LBD Progression

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.

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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.

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.

Good Days and Bad Days

Good Days and Bad Days

After 3 additional days, we got Dad back on a regular diet with regular liquids – hooray! And what a difference they seem to be making. He is more alert, more agreeable and noticeably more comfortable. In fact I think the hydration has helped gain some of his appetite back, as he has started to eat the provided hot meals and requesting some of his more usual favorites like hot dogs from his preferred local convenience store. Unfortunately, his physical therapy is not progressing as well as I would expect or like.

There are several factors that affect Dad’s physical therapy sessions. Some of these things include; having just eaten a good sized meal (he gets sleepy), sessions later in the day (sleepy again) and his mental status (often sleepy) – you get the idea. On his good days when he is brighter and alert, Dad is willing to get up out of the Geri-Chair (a large comfortable, recliner-like chair on wheels) and walk on his own. This especially happens when I am leaving after my visits and he wants to walk me out, as he previously always has. However on those days, it still requires some persuasion to get him to stand up and walk a few steps in therapy. On the not-so-good days, he doesn’t appear to respond to the therapist’s directives and requires effort from all of us, myself included, to get him up and on his feet. When this happens, he can barely stand up on his own and steps are out of the question.

In the meantime, my plans to get him back to the Home are on hold. Until Dad can help assist the aids with his transfers in and out of bed and to chairs, he is not a candidate for their Enhanced Care Unit. I have an appointment with the Rehab Center team next week to discuss his progress and I plan to get more feedback on their thoughts and insights. I am uncertain whether his recovery is just going to take more time given his recent surgery and LBD advancement or if we have reached the next stage of Dad’s disease state. Regardless, I’m giving him the benefit of the doubt and sticking with rehab for the time being in hopes he will soon rally.

The Inaugural Pedicure

The first time I ever trimmed Dad’s toe nails was when we moved him up here to be closer to us. He had just been discharged from a skilled nursing facility, after a hospitalization for pneumonia where he suffered a significant adverse drug reaction (another story for another post…). After our 3-hour drive home, I took his shoes off so that he could take a nap. I quickly noticed that his toe nails looked as if they had not been tended to for some time. So as a dutiful daughter, I decided to cut them. I thought, how bad could this be?

As I gently positioned his (somewhat sweaty and rather pungent) feet across my lap, I looked down and noticed that the nails on his left foot appeared to be yellow, thick and kind of spongy – most likely a fungal infection. They were gross quite honestly, but I was determined to get the job done. Starting with the non-infected side, I began clipping. One, two, three toes done – alright not bad, I’ve got this. As I finished with the right and moved to the left, things got a little tougher. The nails were definitely infected with something that made the job more difficult. I leaned in and kept going. That’s when it happened. As I made the final cut, the toe nail clipping sprung up and landed directly in my eye! I leapt up and ran to the bathroom. I could feel it in there, its sharp little edges, but couldn’t immediately see it. Upon further investigation, I could see the dreadful thing down in the lower part of my eye lid. Despite every attempt I made to get it out, it remained. The longer I worked on it, the worse it got lodged. And the more I thought about my predicament, the more I got nauseated and worked up. How could such a simple task of goodwill turn into such a fiasco? By the time my husband arrived home from work, I was in such a complete state of panic that I could barely verbalize what was going on. Meanwhile, Dad was fast asleep.

James asked, “What the heck is wrong with you?”
Hands frantically waving around my face, “It’s in my eye, it’s in my eye!”
“What’s in your eye?”
“A piece of Dad’s toe nail!”
Calmly, “What?”
“A – PIECE – OF – DAD’S – TOE – NAIL!!”
More calmly; “How did that happen?”
Honestly, did I really need to explain this right now? “I was clipping his toe nails and a piece flew up and landed in my eye!! GET IT OUT!!”
“Ok, ok, relax! Come over to the sink.”

After another minute or so with the help of a Q-Tip, James finally retrieved the sickening piece of cuticle. After it was all over, I could just feel the intense dryness of having cotton swabbed over and over again in the lower half of my eye lid. What an ordeal!

3+ years later and for whatever reason, I still regularly cut Dad’s nails. I suppose we could have the onsite podiatrist take care of this, but I just can’t cough up $40 a month for something that takes me 5-minutes to do. Not sure if Dad remembers his inaugural pedicure or not, but we kid around every time we trim his nails. I usually say, “Hey, bet you never imagined we’d be having this much fun when you were in your eighties?!” He typically chuckles, then I shut my eyes very tightly and snip.

Patient Advocacy

Being a patient advocate can be a daunting task, even when you are a health care professional like me.  Shortly after Dad’s birthday, he was taken to the hospital after hitting his head when he fell at the Home.  Although he seemed alright, they transported him to the hospital as a precaution.  Diagnostic tests revealed he had a small subarachnoid hemorrhage (a bleed) in his brain, so he was admitted for observation. 

