Tuesday, June 25, 2013

New feelings

Recently, I have had a few "Good" days, and as always, I am now experiencing the "Bad" days that always follow.  Each "Good" day is a little less good and each "Bad" episode is a little lower.  I expect these ups and downs, so I am not upset or unsettled over them.  They are what they are, the progression of my disease.  But a "New Feeling" has begun to invade my physical and mental being.  This new feeling does not scare me or upset me.  It is just something new that I have never felt before.

This new feeling is more like the next step on my journey.   It is also a feeling that most of you will recoil over.  But don't!  Psalm 139 written by King David, tells us all the days of our life were written in GOD's book before we were formed in our Mother's womb.  I have tole you in an earlier post, this disease will not cause me to die one moment before GOD had my homecoming planned, before I was formed.  So, do not be troubled or concerned.  I'm not.

This feeling is the feeling that this life is beginning to wind down for me.   I feel like GOD is telling me to get ready for a wonderful new chapter in my life.  The feeling comes over me mentally as a heaviness and quietness.  Physically,  I feel compressed!  That's the best description I have.  It is new and the feeling does not stay, but comes and goes.  I sense no heart of blood pressure issues and my pulse stays the same.  Yet, this feeling comes upon me.

I love the life that GOD has given me.  The good days and the bad days.  The challenges and the victories.  I have been loved for over 40 years by a great Woman.  I have a loving Son and his family.  Grandsons, great friends, wonderful, exciting experiences that most men never have.  My Navy career was my second love affair.  If I could help the Navy today, I would put on my Uniform and go to work.  This has been a great life!!  Best of all, I serve a wonderful GOD who made a way for a sinner like me to join Him in Heaven!   A Savior who paid the price for my sins and a Holy Spirit that guides me and teaches me everyday!  This has been a great life!  But the next chapter will be even more astonishing!

Lewy Body Dementia is an interesting disease.  It makes you introspective, defensive, sensitive to noises, and it robs you of your memory and mobility.  But, through all that, I still feel very secure in my Father's arms.  I have no worries, no fears, and no regrets.  And, as I have always said, I will see this through, to the end.  Why, because I am interested in seeing where LBD takes me!   I still find this disease interesting!  And this new feeling is just another interesting thing in a long journey of interesting things.  Nothing more.

Thursday, June 20, 2013

The pain experienced by the caregiver

As I wrote last, we had an appointment with a new Neurologist this week.  It was a good experience and I am encouraged that he will be good for us.  But, as we briefed him on my disease and how it manifested itself, I saw the grief and pain in my Wife's face.  This was the first time I ever noticed her pain.  She seemed to actually recoil at each description of a symptom as if she was actually experiencing that issue herself.

My Wife loves me!  I have always known that.  But, I never realized how deeply me having LBD has hurt her.  She is in pain over my problems.  She hides it well and when I told her about what I observed, she brushed me off.   She IS a tough person!   Many Navy deployments and workups has forged her in the crucible of stress and loneliness.   But this is a new and unexpected villain that neither of us expected and were not prepared for.  We are well into this journey yet I never really saw her grief before.  It brings a much different prospective to me.

As the one wit the disease, I focus on how it impacts and effects me.  But those negative things are actually harder for her to deal with than for me.  I know that now.  But, what do I do?

I have been told two things that impacted me.  First was from my neurologist in Virginia.  She told me that I had not dealt with my disease mentally.  I disagreed with her then, but I now totally agree and I am trying to address that issue.  Second, I was told that this disease is not all about me.  I know that is true now.  LBD effects the caregiver more than I understood and I am sorry that I did not understand that before now.

Still, I don't have an answer as to how I can change this.  But I intend to be more attentive to Her feelings and emotions.  My LBD does effect Her and I must understand that.

Tuesday, June 18, 2013

A New Neurologist

Today, we had an appointment with a different Neurologist.  The one I have been seeing since we moved to Florida is not a good match for me.  He just never acted like he cared about me.  This one is different!

He has a very caring staff that asks questions about your condition, how you feel, what problems you have had, while all along showing concern.  Then, the Neurologist came in the room.  Let me say up from that he is younger that my previous Neurologist.  He spent at least 30 minutes with my wife and me asking questions, listening, observing, even testing my memory.  He then asked if he could get my past records from my previous Neurologists!!  Hallelujah!!   I was sold.

