A Broken Heart

My dear, sweet husband, Richard, died yesterday (January 25, 2012) at 11:00am.  I could drive a truck through the hole in my heart.  I wonder why I am happy to see him free of the prison created by LBD and an overwhelming need to pull him back.  He is gone from my sight but never from my heart.  I love you, Richard.

Making the Most of Time

I have found what I believe will be a wonderful caregiver to come in 8 hours a day.  Another young woman will come between 8:00 and 9:00 pm to help me get RD into bed.  What a relief to finally have help in the house.  I was reaching my physical limit in transferring and moving RD.  With stress reduced in caring for him, I know the time ahead will be more focused and pleasant for both of us.  "Quality time" is a tired phrase but maybe it will have meaning for the two of us going forward.
Having someone in the house for 8 hours/day will be an adjustment but the positive outweighs the negative.  The real test won't be whether I can adjust, it will be whether RD can tolerate it.  He has always been a private, work alone, solitary man.  A social butterfly he is not.  LBD hasn't changed the core of him.  He prefers life as a twosome.

A friend is having a birthday tomorrow so I've baked a cake tonight.  Just doing routine things like that make me feel part of the 'real world'.  Because I have a new caregiver coming, I will even get to meet up with our group of friends to celebrate. Sounds wonderful and is making me smile.

A Long, Lonely Day

This one is difficult.   On January 8th, RD slept all day without waking.  This continued on into Monday, the 9th.  No food, no water.  I could not wake him.   Planning to call the doctor on Tuesday morning, I went to check on him and he was wide awake.  After cleaning and bathing, he was lively and energetic all day.  He ate like a horse and drank and drank and drank some more.  Late Tuesday evening he fell.  I called an ambulance because he was complaining of pain in his leg and hip.  Six hours later we found ourselves in a hospital room, not because anything was broken nor had he been injured but because his blood pressure was sky high.  It was to be a 48 observation admission.  At some point early Wednesday morning,  RD fell back into his deep sleep from which he could not be awakened. He stayed in a coma-like event until Thursday afternoon.  He was back into the deep sleep on Friday. There was no way to arouse him from this sleep.  A Home Health Care worker came to the house and panicked when seeing RD.  She called his doctor and described RD's condition, apparently, telling the doctor she didn't think RD would live through the weekend.  This triggered a major assessment of RD in the hospital.  His lab work looked great.  No problems with blood, UA, pulse, etc.  His blood pressure was remaining high so another observation.
RD was furious to find himself in the hospital again. He told me, "I was in a peaceful, happy coma and you made me wake up".  Friday evening, after the second admittance of the week, RD's primary care physician, called me into a tiny space to talk about RD's prognosis and condition.  He explained the signs of end-of-life and felt RD was meeting the criteria. He calmly told me it would be about 1 month.  I'm ashamed of my juvenile response - "You're kidding me!".
I've no doubt I'm in some state of denial.  I don't really believe the physician is right on this one.  What is shocking to them is more routine to me (long periods of sleep without waking). Agonizingly,  I have contacted Hospice and they have made their first visit. Time will reveal her plan soon enough.
Love to all who read this note.
Jo Ann

