Through a Sibling's Eyes...

                                                                        MY BROTHER

As a three year old I remember holding my daddy’s hand as we walked into The Clinic to see my baby brother. I remember Mrs. Adams pointing out to me the baby that was mine. They all looked alike to me, and I couldn’t understand how she knew that one was mine. I remember holding the screen door open as the ambulance attendants brought my mother and baby brother into our house on a stretcher. (How times have changed!) These are the first things I remember in my life.

During our growing up years I was the quiet, shy, reserved “first” child. My brother was the “baby” with a happy-go-lucky attitude.  When Mr. Baskin learned that we were brother and sister, he said he absolutely couldn’t believe it…I worried about everything and my Robert worried about nothing.

And then he grew up. He owned his own pharmacy and excelled beyond his home borders in that profession. He had a family. He was a community and church leader. He is such a compassionate person, even now. He told me one time that every day as he drove to work, he asked God to provide an opportunity for him to help someone that day.

What I see and hear now is heartbreaking! Both of our parents had dementia. Our daddy had vascular dementia, and our mother had Alzheimer’s. Neither of those horrible experiences prepared me for Lewy Body Dementia. Although Robert has struggled for over a year, since March of this year he has crashed physically. When I talk to him on the phone, his cognitive skills are so encouraging. But after just a few minutes of talking, his voice starts to fade, and he says, “I’ve got to go. I love you. Bye.”  He goes blank.

I have read that an Alzheimer’s patient has a downward decline in abilities whereas with Lewy Body Disease, it is a roller coaster ride…there are ups and downs in abilities throughout the disease. I pray for lots of  “up” days knowing that as the disease progresses the down days will come more often and last longer. But there is the possibility of  “up” days even then.  I hold on to that ray of hope.

God is faithful. He has seen our family through other painful times, and He takes this journey with us. I am thankful for the many friends, neighbors, and church family Robert and Judy have who are coming to their aid. I’m thankful for my own friends and church family who do not know my brother, but still express support, concern, and prayers to Gary and me.

~Charlotte

What is LBD? How do we see evidence of it?

LBD is a distinct, common form of dementia affecting 1.3 million Americans and is highly under-diagnosed.  LBD has overlapping symptoms with both Alzheimer's and Parkinson's disease, making diagnosis a challenge.  Early and accurate diagnosis is essential because LBD patients may react to certain medications differently than Alz. or Park. patients.

Diagnostic Criteria for LBD:

* Deficits in attention, executive dysfunction, and visuospatial ability (Dad has a hard time focusing on something or learning new things; he used to thrive on change, now change confuses him and makes him feel stressed out.)

* Parkinsonism (Dad has occasional tremors, almost constant rigid/shuffling gait, impaired balance, writing changes--even worse than his usual "Pharmacist handwriting!", and speech changes.  Dad went through a period for several months where his voice was weak, almost whisper-like.  He also had slurred speech for a while.  These are not as evident at this time, but they come and go)

* Fluctuating cognition, attention, and alertness (LBD can vary week to week, day to day, hour to hour.  Some days Dad seems perfectly normal other than his parkinsons symptoms.  On those days I ask with great hope, "Are you sure you have dementia?"  He answers yes.  I ask mom and she answers yes.  I asked his family doctor, and he answered yes.  I guess I just hold out hope on the good days that maybe he was just having a bad few days and it isn't really LBD.  But, then LBD rears its ugly head again and I am back to reality.)

* Visual Hallucinations, delusions, apathy

(Dad has had apathy for over a year.  This was one of the first symptoms.  I tell everyone it looked like MAJOR depression, except that he wasn't sad and he was taking antidepressants and seeing a counselor and it still wasn't helping.  One day the psychiatrist added a second antidepressant still thinking it was depression.  Kim called me from his work and told me to follow him to the doctor...he was on his way there and was acting very strange.  I burst into the doctor's office in tears.  I said, "My dad is dying before my eyes.  I think he has Alzheimer's."  This was 6-8 months before his diagnosis.  In fact, I had been asking dad for a year or so if HE thought he had early alzheimers and he always said no.  His memory wasn't too bad, but he wasn't "my dad."  I felt like the twinkle was gone from his eyes and something wasn't right.  Dad has very little interest in anything anymore.  He mainly sleeps (sometimes as much as 16-18 hours per day) and watches tv.  Other than that, he doesn't have the energy or desire for doing much else.  His affect is very flat, with little facial expression oftentimes.  This is a parkinsons symptom.

I thought Dad didn't have hallucinations, but they have appeared since his diagnosis.  One night he thought his legs were gold and spotted.  Mom assured him that they weren't and he was ok with that.  Then, this very morning, he pushed a bell he has for Mom to know when he needs something.  When she went to check on him he told her there was a baby under his covers and he was scared it would suffocate.  Mom assured him there wasn't a baby there.  He quickly snaps back to reality and can even laugh about the hallucination later.  I know there will come a time when these hallucinations will be hard for him to realize, and he will probably think they ARE real.)

