In this article, I would share on the perspective of someone who have looked after my mom who have Alzheimers and is placed on tube feeding. I am not an outsider looking in but someone who is directly involved in the caregiving, accompanying my mother all the time in checkups and hospital stays. In other words, I know what I am talking about and I am not a researcher who published paper basing on observation and logical reasoning. I feed, bathe, do phlegm suction and change diapers for my mom.
I would share what I know and in the end, I would leave it up to you, the reader to decide on what is right. I am on this journey with my mom for more than 18 months. I’ve had no regrets and I am grateful everyday that I am in Thailand where I get the support to be able to continue to care for my mom in the best way possible.
Change in the past decade
When my mother was placed on tube feeding, I started doing a lot of research on the internet on this method. What I find is that originally, Alzheimer’s/dementia patients are placed on tube feeding, because it is what we would do for anyone who is unable to swallow on their own which exists in other health conditions like stroke, motor neuron disease, side effects from oral radiotherapy, etc.
In the past decade or so, there were a few notable doctors and researchers that suggested not to place dementia/ Alzheimer’s patients on feeding tubes. They mentioned that to continue feeding tube is to make them suffer and that if the feeding stop, they actually do not suffer.
Then slowly, these studies influence the medical practices and now, years down the line, it become an ‘acceptable’ practice. I know through the online support groups that I am in that in the West, the moment someone have a parent with Alzheimer’s who is not able to swallow, they would at first try to do hand feeding and if that does not work, hospice would be brought in to start the end life process.
Hand feeding would not work at end stages
When the person with Alzheimer’s started choking on food and drinks, naturally they would reject any feeding because it brings pain. If you have ever had food or fluid going down the wrong track (ie to the lungs), you would know how painful it feels when you have to cough out. So it is the same, it is going to get harder to feed them.
It was the same for my mom. First time my mom was in ICU when she was dehydrated and malnourished even though outwardly she was still eating on her own but the doctors told me based on blood test, what she was consuming on her own is no longer enough to sustain her life. The 3 specialists from that hospital, who have been my mom’s specialist doctors for about 2 years all suggested tube feeding. After she was discharged, I tried hand feeding, ie blending all her food into puree and feeding her via a spoon and when it did not work, I used a glass syringe to squirt in small amounts.
But it was not enough and after about a week, we took her to doctor as her bp could not be read. She was wheeled straight away into ER where she was hospitalized in critical condition. The hand feeding mehtod did not work because it also increases the danger of her aspirating on the food as her swallowing reflex is already compromised. The doctors (this is now another hospital) also told me she require a feeding tube to survive. It was June 2021 when she was fitted with the feeding tube.
Why I think the research is skewed and does not paint the real picture
These researches are done in the West where most of the patients sampled are from nursing homes. Actually frankly speaking, if a person sends their parent to a nursing home and hardly go to visit, it is akin to saying goodbye. They should not be surprised if there is a rapid decline in their parent.
In nursing homes, there is a huge shortage of staff. My friend once worked in a nursing home in Australia and she said what the documentaries showed is very true. You have 1 staff to 20 residents. They are working on a very tight schedule and rushing to complete all the tasks.
Even if assuming there is no shortage, from my years of caregiving and in accompanying my mom in all her hospital stays, I would say no one is going to feel same love and care as what you feel for your parent. To the staff, it is just another headcount or patient. To you, they are someone who gave birth to you, changed your diapers, fed and educated you, be there for you when you are down….. in other words, they are someone special to you. Because you both shared a bond and a long past together.
To expect a staff (who in this line frankly are often underpaid and overworked) to have the same feeling for all patient, it is totally unreasonable. If the staff have such a strong overflowing feelings of empathy and love, their energy would be fully drained and they would get emotional and unable to function. Please remember when you pay tonnes of money, it is to the organization. The staff is probably getting just minimal wage.
Once your loved one is placed on tube feeding, they would need much more care and looking after. A stroke patient or someone with motor neuron disease on tube feeding still have cognitive function and know what is going on. They would not thrash or slide down after feed just because they feel like lying flat. But an Alzheimer’s person who do whatever the heck they wish to would slide and move if they feel like it.