Change, Change, and One More Change

Things they are a changin. New and frightening changes.  Last Tuesday began as any day might.  Routine and familiar.  Around lunchtime we moved to the kitchen area and were sitting quietly, watching the street activity.  Suddenly, without provocation or cause, RD began to stomp on my foot.  He kicked me between the legs, grabbed my arms and twisted. The look on his face was something out of a movie scene.
The following day we are sitting in his doctor's office.  Tears roll down my cheeks as I describe my husband's behavior.  Why do I feel embarrassed and bewildered at the same time?  I have NO skills in managing this behavior and it came out of nowhere.  I don't know if it's a one time event or a new and permanent behavior.
RD's doctor listens (as he always does) and prescribes an antipsychotic medication.  Just hearing the word "antipsychotic" knocks me for a loop.  A very scary word, this is.
After we arrive home, I go to the computer in search of more information about the drug prescribed.  I don't feel comfortable with what I'm reading.  Information is not the same as knowledge.  I can get endless information from computer searches but I obviously lack "knowledge" about medications.  I am neither a pharmacist nor connected in any way to the medical field.  Recognizing the frustration a medical professional must feel when patients or family members try second guessing his/her decision, I approach the doctor with some dread.  Will he brush me off, get exasperated with the 'butting in"?  It turns out, he welcomes my questions and concerns and is willing to prescribe the medication I request.  I'm SO happy he's open to the possibility of sharing information and decision-making.
It's been a mere three days since I've started the new medication but already I can see changes and all are positive. This will sustain us until we need to make another change.
Been there,
P. Jo Ann.

All I Want For Christmas Is...

My step-son came to visit this weekend.  It is a 700 mile round trip for him so visiting for 24 hours is a 36 hour trip in reality.  It was wonderful to have him even though it was a short time.  My husband's eyes lit up when CC walked in.  His facial expression didn't need any support from spoken language. Message conveyed and completely understood.
I've been looking for a way to exercise - something I absolutely don't enjoy.  I once joined a fitness club with my husband and honestly, I wouldn't have gone more than the first month but for the prodding and determination of my husband.  He never wanted to miss our exercise routine. Thinking instead of doing is an unfortunate character flaw but this time I've got some new motivational, kick in the pants, do it kinds of incentives. Reading an article on the benefits of exercise, the author suggested returning to activities you loved as a child.  That was easy for me.  I loved bike riding, hide and seek in the dark, swimming, and roller skating.  Both the bicycling and roller skating struck a note and out came a flood of pleasant memories. As luck would have it, my step-son has worked on the retail end of bike sales and is also an accomplished bike mechanic.  He agreed to help me choose a bike and make sure it was fitted just right.  Lucky bit of fate having CC visit at the very time I decided to purchase a bike.  I've just got to get up my nerve to let go of the money.
I'm buying my own Christmas present from RD this year for obvious reasons. Maybe the bike will be the surprise.
RD has had 3 or 4 'good days'.  The unit of measure in this case is how many hallucinations, delusions, and capgras episodes he might experience in a day/night.  Although it has been extremely difficult to understand his speech this week, he has been more engaged, talkative and interested in the world around him.
Snow began falling yesterday round noon and continued until noon today - maybe 8-10 inches. The snow was accompanied by 25-35 mile per hour winds so snow drifts made driving nearly impossible.  We ventured out anyway to mail a Christmas gift, renew a dog license, and check out the snow totals around town.  RD was pointing to the high drifts and mountains of snow piled up after cleaning a parking lot here and there. He made several comments about the piles of snow around town.
Today's behavior has nothing to do with how tomorrow will go but I am VERY thankful for today.  Merry Christmas if you're listening.  All I want for Christmas is you (oh yes, and that bike).

"I Want To Go Home"!

Spoke too soon.  The plea to "go home" began again this evening.  I asked what home he wanted. To my surprise he said, "Oak Street".  He lived on Oak Street 40 years ago with his first wife.  Experience tells me to act on this desire rather than spending hours trying to redirect or talk him out of it.  Unfortunately, we had our first snow of the season today.  Although it wasn't much snow, it was a heavy, wet snow.  It left a thick slush on the road ways that began to freeze this evening.  But, undaunted, I bundled RD up with a coat and hood and seat belted him into the car.  Off we went for an evening ride around town.  Our first stop was Oak Street but he could not identify his house.  We drove past his old office building, the courthouse, the library, and familiar landmarks.  Eventually, I grew nervous driving around on roadways teetering between ice and slush.  When we got home, RD seemed happy and comfortable back in his real "home".  Wish I could figure out why "wanting to go home" is a nightly request.  Most of the time, the home he wants to return to is his childhood home but tonight was different.
He is in bed early this evening (8:00pm), giving me a blessed few hours alone. This time sweetens my life.  My sister asked if I had any particular wish for a Christmas gift this year.  Without a moment's hesitation, I told her the gift of time would be the best gift I could receive.  If someone could come and stay with RD while I went out alone - priceless. If you can move about with ease, the penned-up feelings associated with 24/7 care escape you.  There is really nothing else quite like it.  What I wouldn't give for a day alone, free to explore what I want, when I want...

