Thursday, May 17, 2012

How LBD effects my wife

I admit that I write a lot about how LBD effects me.  But I don't think I have ever written about the effects of LBD on my wife.

There is the obvious issues that effect a full time caregiver.  I must admit I am not always the most cooperative patient!  For instance, I don't like to drink water!  Coffee, beer, even soda, but not water.  She on the other hand, knows the health benefits of water.  But, I resist because I don't like the taste of water.  There are other worries, like me wandering, or me over exerting myself, or my excessive picking of my fingers.  But there are other issues I just never thought about, until now.

We are best friends and enjoy spending time together.  Now, I am not as engaged as I once was.  I loose track of conversations, get lost in my replies, and loose the ability to express myself because I loose words.  I have fears and get angry when I make a mistake doing what I always did before.   And I also have great fear discussing the budget and really do not like the mention of money, budgets, or future plans at all!  So, she has really lost her partner in these areas.  Now I am not always lost in my responses of angry.  But these issues are happening more and more.

I see her worry in the way she treats me and how she cares for me.  But I also sense her frustration.  I understand that frustration.  However, try as I may, I really can't help her with her frustration or her worry.  So, in many ways, she is alone also.  Our son helps, but he is facing his own issues.

So, as the patient, I must understand how my disease effects her.  Maybe I should be more in tune to that in the future.

The hardest part of moving to Florida

OK, we have been in Florida for 6 months.  My GP who was a very compassionate and perceptive doctor, told me that the move would negatively effect me.  He was right and I have written about the effects of this move before.  But, recently I have actually realized the most negative impact of the move.  You see, I have many friends in the Tidewater area that are my support group.  They have helped me in ways that are too many to describe here, before and after my diagnosis! And I have written before about how much I miss them.  But it is their absence that has the most negative impact on me.

Now, my wife is my best friend and spending our days together is wonderful.  I thank GOD for this time together, while I am still able to enjoy it.  SHe makes every effort to make my days enjoyable, relaxing, and just challenging enough.  But, I miss the friends that I served with, worked with, shot with, drank with, and shared sea stories with.  We have been here for six months and I have not made a single friend!  I volunteered twice, to work on the USS Alabama.  No reply.  We volunteered to help at a local hospital holding and rocking at risk babies.  No answer.  My Church has no uses for me, so I have no ministry, so my talents are going to waste.

I know my wife is happy here and that makes me happy.  She grew up in California near the beach.  She is a "Beach Girl" and feels at home so close to the beach.  We both enjoy being close to my son and his family.  So, my life is like a two legged milking stool.  Without that third leg, it's hard to be comfortable.  Balancing on two legs makes it difficult to be comfortable.

Just the same, I don't think I would move back to Virginia.  I am here and I have to find a balance in my life.  And, with our plans for me to move to the Armed Forces Retirement Home, this is the best location for us.  Just the same, I am lonely.  ANd that is the hardest thing for me to deal with.

Saturday, May 12, 2012

Things going away.

Today, we went to the movies with my son and one of my grandsons.  My wife went to hold our seats in the theater while I waited for our son to show up.  When he arrived, we went to theater 3 where the movie was to view.  My wife was not there.  We searched the entire facility, twice.  Still no wife.  On the third search, I found her in another theater.  Naturally I was worried and agitated over the issue.  The movie stunk!!

When we arrived home I made coffee as is my norm.  Then I went to the bathroom and changed clothes.   As my wife returned to the kitchen, she noticed that I had not placed the coffee carafe under the filter basket and coffee was running into the tray we have set up for this eventuality.  It worked, it captured the coffee.  But I was very upset!!

Why, because anything I mess up because I forget to do a step that was once automatic, upsets me.  I immediately burst out with; "People need to realize I am not normal like I was!!"  Of course my wife understands that and it was my frustration coming out.  After that, I took a nap to calm down.

The truth is, it deeply frustrates me to see the decline in my mental capabilities.  You may say, what's the big deal, I do the same thing.  Well, I didn't!  But it is more than the coffee.  It is the problems expressing myself verbally, the constant pain in my legs and arms, and everything else I have written about before.  I am getting agitated just writing about it.  I am loosing control of my emotions and loosing control of the environment that I live in.  Having always been the "Man in Charge", this is the most frustrating and maddening part of this disease.

So, things progress, even if I don't like it!

Friday, May 11, 2012

I have to get this off my chest!

On my Navy Blog, "The Master Chief's Lair" I have written about my family situation and my my parents who raised me. I really had an idea situation growing up.  My Mom and Dad loved me and nurtured me and I am who I am because of the foundation they built.  GOD blessed me with my parents.  I was also blessed to have my biological Mother in my life.  She also loved me and did her best in every way.  I have said it before and I will repeat myself here;  My Mother was a very brave woman, carrying a child out of wedlock to term.  In 1951, that was not accepted in polite society and most women who found themselves in this condition were "sent away" until after the birth.  Her bravery gave me life.  She could have just as easily killed me!  I am proud of her and her courage.