Within 36-hours of his admission, I noticed a significant decline in Dad’s mental status.  Understanding that a hospital stay is often confusing for the elderly, I decided to reach out to the Hospitalist for her perspective.  She provided a well-constructed synopsis of his medical progress and plan of care.  However when I inquired about his change in mental status she quickly added; “…we noticed he was a bit agitated, so we increased the dose of X medication, but I just reduced it today because it made him too sleepy” Upon further investigation, I also found out that the dose of his memory medication had been reduced because the hospital didn’t carry the strength that Dad was taking.  Bingo!  Despite checking and rechecking Dad’s medication list with the hospital staff, changes had been made without my knowledge.  As I said in an earlier post, small medication adjustments can have dramatic effects on LBD patients – especially Dad.  I told the Hospitalist that she wasn’t to change any of his dementia medications and that I would bring in his memory medication from the Home.  We had worked so closely with the neurologist to successfully titrate his doses to just the right affect, I wasn’t willing to backtrack.  I then continued to tell her that any medication changes and adjustments from that point forward were not to be made without my consent. I think the exact words I used went something like; “I don’t care if the man needs to fart, nobody is to order even a Mylicon without my approval.”  That certainly brought the message home and I was pleased to see that afterward she started calling me with even the most minute details about Dad – perfect. 

Now I’m not suggesting that everyone has to be this bold or challenging with medical staff.  Just know that in order to be an effective patient advocate you need to be knowledgeable about their current regimens, willing to step in, ask questions (lots of questions) and say no when it is appropriate.  Stay informed, use common sense and remember, you can Google just about anything these days. 

After 10-days in the Hospital, it was time to get Dad discharged.  We are blessed to have such wonderful health care services here in the United States, however the fact remains that hospitals are one of the most dangerous places for an elderly person to be in.  With the potential for adverse medication events and opportunistic infections that are becoming resistant to standard antibiotic therapies, once your loved one is medically cleared to leave, make every effort to get them out.  Since Dad had been bedridden for so long, we thought it would be best to discharge him to a rehabilitation center for some physical therapy before he went back to the Home.  After a few phone calls from the social worker, we got Dad a bed at a local rehab center.  When he arrived I spoke with the admitting nurse to reconcile his medications.  Wouldn’t you know, they had been changed again (what a surprise, welcome to health care!).  Nothing earth shattering this time, however I took the paperwork from the kind nurse’s hands, wrote down what needed to be corrected and gave him the same speech I gave the Hospitalist just days prior, while acknowledging I knew that I was a pain in the ass.  Well I guess that message was positively received because when I passed the nurses desk on my way out that afternoon, the unit secretary gleefully held up a sign she had just printed that said; “No Medication Changes Without Approval from Jennifer” – exactly.

It’s been just a couple of days at the rehab facility and things are looking up.  Showered, shaven and drinking a strawberry ice cream shake from his favorite convenience shop, Dad seems stronger and is starting to improve.  Our goal is to get him back to the Home, but it will depend upon his progress.  For now, he is wheelchair bound until he begins to start ambulating more steadily and regularly during his physical therapy sessions.  My hope is that we can make that happen within the next several weeks.

D-Day

Shortly before the holidays I was directed to speak with the case manager at the Home where Dad has been living for the past 18-months. Apparently, the State had recently been in for a routine site survey and randomly selected several residents to audit – including Dad. Unfortunately as luck would have it, it was not one of Dad’s finer days. As a result of what they learned and observed on that day, the surveyor(s) deemed him “inappropriate” to continue living there. When I inquired about what they based their conclusion on, I was directed to some progress notes that had been written by one of the staff members on a recent early morning. I read, “5am – John continues to be agitated, walking around hallways very upset. Exhibited challenging behavior with staff at prior evening meal time, distressed and making (threatening) gestures with a table fork.” “5:30am – Finally settled down and back in bed.” The case manager went on to remind me that we had been struggling to manage his behavioral changes since last summer. Regardless of several medication therapy adjustments, it seemed we were at a dead end. I replied; “Ok, so where do we go from here? What is the next step? What are our options?” The best she could offer was; “We really don’t know. You could try calling other area facilities to see what types of programs and services they have.” Hmm I thought to myself; “Dad’s already in a facility specifically designed to support memory care residents. He doesn’t seem quite ready for nursing home care yet (still independently ambulates, feeds himself etc.)” So I wondered, “How would other similar facilities manage him differently?” This would require some research.

The following day I called the neurologist to get her perspective and advisement on the situation. After we talked about the advancement of LBD and where Dad is in his progression, she suggested I speak with her case manager for more information about placement recommendations. That discussion led to another long list of memory care and skilled nursing facilities that we were already aware of, including some out of State. As an only child, how could I possibly move him out of State while remaining close enough to easily visit and keep tabs on him? That to me was simply not an option, so I was back to square one.

Several days later I had a conversation with one of the Home nurses about Dad’s medications. She alerted me to the fact that Dad had been refusing his morning-time medications. Seems that his night-time episodes were leaving him so out of sorts, he wouldn’t take his medications at breakfast. However, he did take his evening medication doses with a high degree of regularity. That’s when the light bulb came on. Maybe the medication adjustments weren’t effective because he hadn’t been taking them? I also remembered the neurologist telling me that a stronger strength of the medication he currently takes to improve his mental function had recently become commercially available. I thought to myself; “What if we changed the administration time of his behavioral medications to evenings and increased the strength of the medication he takes for his memory? I immediately called the neurologist again.

Within a week of making the modifications to Dad’s medication regimen, we started to see a big improvement in his behavior and cognitive function. He is able to better initiate and hold improved conversations, seems to be less agitated and his nightly events that had become so frequent have nearly disappeared. Wow, what a big difference little changes can make! Now I’ve started to keep a log of Dad’s cognitive function through my own observations during our time together, as well as staff feedback from the Home. For the time being, I’d say we have successfully avoided (another) “D-Day”…