A Few Good Days

Dreaded the news I knew was coming - Home Health Care terminated services today.  RD has improved his strength and endurance significantly after six week of exercise with home health care professionals.  The good news - he's doing much better.  The bad news - he will no longer have the support under him.  Neither will I.  This group of nurses were a godsend to me, solving a month-long battle with RD's heal wound in less than a week, helping me find innovative ways to increase RD's calorie intake in healthy ways, and listening, really listening to what worried me. Back on my own in this completely baffling world of Lewy Body.
Five days of calm and quiet. Aaaaahhhh!  RD hasn't engaged in the nightly ritual of wanting to go home, trying to leave the house, and agitation for nearly five nights.  What a wonderful relief to spend an evening watching TV and responding to an occasional misidentification of an object (tonight he thought his shirt was a fish).  How long will this last?  There is nothing about today that will predict tomorrow.
A long day indoors.  The weather has turned cold and blustery.  If forecasts hold, tomorrow will bring freezing rain, turning to snow in the afternoon.  This will be the first snow of the season if it shows up.  I'm already thinking of spring.  The older I get, the more I dread the winter cold. Wish I could move to a warm climate, putting my feet on a beach at will.  Okay, a little too much time to dream I suppose.

Aaaarrrrrgggg

Calling RD's doctor and talking things over with our home health care agency calmed the roiling water a bit for me.  The doctor prescribed a compounded form (topical cream) of Lorazepam.  Vigilance is required when considering neuroleptic medications for my husband.  Many drugs have adverse side effects in LBD patients.  Feels like walking a tight rope without a net.  RD's behavior can be agressive and angry, demanding and physical, especially in the evening, however, side effects of administering medications that may calm him down also worsen the Parkinsons symptoms and make him drowsy and lethargic, even to the point of not eating.  Seems like "damned if you do and damned if you don't" kind of dilemma.
On Tuesday, I rescheduled a hair cut I had canceled in October.  I decided to treat myself to a facial as well.  I hired an RN to stay with RD from 12:00-4:00pm that day and looked forward to the 'me' time and some pampering.  The stylist finished the haircut and styling and was beginning the facial  when my phone rang.  It was the nurse.  She told me RD was trying to hit her, telling her to get out and leave him alone, cursing and swearing at her and attempting to leave the house.  She could not quiet or calm him.  She couldn't restrain him without fear of causing him to fall. She requested I come home.  I did.  This is a 9 on the frustration scale.  Walking in the door, he practically ran to me yelling, "Who the hell is she?".  I calmly explained who she was (she had stayed with RD on at least 2 previous occasions) and that I was getting my hair cut and needed her to be home with him.  He nearly fell into my arms with a look of relief and exhaustion.  Who knows what was going through his mind or if the behavior was the result of fear and anxiety. I constantly guess and speculate on why he acts a certain way but trust me, I don't really know a damn thing about it.  Not only is this behavior so NOT like him, it is alien to his being.  I do not understand this disease or the havoc it wreaks on RD's mind and mine.

