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.