Month: February 2014

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.


Gettin’ Squirrelly

Not unlike many other times that happen while we’re out running errands together, Dad “saw” an animal from the car – this time is was a squirrel.  If you are familiar with LBD or know someone who has it, you are probably aware of the very vividly-real hallucinations that they frequently have.  Dad’s hallucinations typically involve small domestic animals, work crews and people on occasion.  There is one place on our usual course of travel that he often sees ‘situations’, such as a plane stuck up in a tree or a ship that has been stranded on land.  He can describe the scenes with great detail including colors, markings, etc..  It’s pretty wild.

Over the course of the last several years after having nearly strangled the two of us by our seat belts while inadvertently locking up the car brakes to avoid hitting something Dad thinks he sees, I have gotten accustomed to disregarding his sudden shout outs about “the puppy crossing the road” or other creatures who have been “previously doomed” by traffic.  So on this particular drive, I just ignored his ongoing play by play about this squirrel. 

“Jennifer look, it’s running so fast!  I can’t believe it!  It’s running on top of that wall right alongside the car.  It’s keeping up with us!”

Well I have to say after a few minutes of this, it did start to peak my curiosity.  We had been driving along a quarry surrounded by a large stone wall that runs down along the roadside, so that much he had right.  I just had to look over.  What I saw wasn’t exactly a squirrel however, but a long brown centipede-like bug stuck to the outside of the passenger door window.  Positioned in the just the right spot and with perfect proportion, from Dad’s viewing angle (and horrific eye sight thanks to macular degeneration) the bug was easily mistaken for a squirrel running along the top of the wall.  The faster we drove, the faster it seemingly ran! 

As we approached the next intersection Dad exclaimed; “Look, now it’s in the middle of the intersection!  Oh no little squirrel, don’t get hit!”  Sure enough, as I peered through his window the bug was still affixed to the glass giving Dad the illusion that his little friend was now in imminent danger.  Thankfully as we continued driving across the intersection, a bank of trees then lined the roadside so that the creature appeared to have safely made it into the woods – big sigh of relief!  Luckily that one had a happy ending. “Others” however, have not been so fortunate 🙂