regardless of time in professional care.   And that guarantee applies to both of us!  This fact alone makes this the best choice.  Not to mention the facilities!!  And everything is open 24/7/365!!  The indoor pool, the jacuzzi, the work out rooms, the lounges, the library, the recreation rooms, even the pool table!!  This is the right place at the right time!!!    

And if you are a regular reader, I a on the list to the Armed Forces Retirement Home.  I would really love to live there.  It is a Continuing Care Retirement Community, but it only admits retired Enlisted personnel!  That means my wife would be on her own!  I have been married to my wife for almost 41 years and I like being with her!  So, the Navy Home really is not a perfect fit.  This place is.

So, tomorrow we take our first step.  It is a big step, but one I am ready to take.  I will keep you posted.

Thursday, September 26, 2013

Doctors who care

I have written a number of times about doctors that have not been as caring or attentive as I would like.  This time I want ti write about a doctor that really shows the best in medicine.  Our GP left practice here in Florida so I was again forced to find a new GP.  The hospital chain, Sacred Heart help us connect to an exceptional doctor.   During our first visit, she spent an hour learning about where I was in my LBD journey.  After some blood tests, she told me my sugar and triglycerides were way too high.  I thought that meant I was becoming diabetic.  She said, no, you are eating too many carbohydrates.   She told me to lower my carbs and we both did.  I was eating 600-700 carbs a day!!  Now, I eat around 100.  The weight has just fallen off of me!  To date, in six weeks, I have lost 30 pounds.  I feel better, my blood pressure is down, and I am fitting into clothes that were in the "give away" bag!

In my last visit, I complained about an increasing pain in my left shoulder.  I had my right shoulder rebuild 15 or 20 years ago.  But, my left shoulder has has increasing problems over the last year or so.  My new GP, sent me to a shoulder doctor that was just as caring as her.  He told me he had done research on LBD in preparation for my visit!  Wow!!  Now, I have had the MRI and we will see the verdict this Monday.  Whatever it is, I trust this Doctor to have my best interest at heart.

I know I have complained about doctors not caring and not doing their homework.  But I have had two recent experiences with superior Doctors that emulate the best characteristics of the medical profession!!   The moral of the story is, don't give up the search!!

Wednesday, September 25, 2013

What is more important to you?

That is a very important question.  What IS more important to you?  How you live today, Comfort, security,  and quality of life.   Or, future care.  That is really the basis for the struggle we are involved in right now!

Do we select a place to live that makes our living easy, comfortable, secure, even luxurious, today, with no promise or provisions for future care.  Or do we select a far more expensive Continuing Care Retirement Community (CCRC) that contractually guarantees assisted living and skilled nursing care at no additional cost?  Trust me, this is a difficult question to answer.

The entrance fee and monthly fees are certainly high or even exorbitant for most CCRC.   Or do we choose an over age 62 apartment community that provides a secure, luxurious, age specific place to live with no buy in fee and rents at about 33% of the CCRC?   Now, to be fair, this option places us at the mercy of other facilities if and when one of us needed professional care.  What we really need is a crystal ball.

Certainly a person with a confirmed diagnosis of LBD should be looking at future needs.  But paying for an undetermined period of time for care that may or may not be needed is something that should not be done without research.  Of course, most CCRC's that are not fee for service will not accept anyone with a confirmed diagnosis of dementia.  We are a bad investment!  Maybe that fact alone should sway my decision.  And in fact, it does have a heavy weigh on the side of the CCRC.

Another thing to consider is maintenance work on your present home.  I have had my expensive and emotional stories about this home and the home we sold in Virginia.  I see home ownership the same as boat ownership!  A hole that you pour money into!  I would much rather live in a facility, apartment or CCRC, that fixes anything that breaks and does things like install ceiling fans, grab bars, and comfort height toilets for free or a minimal fee.  Not to mention well maintained landscaping, club house, pool, and exercise facility.

So, while we are leaning towards the CCRC, small doubts still surface and cause trepidations.  Yet, in my case, a CCRC that will provide our family the security now and a contractual future care guarantee is the best choice.