*REM sleep behavior disorder

Dad has not had a REM sleep study, so I don't have much information on this.  I know LBD often act out their dreams violently.  Dad's dreams have been more vivid lately.  One night he fell out of bed during his sleep and had to get 6 stitches above his eye, a laceration on his cheek glued together, and broke his nose.  His doctor at Emory suspects this was due to violent acting out of dreams.

*Severe Sensitivity to Antipsychotic drugs

Thankfully, he has not had to take any of these.  However, there is a possibility that the antidepressant combination he was on triggered one of these catatonic-like states.  He improved once he came off the extra med.

*Autonomic Dysfunction

This is by far Dad's most debilitating symptom at this time.  This is what first sent him to the doctor a year or more ago when the counselor he was seeing for "depression" realized he wasn't dealing with depression but something medical instead. He has Orthostatic Hypotension.  This means that his blood pressure bottoms out when he stands, and it often takes several minutes to happen so he can be walking along and pass out with little warning.  It can also cause his supine (lying down) blood pressure to be extremely high.  We have raised the head of his bead, and he wears waist-high support hose daily to help with blood pressure problems.  Drinking lots of water helps, too.  The hose have been the best remedy, and he has the best sense of humor about them.  He jokes about wearing his "panty hose" when we go out to dinner.  They give him a nice tan.  They are tight and very difficult to get on.  Neither he nor Mom has the strength to put them on him, so his faithful friend Phil Lawson comes down every morning and puts them on him.  What dear, precious friends we are blessed with!  Autonomic dysfunction can also affect other areas of the "automatic" nervous system including heart rate, breathing, and sweating.  We pray we don't experience those problems.

The scariest symptom is the falling.  There is little warning when it happens, and even if you are nearby you simply can't catch 210 pounds of dead weight as it drops beside you.  I try to remind Dad to sit down in the floor if he gets dizzy, but he can't process that at the time it happens.  He thinks he can walk to the bed and lie down, but he doesn't make it there.  These falls are very scary for Mom.  Imagine hearing a loud thud and not knowing if your husband is ok.  When this happens, she has to call Mr. Phil or my husband, Jack, to go help him up.  He has broken toes and his nose from these falls.  He fell twice a few nights ago and was very banged up.  Then, he fell again last night.  He has an artificial left knee and feels like he has damaged it from falling.  His shoulder is also terribly sore.  He winces in pain when he stands up and move.  This breaks my heart beyond belief to witness.  Isn't it enough that he has all these other problems?  Why must he now be feeling so much pain???  

Please pray for protection from falls.  He is slowly realizing he needs to stand beside the bed for several minutes so he can lie down if he gets lightheaded.  I am so fearful of a broken bone or, worse, a head injury from a fall.  We covet your prayers in this area.

I know I have totally overwhelmed you...feel free to ask questions!

I hate the "some days"

I HATE the "some days".

 

Yes, I said it.  I HATE the "some days".  The days when my daddy is not my daddy.  The days when I can't even look at his face because he's too sick to roll over in the bed to say hello to me.  The days when I say to my almost three year old son Sam, "hey, let's go wake PaPa up".  And Sam says "yeah!".  The days when I open his bedroom door and Sam says "wake up PaPa", and there's no response.  The days when I tap him on the back and ask him if he's alright.  The days that the only response I get is "I'm having a bad day".  I HATE the "some days".  Those are the days that I plead with God to give me my daddy back.

~Kelli

Today is a "Some Day"

I told you there are three kinds of days in our family right now:  a few great days, mostly good days, and those "some days" when my Dad is just a shell of who he was.

I sit here at his laptop typing this...in the midst of one of those "some days."  I came to help him with some important paperwork we have been promising each other we would complete for about a month now.  But he never feels up to it.  I was hoping today was the day, but it isn't to be.  Dad just got up at 3 p.m. for the first time today, ate a sandwich, chips, grapes, and his favorite (Blue Bell Strawberry and Homemade Vanilla ice cream), then immediately went back to bed.  He probably won't get up again til tomorrow.  He seems to be sleeping his life away and it isn't his fault.  He isn't depressed.  His brain just needs extra rest because it is sick.

That's what I have to tell my daughter, Morgan, who will be five in a few short weeks.  Papa's brain is sick.  She prays for God to heal his brain, and oh how I hope those prayers are answered.  We are a family that believes in prayer and that Jesus still heals.  Don't think that just because we have accepted LBD as his current diagnosis that we have accepted it as his death sentence.  Our God is still in the business of healing and until each of our final breaths, we will pray and believe for healing each day.  My little Morgan reminds me that Papa's brain CAN be healed.

I'm blessed that Morgan has some good memories of a healthy Papa, too.  My heart breaks when I think of my sister's 33 month old son and my brother's 11 month old daughter who may never know or remember a healthy Papa.  It just doesn't seem fair for a 64 year old man to be robbed of enjoying his grandchildren.  Or for his grandchildren to be robbed of him.

