Assisted Living

Mary

Several months after Dad had been at the Assisted Living Facility, he became friends with a resident named Mary.  Mary was in her early 80’s and just the nicest person ever.  As with many of the residents I was getting to know, I often wondered what events brought them to the Home.  But with Mary, I could see that she was struggling with a bit of dementia.

When I stopped in at the Home over the next few months, I would frequently find Dad and Mary sitting together.  They would enjoy watching television, participating in an activity or just sitting quietly waiting for the next meal to be served.  On the occasions where I would find Mary sitting by herself, she was quick to spot me and would always give a welcoming wave.

“How are you Mary?”

“I’m good, just waiting for lunch.  I think your father went down to his room.”

“Ok great, thanks!  We’re going to the grocery store, do you need anything?”

“No thanks, I think my son is coming later – I’m good.”

“Alright, if you change your mind just let us know.”

I wish I had known Mary years before.  She was so enjoyable and down to earth, I’m sure we would have become fast friends.  She always looked nice in her tailored slacks and attractive sweaters, while sporting her room key on an elastic wrist coil.  We would enjoy each other’s conversation, she was the kind of person that just made you feel good.  I could see why Dad enjoyed her company.

In getting to know Mary, I learned that her 98-yr old mother was still alive and in a nursing home up the road a bit.  Apparently the two did not get along much, but it seemed longevity was in the genetic cards for Mary.  As time passed however, we noticed that her speech and ability to create sentences became impaired.  She would smile and greet me warmly as usual, but then her mind couldn’t seem to bring out the words she wanted to use.  She would start out well, but then get stumped and look up as if trying to pull the words out of her head, except they just wouldn’t come.  Frustrated and aware of her ailment, she would shake her head and make a silly noise that resembled the sound of what a cartoon turkey gobble might sound like.  I felt badly and tried to sooth her resulting exasperation.

As her disease progressed Mary needed additional care and was moved to the nursing home where her mother was living.  I could see that Dad missed Mary, so I wasn’t surprised when he asked if we could go visit her.  It was a cold, damp winter day and after a 20-minute car ride we made our way across the icy parking lot into the home.  We signed the visitation book and walked down to the nursing desk to inquire about her location.  I could see Dad looking around and taking in the scene.  The nurse gave us the number and gestured in the direction of the room.  She also smiled and told us that Mary was sharing a room with her mother.  Egad I thought, after all the cruel things that life can put you through, why on earth would someone have to share a room with an individual they don’t particularly get along with at this stage of the game? 

We made our way down the corridor and entered the room.  It appeared as if both women were sleeping, however we were “greeted” by a grumpy voice that came out from underneath a blanket;

“Who are you looking for?”

Sheepishly I responded, “Hi, we’re looking for Mary?”

“She’s over there”, a spindly finger pointed across the bedroom.

As we walked toward the bed, a woman we barely recognized opened her eyes and gazed up at us.  She slowly sat up and reached for her glasses before asking who we were.  That’s when I saw the familiarity of Mary.  She appeared to have aged quite a bit over the last couple of months.  That jubilant personality was replaced with more of a vacant expression and she seemed frail in comparison to the last time we had seen her.

Dad stepped forward; “Hi Mary, how are you?  It’s John and Jennifer”

With a delicate voice, but detectable smile she responded, “Oh hi, I couldn’t tell who it was until I put my glasses on…”

“Are you doing alright?  We miss seeing you at the Home.”

“Oh yes, I’m doing fine.  I’m just so tired all the time.”

After a few minutes of exchanging pleasantries, the conversation trailed off and we knew that we had reached the end of our visit.  Dad and I walked back through the hallway and out into the parking lot.  As we climbed back into the car and fastened our seatbelts he seemed very pensive.  

I asked, “How do you think Mary looked?”

“Awful, what a shame.  I can see why she doesn’t get along with her mother, she seemed pretty ornery.”

Dad just sat there staring out through the windshield.  I could tell he was thinking about his own situation and I wondered if our trip to see Mary was not only to visit with her, but to see what was yet to come for him.  It was all very sad.

“Hey, want to stop for an ice cream on the way back?”

“Yes, that sounds great Jennifer!”

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.