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....