As he talked, we realized he understood LBD and the ups and downs of the disease.  He discussed his plan for our future and acted like a team member not some aloof consultant.  I get the idea he is in this for the long haul and I like that.

We have another appointment in 6 weeks to permit him to get my previous records and review them.  He told us he might order some tests, but only after he determined what tests had already been done to preclude duplicating testing!  Again, Hallelujah!!  No more unrelated tests just to get the doctor a set of steak knives.

Yes, I believe this Neurologist is a keeper.

Sunday, June 16, 2013

Surfing the WEB is good for your mental health!

I had an appointment with my Psychiatrist a week or so back.  He actually specializes in Lewy Body Dementia and Alzheimer's.   He is a middle aged gentleman with a gentle nature.  He asked me how I spend my days and I had to really think about the answer.  Since I have little desire to do anything, I could not come up with an answer.  Then, I remembered that I Surf the WEB quite a bit.  That and write the occasionally blog article and watch the Western Channel on TV!  His reply was "Good" when I told him about my computer use.  He said it was good for my mind and that I should keep it up!

That surprised me for a moment.  But, if you "Peel the onion back" surfing the Web and reading articles and emails keeps me engaged.  It beats my other pass time which I did not tell him;  Staring off into space.

Since I have not found a neurologist that cares if I live or die, and my GP is being put out of business by the hospital chain he works for, having any Doctor that remembers my name and disease is refreshing! So, I guess the Web is my friend.


CPO Sharkey

It is early on Father's Day and I am up so I thought I would give you an update.   Until this moment, the worry about the closing of my GP's office had faded.  That is the nice thing about LBD, I forget things.  But now, I am again upset about loosing Dr. Adkison.  I am powerless to effect a change in the decision of Sacred Heart.  I guess that is symptomatic of where I am in life, powerless.

Last night, when I went to bed, I was overwhelmed with sadness.  My GP being taken from me, the neurologist issues, home maintenance issues, muscle aches, missing my friends in Virginia, not being able to find a Church in Florida, all ganged up on me at once.  I did not cry, since I seldom do now, but I was close.  That powerless feeling, unable to change things, is really upsetting.  I was just getting to feel comfortable in Florida when the GP loss issue jumped up and hit me.  We were at Sonic eating ice cream when we learned about the closing of Dr. Adkison's office.   Good immediately changed to bad and now I am in turmoil again.

I do have an appointment with a different neurologist this week.  We will see if this individual cares about my condition.

During our weekly Bible study at the local assisted living facility, we met a lady whose husband in institutionalized with LBD.  We had a short talk with her but there was no real connection. She was about our same age.  Just the same, I am seeing more and more people with LBD.   Just an observation.

My new chair arrived on Friday.  It is wonderful.  The only issue is, it is slow and you must wait until the chair "Lets" you up!  Not a problem, just a learning curve.

I have noticed that my thinking and consequently my writing is in staccato.  Short, pointed thoughts.  I don't normally think that way, but recently it has been the norm.

Last night we went over to my son's home and cooked burgers on the grill.  It is always good to be with family.  The grandsons had friends over and the energy was good.  I like my grandson's friends.  They are nice, respectful, level headed, teenagers, what actually have some idea about their future.  They treat me with respect and laugh at my attempts at humor.  Good kids.

Also, last night, my son and daughter in law gave me my Father's Day present.  Now, I normally don't want gifts.  I have all the things I want and need.  If we need or want something, we go but it.  SO, I am hard to buy for anyway.  Yet, my son surprised me!  I loved the Don Rickles TV who, "CPO Sharkey".  But you cannot find it anywhere for sale.  Why, I can't tell you.  But my son found it, and presented me with CDs of all 37 "CPO Sharkey" shows.  TV will be good again, at least in our home.


Friday, June 14, 2013

Yesterday was a challenge!

I have had difficulties getting accustomed to living in Florida.  I left a great medical team that was dedicated to helping me.  I have a great, strong, friends network.  I knew the area!  I was in a familiar area with long time friends close to me.  Finally, and most important, I had a great Church family!
Yet, we wanted to be close to our don and his family, and I will readily admit that being close to them has been very good.

But yesterday, I received a very shocking blow.  I found out that my GP, the ONE doctor that I trust in Florida, is being fired by the medical group that he works for.  That's right, Sacred Heart is closing my Doctor's office and letting him and his staff go.  Sacred Heart Hospital is firing 3000 medical personnel!  I was shocked and devastated!  Now, what am I going to do?!