On those "some days" like today, Dad gets out of bed looking confused and scared...like a little boy who is lost.  I ask him how he feels and he says, "blank."  I say, "Do you feel confused?"  

"No, I just feel blank."

Then, he shuffles with stooped shoulders and unsteady gait to the front of the house for his meal, checks the mail at the box, and gets back in bed.  Lewy Body Disease combines symptoms of both Alzheimers and Parkinsons.  It's like a double whammy...takes away your mind and body all in one fell swoop.  The shuffling is one of the Parkinsonism symptoms. 

Behind every rain is a rainbow...somewhere.  You may not see it right away, you may have to look for it.  But it's there.  It's God's promise.  Behind every "some day" is a better day.  It will come soon.  Chin up.  Dad will be better tomorrow.

~Ashley

Happy Anniversary!

Dear Robert,

Today, August 16, 2012, we celebrate our 42nd  anniversary.  Little did we realize that beautiful Sunday afternoon what life would be like for us.  At 20 and 23 years of age, how could we?  Just like others, our lives have been full of blessings and challenges.

You are an amazing man and a precious gift from God to me.  I believe that God prepared us for each other from the day we were conceived.  I cannot imagine where I would be right now without you.

I call you "my blessing", and I mean that with all my heart and soul.  Even through the beginnings of our journey with Lewy Body Disease, you continue to bless our family with your amazing attitude.  You say all the time that "it is what it is."  You never question why this happened to you.  Last night I heard you tell a friend on the phone, "God is in control, and I am at peace."

During this journey others will learn a lot about Lewy Body Disease, our family journey, and hopefully they will receive their own blessing along the way.  May God grant us (your family and our many friends) that same peace that "my blessing" has.

With all my Love to "My Blessing",

Judy (Your Bride)



This is My Dad's Story

A few months ago, confronted with the knowledge that he may be facing Frontotemporal Degeneration/dementia, my 64 year old Dad looked at me and said, “I have a job for you if you can stomach it.  I want you to document this process so you can write a book one day that will help others.”

I have always loved writing.  Writing is cathartic for me.  My dad knows this.  What a blessing to be given this task.

I wasn’t the least bit surprised by Dad’s wish.  He has always been one of the most giving, selfless people I’ve ever known.  Yes, he could be a bear at times…just ask his former employees!  But under the occasional grizzly bear exterior lies a teddy bear with the biggest heart you ever saw.  For nearly 40 years, Dad owned his own pharmacy.  I can’t even begin to count the lives he touched through his business.  He went back at midnight for sick babies (even of families who weren’t his customers).  He held tickets for people who needed their medicine right away but couldn’t pay at that time.  If the pharmacy was out of a medication, he tracked it down at another pharmacy in town and sent one of us to get it so his customer would get their medication that day…usually within 10-15 minutes.  I had the privilege of working with Dad for the last 6 years of the pharmacy.  I wouldn’t trade those days with him for anything!  

Every December he and I would sit down and discuss who we wanted to bless that Christmas.  Some of our customers had run up quite a drug bill and just couldn’t make ends meet and pay their bill.  Dad and I would together choose someone deserving, and we would give that person a note that said something like, 

“Your account balance is now $0.00.  Your debt has been forgiven just as Jesus has forgiven us our debts.  Merry Christmas!”  There was never a dry eye from the recipient of one of those notes.

You see, that’s the kind of person my Dad is.  He gives wholeheartedly. 

Dad has served on numerous boards and commissions in our community and church.  In 2008-2009 he was even President of the Georgia Pharmacy Association—the highlight of his career and some of the best days of his life.

Sometimes I feel like the “glory days” are over.  I feel sad and hopeless since Dad was diagnosed in June 2012, not with FTD as we first suspected, but with LBD (Lewy Body Disease).  The teddy bear in a grizzly bear body is having his physical and mental health snatched right out from under his feet.  We don’t know how long or short the process will be.  We don’t know how painful it will be.  We don’t know what financial and physical resources will be needed in the future or how soon they will be needed.  What we do know is that a courageous, giving man of God who loves his family and his community is slowly turning into someone it’s hard to recognize on some days.  Most days are good, a few days are great, but those “some days” are devastating to watch.

This is a family effort, and Our first few blog posts will be in jumbled order.  We waited a few months to begin this blog because we needed to collect our thoughts.  We will try to use the next few posts to document Dad’s backstory, his diagnosis, and his recent months.  It is my family’s prayer that this blog will be a blessing to someone.  Whether you are a family member/caregiver, a patient with LBD or other dementia, or just someone who is going through a rough patch in life, it is our prayer that God will use the words He places in our hearts to speak to yours.

This is our Dad's story.  It is our honor to share it with you.

~Ashley

(LBD is a family journey...so each of us will be contributing to the blog at various points and sharing our thoughts, observations, hopes, and fears. My brother (Alex), sister (Kelli), Mom (Judy), Dad, and Aunt Charlotte (Dad's sister) will be the primary contributors.  I will indicate at the end of each post who the author of that post is.  We will also try to provide as much information about LBD as we can as well as research updates and news articles.)