Hallucinations

Murphy’s Law – Episode #1

Of all the times that things seem to go awry, it always seems they do at the least convenient times and especially when my husband James and I are out of town. Why should we be any different right?

One of Dad’s first significant Lewy Body Dementia events happened about a year or so after his diagnosis. James and I had planned a trip to Mexico a year earlier and I grew skeptical about going as the departure date grew closer. Dad had been on his own for a few days here and there when his girlfriend was out of town. However, I was always within daily earshot and a swift 3-hour drive to rescue him if necessary. Additionally as “Murphy” would have it, his girlfriend also had plans to be out of town that same week we were to be away. So it was with great reluctance that I let Dad talk me into leaving for our trip down south.

Laughing, “I’ll be just fine Jennifer. You and James get out of this wretched winter for a few days and we’ll talk to you when you get back.”

“Are you sure Dad? What if something happens?”

“Nothing is going to happen. I’m perfectly capable of taking care of myself for a few days. I have everything I need right here, I don’t even need to go out. Have a good time honey, can’t wait to hear all about it!”

The phone rang in our hotel room at about 7am. James and I just looked at one another as if to ask; “who the heck could be calling so early, did you call for room service?” I rolled over and picked up the phone;

“Hello?”

“Hi Jennifer it’s Liz. I’m so sorry to bother you on your first day of vacation!”

Liz was my mother’s younger sister who lived within an hour driving time to Dad’s. In addition to several other people, I had put Liz on alert in case anything came up while we were away.

“No problem, is everything ok?

“Your Dad is fine, but he’s in the hospital.”

“Really? What happened?!”

“Well, apparently he thought there were people coming into the condo through the fireplace and called 9-1-1 when they wouldn’t leave after he told them to. When the police arrived they could tell something just wasn’t right with him, so they took him to the emergency room to get checked out. The only person whose name he could remember was mine, so they called me.”

Holy crap I thought, of all times to have this happen and we’re thousands of miles away from home. How were we going to manage this?

“Liz, is he still there?”

“Yes, but they would like to discharge him if at all possible. I can take him with me, but I’ve got to work tomorrow so we’ll need some additional help.”

After a few (international) phone calls, I lined up several family members and friends to stay with Dad for the remainder of the week. Wow I thought, I should have listened to my intuition instead of being talked into leaving him home alone. Although he had managed previously, it seemed we had just crossed over into the next chapter of our life with LBD.

Dr. Jekyll and Mr. Hyde

Nearly 6-months after moving up to live near us and after a disastrous 3-month trial period living in a local private home “care” arrangement (another story for another post…), Dad was living in a nearby Assisted Living Facility. The facility was lovely, the staff members were fabulous and Dad felt very much at home there. It was handsomely decorated in his favorite color schemes. As we made our way back to his apartment after outings, he would often imagine us walking down the corridor of a grand cruise ship, on the way back to his “berth”. He had a small, studio-type apartment that we had set up with all of his favorite creature comforts and belongings. It even had a kitchenette area with a sink, dorm-sized refrigerator and cabinets for his abundant snack cache. He would take morning walks around the building after breakfast, join in on all of the daily activities and get together with me numerous times during the week. We were about a year and a half into his LBD diagnosis and life was going along pretty well. All things considered, Dad seemed happy.

Periodically however, things would run amuck – especially when Dad became sick. A bronchial or urinary tract infection has the ability to turn this otherwise wonderfully warm, congenial person into a weapon-wielding man on a mission. On this particular trip to see Dad, I was presented with his tool box when I made my regular pit stop at the medication room on the way down to his place.
The nurse gently smiled as she held out the box and with a look of apology said; “we had to confiscate this last night, you should probably take it home.”
“What happened?”
“He cut the cord off of his lamp.”
“Really, did he or anyone or anything get hurt?!”
“No, but he hasn’t been himself lately. So for his safety and others we think he shouldn’t have these tools anymore.”

As I made my way down to his room, I knocked on the door and heard the familiar; “Yell-ow!” greeting. When I asked him what happened to his lamp, he told me that it needed fixing and showed me the piece of cord that he had neatly cut off. Nothing I could see appeared to have been damaged or in need of repair. I asked; “did you unplug it before you cut it?” He quietly paused, looked up at me and flatly said; “of course”, as if to imply I was an idiot for even asking. Tool box and wounded lamp in car, we made our way out the driveway to enjoy a few hours in the day. The morning was cut short however, as it turned out that Dad had the beginning of a new cold and started to feel lousy as our travels continued. Hmm, that explains things.

Several months later on another occasion, I received a phone call from one of the nurses at the Home. This time they were calling to alert me that they suspected something was brewing with Dad because he was agitatedly walking around the hallways brandishing his television remote control “guns”. Apparently, he thought there were some thieves in the building taking facility property. Luckily his tools were no longer available at this point, so the “weapons” were far less dangerous.

This was the first time I had experienced the paranoia that often comes with dementia in the elderly. I had always heard stories, but had yet to see this happen with Dad until now. This was the first time of many occurrences to come that would require me to drive over and take him out of the environment to redirect him. Usually just taking him out for a bite to eat or an ice cream does the job. I suppose in Dad’s case, food soothes the savage beast inside! A day or so later after sending a urine specimen out for analysis, we learned that Dad had a urinary tract infection. Hmm what a surprise, I was starting to catch on.

Gettin’ Squirrelly

Not unlike many other times that happen while we’re out running errands together, Dad “saw” an animal from the car – this time is was a squirrel.  If you are familiar with LBD or know someone who has it, you are probably aware of the very vividly-real hallucinations that they frequently have.  Dad’s hallucinations typically involve small domestic animals, work crews and people on occasion.  There is one place on our usual course of travel that he often sees ‘situations’, such as a plane stuck up in a tree or a ship that has been stranded on land.  He can describe the scenes with great detail including colors, markings, etc..  It’s pretty wild.

Over the course of the last several years after having nearly strangled the two of us by our seat belts while inadvertently locking up the car brakes to avoid hitting something Dad thinks he sees, I have gotten accustomed to disregarding his sudden shout outs about “the puppy crossing the road” or other creatures who have been “previously doomed” by traffic.  So on this particular drive, I just ignored his ongoing play by play about this squirrel. 

“Jennifer look, it’s running so fast!  I can’t believe it!  It’s running on top of that wall right alongside the car.  It’s keeping up with us!”

Well I have to say after a few minutes of this, it did start to peak my curiosity.  We had been driving along a quarry surrounded by a large stone wall that runs down along the roadside, so that much he had right.  I just had to look over.  What I saw wasn’t exactly a squirrel however, but a long brown centipede-like bug stuck to the outside of the passenger door window.  Positioned in the just the right spot and with perfect proportion, from Dad’s viewing angle (and horrific eye sight thanks to macular degeneration) the bug was easily mistaken for a squirrel running along the top of the wall.  The faster we drove, the faster it seemingly ran! 

As we approached the next intersection Dad exclaimed; “Look, now it’s in the middle of the intersection!  Oh no little squirrel, don’t get hit!”  Sure enough, as I peered through his window the bug was still affixed to the glass giving Dad the illusion that his little friend was now in imminent danger.  Thankfully as we continued driving across the intersection, a bank of trees then lined the roadside so that the creature appeared to have safely made it into the woods – big sigh of relief!  Luckily that one had a happy ending. “Others” however, have not been so fortunate 🙂