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!”

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.