My emotions ran wile yesterday.  But today, I know that I can do nothing by pray for the fine medical staff in his office and for Doctor Atkinson.  Sacred Heart does not know me or care about me.   My experience with doctors in the Pensacola area has not been good.  I do not see the quality of physicians here that I saw in Virginia.

I do not know what I am going to do.  Move back to Virginia was my first emotion.  But, that cannot happen.  I just do think another move would be good for me or my wife.  But, I do feel defeated and demoralized.  It seems, just as I am getting acclimated and comfortable, something happens to make me agitated and unhappy again.

I really do not know what to do.  I feel paralyzed!

Sunday, June 9, 2013

Lost memories

I have always prided myself on having a good memory.  I actually used to be able to memorize the electronic, electrical and hydraulic schematics of the MK 42 Gun Mounts that I worked on.   As the old man in the "Sons of Will Sonnet" said; "No brag, just fact."  As a public speaker and as a communicator, I could tell stories about my past, including names, dates, and historical events to illustrate my point.  But LBD is robbing me of that "Steel Trap" memory.

I spend more and more time trying to remember old shipmates name, what ship I knew them at, or even where I lived.   Often when telling a "Sea Story" I cannot locate the facts or even the people involved in something I am trying to tell some one.  It is frustrating and embarrassing to me and it is starting to cause me to not try to tell stories.

Now I know some of you are very glad that I am now starting to be quite.  In some circles, it may be considered a great improvement for me.  But, I love "Sea Stories" and I believe they serve to teach others about the traditions of the Navy.  So, loosing that part of my personality is upsetting to me.

Even when writing my Navy Blog, I find it hard to make mental connections to the past.   Writing posts take longer and are somewhat thinner in details than before.  Yet, when I am "On" I still enjoy telling and writing "Sea Stories" about my Navy past.

Now remember, this blog is to document what is going on as LBD impacts my life.   And this loss of long term memory is related to that, since my memory loss has been limited to short term memory until now.  We will see how this proceeds.

Saturday, June 8, 2013

Personal perspectives

I just went to our bathroom to was my hands.  The counter top seemed SO high and when I looked in the mirror, I seemed so short!   I felt small and diminished!  This is not the first time this has occurred.

Other times in the same location, I feel tall and the counter top is where I remember it being.  What is the difference since I do not believe this is an anomaly.   It could be related to the events of the last few days and how I feel about them.  Or, it could be related to how the next few days will unfold.  Otherwise, it could be a result of events or an indicator of my future mental condition.   I truly do not know.

What I do know is that this personal perspective impacts me.  Again, I wonder if any of you experience this phenomenon.  Or maybe,  am just moving on to the next level of LBD.

Friday, June 7, 2013

I keep forgetting I am not 30 anymore!

Today, we decided we would take out 7 bushes on the left side of our driveway and plant grass.  It will be easier to take care of because weeding is not on my dance card!   So, we went to Lowes and bought a few bags of dirt, grass seed, and a bench that seats two for me and Marvel on the back porch.  When we got home, my wife and I moved the bench to the back porch.  I should have stayed there.

After that we started to dig out the bushes.  My neighbor, who does SO much for me, wanted three of the bushes I was getting rid of to replace three of his that did not make it.  So, I decided to remove his dead bushes and transplant where good looking ones of mine.   It was warm and humid, and I lasted about five minutes!  I quickly went in because I was going to quickly meet the ground if I did not.  A few minutes of the cool of the air conditioning and a glass of water and I felt better.

We ate lunch and the sun became obscured by some heavy clouds.  So, we went back to try again.  This time, we succeeded.  Three bushes successfully transplanted in my neighbor's yard.  I did not do anything else and there are four more bushes to dig out before I can spread the dirt and plant some grass.  That will wait until tomorrow.  I did go in and take a cool shower and after a hour or so, I stopped pouring sweat!

The rest of my day has been inside, being my wife's sour chef.  Dinner was wonderful and we made some things we have never made before.  We enjoy cooking together.  But, I am exhausted!  I will be in bed soon and I hope I sleep better than I did last night.  The bottom line is, I always think I can do something, just as I did years ago.  And just as quickly, I realize that LBD has taken away my ability to be strong, active, or resilient.  It angers me and I have been in a huff all night because of it.  I hate to ask for help.  My son and his family have their plate way over full!   And, in my mind, I should be self reliant.  I really need to just admit, I am not 30 anymore!  

