It has now been slightly over 18 months since my mother, who have end stage Alzheimer’s was placed on nasogastric tube feeding since June 2021. I thought of doing an update of how it has been. What I am about to share would relate to tube feeding due to dysphagia, ie losing the ability to swallow. With dysphagia, there comes phlegm problem and surceptibility of recurring lung infections/ pneunomia. Hence it would be useful if your loved one is on tube feeding due to other health issue such as ALS (motor neuron disease) and stroke.
Mom started to lose appetite and reduced her food intake. She still ate and drank on her own, was able to walk on her own to the bathroom (using permanent steel railings that we have installed from her bed to the attached bathroom). But she was getting more and more incontinent. She did not display any noticable symptoms as she was still behaving like her usual self. Towards the end of May, it seemed she was not passing out urine or excrements.
June 2021- NG tube insertion
I find that her blood pressure was not detectable (view the post together with the video showing how it was). As she had been on blood pressure medication, I took her to the cardiologist whom had been seeing her for the past 2 years, thinking to have her bp meds revised. In the hospital, they used all types of equipment as well as trying to manually take her blood pressure on both arms and calves but could not detect. I told her cardiologist she had been consuming less food and she had hardly any urine for the past few days.
I recall seeing his face change and he immediately ordered blood test. After about an hour, he came back to tell me that my mom’s condition was CRITICAL. Her electrolyte was severely imbalanced and she was severely dehydrated. He told me that the food and drinks she was taking on her own was no longer enough to sustain her life and she needed to be warded in ICU on the same day.
Her cardiologist, together with the gastrologist and neurologist that mom had been seeing from the hospital all told me that my mom had to be placed on a feeding tube to save her life. The recommendation was to start with nasogastric tube and if it did not work, then to surgically place a PEG tube.
We stayed in ICU where they gave her saline solution and other nutrients via IV as she refused to eat. Then monitored her blood pressure levels. As she was not able to communicate, I was allowed to accompany her in ICU. As it was a private hospital, there are cost concerns and when her bp stabilized a little, they discharged her together with documentation so that we can change to a government hospital.
After discharge, I tried my best to hand feed her with blended liquid food (porridge cooked with soup from meat and vegetables). It was hard to get food and fluid into her. She even refused her favourite food, ice cream and chocolate cake. All she wanted was to sleep all the time. I still was able to get food into her but it was only about 500ml of food plus liquid in a day.
When her blood pressure still could not be read, we took her to the government hospital. At first it was just outpatient but the doctor then directed her to be wheeled directly to ER. In ER, they said her condition is critical and they immediately administered saline solution via IV. Doctors told me the same thing, that a feeding tube is required to save her life.
From ER, she was then placed in a common ward but her bed is placed in front of the observation room, facing the doctor’s workstation as her vitals were quite weak. From advice of doctors from 2 hospitals, my teacher and my mom’s best friend (a nurse who have looked after patients on NG tube), the nasogastric tube was placed in my mom. She was warded for slightly more than a week for observation and I stayed with her throughout.
Before she was discharged, a senior nurse came to explain tube feeding. They also have a class taught by a nutritionist on how to cook the tube feeding food, eg ingredients, equipment, preparation, sterilization, storage, etc. As I was a foreigner and could not understand Thai well, I have a Thai friend who accompany me during these lessons.
After that we decided to order the food directly from the hospital. The hospital would prepare the food fresh daily and it is available at 6.30am each morning, 7 days a week (including public holidays) for collection. Each day, someone will help drive to collect the food from the hospital which consists 4 enteral bags of 300 ml of blended tube feeding food prepared from fresh ingredients.
At the same time, my teacher who I am staying with arranged to have essential items such as hospital bed, oxygen concentrator, hand mittens and a wheelchair (previously we were using a transit chair so it has been changed to wheelchair with better stability). By the time she was discharged, her room looked quite similar with a hospital room.
To prevent her from pulling out her NG tube, we cover her hand with specialized hand mittens that was invented by a Thai doctor and recommendated by a major pharmacy in Thailand. I feel the hand mittens literally saved her life.
July 2021- Wheezing
Mom gradually regained strength and energy. However one noticable problem was that she seemed to be wheezing. We took her to ER again in July where the nurse explained that she had phlegm. They did phlegm suction and send us back with antibiotics and anti inflammtories medication. So on the spot we bought a mobile phlegm suction machine from the pharmacy in the hospital. After we bought the machine, the nurse explained to us briefly how to assemble the machine, what is the volume and how to do suction.
