Patient Advocacy


We were about a year into Dad’s move and life at the Home was going well. There were days in the beginning that we almost felt as if Dad didn’t belong there, that perhaps he could/should have been living in his own home, leading a fully independent life. Then something would happen that would snap us back to the reality of his LBD. This time it was halitosis.

It was Saturday and I had stopped by the Home to pick him up mid-morning to run our usual errands. The weather was beautiful and we had the whole day ahead of us. When I arrived at his room, he was just finishing up his post-breakfast, morning routine. I looked around his bathroom to see if he needed any toiletries while we were out. Everything seemed to be in order; toothpaste, shampoo, soap, razors – check. Even the prescription steroid cream that the staff applied to sooth his itchy skin spots that the daily memory patches left behind was neatly organized in his medicine cabinet. Ready to go, we started to head out the door. That’s when he told me that his mouth hurt. I asked;

“Did you burn your mouth on some soup or something?”

“No, I don’t think so…”

Hmm I thought, he probably just burned his mouth on something hot or perhaps abraded it on something dry and scratchy and forgot. As his dementia started to progress a bit, I was beginning to brush off some of the (erroneous) things that Dad had begun to point out or talk about and quickly dismissed the remark, thinking it would probably subside or be forgotten, as would often happen with such topics as the day went along.

Dad climbed into the car, put his seatbelt on and we were off. It wasn’t until several minutes later that I could smell this horrific odor. As I continued driving I noticed that the smell got worse, especially when Dad was talking. It was so atrocious, I had to immediately put the windows down to air out the car – I’m talking ‘knock you over with a feather’ potent. It couldn’t possibly be his breath I thought, Dad never had bad breath that I could remember. Whatever it was though, it was FOUL. We arrived at our first stop and I was now sure that the odor was his breath. I asked him to open his mouth and that’s when I could see the little white pustules on top of his tongue.

“What the heck is that?!” I exclaimed.

“Is what?” he asked, as I turned my nose in the opposite direction to lessen my exposure to the offensive smell.

“I think you have some kind of infection on your tongue or something, maybe we should have you gargle with some warm salt water when we get back.”

As soon as we got back to our house, I prepared some warm salt water and had Dad gargle. He indicated that his mouth felt better, so I asked the staff at the Home to continue the gargles for the next day or so. However by day-2, his mouth looked no better and I knew it was time to see the doctor.

“What do you think it is?”

“Looks (and smells) like a fungal infection to me”

“How the heck would Dad have ended up with an oral fungal infection?

“I have absolutely no idea.”

“Dad – any ideas?

“No honey, I don’t.”

It took a couple of prescriptions to clear it up. We finally went with a cocktail of Maalox, nystatin and sucralfate that I had remembered making up for some radiation cancer patients struggling with mouth ulcerations. That finally seemed to do the trick and brought relief to poor Dad’s oral discomfort within the first couple of treatments – hooray, no more halitosis!

It wasn’t until several weeks later on another one of our daily adventures, that Dad brought the subject of his oral fungal infection back up;

“I think I know what happened to that thing with my mouth.”

“Really – what?”

“I think I was brushing my teeth with that cream the staff puts on my itchy skin”

Holy crap I thought, I bet he’s absolutely right! Despite some of the LBD effects we were starting to see in Dad, he still had the wherewithal to figure out what happened and he was spot on. The toothpaste and steroid cream tubes were both kept in his bathroom medicine cabinet and were similar sizes. Between his impaired eye sight (macular degeneration) and the dementia, he had probably been grabbing the wrong tube and brushing his teeth with the steroid cream for some time – yuck! Needless to say, we started to keep the cream in the medication room from that point forward. This was just one of the first of many things to come that confirmed our decision to place Dad in Assisted Living. Regardless of how great his good days were, I would hate to imagine what other kinds of trouble he might get himself into in a private home.

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 🙂