Things I used to like

I used to have many things that interested me.  For instance, I was an avid car NUT!   I was always at the Virginia Beach New Car show on the first day!   It did not matter how cold it was or how wet.  I was there.  Just think, ever new auto manufactured for sale in North America, open for me to sit in, try on, peruse!   We have bought more vehicles that "Little Joe's" used car lots!  Cars were an extension of my personality.  They reflected where I was mentally at the time of purchase and what was important at that time.  Now, while I still pay attention to cars, They have lost their allure.

There are other things that have gone the same way as automobiles.  It seems, the things I was passionate about are just not that important.  The things I liked to do, are no longer fun or they require too much effort.  I mentioned earlier about travel.   In the past, I would ump in the car and go!  Now, I would rather stay home.

Another passion of mine was houses.   I could have saved a lot of money if I had applied for my Virginia Real Estate License in 1983!  The other side of that is, I made a lot of money for one particular Real Estate Agent.  We have owned and lived in seven homes since 1983!  Not to mention three apartments.  I really DO know what the Old Testament Israelites went through during their 40 years in the desert!  Well, no more.  The thought of moving terrorizes me.  If I sell this house, it will sell furnished, as is!  

I was an avid shooter.  I loved shooting fire arms of any kind.  I competed, not very successfully, in IDPA matches.  Belonged to a Gun Club.  Took friends shooting and taught their kids how to shoot.  Now, it is too mush effort.

It's just interesting looking back at what I filled my time with then and what I fill my time with now.  I had a Doctor's appointment a few days ago and he asked me;  "How do you fill your days?"  I really could not answer him!  I looked like the IRS head when asked by Congress why he went to the White House 153 times in four years.  His reply; "The Easter Egg Roll"!  I finally said, surf the web and watch TV.  The Western Channel and the Military Channel are my favorites.   No home improvement shows because that means future WORK.   No, the past is where I am most comfortable.

This is just a review of where I was and where I am now.  I find the progression of this disease interesting, still.

What I really feel inside

Many people want to know what I feel.  That is normal, I need to know what my fellow LBD sufferers are experiencing also.  Some of my friends chide me for only relating how difficult things are or how bad I feel.  I have tried to moderate some newer posts to reflect the positive.  But, at the moment of writing this post, I don't feel all that positive. The stark reality of LBD is overwhelming.  Yet, I have always tried to keep, as the British say, "A stiff upper lip!"  So, I have reservations about publishing this post, yet I believe it will help others, so, here goes.

For a long time I have kept my emotions bottled up inside of me.  I have had a great life filled with wonderful adventures.  God blessed me with a wonderful wife, a great career, precious friends, and salvation.  I have seen good days and bad.  I have done good and bad.  And I have learned that anything I like, changes.

Now, I am dealing with the greatest challenge of my life, the end.  I have done many things, some dangerous,  some exciting, some fun, some mundane, but this is new to me.  I am not frightened, my ticket to heaven is bought for me.  But I do suffer from depression.  Why, maybe for the things that might have been, the missed opportunities, the mistakes, the sins.

There are people to whom I owe an apology, but that opportunity for me will probably never come.   That fact alone upsets me.  No one owes me anything.  All debts are paid or forgiven.

All I desire from now on is to be with my wife, who I love dearly.  She is everything to me and the only person who loves me completely.  She is everything to me.  She has stood with me through it all, without complaint.  People call someone's wife their better half, and it is true.  Linda is the best part of me.  She has some health issues also, but she keeps them buried or she ignores them.  She is there for me, my rock, at any cost.  I love her with all my heart.

Somethings that are inside me, I will never reveal.  But my love for my wife I will sing from the roof tops.

I hate the way my body feels.  The stiffness, unbalance, tired all the time, excess sweating with the least exertion.  I hate my mental decline.  The foggy memory, lost thoughts, depression, living in the past, and the hallucinations.  This disease is winning.  I have not given up, but I know when I am beat, and I am beat.  Now don't worry, I will go the whole 15 rounds.  But it won't be pretty!

