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....

Floating on Your Back

After watching this youtube video -Difficulties in Diagnosing Lewy Body Dementia - pt 1
www.youtube.com , and some of the other videos in this series, I decided I have been floating on my back, going with the current and looking at life from a different perspective for some time now but I have definitely hit the rapids again.  I am hanging on for dear life right now, living next to my husband's delusions, disorientations, confusions, and hallucinations.  The delusions are not entirely new but suddenly very prominent and in my face.  For two weeks, coaxing, cajoling, explaining, going inside the delusion and going along with it and other times sharing the science behind delusions, always hoping to stop the insanity.  Nothing worked.  Finally, it occurred to me that his brain had no intention of giving up the world it created so I needed to stop trying to change his reality.
I am scheduling an appointment with a psychiatrist specializing in dementia for my husband ( but secretly, I am the patient hoping for information about living in this world). Unfortunately, I don't know what I want from this doctor.  Comfort I suppose.  And information about the world of hallucinations and delusions.  There is nothing peaceful or calm about this journey right now.  Maybe later when I've acclimated and grown accustom to the stranger that shows up more and more frequently.   This is far more difficult than dealing with the physical needs of my husband.  I've stopped gagging and choking and acting horrified at clean-up.  But this - wow, so hard.  There is no gagging at the odor or sight of delusions/hallucinations but the sadness of it all is indescribable.  Give me clean-up duty any day if my husband could stay in touch with reality.

Hallucination, delusion, confusion, Capgras syndrome (a friend, spouse, or close family member has been replaced by an identical-looking impostor) - today was wrapped in a tangled web so thick RDC could not escape and I could not find a way in to help him.  Sunset brings a worsening of Lewy Body's symptoms.  It's as if the Lewy Body thief waits until nightfall to pitter-patter, sneak, sneak into our home, robbing RD of communication and reason. Today the thief showed his face early in the day and stayed, causing havoc and wrecking our day together.  I've dreaded sunset for a long time but now I wonder if I will dread dawn as well.  
RDC thought I was his secretary of 20 years ago.  He asked how long before I would give birth. I couldn't help but laugh since I've been busy the last nine months all right but the effort has gone toward weight loss.  I've lost 30 pounds since December,  feeling quite proud of myself until today!  Okay, I'll keep working on the weight loss...
When delusion dominates the day,  we're doomed to get through the day and hope for something better tomorrow.  I'll be back to describe a Lewy Body Life as it continues. 

The Cross-Word Puzzle

Can it get any more difficult to decipher Lewy Body language?  Surprise! Surprise! YES!   This week tried both my patience and the limits of my ability to understand my husband's message. I met such puzzling phrases as, "The fartherest (his word) thing we had carried the railroad architecture" (part of a multiple day reference to railroads).   Probing over and over did nothing to bring me closer to meaning.  "Pay my grass"(comb my hair) was much easier because it was accompanied by hand gestures.  With no context to draw upon I'm still working on  "Denmark got beached by Brazil".
My neighbor, K.C., popped in with a fresh cantaloupe in her hand. R.D. greeted her saying, "Hurricanes are good and cool".  His eyes were fixed on the melon so I'm going with the meaning cantaloupes are good and cool.
I enjoyed the sincere question he posed, "Who won the adjustments on the wheel?" Once again it was out of the blue, unrelated to anything in our immediate environment or conversation.  After some frustrating (for the both of us) probes, I figured out he was asking me about my weight loss.  There is something rational in his question but I can't put my finger on it.
"I need someone to help me shine the connection on zero, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16. There's a connection to a socket" (he wants his razor).  I deciphered that one immediately so I'm beginning to wonder about my own mind.  How exactly does that make sense and why did I see the meaning so quickly?
In addition to more and more difficult language structures, R.D.'s behavior turned in a new direction - at least I haven't been here  before.  He asked me how long I'd been seeing the bartender, thought every female on TV was me and kept asking, "Is that you talking on the TV?", wanted to know where his mom and dad were, and constantly walks around the house looking for something but cannot tell me what.   He has gotten out of bed twice tonight because he wants to make an $1100. contribution to something as yet unknown to me.  It is one of those... I'll deal with this in the morning.
It has been a long, exhausting week but something tells me I'm in for more excitement in the week ahead!

