Wednesday, May 6, 2015

The stress of being a caregiver!

I can only imagine the stress my wife has to deal with as she deals with me having LBD.  I can see some of the indicators of stress on her and it hurts me to think me and my disease are causing these issues.  I have apologized many times for the circumstances we are in, but she always, graciously, tells me it is not my fault and it is not a problem for her.  Linda is a great wife, friend, and care giver.  I am blessed.

But, I know this is difficult for her.  She had to deal with her father having Alzheimer's and that was just the pre-show for me.  She was once removed from her father's issues since we never lived close to him until he came to live with us after her mother died.  By the, Kurt was well into Alzheimer's and deaf as a wall!  So, communications were limited.   There were some funny moments that we can look back on.  Like the fact that he did not like to wear the new dentures we bought for him, so, he hid them!   Kurt said they were stolen!  We found them after he passed away, hidden in his medicine cabinet!

Nursing homes knew little about dementia's back then, and knew even less about caring for dementia patients.  There were NO drugs to slow the progression of the disease available.  So, the progress was much faster and much more brutal.

Today, many of us slowly slide into the end stages of dementia.  Keeping at least somewhat connected to reality until the end stages.  In my case, I have had four good years of a slow, downward slide.  Very few abrupt drops off a plateau like we experienced with Linda's dad.  Thanks to drug research, my experience has been more gentle and manageable.

However, that slow progression may serve to build the pressure on the caregiver all the more!  Why, it is like waiting for Christmas when you are a child!  You know it is coming, but the anticipation is difficult to take.  Linda knows I am getting worse, she sees it!  Yet, there are days when I am much better.  That up and down progression is a signature feature of LBD.  And, it must be maddening to her.  Why, because she never really knows where I will be at any time of the week or day!  That alone causes stress.

Today is my birthday.  I truly never though I would get this old or be in this medical position.  Of course, God's plan for our lives is not revealed to us.  He knows all, but we operate in the dark, learning each day what God has provided for that moment in time.  Tomorrow is never promised to us.  That truth should make today, the most precious day we have!  This IS the day the Lord has made.  Let us be glad and rejoice in it.  Tomorrow may bring sorrow or joy.  But we have now, today, to enjoy.  Rejoice in that.

Sunday, May 3, 2015

Sunday Billiards

Tonight, as I do on most Sunday evenings, I played billiards with some of the men here at Azalea Trace.  It is a great social outlet for me.  The men I play with are exceptional gentlemen and good teachers.  All in all, I enjoy this activity.

But, I see the confusion of my LBD creeping into even my billiards.  From one game to the next, I cannot remember anything.  Who one, how to make shots, or even what balls we are shooting at.  It is very confusing and depressing.   Not because I was once a great billiards player, but that I once had a almost photographic memory!    And now, I can't remember if I zipped my fly.

I have commented before about my recent cognitive degradation.   For instance, I was disoriented at Church today.  Now, that is not totally out of the ordinary since we have a growing congregation and being in a crowd causes me issues.  But, it also illuminates the downward progress of my condition.

The first few years of this journey have been slow.  Yes, there were ups and downs, but the progress was slow.  Now, we see that speeding up.  I guess it makes sense since we are now in the second half of this disease progression.

My son called tonight as he often does.   He always asks me how am doing and I always tell him I am fine.  He knows I am not being completely open about my issues, but he needs to know I am fine with where this is going.  Yes, it upsets and depresses me.  But, I am also dealing with it the best way I can.  

So, that's my report of where I am.  It is becoming more difficult for me to convey my thoughts and emotions about this journey.  Some of the emotions are too deep and too personal to write about.  I will try to continue to write and keep you up to dat on my journey.  Thanks for being there.

Tuesday, April 28, 2015

I just figured it OUT!!

This morning, like I do every Tuesday morning, I attended a 6AM Men's prayer group at my Church.  16 men meet to pray for each other others, and the Church.  We also have a discussion time.  One of our member's relatives is dealing with Alcoholism.   That individual is in a treatment program and doing well.  Praise God!!

But, we discussed how individuals with addictions have problems staying away from the things they are addicted too.  One important issues is for them to find a totally new friend group.  When I drank, all my friends drank.  Now, none of my friends drink.

Many folks with addictions turn to the Lord for help and salvation.  They go to Church and are shunned!  Why, because they look, act, talk, different.  They were not raised up in the Church so they don't know memory verses, hymns, praise songs, or where John 3: 16 is in the Bible!  So, the regular Church gores shun them and those seeking help from the Church and God's people leave the ONE place they need to be.

I have commented before on my issues with people telling me I am not sick, I do not have dementia, I look and act perfectly fine, and on and on.  They are doing that for the same reason Church people shun addicts!   They don't want to be around them.

Maybe those who do not have an issue don't want to catch an issue from us.  Cancer is OK, they know you can't catch that, even from a toilet seat!  But, maybe they can catch dementia!  Or alcoholism!!  After all, those diseases are dirty!!  People with dementia soil their under ware don't they.  We can't be around people like that.

But, as ling as the "Washed" ones deny I have dementia, they can be around me, at a distance.  And tat is ho people treat me, from distance!  If I hide my disease, I am being dishonest and not transparent!  I thought, as a Christian, honesty was the only way to be.  Evidently, not so.

Even here in Azalea, I feel a coldness from folks that I have told about my disease.  Yet, we see and talk to a number of folks that have early signs of dementia.  Trust me, if you have dementia or you are the spouse of someone with dementia, you can see the signs.  But, if they deny it,they are OK!  So, they lie to themselves or others, and they are accepted.

I once told you I felt very much at home in a Memory Support facility we looked at before we moved to Azalea.  I really think I should have insisted I move there, either then!!  That was the most comfortable and accepted I felt in a long time.  Why, because I was with my kind!