A Not So Good, Terrible, Horrible, Very Bad Day

Pacing, restless, agitated, and determined to "go home", RD was impossible to calm or comfort this evening.  Finally, in frustration and desperation, I put a jacket on him and off we went for a ride in the car,  looking for the 'home' of his childhood. When he wants to go home night after night, he is actually looking for the home of his youth.  Tonight I asked him if he wanted to go to the home he lived in when he was a child.  Without hesitation, he nodded yes and looked hopefully at me with a big smile on his face.  Night after night this same routine begins around 5:00pm.  I dread it more than anything because his demands to 'go home' are unrelenting and become more and more angry.  Tonight he got into the car and sat there for nearly an hour.   I kept going out to the car, opening the door and trying to persuade RD to return to the house.  My sweet talk produced even more anger and agitation.  I wish I knew how to handle this kind of situation.  I wish there was someone to talk to or to cry with.  My own sense of helplessness gets overwhelming sometimes.  While standing in the garage, freezing cold biting at my bare arms,  feelings of loneliness swept over me.  I am alone in this battle with Lewy Body Dementia and I already know LBD will win in the end.

Busy Day

Scheduled a "Care Assessment" for Thursday this week.  Home Health Care nurses nudged politely and then nudged again, pushing me forward (I definitely needed). I'll be curious to listen in to the assessment of Richard's needs.

A Reasonable Fall Day

Another perfect fall day, the last in fact, before wind and rain took the last of the leaves from the trees.  Walking can be exhausting for RD so the fact we could make it a sweet seat under the tree for a moment in the sun and pictures - priceless.  One week later and the sky is dark and gloomy.  A November rain (cold drizzle with intermittent downpours and sunless skies) dominated all activities today.
Don't know if you've been there yet but I hit a 'magic' age where colonoscopies are highly recommended every ten years.  I declined the first (age 50) but decided at 60 to pull my head out of the sand and get it done. Taking care of both my physical and mental health have moved front and center in my life.  Can't figure out how I would be a primary caregiver to my husband if I was battling anything more complex than a cold.  To tell you the truth, even a cold would be somewhat dangerous given RD's COPD and his susceptibility to infections, especially lung infections.  But I digress; back to the topic of colonoscopies... I scheduled a nurse to come in to care for RD while I made a pre-op doctor's visit.  My colonoscopy is scheduled for Nov. 30.  I'm neither scared nor anxious but will be happier when this is a distant memory and all is well with the world again. I've made no attempt to explain this to RD.  I'll cross the bridge to explanation a few days ahead of the procedure.  So glad I was able to find someone to take my place for the day so I don't worry about him for at least one day.  I'm going to be given demerol and valium so I won't remember much - sounds like a mini vacation to me!

Tranquil Water, Calm Current

My sister, Mary, came today for a 3 day visit.  The afternoon was filled with talk of two summer weddings ahead - both of her daughters will join hands with the men of their dreams.  New families will be formed and the cycle of life will begin again.  I love having my sister here.  She took pictures of RD and me outside under the locus tree.  She managed to capture some sweet, enduring moments beween us. I didn't want to wait even a few months to have the photos printed.  I'm always worried about what what next year will spring.  So much catching up to do which is a cross between family gossip and love spread around through family news. We've been discussing a newly announced pregnancy (nephew and wife married in June) and new jobs and new careers starting for all nieces and nephews in their 20s.  Gotta admit to feeling a bit odd at having to move over for a new generation of young people beginning families and careers.  Wasn't that just me a few years ago?  How did this transition begin so quickly?  I'm now "Poor Aunt Jo Ann and Uncle RD".  "Isn't it tragic to see Uncle RD like this and it's even worse on Poor Aunt Jo Ann"   Apparently, I'm seen through a new lens now.  I'm not the fun-loving aunt nor the sexy dresser nor the what will her hair look like the next time we see her kind of aunt.  Frankly, I don't see what they see.  I'm still the same girl inside I was 30 years ago.  Only the face and body has changed.  Not the soul nor who I am inside.  The outside isn't matching the inside but I'm thinking no one is taking time to explore me as a person much anymore.  It's natural to focus on your own life and the new, exciting events coming into view when you're 20 or 30 something.  I did the exact same thing.  Something is natural about the process unless you're the one aging then you kind of want to hit the rewind button and start play again.
My niece, EE, is one of the girls getting married next summer; planning a destination wedding to Mexico.  I've been worried about finding a place for RD to stay while I'm attending her wedding.  I can not imagine missing this milestone in her life.  She is my Godchild and the closest I will come to having a daughter.  She's my heart and the strings making it sing. Perhaps I shouldn't be worried eight months before the wedding but I've already checked out the local skilled nursing facilities and the chances of having a bed available for a week long stay seem unlikely if not impossible.  What to do, what to do?  I've reservations to make and flights to book without a clue as to his care for seven days.  Okay, the first suggestion if the most valid - take a deep breath and notice the tranquil, peaceful water all around you.  RD has had three wonderful days of "aliveness".  He's laughed and talked just a little.  He's eaten both healthier  and better than he''s eaten in weeks.  I should be grateful for the sweet courtesies in life.