Lewy Body Language (continued)

I'm neither a 'routine' or 'spontaneous' person but if left to my own devices I'd prefer not having a set schedule to follow.  A bit confining,  however, when living in a Lewy Body world, routine is an essential component of life.  The day begins with refreshing RD's skin (warm water and washcloth 'bath' in the bed, applying lotion, and topical medications where needed). Then dressing, walking to the living room, shaving him with an electric razor and combing his hair. This is followed with a short walk to the bathroom where he rinses his mouth with mouthwash and I put clean dentures in his mouth. Back to the chair where I prepare and administer breathing treatments and inhalers. Next, blood sugar and blood pressure checks. At last, we're ready for breakfast and morning medications.
This morning he said, "Calendar the back of the building". Don't ask me how but I knew he wanted me to go back to the bedroom and get his electric razor.  I usually bring it out to the living room with me and maybe he noticed I didn't have it this morning.
 Rough day from beginning to end.  I can never identify the exact 'beginning' of a change, just a general sense of a shift. This time I feel the very ground shifting under my feet.  RD is less and less sure of my name. A few days ago he ask my name and today he said, "You're a Jennings. I know that".  Over and Over today he asked to go home and nothing I said could convince him he was home.  Language usage was impossible to decipher no matter what I tried. I was mentally drained by the end of the day and could do little but cry while doing the dinner dishes.
Watching him melt away in front of me.  I am always reaching for his hands and holding them both at the same time, trying to hang on the whatever is left of him.  Today those beautiful blue eyes looked back at me with bewilderment and less and less recognition. Come back to me, come back to me.

Learning a Lewy Body Language

Posting on a regular basis seems to elude me.  I want desperately to capture the language I'm  hearing and record it but days pass and I never sit down to write.
This evening seems as good as any to begin again.  Pointing to his shoes, he said something that came out  mumbled and soft but I knew he wanted to get ready for bed.  Nothing clairvoyant on my part but given the hour and nightly routine, very easy to figure out.  Much of my husband's comments, sentence fragments, reactions and responses would seem completely bizarre to any visitor.  If you listened, likely you would imagine him completely insane or senile for lack of a better term. For example, as I removed his shoes he said, "that thing in a box that you throw in the river".  My first move is to kneel close to his chair and make eye contact with him.  I tell him I cannot understand what he's trying to tell me so I need more help.  He tries again," one, two, one two"  I ask if he wants a suppository.  He brightens and smiles, "close".  I try again. "Do you want a stool softener?".  BIG SMILE.  "YES".
How do I get from there to stool softener?  It begins as a belief his words are neither random nor 'crazy'.  There is meaning in every utterance. The meaning is not random, in fact, it's quite rational and conveys a true need - a stool softener  but the words seem far afield.  But maybe the words are not totally random. He has used references to water before when needing a suppository or stool softener.  He needs fiber to help with the ever present battle against constipation so I refer to it as "Fiber One", a cereal I commonly prepare for him.  The second attempt to help me is 'One two, one two' (Fiber One) which ultimately I put together with the reference to water (river) and figured out what he was saying.  I have hundreds of these utterance to decipher every day.  It is mentally exhausting but I cannot ignore his attempts to communicate because I want desperately to talk with him and to reassure him that I can figure out what he's saying to me.
I plan to use this blog to capture his unusual language patterns.  If for no reason at all except to keep them forever in written form.  Because the vocabulary and syntax are unusual and seemingly random, I have a difficult time remembering them at all once I have decoded the meaning.  This can be a place to capture the speech and partial fragments of structure. Love you dear husband.