Behavioral Changes

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.

Horsin’ Around

Dad held a variety of jobs over the years, however the majority of his working career was spent managing an Agway feed and grain store. In addition to servicing the local farmers, the store also operated its own working farm. They had cows, chickens, goats, sheep, ducks – you name it, even a burro! Dad and I have always shared a love for animals. He would frequently let me wander through the barns, visiting the wonderful menagerie of creatures. As my interest in horses grew, he would often spend time watching me ride. Even in his advanced years, he continued to enjoy being around the barns and remained keenly aware of staying a smart distance away from the big animals. And after moving up here to NY State, Dad quickly became a regular at my current stable.

On this particular visit, I settled Dad into a chair in the riding arena and left him to chat with some friends while I got ready. He was always a good conversationalist and enjoyed sharing stories with everyone. When I came back I could see that he was talking with Julie, who had somewhat of a perplexed look on her face. After a few minutes of additional banter and some laughter, they finished their conversation. It wasn’t until days later however, that Julie shared the details of their discussion with me;
“Your Dad is so nice, I always enjoy our conversations!”
“Oh yeh, what were you guys talking about? I could see you looked a little confused.”

Apparently, Dad had struck up a conversation about the war (?) and commented to Julie that; “her people had recently entered the fray.” When she looked puzzled, he added; “Mexico. You’re Mexican right? I thought everyone who worked here was.”

At this point in his LBD progression, it was difficult to ascertain whether his dialogue debacle was more a factor of the dementia or his impaired vision. I’m guessing it was probably a combination of both, however Dad quickly realized his blunder as Julie (a well-respected area attorney) proceeded to gracefully tease him about his mix up. Dad was never prejudiced or discriminatory throughout his lifetime, however we had started to experience a few occurrences after his diagnosis that might have led someone to believe otherwise. He would occasionally come out with a remark that could easily be considered inappropriate or offensive. When this happened, I often wondered if the disease had somehow taken away his familiar character and/or the ability to filter out this type of commentary. Atypical of Dad’s usual demeanor, the progression of his LBD was both upsetting and interesting to see. I knew if he was truly aware of these changes, he would be more than mortified by his conduct.

Luckily, Julie’s lighthearted nature took the conversation in easy stride and they both laughed off his mistake together. Looking back I’m sure he was very embarrassed, but in Dad style he was always a good sport about things. Julie still smiles and laughs whenever she retells the story.

Halitosis

We were about a year into Dad’s move and life at the Home was going well. There were days in the beginning that we almost felt as if Dad didn’t belong there, that perhaps he could/should have been living in his own home, leading a fully independent life. Then something would happen that would snap us back to the reality of his LBD. This time it was halitosis.

It was Saturday and I had stopped by the Home to pick him up mid-morning to run our usual errands. The weather was beautiful and we had the whole day ahead of us. When I arrived at his room, he was just finishing up his post-breakfast, morning routine. I looked around his bathroom to see if he needed any toiletries while we were out. Everything seemed to be in order; toothpaste, shampoo, soap, razors – check. Even the prescription steroid cream that the staff applied to sooth his itchy skin spots that the daily memory patches left behind was neatly organized in his medicine cabinet. Ready to go, we started to head out the door. That’s when he told me that his mouth hurt. I asked;

“Did you burn your mouth on some soup or something?”

“No, I don’t think so…”

Hmm I thought, he probably just burned his mouth on something hot or perhaps abraded it on something dry and scratchy and forgot. As his dementia started to progress a bit, I was beginning to brush off some of the (erroneous) things that Dad had begun to point out or talk about and quickly dismissed the remark, thinking it would probably subside or be forgotten, as would often happen with such topics as the day went along.

Dad climbed into the car, put his seatbelt on and we were off. It wasn’t until several minutes later that I could smell this horrific odor. As I continued driving I noticed that the smell got worse, especially when Dad was talking. It was so atrocious, I had to immediately put the windows down to air out the car – I’m talking ‘knock you over with a feather’ potent. It couldn’t possibly be his breath I thought, Dad never had bad breath that I could remember. Whatever it was though, it was FOUL. We arrived at our first stop and I was now sure that the odor was his breath. I asked him to open his mouth and that’s when I could see the little white pustules on top of his tongue.

