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. 

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One comment

  1. I agree 100%. My husband passed away in nov.of 2013 in a NH.Several times he was prescribed thickened liquids which he refused. He was in the last stages of Lewy Body Dementia. While I was at the NH I would watch him carefully and eventually got him on regular liquids. But it was a struggle with the staff. The balance between quality of life and risk is difficult. Keep fighting for him.

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