I also hate the truth of my birth and the whispers behind my back from those who knew the truth about me, that I never knew.  But what hurts me the most is those who know will not tell me the truth.  I understand not telling me when I was a kid, but now, at 62, I am old enough.  And for those blood relatives who deny me, my existence, living and dead, I say;  Well, expletives deleted, .. Your Loss!

I have a friend, who is closer than a brother.  I love him and appreciate his unwavering friendship.  He and I have had good times together.  He too fights the good fight.  I am proud of him.

My son has grown into an exceptional man.  He has built an exceptional career and is the model father.  I am proud of him and I have not said that enough.

So, now you know some of what goes on inside my quiet demeanor.  Some of the things that haunt me and keep me up at night.

Last night or tonight, I don't remember which, I saw a bird flying through the living room!  It was not really there, or was it.

I realize these are random ramblings, but is is how my brain works these days.  Again, this is a very personal post written to show how my mind is dealing with this journey.

PS;  I wrote this post some time ago.   discovered it in my "Drafts" file and decided to publish it.  It is very personal yet it shows how my mind functions today.  Emotions are raw for me and my wife. LBD is a rough ride.

Up late

We went to bed about 11PM.  I woke up at about 1:30 AM wide awake and my constant companion needed to go out!  So, I am up, thinking.  LBD is such an interesting disease especially considering the on again, off again, episodes.  For a brief period today, I saw the fog lift.  I felt like my mind was firing on all eight cylinders!  I even saw better the things around me.  Then, as quickly as it came, my clear view became dim and foggy.  I knew that would happen, so I just choose to enjoy the brief interlude back to where my brain was.

Another thing on my mind today is planned trips.  Planned trips bother me because the are a weight that hangs over my head!  I worry constantly about the up coming trip, the cost, the logistics, how I will do, the time of travel, just everything.  I will not fly anymore.  I don't trust civilian airlines and we cannot drive the long distances we did in our youth.  That makes hotel stays necessary.  Worries.

I have a Navy friend coming to visit next week.  He is much younger than I and still on active duty. I enjoy his friendship and perspective on the Navy.  It will be a good visit!

Being out in the night time makes me very uncomfortable.  There are too many evil things that can happen in the dark and I strangle prefer being in the light!  I am acceptable in the house with the lights on, but I much prefer the day light.  The act of letting m four legged friend out to do his business is unnerving to me.  Thankfully, he feels the same way.  The trips out are brief.

My wife has been trying out a number of new and exciting recipes this week.  Since I am her sous chef, I have been chopping, peeling, cutting, and dicing my way through some exciting new meals.  And, of course,  there is always clean up!   It has been fun to get in the kitchen and try some new foods.  We have discovered some new favorites and some old meal friends!

Someone sent me a reply stating that I needed to "know my limitations".  LBD teaches you your limitations, quickly.  Still, I try to be what and who I was or at least what I thought I was.  Now, I know I have diminished in strength, stamina, and mental acuity, but I still try.  Of course, every failure to meet my expectations brings bitter disappointment and the reality of my new limitations.   But if I just accept that, I am defeated!  So, I will keep trying to be and do, what I thought I was before I found out that I wasn't!

I often feel that I am being followed, watched.  No, not like NSA listening in on my telephone calls. I know that is real, I have Verizon!  No, this is much more sinister.  For instance, people knowing what I did when they were not with me when did it.   It is a strange feeling.

Well, enough late night ramblings.  I see a bowl of cereal in my future.

One last thought;  If it were not for spell check, you would never know what I wrote!  Heck if it were not for the computer, you could not read my chicken scratching!  Progress is good.  Sometimes!

Thursday, June 6, 2013

Chewing problems

I have noticed a new problem chewing anything.  I have always eaten quickly and now I have to slow down and eat smaller bites to prevent me from aspirating my food.  I have had this problem for a while, but now I am actually locking my teeth together when my lower jaw closes out of alignment with my upper teeth.  I have noticed this a few times, recently my lower jaw moved and my front teeth actually weaved together.  It was unnerving and I was afraid that I was going to break an incisor.  I did not but this is going to be an issue.  I notice it now, but I will not later.

Also, during the recent chewing issues, I snapped a crown off of the first molar on mu mower left side.  Until this moment, I did not associate it with the chewing issue but it might be.

I will have to slow down and chew small bites of food.  This is like teaching me to do ballet!  But, I will try to dance through my meals.