“What the heck is that?!” I exclaimed.

“Is what?” he asked, as I turned my nose in the opposite direction to lessen my exposure to the offensive smell.

“I think you have some kind of infection on your tongue or something, maybe we should have you gargle with some warm salt water when we get back.”

As soon as we got back to our house, I prepared some warm salt water and had Dad gargle. He indicated that his mouth felt better, so I asked the staff at the Home to continue the gargles for the next day or so. However by day-2, his mouth looked no better and I knew it was time to see the doctor.

“What do you think it is?”

“Looks (and smells) like a fungal infection to me”

“How the heck would Dad have ended up with an oral fungal infection?

“I have absolutely no idea.”

“Dad – any ideas?

“No honey, I don’t.”

It took a couple of prescriptions to clear it up. We finally went with a cocktail of Maalox, nystatin and sucralfate that I had remembered making up for some radiation cancer patients struggling with mouth ulcerations. That finally seemed to do the trick and brought relief to poor Dad’s oral discomfort within the first couple of treatments – hooray, no more halitosis!

It wasn’t until several weeks later on another one of our daily adventures, that Dad brought the subject of his oral fungal infection back up;

“I think I know what happened to that thing with my mouth.”

“Really – what?”

“I think I was brushing my teeth with that cream the staff puts on my itchy skin”

Holy crap I thought, I bet he’s absolutely right! Despite some of the LBD effects we were starting to see in Dad, he still had the wherewithal to figure out what happened and he was spot on. The toothpaste and steroid cream tubes were both kept in his bathroom medicine cabinet and were similar sizes. Between his impaired eye sight (macular degeneration) and the dementia, he had probably been grabbing the wrong tube and brushing his teeth with the steroid cream for some time – yuck! Needless to say, we started to keep the cream in the medication room from that point forward. This was just one of the first of many things to come that confirmed our decision to place Dad in Assisted Living. Regardless of how great his good days were, I would hate to imagine what other kinds of trouble he might get himself into in a private home.

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.

Superman

The first time I noticed that something was amiss with Dad was about 12 years ago, right after I decided to move to New York State.  He was 75 then, still driving and working a part-time job at a local golf range.  I had started making frequent trips up to my new house prior to moving in and on this occasion, Dad decided to come with me to help out getting things ready.  I also had an appointment scheduled to see a customer, so he planned to paint one of the bedrooms while I was gone.

Dad was always busy doing all sorts of projects over the years.  He had tremendous focus and discipline and could build or fix just about anything.  As a kid I remember we always had the nicest lawn in the neighborhood.  Dad would spend hours fertilizing, weeding and meticulously cutting every blade of grass.  He would continuously work on manicuring the landscaping, which he had planted with a close landscaper, family friend back in the early 1960’s.  It wasn’t a particularly large property, but you could see the sense of pride that Dad had when neighbors or passerby’s commented on how lovely everything always looked.  So it wasn’t unusual to think that Dad would have the bedroom scrubbed down, caulked, primed and painted in the time it would take me to travel out to my appointment and back.

That morning I left the house early in the day after we had some breakfast together and got everything organized to paint.  Between the hour and a half drive each way and my customer appointment, I didn’t arrive back to the house until sometime in the late afternoon.  I was excited about seeing his progress and fully expected to see the room looking brilliant with the new color.  When I walked into the house I called out to him, but heard nothing.  Hmm I thought, maybe he’s upstairs?  I headed up the staircase and called out again – still nothing.  I peeked around the corner and arrived down in the bedroom.  What I saw surprised me, the walls had only received a white coat of primer.  Where was Dad?  After looking around further, I found him in the backyard wandering around picking up sticks.  He had started a small pile (there weren’t too many) and seemed somewhat vacant, for lack of a better description.  It was early spring and the weather was still a bit damp and chilly, but I thought maybe he was bored or simply getting tired. 

We continued on together that evening without anything else seeming out of the ordinary.  He never did fully explain what went on that day.  Maybe he was just having an off day or merely starting to show his age.  Or, perhaps we had just seen a glimpse of what was yet to come.  I suppose we will never know for sure, but I do wonder.  Back then and even today, I still think of Dad as that active, bright, magnificent guy who could do anything.  Maybe that’s why it’s so hard to accept his current situation and declining health.  He will always be my hero.