Hospitalization – Round 2 (Part II)

So after 36-hours, additional x-rays, more tests and some surgery, Dad has a new and improved left hip. He’s pretty groggy, but came out of his hemi-arthroplasty (partial hip replacement) procedure with flying colors. Based on what the orthopedic team observed, they surmise Dad probably broke his hip during his first fall back in early February. But because everyone was so focused on his head injury, x-rays were never performed. Sadly, it wasn’t until he got to rehab and started physical therapy that we noticed any problems. Poor Dad!

They’ve already had him sitting up on the edge of the bed today and we hope to have him up on his feet tomorrow. Now that the joint has been re-stabilized, he should be able to stand and ambulate – albeit, a little sore I’m sure. The plan is to get him back to rehab next week. In the meantime, we’ll just keep the strawberry milkshakes coming!

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Hospitalization – Round 2

Remember what I said about being a patient advocate and using common sense? Well, common sense told me that Dad hasn’t been making the progress in rehab that I was expecting him to. Four days after his transfer to the rehab facility he fell again. According to the staff, he stood up from his wheel chair and fell on the dining hall floor. He seemed ok and as luck would have it, I was driving down to see him when it happened. When I arrived he seemed a little grumpy, but otherwise fine. He said he was not in any discomfort or pain, so I didn’t think much about it. That was until I noticed he could not get up out of the wheel chair or stand up on his own during physical therapy sessions a few days later. He was also getting exceedingly short and ornery with the physical therapy staff. In fact yesterday he told one staff member to; “get the hell away!” Hmm, now that’s not Dad and my intuition told me something was up. I went to speak with the nurse manager.

“Do you think we could get an x-ray of Dad’s left leg? He’s normally pretty stoic, but he won’t bear any weight on his left leg and isn’t making much progress with physical therapy. I have a sneaking suspicion that he may have torn or broken something when he fell last Monday…” She indicated that it was indeed his left side that he fell on and agreed to get some x-rays ordered. Well you guessed it, the pictures revealed a cracked left femur – up at the top toward his pelvis. I feel so bad. He’s on his way (back) to the hospital now for an orthopedic consult. Since it’s nearly 8pm, I’m guessing we won’t know much more until tomorrow. It’s been nearly 10 days since the fall and it’s probably started to heal already, so I’m not sure what the recommendations will be. Guess it will depend on the exact location and type of fracture. We’ll just have to wait and see. In the meantime I’m waiting to speak with the emergency room staff – same speech as always 🙂

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 🙂 

Birthday Celebration

There are many times in life that it’s important to stop, smell the roses and be thankful for the time we have together. Unfortunately, many of us probably don’t do that as often as we should. Dad’s 87th birthday recently passed. For many years, we have typically gone out for dinner. This year was no exception and he picked a local Irish pub for his celebratory meal. When I picked him up at the Home he was totally on his game. He was bright, cheerful and expecting my arrival (I had called him earlier in the day about our plans).

When we arrived at the restaurant he asked that I read the entire menu. After deliberating several choices, he selected the ¼ pound hamburger with French fries. Cooked to perfection, he devoured the burger, fries and a ginger ale. With some gentle persuading (it usually doesn’t take much), he raised his eyebrows and delightfully ordered the homemade bread pudding. If there is anything that LBD hasn’t affected, it’s his appetite for good food! The waitress kindly served the pudding with 2 forks. Having just eaten an entire plate of bangers and mash, I felt guilty about eating dessert. Then I thought to myself, “We may not have a birthday next year, this could be it.” With that thought it mind, both of us enjoyed splitting the yummy pudding.

We rolled out of the pub that evening like 2 pigs pleasantly stuffed and satisfied. In looking back on all the years we have spent time together celebrating birthdays or otherwise, I never thought about it being the last time we might do something together. The days are so hit or miss with LBD. You just never know how one day will be to the next. I guess that’s why we should make the extra effort with whatever time we do have left. It was a great birthday!

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”…