Alzheimer’s and Tube Feeding | 6 months update

Dementia

My mom who is having end stage Alzheimer’s has been placed on nasogastric tube feeding since end of June 2020. I have done an update in a YouTube video end of last month:

In the beginning when she was placed on the nasogastric tube during her hospitalization, the doctors were not too optimistic. Due to her bad vital signs (low heartrate, undetectable blood pressure, severe dehydration with existing health condition of diabetes, cholesterol and liver cirrhosis), doctors said there may be a possibility her organs may reject the food and if that was the case, there was nothing much that could be done.

Note: For Alzheimer’s/dementia, PEG tube is NOT recommended because it is surgically placed and they would have the tendency to rub against the area when it is not comfortable resulting in wound, dislocation of the tube or infection. Whereas for nasogastric tube, if they pull it out, a new one could be reinserted.

To prevent her from pulling out the tube, the doctors and nurses used hand restraints and later when she was able to pull out the tube with her fingers, they placed a DIY hand mitten on her. That was when I realized about the hand mittens.

Due to covid, the hospital advised against having her in the hospital for too long. She was discharged after 8 days. During that duration of her hospitalization, our room was cleaned and cleared and we got the new equipment necessary to help care for her. A hospital bed, oxygen concentrator and other items like diapers, tube feeding items (eg glass syringe, cups, medicine pestle).

After about few days of being discharged, we noticed she had a lot of phlegm and she was wheezing very badly. We took her to the ER and phlegm suction was performed and she was given anti inflammatory medication for 5 days. We also bought a phlegm suction machine to do phlegm suction at home.

The wheezing went off with the anti inflammatories. I had suspected it could be injury sustained during her second nasogastric tube insertion (as she managed to pull out the tube the first time, and I was there when the nurses did a reinsertion where 5 nurses kind of forcibly held her down while one did the insertion. The process took 20 minutes instead of the usual 5 minutes).

Actually, I learned that we need not force them…..we just need to reassure them and coax them, ask them to do the swallowing motion as the tube is inserted. In subsequent Ryles tube insertion, I was by my mom’s side and would coax and reassure her. The insertions have always gone smoothly. There was no need to force or distress them.

The hospital provide catering for tube feeding food because there was a huge demand for it. Even though we stay in an outskirt area in Thailand. each day the hospital had to prepare 2 huge trolleys worth of tube feeding food to cater to the demands from the wards and people who ordered it. Each morning we would go to the hospital to collect the food which comes in 4 enteral bags (if not consumed immediately the bags need to be refrigerated and have to be consumed within the same day).

Initially my mom’s digestion was no good. Food takes a long time to digest and sometimes, even not digested after 5 or 6 hours. But after 2 or 3 weeks, her digestion slowly improved and her bowels regularized. She started to regain strength, her energy levels come back and light came back to her eyes.

The main challenge we had was with her phlegm. I had to learn to do it to prevent her from choking on her own phlegm. Initially, I was terrified of hurting her and she was not cooperative. Sometimes I could not locate and extract out the phlegm.

But with practice, I become better at it. I also learned to listen to her throat sounds and if she had a lot of phlegm, I would do phlegm suction (but it needs to be done at least 2 hours after food or right before the next meal). Few times, she had started to cough but after 2 or 3 days of doing phlegm suction 2 or 3 times a day, she stopped coughing. Hence if I feel phlegm suction can help to prevent aspiration pneumonia too.

Update after 6 months

Her daily tube feeding food were made from fresh ingredients, prepared hygienically and ingredients are dietician approved. As my mom had high blood sugar, the hospital could also provide the diabetic version of the meal. Her blood sugar has gone down from over 200 to 150. Her digestion is now very good.

She still like to spend a lot of time sleeping and lying flat on her back in the bed. But she would have periods where she is awake and actively moving on the bed. As I am in the room with her most of the time, all the audio recording for the videos are done in the room. And in many of the recording, you would be able to to hear the sound of her talking her ‘baby talk’ or sound of her using her mittened hand to hit against the bed railings.

Her mood levels were very much different during the time when she was dehydrated and malnourished when she could not swallow. As her Alzheimer’s progresses, she had become more picky about food- like a child, she would eat what she wanted and ignored food that she did not like. And we all know that generally nutrition dense food are not delicious. She would insist to have her cakes and cookies but do not really like to eat her rice porridge (we boil the porridge with soup for nutrient) or noddle soup. We can make a child eat nutritious food but we cannot make a person with Alzheimer’s eat what they don’t like.

When she had dysphagia (could not swallow) and we started her on tube feeding, the food that goes through the tube are nutrition dense food. I would stay the food is better than what she was consuming previously (because of her picky eating habit) when she was eating by mouth. That is why her blood sugar immediately went under control.

People may feel we are prolonging their suffering when we place them on tube feeding. Someone left a comment in one of my video, saying that they chose hospice because their uncle who had Alzheimer’s and no longer could swallow also had seizures, heart, kidney failure and covid.

But if the person is otherwise healthy, with tube feeding we can definitely extend and improve the quality of their life. Provided we are willing to dedicate ourselves into caregiving. Tube feeding would not likely to work if they are placed in an assisted living as there would not be sufficient manpower and one-to-one care to look after them.

We need to give almost round the clock care. With tube feeding, we have to put the hand mittens which would make them more bed bound. So we have to do bed bath, diaper change and to care to prevent bed sore, lift them when they slide down to prevent aspiration pneumonia. I also learned to do bed bath, diaper change (where I would wash her during her diaper change to prevent UTI and sores), learn to lift and do transfers (bed to wheelchair and vice versa).

I spend almost all my time in the room with my mom. As her condition stabilized, and my body got used to the schedule and regimen, I utilize the spare time that I have to write blog posts and do some videos. Writing and sharing has been something I have enjoyed doing for many years. As a caregiver, learn to find joy by picking up on a hobby or activity that you love.

You can watch the playlist or view my article series in this blog.

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