Hitting the Rapids and Holding On Tight

Called the ambulance for the first time in my life.  RD developed a watery, gurgly breathing sound over the weekend.  Breathing was rapid and scary to hear.  This morning I could not get him to his feet.  The expression, "weak as a kitten" fit him perfectly.  After foolishly trying to lift him to his feet this morning, we both fell back onto the bed.  Oh yes, the agony of defeat and the call for help followed.

He was transported to the hospital emergency room where he received IV fluids, three blood draws, and a chest x-ray.  He did not have pneumonia so he was sent home about 3 hours later.  He has been asleep since arriving back home (2:00pm) and it's now 10:00pm.  How will he be able to sleep through the night? 

With these breathing problems also came new behaviors.  He has become angry and agressive towards me.  He clenched his fist and tried to take a swing at me saying I was trying to kill him.  He told the emergency room staff he didn't trust me because I was trying to kill him.  He tried to hit the young phlebotomist drawing blood.  I've never seen behavior like this.   It has been "normal" for him to pick up my hand and gently kiss it, mouthing the words "I love you".  How did we go from this to trying to hit me? 

This explains tonight's Title.  I feel like the water is roiling with jutting, dangerous rocks ahead.  Most are beneath the surface so no way to know when the whole boat will break apart after hitting a hidden boulder. Could be tomorrow or next week but they are out there. 

Down in Up and Down Days

Today wasn't a day to remember.  It ended worse than it began.  When days begin with delusion and confusion, I can be assured nothing good will follow.  Our day began routine enough.    I showered RD and washed his hair, dressed him, applied moisturizing cream, cut his hair, shaved him and generally pampered him from head to toe. He was looking and smelling pretty darn sweet.
By the end of the day, he was agitated, tried to take a swing at me and let me know in no uncertain terms I was trying to kill him.  How did we get from tender loving care to don't touch me or I'll kill you... all in a short 12 twelve hours?  

Living Inside

Going it alone, without help in the house, is getting a bit crazy.  When putting up a new curtain in the basement storeroom at midnight is exciting, when exhilaration comes from cleaning the storeroom and building new shelving, and when giddiness erupts at news my brother and his family will be stopping to see us  for a few minutes, I need to get out more!  Living inside Lewy Body dementia can mean the mundane tasks of life suddenly take on a holiday spirit.
Battling the sudden fainting is about to get me down. It is getting more and more difficult to walk him from one place to another.  It's difficult to get him onto the toilet and back up to a standing position.  Psychiatric problems (delusions, hallucinations, capgras syndrome), physical limitations caused by the Parkinsonian symptoms, cognitive loss, and less and less ability to make himself understood frustrates the heck out of me and I'm certain it's even worse for RD.
Last week RD seemed to live in a perpetual delusion but I was to blame.  I was working to clean the storeroom, build shelving, and restore organization from chaos but I made a lot of racket.  I was working in 10-15 minute sprints because  RD kept getting up to look for me.  Getting up quickly is a guaranteed drop in blood pressure followed by a guaranteed fainting episode anywhere from 30 seconds to one minute after rising.  Between running up and down the stairs to check on RD and the noise, RD began to believe the city had condemned the 'building' and were busy tearing it down.  He became obsessed with the idea we would have to move.  He was convinced the foundation was crumbling and the city was knocking down the support walls.  Nothing convinced him otherwise.   Imagine the frightening feeling when believing your "building" was being torn apart while you were sitting inside?!!1
Since I had no one to stay with RD, I took him to my own doctor's appointment. The wind was gusting up to 65 miles per hour.  I asked him to stay in the car while I got the wheelchair out of the trunk.  Because of the wind and banging trunk lid,  I did not hear RD get out of the car but the next thing I saw was RD on the asphalt.  He had fallen backwards.  I ended up speeding through my own appointment so I  could get him over to the walk-in clinic.  Nothing broken but his pride.  My head hurts just thinking about it again.
Today began and ended with the same delusion.  I'll be living here for a while.

