My wife is recovering from aspiration pneumonia, hospitalization, and VAT surgery (to remove fluid from pleural cavity). The doctors have been very happy with her recovery despite now being late stage Huntington's Disease.

Before the pneumonia hospitalization, she was on nectar thick fluids and her food was mostly cut up small and heavy on smoothies and the like. But she was not on fork-mashed food, let alone pureed food.

During her recovery in the hospital, she had been eating pureed food. Didn't miss a meal, ate it all. Occasional cough was a productive cough from fluid in lungs, according to doctor.

The problem has been at the rehab/nursing home, she has had great difficulty getting through meals. She actually is skipping some meals or eating only 25%, and her weight continues to drop. I just don't understand how she could do so well at hospital and have these coughing bouts. I even wondered if it was due to her allergies and asthma history, but she is getting breathing treatments in the morning and evening (albuterol) regularly. So that should eliminate sinus drainage or phlegm as reason for coughing.

Today, I recalled that she started taking clonazepam for about two months prior to the pneumonia outbreak. She started drooling at home. Neuorologist added that to help with her anxiety while eating. 0.5 mg x 3 daily. She was on same dose at hospital.

Fast-forward to today and nursing home moved that up to 0.75 x 3 daily because she would get anxious and weepy, especially at times when I was not with her. That is a 50% increase on the clonazepam. I did a google on that (Klonopin) and it said that dysphagia was a common side effect of clonazepam.

Dysphagia, as some of you know, means difficulty swallowing! Have any of you had such experience? My wife has never been interested in a feeding tube so we are hoping to come up with a "reason", as this is weird how she would do well at the hospital... while jumping to small-bite regular food to pureed quickly. I can handle the hard truth, but I am skeptical that she has advanced so quickly with tongue issues where she is basically in a dying process. Any help is appreciated.

all I can offer is that I understand your concern and situation.
I don't know.
stay strong
Joe/NC

All I know is my husband has been on clonazepam for several years. His dose is .5 twice a day. This does not seem to have the great effect you are finding. I wonder if they could lower the dose to see if that would help. Just an idea.

Thanks all. I took my wife out of the rehab/nursing home she was in as she continued to lose weight, was dehydrated, and being neglected. I assumed she was over-medicated with clonazepam but it could have been just a lack of energy from lack of nutrition and very dehydrated.

Before I could remove her on my terms, she had a choking incident which scared their staff. Next day they informed me we had to go with a feeding tube or they would discharge her. Great place, huh?

She wound up back at the hospital for seven days and is home now while I try to find a nursing home. I have found nice places which I am willing to do private pay.. and then it falls through because of the "HD" label in her chart. Not a good fit, is what they say. What it is, is more like a business decision in which they want life to be easy for the nursing home. Discrimination at it's worst. My wife is no different than a stroke victim or someone with advanced Parkinson's at this point. Really shameful how these nursing facilities operate and want to put people on feeding homes so that their jobs are easy when it comes to feeding and meds, while they keep people alive so that they can soak private payers and Medicaid.



Edited 1 time(s). Last edit at 11/10/2016 12:32PM by TylerFitz.

Thanks for the update, sorry it is not better news though.
I constantly worry how many days my wife is behind similair

Perhaps a note from her doctor about her specific symptoms and behaviors. I agree, many get labeled as a problem, or expensive care because of the HD diagnosis. SNFs will see them as not rehab candidate, or long tem dependent care.

All medications come with some level of possible side effects. Can you discuss with her neurologist if there is another medicine to control her chorea/behavior that they might use, which doesn't come with the side effect of dysphagia. It could be the Klonopin or it could be the next stage of the disease. You mention that she was on nectars before, perhaps you could go a little thicker, or offer the liquids by spoonful to control the bite size.

A hospital or rehab cannot by law (in the US) force a patient to take a feeding tube. If they have determined that swallowing is a risk, you can sign a waiver that you have been informed of the risk and still want her to take her food by mouth. She would need to be awake and alert enough though to be able to initiate a swallow. Sitting upright and tiny bites often helps, and the staff might not be patient enough for that.

I hope this helps. If she is truly progressing, a hospice can better serve her comfort and care needs, and likely would be more compassionate toward your requests as well. We had hospice care at home for 3 months and it was wonderful.

Patty