I started to learn to do phlegm suction through trial and error. For months, my mom would periodically have choking episodes. Ie out of the blue, she would suddenly start to gasp for air. Her lips literally turn blue and her eyes start to roll upwards right before my eyes. It was terrifying to watch and it kept me up at night. I also did not dare to leave the room much because the choking episodes can happen anytime. When it happens, I have to quickly raise her up to a sitting position, immediately put on oxygen and start to hit (with a curve palm and not hard as her bones may be brittle) her back.
Then I would immediately start phlegm suction and because she was coughing so hard out of reflex due to unable to breathe, the secretions are raised upwards and I was able to suction out a large volume of fluid. This choking episodes average about once every week or two weeks. In support groups of other people with swallowing problems such as ALS and stroke, I also read the same challenges, ie dangers of choking (by May 2022, I learned deep phlegm suction and with that, the choking episodes were minimized- read more below).
February 2022- fall with nose fracture
One day on end of February, mom had a fall. I could not catch her on time and she fell flat on her face and was bleeding profusely from her nose and mouth. I was so terrified- and we rushed her to ER. They did immediate scans and thankfully she suffered no concussions but incurred nose fracture on the left side of her nose. The right side did not incurr a fracture probably because the NG tube cushioned it.
I considered it a miracle and I am very grateful because even if an ordinary person was to fall, it can easily cause their skull to fracture.
She was discharged after almost a week. During the hospitalization one day she pass out huge huge amount of extremements. After that, she stopped being able to poop on her own from then on. I have been doing enema almost daily since then to help clear her poop (it has to be done daily because it is hard to incorporate fiber in NG tube feeding as it can block the tube. Hence, the feaces would harden and if not done daily, it solidifies into a huge lump which make it very painful for them to pass out).
April 2022- She almost did not made it
She started wheezing which got progressively louded and went literally non stop. During suction, phlegm colour turned yellowish and greenish but she had no fever. Took her to ER for the doctors to check after the wheezing did not cease after suction.
From Xrays and blood tests, the doctors told me her condition was CRITICAL. She has to be hospitalized but I needed to be prepared for the worst as her condition was bad as Xrays showed that the infections in her lungs were severe. They started her on IV antibiotics immediately. I was allowed to accompany her as a caregiver but needed to take ATK test to clear me of covid. Once I stay with her, I was not allowed to leave the hospital to ensure I do not contract the virus from outside.
Her wheezing still continued. The doctors kept trying to explain to be to be prepared for the worse and they even get a palliative nurse to come and had her bed changed to anti bed sore bed. I asked to transfer to a private room instead of common room as I was worried about infection.
The doctor told me that somehow, my mom was not coughing out and there were a lot of secretions that were stuck in her lungs. The secretions now causes infection. Regardless of how much antibiotics is used, it is useless if she cannot get the secretions out. Phlegm suction can only suction out whatever that is out of her lungs but they cannot directly go in to suck what is in her lungs. She said the wheezing would cause my mom a lot of suffering and make her very exhausted.
Visitors are not allowed and I was literally cut off from support from those familar to me. So it was terrible terrible time to have to say goodbye. Nurses and the doctor often come in seeing my eyes were wet with tears.
I begged the doctor to do what she could. The doctor was real compassionate and she did whatever she could. Aside from antibiotics, she also got the nurse to put in the nebulizer for my mom on frequent basis- ie almost continuous dosage of nebulizer, followed by frequent suction. She also got the physiotherapist to come in to do exercises to attempt to push the fluids upwards so that hopefully it could exit the lungs and get suctioned off. Still, she was realistic and always tried to manage my expectations….that I needed to be prepared for the worse. She said my mom’s problem was she could not clear the secretions from her lungs through coughing it out. If she could cough out, then only they can get the secretions out and the antibiotic treatments could work.
One day in early May, the doctor came in with bad news. Blood test was showing that infection is moving to her blood and once it moved, it would be sepsis…which marks the end. She wanted to start morphine treatment to ease her suffering.
I begged the doctor to do what she can to try to save my mother’s life. The diagnosis honestly was a huge shock since my mom showed no noticable signs of distress. In fact, the day before the doctor told me her condition the bad news, my mom was cheerful and joking in her baby language but she was still wheezing. I was literally crying on most time of the day as I was totally unprepared. All I could do was to pray and draw in the power of the goodness of what my mom and I had done, and hope that she would be able to get through this, and if not, then may she be guided to a good place.