Two Realities

I float between two realities. My husband’s Lewy Body dementia is up with the sun bringing delusions and hallucinations. Holding his hand, I attempt to reassure and speak to the emotions the alternative reality brings. I make my best guess at where he is.

From there, I return to laundry, cleaning, and deciding what we will have for dinner given his ever decreasing appetite and weight loss. There is home repair to get done – the roof needs replaced as well as guttering. The plants need watering. If I don’t get the oil changed in the car before long, I’ll regret the neglect.

Boom, I’m pulled back into his reality of civil war soldiers sitting on the sofa (foxhole) and firing rifles. His good friend, George, is there too.

Back and forth I go throughout the day and into the evening. Our dementia worlds are different but we share a bond only we understand. Thank you for writing about our lives. 

A Saturday in a Lewy Body Life

I'm posting way too late in the day.  It's nearly midnight and I'm exhausted so I'm going to plead sleep deprived malfunction if I don't make any sense.
My sister, Monica, stopped about 12:30pm today to check RD's heel.  There is a worrisome sore on RD's left foot.  Do I keep it open to the air or apply antibacterial ointment and cover with a sterile pad?  These are the days when having a nurse in the family is one of life's bonuses.  She told me I was doing just fine and shouldn't worry but still, I'm uneasy because the edges of the redness seem to be spreading. Another thing to add to my caregiving list.
We went for a wheelchair ride around the block today. We have somewhere between 5 and 10 "perfect" weather days per year.  This was one of those perfection moments.  I didn't want to miss a minute of it and I wanted RD to breath the fresh air, watch the squirrels chasing each other, look up and see the hawks gliding above us, and feel the soft warmth of early fall on his face.  To tell you the truth, after we got back home, I couldn't tell if he enjoyed anything about the short trip. No response was visible but it doesn't mean it wasn't there.
My neighbor at the end of the block is a published playwright.  She has a play opening in southern California this week and then a New York Off-Broadway opening in January.  She stopped to visit as she was walking her children around the block today.  She must be about 30 years my junior but I liked her from the moment I met her this summer.  If we were closer in age I'd welcome a chance to form a neighborhood friendship that lasts through time.
My next-door neighbor, KC, walked over with homemade muesli for our breakfast tomorrow and $10.00 worth of spring bulbs she planted in my backyard so I could look forward to new spring flowers.  How can one girl get so lucky? - she shares her nursing skills without payment, she's a master gardener, filling my house with flowers from April to the first freeze and brings a couple of Smirnoff Coolers over after my husband has gone to bed.  I desperately need 'girl talk' and cherish conversation on any subject as long as it's not centered around dementia.

