Month: March 2014

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. 

The Inaugural Pedicure

The first time I ever trimmed Dad’s toe nails was when we moved him up here to be closer to us. He had just been discharged from a skilled nursing facility, after a hospitalization for pneumonia where he suffered a significant adverse drug reaction (another story for another post…). After our 3-hour drive home, I took his shoes off so that he could take a nap. I quickly noticed that his toe nails looked as if they had not been tended to for some time. So as a dutiful daughter, I decided to cut them. I thought, how bad could this be?

As I gently positioned his (somewhat sweaty and rather pungent) feet across my lap, I looked down and noticed that the nails on his left foot appeared to be yellow, thick and kind of spongy – most likely a fungal infection. They were gross quite honestly, but I was determined to get the job done. Starting with the non-infected side, I began clipping. One, two, three toes done – alright not bad, I’ve got this. As I finished with the right and moved to the left, things got a little tougher. The nails were definitely infected with something that made the job more difficult. I leaned in and kept going. That’s when it happened. As I made the final cut, the toe nail clipping sprung up and landed directly in my eye! I leapt up and ran to the bathroom. I could feel it in there, its sharp little edges, but couldn’t immediately see it. Upon further investigation, I could see the dreadful thing down in the lower part of my eye lid. Despite every attempt I made to get it out, it remained. The longer I worked on it, the worse it got lodged. And the more I thought about my predicament, the more I got nauseated and worked up. How could such a simple task of goodwill turn into such a fiasco? By the time my husband arrived home from work, I was in such a complete state of panic that I could barely verbalize what was going on. Meanwhile, Dad was fast asleep.

James asked, “What the heck is wrong with you?”
Hands frantically waving around my face, “It’s in my eye, it’s in my eye!”
“What’s in your eye?”
“A piece of Dad’s toe nail!”
Calmly, “What?”
“A – PIECE – OF – DAD’S – TOE – NAIL!!”
More calmly; “How did that happen?”
Honestly, did I really need to explain this right now? “I was clipping his toe nails and a piece flew up and landed in my eye!! GET IT OUT!!”
“Ok, ok, relax! Come over to the sink.”

After another minute or so with the help of a Q-Tip, James finally retrieved the sickening piece of cuticle. After it was all over, I could just feel the intense dryness of having cotton swabbed over and over again in the lower half of my eye lid. What an ordeal!

3+ years later and for whatever reason, I still regularly cut Dad’s nails. I suppose we could have the onsite podiatrist take care of this, but I just can’t cough up $40 a month for something that takes me 5-minutes to do. Not sure if Dad remembers his inaugural pedicure or not, but we kid around every time we trim his nails. I usually say, “Hey, bet you never imagined we’d be having this much fun when you were in your eighties?!” He typically chuckles, then I shut my eyes very tightly and snip.

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 🙂