LBD

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.

Advertisements

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.

Ma Bell

One of the most exciting moments after Dad moved into Assisted Living was when he was able to start making his own calls again with a voice-activated telephone dialer.   We had set up phone service for him when he moved in, however unbeknownst to me he was unable to make calls.  It wasn’t until several months had gone by that I noticed I always called him, he never called me.  In fact, I honestly couldn’t remember the last time I had received a call from him. That was when I realized that in addition to his dementia, his eye sight had failed so badly due to macular degeneration that he was no longer able to see the over-sized key pad on his telephone to place calls.  And since Dad was always a very proud man, he never brought the problem to anyone’s attention.  Thanks to my husband’s suggestion, we started looking into voice-activated telephone dialers – who even knew such a thing existed?

After a couple of internet searches on sight-impaired products, I quickly found voice-activated telephone dialers.  It didn’t take long to find a model that received decent customer ratings and I ordered one immediately.  The device arrived within a week.  Both Dad and I were anxious to set it up and give it a whirl.  Set up was a cinch.  It only took a minute or so to plug the dialer in with his existing telephone equipment.  Then we had to “train” it to recognize his voice.  That was when the real work started…

“Ok Dad, when I say go – you say Jennifer”

“Jennifer?”

“No not now.  Wait until I give you the signal.  Ok go!”

“Jennifer?”

“Dad you have to say my name like a statement, not a question.  Otherwise the dialer won’t recognize it when you go to make a call.  Let’s try it again.  Ok, now – go!”

“You want me to say Jennifer?”

“Yes Dad, but say it normally, not like it’s a question.  Listen to how I say it both ways so you can hear the difference – ‘Jennifer’ vs. ‘Jennifer?’  Get it?

“Yes (pause), I get it”

“Ok, say it now!”

“Jennifer!”

“Excellent!  Let’s see if it works when you try to call me.  After you pick up the phone, you’re going to hear a voice recording that says ‘Name to dial please.’ Once you hear that, say my name.”

Dad picked up the receiver and waited.  I heard the recording finish and eagerly awaited Dad’s response.  Nothing.

“Did you hear the recording?”

“Yes”

“Then why didn’t you say the name?”

“What name?”

“My Name!”

I was starting to get frustrated, but needed to remain calm to avoid getting Dad flustered over our mission to set up the dialer.  This time he picked up the receiver, listened for the recording and softly said; “Jennifer.”  We waited hoping to hear the familiar sound of a phone dialing.  Instead, the recording simply repeated itself; ‘Name to dial please.’ He looked up at me with a blank expression.  Apparently, the voice-activation did not recognize the name, probably due to the subtle nuances between the way the name had been recorded and the way he had annunciated it while trying to “dial”.  We were back to square one, sigh…;

“Ok Dad, say my name again…”

After several more attempts to properly record the name, Dad gave it one last try.  He held the receiver to his ear, heard the automated recording ‘Name to dial please’ and said; “Jennifer” with just the right inflection that he used to record the name.  Within a couple of seconds we could hear the phone dialing.  I jumped up with my hands in the air as if the Bruins had just scored the winning Stanley Cup goal (Mom was a huge ice hockey fan)!

“You did it – it worked!!  My cell phone is ringing and I see your name!!”  I picked it up;

“Hello?”

“Hi” said Dad.

“You called me, the dialer works!”

Dad looked a bit bewildered, as we stood there side by side in his apartment having our conversation, but seemed satisfied that we had accomplished the task at hand.  I’m not sure if he was more pleased with the fact that we had made it work or just happy that his grueling dictation sessions were over.  Nonetheless, it was a major breakthrough in gaining back some of the independence that he had been slowly losing over time.

Several weeks later on our birthday (my husband and I have the same birthday), my phone rang early in the morning.  I could see that it was Dad and excitedly answered the call;

“Happy Birthday honey, same to James as well.”

“Wow Dad, you remembered our birthday AND you were able to call us!”

The remainder of the conversation trailed off a bit on whatever Dad had going through his LBD thoughts that day.  However, it was one of those triumphant moments that I will always remember. 

From that point forward the dialer became a way to gage Dad’s cognitive function. When he became more confused, he was unable to properly use the device.   So if I hadn’t gotten a call from him in a few days, I knew that he was going through a rough patch and that his dementia was progressing.  At one point I realized he hadn’t called me for a couple of weeks.  When I asked him about it, he told me that he had in fact been using the dialer, but kept getting someone else.   After some investigation, it was obvious that Dad had inadvertently reprogrammed the dialer while trying to “fix” it.  The unfortunate gentleman whom had been the receiver of Dad’s continuous calls was very irritated when we called to confirm the dialer wasn’t working appropriately.  However, he was very sympathetic and quite apologetic when I explained the situation.  I called the manufacturer promptly thereafter and obtained the necessary instructions to reset the device and set things straight again.

Within a year of having the dialer, Dad began to start calling at all hours of the night, leaving long lengthy messages about his “situation” and/or having to come pick him up from wherever he thought he was.  When these calls started to occur more frequently, I had to start leaving my phone outside of our bedroom to avoid being woken up in the middle of the night – especially during the work week.  Regardless of the fact that he was calling during the wee hours, I just didn’t have the heart to unplug the lifeline that both he and I had grown to depend on.  To this day, I have an abundant number of messages on my voice mail from Dad that would seem completely ordinary to anyone who was unaware of his LBD and the fact that they were left between the hours of 1am and 4am.

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.