Routine Days

I called my 50 year old brother today.  He was diagnosed with prostate cancer last week and has scheduled surgery.  He had me laughing so hard,  tears were rolling as he was telling me about the day of his biopsy. Laughter lifts my spirits in whatever form - even a prostate cancer story.  Brothers - got to love 'em.
I am always nervous about "running to the store" or "running to the post office" even though both are only blocks from our home.  Leaving RD alone is not a good idea. It takes only minutes for his blood pressure to drop upon standing and then fainting is inevitable.  However, I took that chance today in order to get a flu shot (free drive-thru flu shot clinic).  Our neighbor is a nurse and she's my stand-in when I make these quick runs here and there but she wasn't home this morning. My mom is another back-up but she had company this morning.  My sister is a nurse and lives about 5 blocks from my house but she was at church so I was out of options.  I made a run for it (a drive across town).  Fortunately, the line was short with no wait time at all.  I was back home in 15 minutes.  RD was fast asleep in his chair, safe and sound. Produces too much anxiety for both of us to make it worth it.
I was anxiously awaiting a scheduled appointment for RD with a new psychiatrist in town.  Our local medical center did a media blitz to advertise his areas of expertise.  I was excited to see one area of specialty was dementia - diagnosis and treatment. After an hour long appointment mid-week,  I learned the following: no known cure, no new treatments other than the medications my husband already takes, life is difficult for everyone living with or caring for someone with dementia, medications to control hallucinations, delusions and paranoia have severe side effects with dementia patients, and I need to take care of myself.  Wow!  Who knew!  Cancel future appointments.
Our roof was totaled in a hail storm some weeks ago.  This is the first time I've had to handled something like this on my own.  I called our insurance agent, she sent an adjuster, adjuster arrived and evaluated the damage, wrote a check on the spot and explained what I needed to do next.  A roofer came by to give me an estimate yesterday. We sealed the deal with a handshake.  My insurance company will give a 25% discount on the yearly premiums if I invest in a more expensive 50 year shingle.  Wish I had someone to talk this over with right now but I'm going to go it alone and figure I won't screw things up too much.  
While talking with the roofer and moving around the house, I didn't get the backyard gate shut tightly enough and the next thing I knew our dog had escaped, probably singing "Born Free".  He certainly ran for it.  With the help of a neighbor and a sweet boy on a bike, we managed to locate the escape artist in the next block, taunting a fenced dog.  Amazingly, I feel quite happy experiencing something that feels normal like looking for my dog.  I couldn't be upset with him when that excursion felt so good to me. 
Our dining room table looks out into the front yard and street. While eating lunch today,  RD told me there was a zebra in the street in front of our house and asked if I could see it too.  What to say, what to say.... after a long pause I admitted I could not see the zebra but took his hand and told him I wish I could because it was probably a wonderful animal to see so close up.  He smiled and agreed.

A Life Before Lewy Body continued....

My husband's intellect goes beyond the the ability to learn academic subjects.  If he meets you once, he will recognize you, know your name and remember details about your family -whether it's a chance meeting in WalMart years later or you were a classmate in law school 50 years ago.  He was my personal GPS before it was a device in a car, always knowing exactly what lane I needed to be in and what turn was coming up.  He owns collections of maps, loves all things related to geography and could identify any place on the earth if given longitude and latitude lines. His greatest contribution, however, is to history.  He spent 30+ years compiling a database on the Vietnam War Casualties. It now contains over a million pieces of data.  In 2002, the National Archives in Washington D.C. requested the database be deeded to the archives.  Two men joined RD in his research efforts in the mid-1990's. All agreed to deed their years of effort, naming the database after my husband.  It was and is his proudest moment. I still stand in awe of his devotion to a project spanning more than 30 years.
RD took me to a lecture series in 1975 featuring Gloria Steinem, American feminist, journalist, and social and political activist.  I thought myself a feminist before that evening but so many new ideas were exploding in my head as we left the lecture hall, I couldn't wait to talk to RD. I no longer remember how many nights we talked about the whole concept of feminism and the roll women played in society.  I recall discussions about our respective mothers, his perceptions of women in the '50s and the dramatic changes in the next decade.  Keeping my maiden name was important to me long before I met RD.  Not only was it okay with him; he encouraged it and supported me when the expected push-back came from family and some friends.
For many years after we met and married, a nightly conversation began when we got home from work around 5:30pm and ended after midnight.  We seldom turned on the television.  When friends would complain about the lack of communications with their spouses I was feeling smug and happy having found endless shared conversation. One evening might be explanations and discussions of Shiites and Sunni differences (30 years before our Iraq War) and the next night we would talk about our families, sharing our personal stories about growing up.  We never lacked for subject matter or topics to discuss.  He appreciated independent thought and challenges to his own thinking. He was the best storyteller and what a deep, mesmerizing voice!
I fell in love with the most interesting man in the world.