If any of you have this issue or one similar, please let me know.  Thanks!

Wednesday, June 5, 2013

Ping Pong

I need exercise, I get that.  So, a friend of mine who has Parkinson's and I play Ping Pong at a local Church recreational center a couple of times a week.  It is good exercise!  Yes it is!  Bending over to pick up the ball, chasing the ball across the gym floor, crawling under tables to get the ball, are all very good exercise.  Especially if you do it for two hours!  I leave there drenched in sweat and very tired.

After our strenuous, exhaustive, workout sessions, we sometimes go out to eat lunch.  Yesterday was one of those days.  We went to a local Chinese Restaurant.  First let me say, this "Greasy Spoon" should be closed by the Health Department!  I did not eat much of my chicken chow mien, because the meat did not resemble any chicken meat I have ever seen!  It probably was a domestic animal that went "Meow".  I can't prove that but I don't eat anything that I can't identify!  As we were getting ready to leave, my friend tried to stand up and immediately lost his footing.  He is a full size man and I had great difficult keeping him from hitting the floor or the table top.  He was not aware that his foot had fallen asleep as we sat.  The incident really unnerved him and me as well.

Try as we might, Parkinson's and Lewy Body Dementia both take our mobility away.  It is an insidious disease and it impacts the sufferer slowly.  Then, when you are feeling pretty good, POW, you are incapacitated by the movement disorder.  He has had one Deep Brain Stimulation device implanted in his brain and it stopped the shaking on one side.  But, nothing will restore the strength and balance that these diseases take from us.

I am hard headed and I don't use my cane all the time.  I should, and I am going to try to remember to do just that.  But, because of my memory issues and probably my hard headed nature, I probably won't until I fall and hurt myself.  But my friend's almost fall was a wake up call for me.  I hope.  But, like my friend, I am always trying to "be normal".

Monday, June 3, 2013

Caretaker issues, from the patient's prospective

My wife and I lead a Bible study at an Assisted Living Facility near us.  I truly enjoy this weekly event.  I connect with the people in the Bible study and have established a friendly relationship with them.  Last week, my wife was worn out and I volunteered to lead the Bible study alone.  She agreed and I drove the few blocks to the Facility.  The Bible study started about 15 minutes late because of a small retirement party for one of the cooks.  I took my usual 35 minutes for the study and then spent some time talking with the group.  I then pushed one of the group to her room in her wheel chair and talked with her for a few minutes.  As I got back to the car, I checked my cell phone and there were two missed calls from home!  I was concerned.

I called my wife and she was very concerned about my safety and location.  I drove home and was met by a very concerned wife.  I was late, I did not call, and she could not get me on my cell phone! Her concerns were not wrong.  I was 30 minutes later than I would have been if the timing was exactly on point.  I did not call, because I always leave my cell phone in the car to preclude it interrupting the Bible study.  She had every reason to be concerned.  Obviously, I was not concerned because I was not in tune with the time.  I thought I was well within a time frame that she would be comfortable with.

The point here is, 10 years ago this would not have been an issue.  But today, with LBD, where I go, what I do, and when I am supposed to be home IS an issue.  Naturally, auto accidents are an issue.  Now, I still drive well, but I do get tired easily.  I do have hallucinations, but I know they are just that.  I have not seen something that I actually think is real.  Although, my hallucinations are very realistic.  They just don't fit into reality.  For instance, I saw a horse walking across our backyard a few days ago.  It was a white horse with brown patches.  It was very realistic but my backyard is fenced in and I don't have a horse!  So, I discounted the horse as not real. 

The bottom line is I understand how my actions would cause my wife to be worried, upset, and even angry.  I have to be more careful to keep her informed of my whereabouts.  But, I am seldom away from her and that was one of the very few events I drove without her.  99% of the time, she is with me or I am with someone else.  Just the same, my condition must drive my actions.  I actually see her point and I feel sorry for the worry I caused her.  Caretakers have a difficult responsibility that never ends.  There are no vacations from the responsibility for care of your loved one.  Additionally, I can be difficult to live with.  I have personal issues and memory lapses that effect my  judgement and behavior.  I want thing the way I want them.  So, I know I am difficult but I also don't act this way on purpose.  I know this sounds wrong, but trust me, it is how LBD effects me.

So caretakers,  those of us with LBD do appreciate you and your constant care even if we don't tell you.