SO, no I understand why I am treated the way I am.  I figured it out!!

Monday, April 20, 2015

How do I hang on?

Those of you who knew me before I came to the saving knowledge of Jesus Christ knew me as a wild man.  But, Jesus changed me a through the power of the Holy Spirit.  I am a totally different person and because of that, I am secure in my life and my eternity.

LBD has effected me.  The effects of LBD caused me to retire earlier than we had planned.  It also caused my wife to retire 5 years earlier than she planned.  LBD also lead to a completely unplanned, unexpected move to Florida to be close to our son and his family.

While all of these changes were unexpected, but they worked out to n\be positives.  Just like God planned!  You see, God is never surprised and never runs into unexpected circumstances, even though we do!  And while we had to leave our home Church and all our friends in Virginia, we have grown personally and spiritually here in Florida.

These thought came to me while I was sitting in my power lift chair, listening to George Jones and Vestil Goodman sing country gospel music, petting my oldest poodle.  If God can care enough about an old drunk like George Jones. Enough to lead him to salvation, we all have the opportunity to seek salvation.  God changed me and leads me through the life's challenges, you too can have this surety of eternal life.

Tomorrow, I will stand in for the Azalea Trace Chaplain and lead the weekly Tuesday Chapel Service.  Many of the attendees are wheel chair bound, have dementia, or have other debilitating, life threatening diseases, yet they seek the comfort Jesus and depend on God for everything in their lives.  That alone, gives me peace.

So, how do I hang on to happiness and peace dealing with LBD.  I depend on God, for everything.  It has worked for me and I know it will work for you.  Seek ye FIRST, the kingdom of God, and all these things will be added to you!

Sunday, April 19, 2015

When is the last time you were intimate with your Dementia mate?

This is an important question from the point of the LBD patient.  I see couples holding hands. hugging, kissing, and having their arm around each other.  I see wives rubbing their husband's necks and twirling their hair.  These are acts of intimacy between a husband and wife that express love, sexual acceptance, and an intimate connection that we need, no matter our age to medical condition.

But, I have observed that the opposite is true.  Why?  Well, first of all, those of us with LBD and other dementia's loose our sexual function due to the disease.  Our mates then think that loss of sexual function displays our dislike for intimate contact.  Nothing could be farther from the truth.

I need, cry out for, and deeply desire intimate contact from my wife.  It brings back fond memories of when I was young and healthy.  Many times, I find myself thinking; "I need to have sex with my wife."  Of course, the realities of the disease prevent this.  But, the intimacy that leads up to that act is still needed and wanted.

Dementia of any type is a lonely disease.  You are trapped inside your mind, in another time zone.  Many times, old friends and family avoid you.  Visits, invitations, and telephone calls become few and far between.  Even your spouse struggles to find ways to communicate with you.  I can see that.  On the outside, I am not the same man I was before LBD.  But, inside, I am the same man with all the same needs.  The real problem is, how do I communicate that to her?  Trust me, it is more difficult than you might imagine.  So, I fall deeper into my internal dementia time zone.  Having this disease has permitted me to finally understand why my Father in Law acted the way he did.  The big difference is, I now have a point of reference for him and me, and I can communicate these emotions with others.  My hope is, others will learn and add to this knowledge to actually help LBD patients and caregivers.

I deeply miss those days of loving intimacy.  If you are the spouse of a LBD or other Dementia patient, take heed.

Wednesday, April 15, 2015

I feel lost, distant, and disconnected

I have recently written that my experience with LBD has moved further down the road.  That is even more apparent to me now.  The last couple of days, I have felt lost and isolated.  Things seem far away and I am disconnected from the here and now.  This is dementia!  Now I understand where my Father in Law was, so many tears ago when he suffered with Alzheimer's.  No one knew how to help him then, and there were no drugs like Namenda and Arecept.  They just tied him i his chair to prevent him from wandering.

Much has changed, yet much has not.  I can still function in our apartment.  But, I am not here, I am somewhere else.  I recognize my wife and I still interact with people.  But that is a chore for me now.  I once was very out going.  Now, I would much rather be insulated in the cocoon of my mental world.

This is dementia, finally coming into full bloom.  I think it will be comfortable for me.

Tuesday, April 14, 2015

Why do we live at Azalea Trace?

Today, we had a water leak.  We noticed it when we got up from our afternoon nap.  It was after normal working hours, so I called the maintenance number.  In a matter of minutes, Security was in our apartment doing an assessment of the situation.   After determining that the leak was a condensate drain issue Security called in the duty maintenance man and he was here in less than 20 minutes!

Mean while, Security showed up with a shop vacuum and began cleaning up the water!  Our Security folks are wonderful people that are our life lines.  If someone signals a medical emergency,  Security is there.  If there is an after hours maintenance issue, Security personnel do the preliminary troubleshooting.  Many times they solve the issue, immediately.  Even if your car has a dead battery, Security comes to the rescue.  All of this, while making security rounds, throughout the community.  Again, they are our life lines!!

Back to the leak.  The maintenance man, Mark, discovered the problem in less that 15 minutes and had it repaired in less that 30 minutes.  Then, he and the Security person tested to make sure the condensate drain was working correctly and cleaned up after themselves.

Why do we choose to live in a Continuing Care Retirement Community like Azalea Trace?  Because Continuing Care not only means all the medical possibilities are covered and provided for, but the emergencies and daily maintenance issues are dealt with.  If we owned a home, we might still be waiting for a plumber or AC&R technician.  Or, I could crawl up in the attic and try to find the issue. Oh, wait, I am not allowed on ladders anymore.

Today just cemented in my mind that we did the right thing.  Thanks Azalea!