A Life Before Lewy Body

As I was standing at the sink washing dishes,  my mind was drifting here and there, finally stumbling upon this blog.  It occurs to me I had been spending quite some time describing Lewy Body dementia but nothing about RD before Lewy Body came to steal all that he is.
RD was the first born child of two sophisticated, intellectual, fascinating people.  His mother and father met in Boston, MA.  His father was graduating from Harvard in 1929 with a degree in business and banking, his mother completing a Master's degree in Sociology that same year. Unfortunately, a degree in business and banking was a cruel joke by October.
His father was finally offered a job in Kansas City, MO, working for the early version of Southwestern Bell Telephone. Of course they took the job offer.  The newlyweds were off to Kansas/Missouri. RD was born in 1932 in Kansas City in the middle of the Great Depression. When RD was six, his father was transferred 300 miles west to a small western Kansas prairie town.  RD would end up spending his entire life in this western Kansas town with the exception of time spent in college, the army, and law school.
RD got out of the army in 1955, married in 1956, had a daughter in 1957, and finished law school in 1959.  By 1960, this young family moved back to western Kansas and he began practicing law. A second daughter was born in 1962.  A son was born in 1968.  RD's marriage came apart shortly after the birth of his son.  He was divorced in July 1974.  The family he loved moved to Colorado two weeks later leaving him with the house, two chairs, two plates, two place settings of silverware, two glasses and a broken heart.
I met RD the summer of his divorce.  Having graduated from college in May, I began working in a bar as a bartendrix/waitress, hoping to find a teaching job as far away from this western Kansas town as possible but not really trying very hard to make it happen.   RD came into the bar with a group of men several times a week that summer.  I told a fellow waitress, "I know why his wife left him, he drives me crazy, always following me around talking and talking when I'm trying to work".  I did feel sorry for him, however.   He looked beat up and beat down, sorta sad and lonely.  Apparently, on the day his divorce was final, I put my hand on his shoulder and said how sorry I was.  I don't recall ever doing that but he has never forgotten it.
As luck would have it, I was offered a job one week before school started in a town 30 miles even further west.  What was I thinking?  I took it.
RD was 18 years older than I was, divorced with children, and totally NOT anyone I was interested in. I was a 24 year old kid enjoying dating and dreaming about a far more fascinating life than the one I was living.   Some time in September I ran into RD again in a bookstore.  We exchanged a few words about a book I was looking for  - the title, author, and maybe why I wanted to read it.  I don't remember much about this encounter except we were both focused on pleasantries and politeness and the bookstore didn't have the book in stock.  Two weeks later,  I was sitting in my apartment grading papers when RD rang my doorbell.  He was holding the book I wanted and asked me to join him for dinner at a local diner.  Still feeling a bit sorry for him and embarrassed to have him at my door, I said yes to his invitation.  That dinner led to this day.  We married in 1979 but haven't been apart since that September evening.
How did I go from "He drives me crazy" to loving him?  Somehow it was effortless. RD was/is brilliant.  He's an incredible storyteller, a reader of all things nonfiction, a lover of words, a geography genius, a researcher and lover of history and mesmerizing as a trial lawyer.  He represented people charged with everything from minor public intoxication to murder.  The local Bar Association has created something of a legion around him, loving to tell RD courtroom stories and repeating his infamous one liners.
More to follow....