Sunday, January 29, 2017

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

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

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

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

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

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

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

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

Friday, January 27, 2017

Lewy Body Dementia is a LONELY disease!

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

But, alas, no one comes to visit.  

How television impacts me

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

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

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

Tuesday, January 24, 2017

The last of the move is done!

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

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

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

Wednesday, January 18, 2017

I am a prisoner!!

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

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

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

Today, I got to know another LBD patient!

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

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

Tuesday, January 17, 2017

Loosing the ability to Preach

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

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

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

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

Wednesday, January 11, 2017


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

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

Tuesday, January 10, 2017

Changes, challenges, and frustrations

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

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

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

Sunday, January 8, 2017

Why did we move to a one bedroom apartment?

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

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

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

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

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

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

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

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

The MOVE; Post mortem

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

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

Thursday, January 5, 2017

The move, day 7. The last report!

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

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

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

Wednesday, January 4, 2017

The move, day six!

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

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

Tuesday, January 3, 2017

The MOVE, day five

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

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

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

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

Monday, January 2, 2017

The Move, Day four!

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

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

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

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

Sunday, January 1, 2017

The confusion of Dementia.

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

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

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

I wonder what will happen next?

The MOVE day three

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

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

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

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