My mom had been started on the morphine treatment. But they continued the existing treatment- ie frequent nebulizer, suction and once a day physio massage.
Then just as things were looking hopeless, a MIRACLE happened. The nurse was doing suction as per normal after the nebulizer completed. I saw a huge piece of tissue near her throat and told the nurse. The nurse quickly pulled the tissue out. If you wish to see how the issue looked like, you can click on this page– warning, it is not good to look at so I placed it separately in another page).
It was a HUGE piece of yellow colour skin like sustance which likely is from a piece of hardened mucus or phlegm that dropped off from her mouth and throat, then got lodged in her air passageway and when not suctioned out, it goes into the lungs. When the size is big enough, it blocked the secretions from coming out of her lungs. The secretions and fluid, being trapped in her lungs become infected by bacteria resulting in pneunomia.
After the first piece came out, there were another 2 smaller pieces that were suctioned out in the span of a few days. With the piece out, and she was coughing, the second course of antibiotics was able to work to control the infection in her lungs. Daily frequent nebulizing, suction and once a day physiotherapy continued.
How it gave me hope when the doctor came in and started to ask if I have suction machine, oxygen concentrator at home. When just few days ago, she told me that it is unlikely my mom would make it out alive as bacteria infection was spreading to her lungs. She got her best nurse to come to teach me to do phlegm suction. The nurse explained and then got me to do it a few times while she watched. The senior nurse also got a technican to come in to teach me how to put the nebulizer on my oxygen concentrator machine and administer it to my mom (because the ward uses the nebulizer which was attached to the wall outlet which was different from my machine). The nurse also told me that it is through experience and listening to the patient that they can gauge if the patient had a lot of phlegm and require suction.
After about 3 weeks of being hospitalized, my mother was discharged. With deep suction, done each time before her feed, and also on ad hoc basis if I detected she got secretions (but must be done 2 hours after feed), it brought the choking episodes to a minimum. It did happen once or twice but it was not as serious as previously because there were no huge mass of hardened phlegm and mucus lodging at her air passageway.
AUGUST 2022- COVID
During beginning of August, I took my mom to ENT to clear out nose and ear wax. She may have been exposed to the virus during the visit because about a week later, she started showing symptoms of pneunomia. Again, she had no fever but just a lot of secretions that are yellowish in colour. Despite doing many times suction, she continued to have a lot of fluid. So we took her to ER. They did a ATK nose swab test and she tested negative. Then the nurse did phlegm suction for her.
The doctor said that her lung Xrays are not looking good and mom have to be admitted. The doctor also ordered a PCR test to do blood culture to confirm if she had the virus. PCR came back positive. As her caregiver accompanying her, I was tested via ATK and my results were negative, hence I was allowed to stay with her.
We were warded in a specialized unit that handles only covid patients. The doctor administered antiviral and after about 5 days my mom was discharged.
SEPTEMBER 2022 TILL NOW
Mom continued to be scheduled for medical appointments. Her main doctor would see her once every 3 months but he mentioned to bring her to ER if she does not look right. Symtoms to look out for are:
- volume of phlgem and mucus increases a lot despite repeated suction, and/or
- mucus and phlegm change colour to yellowish or greenish, and/or
- she had very low energy levels and not responsive
However, he also mentioned that my mom is already frail and old hence he is not in favour of having her hospitalized if we are able to look afer her. He did suggest a PEG and tracheostomy as with a trach it would make suction easier. But my mom has Alzheimer’s and she tend to rub and scratch whenever she felt discomfort so we were not comfortable in having any surgical procedures done on her.
As also shared by the doctor as well as my mom’s friend who have experience in caring for bed bound patients on tube feeding, lung infection and pneunomia are something the caregiver needs to keep a close lookout for. I am constantly by her side and always have a ear out to listen to her sounds. The moment I hear the secretions, I would proceed to do suction.
In total, I have been my mom’s full time caregiver for more than 5 years. With the last 18 months of her being bed bound hence aside from suction, there is bed bath, diaper change, physio exercises to move her limbs, feeding and keeping her area clean, as well as doing what I can to make her comfortable. Hopefully in future I would be able to share more of my experience as it not only applies to Alzheimers but any persons who are on tube feeding.