patient advocacy

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 Tortoise and the Hare

I think that anyone who has the authority to order “thickened liquids” for a patient should be required to restrict their fluid intake to these gelatinous substances themselves first, for a week.  If you are not familiar with thickened liquids, they are a commercially available beverage preparation with the consistency of honey.  They are mainly ordered as part of a dysphagia diet for someone who has difficulty swallowing and there is concern that the individual will choke while eating or drinking.  Thickened liquids are disgusting and I can’t blame my father one bit for not wanted to “drink” them, especially since he is perfectly capable of ingesting normal liquids.

At some point during Dad’s initial hospitalization, some individual in their infinite clinical wisdom, deemed him appropriate for a dysphagia diet.  Now although I saw no signs of any swallowing difficulties, as I watched him wolf-down a full turkey dinner with all the accompanying beverages (e.g. milk and ginger ale) during his 2nd night in the neurology observation unit, perhaps the effects of his head injury at the time caused some trouble with his eating habits days later? (I’m stretching a bit here, but just go with me…)  In any event, thanks to that person Dad has now been forever branded with having a dysphagia diet and we struggle with getting him back on a regular diet every time he goes through any transition of care.

Dad’s been back at rehab for a week now and unbeknownst to me has been ordered a dysphagia diet.  I kick myself for not checking on this yet again.  As a result, he has been barely drinking any fluids.  When I arrive for my daily visit, it is immediately visible how parched he is and his first words to me are in request of either water or juice.  I can see that he is miserably uncomfortable and agitated.  It is also obvious that his dry state is impeding his recovery progress, as he is unwilling to work with any of the physical therapy staff – who by the way, try to pass off thickened liquids as juice when he asks.  Admittedly he is old and he has dementia, but he is not stupid and this makes him more angry.

Getting the diet changed is a big deal.  As you can imagine, there are serious liability issues that these facilities face and they must follow the first principle of healthcare; “First, do no harm” – I get that.  But beyond that there is a point where the balance between risk vs. benefit tips and quality of life must take precedence.  What is the point of these efforts, if they make someone feel so miserable that they give up wanting to live anymore?  As I continue my efforts to work with the management team to resolve this I am careful to respect their boundaries, but must also keep in mind the bigger picture.  If Dad continues to dehydrate, he will be at risk for other, more serious, life-threatening complications.  They allow me to feed him whatever he wants while I visit.  So in addition to his strawberry milk shakes, I am now packing another one of Dad’s favorites, pineapple juice.  While I was visiting yesterday he drank 2 glasses of apple juice, a glass of pineapple juice, 2/3 of a strawberry milk shake and a large Styrofoam cup of water – all without any signs of trouble swallowing.  As long as I am able to do this for him, I am willing to work through the lengthy process it will take to get his diet order changed.  This one’s a marathon, not a sprint.  Slow and steady wins the race. 

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!

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.