All this being said, there is one issue that makes me feel empty, unwanted, and incomplete.  That is the lack of connection to my biological Father and his family.  Yes, I know that I represent his actions that he would have rather forgot.  But, I am not forgot, I am here and 61 years old.  Since I was diagnosed with LBD, the need to contact my "other" family has grown even stronger.  I did talk to my biological Father twice before he died.  But he was not happy to hear from me.  He died in the 1990's as did my Mother.  My biological Father had a son, born a few months after me and names the same as me, I called him once and we briefly talked, but he has rejected any contact since then.  I would dearly like to meet him.

Additionally, my biological Mother had three other children, another boy and two girls.  I do not know where any of these siblings are either.   Nor do I even know where to start finding them.  But again, I would love to meet them.

Again, I was blessed to be raised, loved, nurtured by my Parents.  Since this is Mother's Day weekend, it is fitting that I honor my Mom for the sacrifices she made for me.  I still hear her voice, listen to her lessons, and remember her loving touch, even though she passed away in 1976.  Mom was very special and I love her, even more today.  But, I would love to complete the circle by meeting my other siblings.  I guess that is my wish.

What is a "Big Deal" in your life today?

I was sitting on the couch this morning trying to remember if I had gone to the bath room this morning.  Maybe not a big deal for you but a big deal for me.  Since I only have half of my colon from a previous surgery, I am very concerned about getting constipated.

Another "Big Issues" is, did I take my pills?  My wife manages my medicines and places them in an organized pill box.  They are organized by day and time.  But, some times I forget to take them.  Naturally, this is a big issue medically.  But it is also a big deal for my independence.  If I loose the ability to take my meds on time, I will feel even more diminished.

We find that as our disease progresses, little things become big issues.  Issues that upset us when we miss them.  For instance, I forget to zip up my fly when I get dressed!  It's not a big deal for others since I always wear my shirts out.  But, it annoys me.  As my Dad aged he told me; "It's no big deal if you forget to zip you fly.  It is a big deal if you zip you fly before you are done."  Ouch!

Other issues are forgetting the last time I took a shower.  Days seem to blend together so I loose track of what I did on what day.  Annoying!  I never forget to eat.  That is not an issue yet.  Planning events annoys me.  I hate to plan and for the most part, I don't want to go when the planned date comes up.  If we just GO somewhere, I am much better.

Another big annoyance is our budget.  My wife runs the daily budget and has forever.  She is great at it and as a career Navy man, I was gone so much that it was the best choice.  That being said, I always kept up and we discussed the budget often.  Now, any mention of the budget sends me into a rage!

So, these are just a few of my issues, but I am interested in yours.  So, comment on this post and let everyone know that their issues are normal for those of us dealing with LBD.



Thursday, May 10, 2012

Continuing Care Communities

Even though I have Lewy Body Dementia, I am blessed to still be able to express myself, and I do through this blog.  I will admit that I am having increasing issues expressing myself verbally because I loose my thoughts and can't find the words.  But, when I get a thought chain going, I seem to be able to get my thoughts expressed through my computer.  Of course, if it were not for spell check, you would not recognize my thoughts as English!  Technology is great.

My wife and I have looked at numerous Seniors apartments, continuing care communities, and assisted living apartments.  We actually lived in an "Over 55" apartment community before we moved to Florida and liked it.  My wife does not feel comfortable in a Continuing Care Community and I can see her point.  She is a healthy, vibrant, independent, person and naturally feels stifled and controlled in those type of facilities.  The other serious drawback is the up front fees.  Some of these places want $300k or more up front.  Then they charge you $4000 a month to live there!  Expensive by any measure.

Just the same, I feel secure, safe, and provided for in a facility that would see to my needs no matter what medical or mental issues occur.  I never had this need for security until recently.  My dream was always to live on 20 or more acres and be a survivalist!  A small house, wind turbines for electricity, grow my own vegetables, wood heat, you get the idea.  Now I would rather have a small room with 24 hour care!  My security dream has changed indeed.

We have come to a decision on this topic that I hope works. Some time ago, I don't remember exactly when, we visited the Armed Forces Retirement Home in Gulfport Mississippi.  It is a beautiful facility and I immediately fell in love.  While my wife cannot live there, she can visit and I can go out anywhere we want.   We will move her to an apartment or condo close to the "Old Sailors Home" when, and if, I get my move in date.  The cost is very manageable and if I qualify, that's where I want to be.  Of course, they have to accept me with my present diagnosis.  The rule is you must be self-sufficient when you move in.  There is a two year waiting list right now, but I have applied.  So, we will see what this brings.

Again, I am blessed to be able to express myself.  If you have been diagnosed with LBD, let you desires and wishes for future care be known while you still can.  Don't play Ostrich and stick your head in the sand!  Make plans and do research while you still have an input.  Maybe staying home, with assistance is OK with you.  Maybe not!  But planning is the key to a smooth transition through the stages of our disease.

While I write less now than before, I will continue to express myself and describe the issues I face in my journey.  It helps me and I pray it benefits others.  Thanks.

