Tube Feeding is discouraged for Alzheimers but recommended for stroke/ALS

You would hear me sharing a lot on phlegm suction in my blog as well as my YouTube videos. You may wonder, where on earth would a person with Alzheimer’s or dementia ever require phlegm suction?

The answer is, phlegm suction relates to those who develop difficulty swallowing which sometimes occurs in end stage. This condition is known as dysphagia. The reason why you may not be familiar with the use of phlegm suction in Alzheimer’s is because most of the time, they would never have the chance to get to the stage where they require phlegm suction.

At the end stage of Alzheimer’s, some would start to choke especially when taking fluids and have problem swallowing their saliva, phlegm and mucus. Instead of swallowing food, fluids and their saliva to their stomach, some often ended up in the wrong track…. towards their lungs.

Because the sensation of fluid or food getting into the lungs, they would often prefer not to eat because it is often painful. It could be also because they have ‘forgotten’ how to eat or no longer know how to crave for food. By the time they develop swallowing difficulty, it is already at the end or advanced stage.

At this stage, the standard protocol is to obtain evaluation from a speech therapist and try hand feeding. That often fail because we cannot reason with someone with Alzheimer’s or dementia to eat or swallow. If they don’t understand, they would not do it. As they start to lose weight drastically and become weaker, grief stricken family members would be referred to hospice care. The aim would then be keeping them comfortable, either sponge bath (because a lot of heat builds up in their body) and/or painkillers and sedatives.

But when my mother reached that stage in Thailand, specialists from a private and government hospital  told me that we have to put in nasogastric tube feeding. Nothing whatsoever about hospice care. After my mom is fitted with the nasogastric tube, she goes under the healthcare system where doctors and nurses are well familiar with the procedures of nasogastric feeding and complications that come from it. Whenever I encountered a problem and asked them, they could offer me a solution. For example, they are aware she would try to pull out the tube so they told me about the protective hand mittens for her to wear. A lot of phlegm? Do phlegm suction.  With time, my mother regained her energy. Previously when she was eating by mouth, she had high blood pressure and cholesterol which we had problem controlling and she was developing diabetes. She also have liver cirrhosis when once  her chronic hepatitis B had turned acute 5 years ago.

But with tube feeding, because the food is prepared directly from the hospital (she is on the special diabetic diet), and is dietician approved, her overall health has improved. 8 months in and during the last checkup last month, her blood pressure, cholesterol and blood sugar are under control. The virus count in her liver is negative, ie no longer detectable.

Had I not been in Thailand, my mom would not live so long for me to see this. That is why I wish to bring this to your knowledge. That if your loved one with Alzheimer’s or dementia could no longer swallow, it need not be the end. But there would be a price to pay because should we decide to place them on tube feeding, they would require a high level of care. Nursing homes and memory care usually do not support tube feeding as they do not have the resource to look after.

If you wish to go that route, you would need to turn to other sources and support groups outside Alzheimer’s/dementia for more information. A good place to start is at ALS forums and support groups.

Do you know that the issue with difficulty swallowing also exists in other illness such as motor neuron disease for example in ALS (Lou Gehrig disease) and complications from stroke? Regardless of it happening to a person with Alzheimer’s, ALS or stroke, the issue is the same, that is cannot swallow. But it is only in Alzheimer’s patients that a feeding tube is being discouraged.

In ALS and stroke patients, feeding tube is being recommended. Initially when I wanted to research more on feeding tubes and phlegm suction, the only videos I could find on the tips is from people with ALS and gastroparesis. Hence now, I am no longer active in Alzheimer’s support groups. I spend a lot of time in ALS support groups as I learn a lot from them.

ALS is a devastating diagnosis because unlike other illness, ALS is 100% fatal. In the ALS world, dysphagia is not a big deal. In fact, some usually even have a PEG tube (gastric tube surgically placed) before they lose the ability to swallow. This is based on the advice of their doctors.

There are some who shared that they initially had declined a feeding tube during the early stage of their diagnosis. However, when the time comes and they could no longer swallow, the sensation of hunger is terrible. Because in ALS, while they lose functions of their body, their mind is perfectly clear. Most would have declined initially eventually agreed to the feeding tube. And from the experience shared by the ALS patients themselves, they say they have no regrets. Because a feeding tube gives them a better quality of the remaining lifespan they have. They need not worry about choking, hydration and nutrition because these can be taken care by the feeding tube. In fact, they say they would occasionally indulge in their favourite food while they still can.

And in the ALS world, phlegm suction is the norm of life. Because when a person can no longer swallow nor spit out anything, the secretions remain in the throat. Without suction, it would move to the lungs causing aspiration pneumonia. In the end, persons with ALS often pass when they lose the ability to breathe and they decide to decline having a tracheostomy and a ventilator being placed. Some would die from choking on their own phlegm if suction is not being performed.

The same condition in various different illness. Only in Alzheimer’s where feeding tube is being discouraged. I really do not understand why.

I have done a full video on the article above. Below is the video which is available in my YouTube channel:

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