Dysphagia - Anyone beat this

@elhijo

I am so sorry you and your dear mom are living this.

This is very familiar territory to me. My father was one of those folks with dementia whose progression was somewhat atypical from what is so often described here. It took me a while to process the last stages of dad's life as they were so different from what I expected.

For me, 2 truths that often surface here are what helped me understand what I was seeing.

Truth number one-- A person with dementia is considered to be in the latest stage for which they have symptoms/behaviors. I know that a PWD can sort of straddle stages which can lead to a false sense that a person is not as far along in the disease process, but you don't "average" the stage numbers under which you find her symptoms.

Truth number two-- The brain controls everything and the damage from dementia can cause a breakdown in skills that range from memory and planning to swallowing and digestion depending on where the damage occurs.

In dad's situation, many of his skills were remarkable preserved in contrast to how compromised certain bodily functions were. In the last months of his life, he was losing weight at a worrisome pace despite a pretty decent appetite and plenty of calorie dense treats. I read somewhere that a loss of 10% of body weight correlated with an elevated risk of death within 6 months. Dad had been an XL and now his Large tees were hanging on him. His gerontologist explained that in dementia, digestion is impacted. Dad was eating, but his body was seemingly passing the food through without effectively breaking it down.

When I spoke with the DON at his MCF, he ordered a swallowing evaluation. He also ordered an exam by the NP, bloodwork and a chest Xray. An SLP came to see him. I happened on the appointment with lunch from Chik-Fil-A. She tested him on swallowing different textures and noted what she called a "sluggish epiglottis". This is often end-stage stuff. This structure is higher up than you are thinking-- it's at the back of the throat which can add to the risk of aspiration if your LO doesn't swallow their food immediately but pockets it or allows it to just hang at the back of the throat. It's kind of a flap of tissue.

During the eval, he ate his various treats. He used the bathroom a couple times. He flirted shamelessly with the SLP telling her about some businesses he owned in the community where she grew up. And he told us all about a visit he'd had from my sister earlier that day-- about how busy the kids keep her and how she's up for a promotion and hasn't had time to come see him. (FTR, my sister died in 1994 and her girls are 40-something)

FWIW, you can aspirate on saliva especially if you don't swallow it regularly. The SLP suggested we verbally prompt dad to swallow as he still could with a prompt. TBH, that day I think I was hearing the secretions moving that are sometimes called a "death rattle".

This is like the picture she used to describe the structure of the throat- because I'm not a doctor either.

Human Throat Anatomy Stock Illustration - Download Image Now - Anatomy, Throat, Pharynx - iStock (istockphoto.com)

I spoke with the SLP after. She didn't suggest mechanical processing of his food or thickening drinks as she was concerned about his appetite and weight loss and saw he enjoyed eating. She was gobsmacked by his conversational skills in contrast to how poor his mechanics of swallowing were. She was especially shocked by how convincing his description of my sister's visit was when I told her it didn't happen. The bloodwork and Xray happened not long after I left.

She also suggested safe feeding strategies, no straws or sports bottles, he has to be sitting fully upright and we should prompt swallowing.

I stopped by my mom's house because I was really concerned, he was entering stage 7. She said she'd visit him the next day. I called dad's brother who also declined a visit immediately and promised to stop by the next day. Dad died from complications of aspiration pneumonia in his sleep later that evening which was confirmed by the Xray.

Again. I am really sorry you are in this place.

HB

If you can find the time, this book may be very useful reading for you. It's written by a physician who goes deep around the topic of various procedures in the context of old age and life-limiting disease.

Being Mortal | Atul Gawande

Most caregivers I know would advise against tube feeding for an advanced dementia patient because it doesn't generally extend life or offer better quality of life and can bring complications like agitation and infection. Surgery to place a PEG tube would come with anesthesia (and the decline that triggers in most) and nasal tubes aren't generally well tolerated. Plus, the PWD could still aspirate on saliva. The other piece is that by the time a PWD isn't swallowing effectively, other parts of the digestive system are shutting down as well; her body may not fully absorb the calories or nutrients from what goes in.

HB

Your mom is so lucky to have an hijo like you. What a great job you’re doing 💕