Sunday, May 6, 2012

Anger management

Anger management is an issue for everyone, regardless of health status, age, or sex.  We all struggle with controlling our tempers.  Just look at a two year old when things don't go their way!  It is not pretty when they melt down.  Or look at a teenager who steps over the agreed upon house rules and gets punished for it.  You would think they just got condemned to prison, for life!  So, you may now understand how I have issues controlling my emotions all of the time.  Remember, the neurologist has explained to me that the social filter portion of my brain, and the brain of many dementia sufferers, is degrading and will someday quit working all together.

Right now, I am, for the most part, able to control my emotions.  Sometimes that is through a process called POUTING!  Yes, I pout if pouting is being quiet and refusing to speak.  That is a way that I can keep my emotions in tact and in turn, not hurt someone else's feelings.  It may make some people uncomfortable, but it works.

I have also written before about my loss of the ability to cry.  It happened before I had a definitive diagnosis of LBD.  But, regardless of when it came to be, I seldom cry and only in the most dire circumstances.  This is a problem because I cannot vent those emotions that get trapped inside of me.  Since I know this, I have to find other ways to deal with my emotions.  My wife is very good at managing most circumstances and is very in tune with my feelings.  So, with her help, most issues are defused or averted.

When we lived in Virginia Beach, in our over 55 apartment, I had an outburst over some folks moving into an apartment.  They commandeered the elevator and I had some packages I needed to move up to our apartment on the third flood.  The people were pretty rude about it and I exploded!  I gave them a wire rushing, the apartment management, and the movers, again!!  Of course, after I calmed down, I apologized.  But, it was ugly.  Just the same, I know there will be a day when I explode, profanity and all.  And I hope that everyone will understand that.  I try to take into consideration, every one's emotions.  I don't want to hurt my family or friends.  But sometimes, that desire seems to not be there and all I can see is that thing I am angry with.  You can see, how not having that "People" filter is a bad thing.  Again, having a care giver who understands this problem is essential to my mental health and the emotions of others.

I once saw a fellow who, without provocation, exploded in profanity at everyone and anyone around him.  He was loud, abusive, and foul!  I did not understand why, until recently.  Now I understand and I hope others will too.

Wednesday, May 2, 2012

Suicide is NOT the way out.

Today we heard of the tragic apparent suicide of NFL super star Junior Seau.  Some of the reports I have read tell of Mr. Seau being depressed and talk about the possibility of hi having dementia related to his NFL career.  Additionally, other NFL players have recently committed suicide recently.  And they were diagnosed with dementia.

Now, it has already bee proven that repeated head injuries, as one would experience during a career as an NFL player.  So the idea that Mr. Seau might have dementia caused by his career is not a far stretch.  But the real topic of this post is suicide.

When someone is diagnosed with a terminal disease, they go through all the steps of grief, at once!  And I can understand while someone is is deep in the throws of "Why Me".  While they are contemplating just how terrible the future may be, they might experience the desire to "end it all now" instead of going through the torture that may be ahead.    But suicide is NOT the way out!  Why?  In my view, I can only terminate what I have initiated!  I can trade a car if I bought the car.  I can sell a house, if I bought the house.  But, I did not GIVE myself LIFE!  GOD did.  Therefore, I do not have the right to kill myself.

Life is a precious gift.  It is wonderful and wondrous!  In the Book of Psalms we are told that we are "wondrously made in our Mother's womb".  Psalm 139 also tells us that; "All the days of our life are written in GOD's book before we are formed in our Mother's womb."  If GOD made us and planned our life, I do not have the right to take my life.

Also, if GOD know all that will happen in my life, then HE is not surprised about my medical condition.  If then, my condition was planned, then GOD has a plan for me to live with this disease or diseases, for as long as I am scheduled to live!  I wrote once before that LBD will not shorten my life.  I will live as long as GOD originally planned for me to live.  Not one day longer or shorter than that.

My Dad used to tell me, on the back of your Birth Certificate is your Death Certificate.  But the Death Certificate is written in invisible ink.  He was right!  And that is what I will live by.

I just don't need another medical issue!

Yesterday, I spent most of the day in the local hospital.  It was my first visit to this medical establishment and I must say it is very good.  Oh, the reason I spent those pleasant hours was because of an excruciating pain in the left side of my abdomen.  The pain started slow and low on Sunday and built to a seven or eight out of ten by Tuesday morning.  I went to my GP and he poked and listened to me yelp and scream until he sent me to the hospital.

The professionals at the hospital found other was to cause me discomfort.  Drinking bad tasting liquids is not my strong suit.  I gag on toothpaste!  But, to prep for a CT scan of my intestines, it was necessary.  They also gave me some pain meds that helped.  I was concerned that I might have trapped an intestine in a muscle wall or had another colon tumor.   But it was neither.  It was disclosed that I have Colitis!  While it has not been determined what type of Colitis I have, it can be a difficult problem.  My hope is that this is an isolated case and the antibiotics will solve my issue.  Only time will tell.  But if this is a chronic issue it will add a new chapter to my medical record.  Just what I need!  Oh well, the pharmacist will be happy!