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Two Worlds

We sat together in the
waiting room of the Memory Center in Arkansas in April 2012.  I
remember thinking of the 61 years Ed and I have been together. The
last ten years were most comfortable in that there were no changes in
our lives. When one of our ministers commented in a Bible Study that
if things are too easy, and you don’t experience challenges and
temptations, let it be a warning to you. I remembered all the
praises I gave God for the tranquility of our lives together. One
night, as I turned over and just before sleep claimed me, I gave God
praise for undisturbed night of sleep ahead of me. What had the team
of doctors found when they tested/questioned and probed my dear
husband. What would happen when we knew the truth? What is the
truth? I remembered all the instances in the past few years when
questions arose in my mind but were tamped down and covered up.
Surely there would be no changes in our life as we rocked into our
old-age life.


My trembling legs carried
me into a small room, where I was to meet with the doctor alone.
What would I hear? The room had comfortable furniture. Paintings of
serene landscapes hung on the walls. And then the doctor entered.
He began talking. Part of me hovered over me waiting for my reaction
to the words – “Your husband has Lewy Body Dementia. He will
never get better, he will only get worse.” (Lewy Body Dementia is
Parkinson-like dementia that manifests itself in a shuffling walk,
paranoia and hallucinations. LBD patient will have lucid days and
confused days.)



There it was, the
elephant in the room had been described. What changes would there
be? The doctor said I was not to leave him alone for more than
several hours. Make sure he does not fall. Your doctor will
prescribe two medications, Aricept and Namenda, which will slow down
the symptoms, such as paranoia and hallucinations.



We had talked before
about moving near one of our dear children, and we chose Timothy, our
third son. We emailed Tim and told him what we were thinking. He
immediately went into full activity mode, making a visit…using a
software program for goal setting and a time line. As he went
through the house pointing out things we could not take in the name
of down-sizing, it slowly became a reality. My 38 year world in
Rogers would be dismantled before my eyes.




The plan became a reality
as I planned and prepared to move. Several years ago Ed had
relinquished the check book and tax preparation. After Ed drove home
from church alone, a scary drive, he gave me the keys to the car.
Lowe’s boxes and tape flooded the house. We could not have made the
move without the able help and encouragement of our church family in
Rogers, and all of our children – Dan & Linda, Paul &
Carolyn, Tim & Karen and Anna and her daughter Jenny. Packing,
giving away and trashing the rest became my life for four or five
months. Our realtor, Mike Begneaud, went the extra mile to make sure
our house sold – and our first estimate of moving in October was
changed to September.




Moving Day came. We had
three children and one grandchild for our moving day, plus several of
our RCC family. Our belongings were packed on the U-Haul truck that
Paul drove for more than 500 miles (9 hours). Driving away from our
home in Rogers was not difficult but seemed unreal – slow motion as
I watched familiar places become unfamiliar. When, if ever, would I
see the town I learned to love filled with people that I loved. Ed
seemed to be at peace, doing whatever we asked. We stopped for the
night 4 hours away. The next afternoon we arrived in Champaign, IL,
September 22nd. Our oldest son, Dan and his wife Linda
joined Tim, who drove us all the way from Rogers, and his wife,
Karen. The small house on a quiet street, Tim and Karen had chosen,
was filled with comings and goings as furniture and boxes found their
way into their places with further help of church family from Windsor
Road Christian Church. On Monday our family left and we settled and
settled and settled ‘in‘ for several months.



Ed and I are in two
worlds. My world is making a home here and Ed is bewildered – each
day begins anew. What had happened to his big back yard? Why were we
in Illinois? It is cold here. The ‘sun-downing’ began with these
questions: When are we packing up to go back south? Who is
looking after our house in Rogers? Where is my pickup? Don’t you
think we ought to pack up and go back home now? We have been here
long enough.




As his caretaker, I
didn’t take his questions well. After time, I learned to speak
calmly, patiently and answer with love. When I read some advice
online one day that helped immensely. The advice? Give lots of hugs
and fall in love with an ever-changing spouse of 61 years. He is in
a moderate stage of LBD, and I know there are possibly four or five
years of ever-changing progression of this disease.




One day while answering
his questions about why we are here, I answered with laughter, “We
are on our “second honeymoon.” This answer delighted him and he
laughed, too. He began to tease me and delight in ‘catching’ me with
his ever present humor. I began showing him funny videos on the iPad
of children and other antics. I read headlines to him that are
funny. On Thursday’s the newspaper (we take so he knows what day it
is), there are humorous jokes. Last week – On a child’s Superman
costume: Wearing of this garment does not enable you to fly!
Another
blessing are the emails our children send daily. Ed reads the
printed emails from family over and over, often with chuckle or two.
The squirrels, geese, birds and rabbit that come to visit are fun to
watch. We make up stories about their antics.



The bridge between our
two worlds, one of confusion and bewilderment and the other in
reality of living, is humor, faith and love. As I contemplate our two
worlds and stepping from one to the other, I see a relationship
between the two other worlds – the spiritual and the physical.
Though we live in the world, we do not live of the world. It is so
easy to be pulled by the world, and soon that is all we see – Luke
16:13 – “No one can serve two masters. Either you will hate the one
and love the other, or you will be devoted to the one and despise the
other. You cannot serve both God and money.”



A new word was coined by
our pastor – performancism, when we think following God our
Father by what we do is in our power alone. The betrayal of Christ
by Peter underlines the fallacy of self-will and determination. We
have forgotten Grace. The motto of performancism is to work
harder and do more. We over-estimate our abilities and leave out the
only power which achieves, not our will — but His. Forgetting to
trust and believe our Lord leads to Spiritual Dementia – and
we become confused, bewildered and lost. Humbling ourselves in
seeing that we need the power that is ours in Jesus Christ is the
first step toward spiritual maturity. Growth in Christ is through
Him, for Him and by Him.



I needed this, for my
first thought in learning about our new life together was my usual –
How hard could it be? Performancism? I realized that only
through my trust in God can I take care of my dear husband in his
journey through this maze of confusion he must walk in. I give Him
praise for orchestrating the move and the peace I felt during the
process. So I learn more about LBD, and put my hand in His to lead
and guide me. I don’t know how long God will give me strength to
care for Ed, but I pray that it is as long as Ed needs me.



• Trust in the Lord with
all your heart and lean not on your own understanding; in all your
ways submit to him, and he will make your paths straight
.
Proverbs 3:5-6



• But I trust in your
unfailing love; my heart rejoices in your salvation
. Psalm 13:5



• You will keep in
perfect peace those whose minds are steadfast, because they trust in
you.
Isaiah 26:3



• Love does not delight
in evil but rejoices with the truth. It always protects, always
trusts, always hopes, always perseveres
. I Corinthians 13:6-7



http://www.alzheimersreadingroom.com/
http://www.alz.org

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