They need to be checked where stomach contents are drawn to see if they have digested their previous feed before we can feed them. If they have not digested and we feed them, it may cause them to vomit and aspirate. And when you place the feed, you gotta stick around with them. When they cough, you gotta stop the feed and make sure they are in an incline, pat on them a little and wait for a while. Then continue the feed and monitor.
After the feed, you gotta stick around too to make sure they do not slide down and lie flat. Because if they do, the food can move upwards and go into their lungs causing aspiration pneumonia. My mom’s last feed is around 11pm. It takes about 30 min to an hour for the feed to finish. After that, I have to wait for about an hour before I am able to sleep. So the earliest I sleep is at 1am.
In a nursing home, where the staff got time to do that? We need to be realisitic. So without proper monitoring, it is very easy for them to aspirate. Sometimes after the feed, if no one clears it and forgot about it, the feed would get stuck and harden in the tube. So you really require a dedicate person.
In a way, the results that suggest no improvement in lifespan when placing on feeding tube is true if you are basing the studies in abandoned old folks in nursing homes. Because once they are placed on feeding tube, they require more care and someone need to be there to watch them to make sure they do not aspirate.
In Asia, where our values is to look after our parents in their old age, the situation is very different. Adult children who have to work would employ a maid to look after their parent who require full time care. I know a few households actually employ 2 maids, one to handle the cooking and cleaning, and another to just look after the parent. Some, like me would quit their job to look after the parent full time.
Now that I am in Thailand with my mom, I feel really fortunate because the healthcare system here is on board and aligned with elderly care. If you are willing to care for your parent, the doctors and nurses would do all they can to educate and teach you. Even in YouTube channels in Thai language run by hospitals and caregivers, they provide so much of tips on caring for the elderly. Many people who are caring for their parent at home with tube feeding even know how to change the nasogastric tube on their own, and cook and prepare their own tube feeding food using fresh ingredients. Some have their own YouTube channels where they teach and share with others.
What I intend to do is to gradually bring the knowledge out and share what I know. I have updated a lot in my earlier post about my 18 month journey after my mom was placed on a feeding tube. In total, I have left the corporate world for more than 5 years to be her full time caregiver but it was since June 2021 that she required a feeding tube.
Does Feeding Tube enhances quality of life of Alzheimer’s/ Dementia patients who no longer could eat on their own?
In my experience of caring for her, I would say wholeheartedly that a feeding tube enhances the quality of my mother’s life. It not only extend, but it enhances. My mom used to be a picky eater even before she require a feeding tube- she always loved cakes and biscuits and refused less tasty but nutritious food. Now with tube feeding which is sourced from the hospital that is formulated to meet her nutrition needs for the day, my mom is getting good nutrition.
I no longer need to coax her to eat. We could stick to a feeding schedule as provided by the hospital. Basically each time before feed, we need to draw their stomach contents to ensure all or most of the previous meal are digested (you may watch a video to see how feeding is done on a real patient, published from a Thai hospital YouTube channel). If she has less than 50ml of fluid left in her stomach, I could start my feed for her even when she is asleep.
Previously her blood pressure and cholesterol were not under control due to her appetite for cookies, cakes and desserts. She was also moving towards being a diabetic because of her sweet tooth. Once she went on tube feeding, her diet were adjusted and now, the feed prepared by the hospital is for diabetic persons without sugar. From this diet, her blood sugar and cholesterol went under control. Lately her blood pressure had not been stable but it is mostly on the lower end rather than very high previously (despite taking medication).
With getting sufficient nutrition from a well balanced diet, which is prepared from the hospital’s nutrition department using fresh ingredients, my mother’s mood become better, she is jovial when awake and her liver cirrhosis from hepatitis B went under control.
However, the main point is that with anyone bed bound and is on tube feeding would require more care and monitoring. In Alzheimer’s/dementia persons are usually active, they have lost cognitive functioning to listen to reason, nor remember what is being said…. hence we need to be able to watch over them during and right after feed. If they slide down and start to lie flat we need to prop them up again. Main purpose is to reduce the risk of food going back upwards in reflux and into the lungs which can potentially be fatal as it would cause aspiration pneumonia.
