Update Dec 2024: In my mom’s checkup, I asked the opinion of my mom’s primary care doctor who have been treating my mom for more than 3 years since she has been on NG tube feeding…. if what we are doing is making her suffer. He mentioned that my mom could rest and able to eat, he does not think my mom is suffering. He said the physical appareance of weight loss is due to the natural progression of my mom’s Alzheimer’s disease. But he told me that when the time comes when her condition deteriorate and there is nothing much treatment could do, he would then revisit this. The caregiver willingness to look after the patient is important. He also suggested that I add one teaspoon of good quality oil, for example virgin olive oil into her meal each time (4 times a day) which would raise her calorie intake. I’ve done as he suggested and noticed my mom is gradually regaining back some weight.
Below is the original article:
When a person has been bedridden for sometime, they would start to grow progressively thinner and thinner despite adequate intake of nutrition. Eventually they would look like bones wrapped with skin, without much layer of muscle and flesh. However with medical intervention and care, it is possible to prolong their life.
For those who had known the person before, they would be taken aback when they see the person, either directly or from a picture. They would think that the person is undergoing enormous suffering with their lives being prolonged and would not hesitate to let their views be known to the caregivers and family members.
I have been caring for my mom full time for 7.5 years, with 3.5 years of her being bedridden. Since about two years ago, my mom had started to lose weight. She goes for her general blood test and medical checkup once every 3 months with her primary care doctor and her blood test results are okay. In fact, her blood test is better than me because we cater for the tube feeding food which the hospital prepares daily. She does not eat any junk or indulge in unhealthy food, like I do sometimes.
Despite checking with the doctor and adjusting the calories, my mom is showing signs of losing weight. As her vitals are okay, with no electrolite imbalance and her previous chronic conditions are under control, the doctor, the nurses and the nutritionist told me that this is muscle wastage as they no longer move around physically, which happens to long term bedridden patients.
Looks can be very deceiving. A perfectly fit and outwardly healthy looking person can be having a terminal illness within their body without knowing as the physical symptoms had yet to manifest. My brother have visited us a few times (as we stay in different countries so he has to fly over to visit) and he had mentioned that many who seemed healthier than my mom had already passed away.
As my mom’s sole caregiver, I honestly do not feel that with prolonged life, my mom is suffering. Except the short discomfort that my mom sometimes had to undergo when her NG tube is being changed, or during phlegm suction, which due to her Alzheimers, she would forget about it in less than 5 minutes. Most of the time, she just lie down and close her eyes in rest and contentment.
If anything, the concern would be if the caregiver is suffering and if there are anyone who is willing to care for them. Because to care for a bedridden person, it requires time and dedication which I have been told that very few are willing to sacrifice for.
If they are not adequetely cared for, then yes, they would suffer. For example, I know of a lady of after a fall, had become bedridden. Her son and his wife were supposed to care for her. Unfortunately, they neglected her badly. She was not fed on time and her diapers were infrequently changed. She was also often not being bathed. As the result, the poor lady developed bed sores all over her body. We usually hear about bedridden ones who get bedsores at their backs and butt due to prolonged lying down but this lady had wounds all over her body due to neglect. In the end, she passed in great pain from the sores all over her body.
I have been told that sometimes when treatment options are being adviced to family members, the doctors would gauge the ability and willingness of the family to care for the patient. If no one is willing to care, or if they do not have the financial means, then the option of end of life treatment may be the chosen decision by the family.
Generally, the patient would wish to live if given the choice
Before Alzheimers, my mom was a very intelligent person, witty with words, good in problem solving and worked as a nurse, serving the poor community. It seemed her worst fear is to be bedridden as she felt it would burden others. She had seen one of her sister who got bedridden from severe stroke….the sister was not able to move any parts of her body except for her eyes and to make some sounds from her throat (could no longer speak coherently). Also, when the actor Christopher Reeve was paralyzed from the neck down, my mom used to feel very sorry for him and said it is so unfortunate and if it was her, she do not wish to continue living.
However, when my mom developed Alzheimers, it was obvious that view has changed. It was obvious my mom had wanted to live because she had continue to surprise the number of doctors and nurses in the hospital the fact she was still alive. When my mom lost her swallowing reflex from Alzheimers and was not able to eat, the doctor had the feeding tube placed but did not expect her to live long. This is because her blood oxygen was low, the electrolyte was severely imbalanced, and her blood pressure could not be traced by all the blood pressure machines and manual taking that the hospital had. They had to take her blood pressure from her calves since that time until now.
Then the inability to swallow caused build up and accumulation of phlegm in her lungs which were too deep to be suctioned out. She had recurrent lung infections and pneunomia ….in which severe ones would require hospitalization about two to three times a year. With recurring infection, one of her lungs eventually collapsed and her oxygen levels had been very low (often below 80) for months. Yet, she was still alive – my mom’s best friend felt that somehow, my mom had wanted to hang on to her life.
The moment she had the tracheostomy done based on the recommendation of the ICU doctor, who noted that my mom’s condition had immediately stabilized the moment she was placed on a ventilator to help her breathe…….and that within 3 days of being admitted to ICU, the doctor said my mom was more stable than most of the patients there. After the tracheostomy was done and they were able to suction out a lot of phlegm from her lungs, within a day, she could breathe on her own and they were able to weane her off the ventilator (they had expected it would take time to weane her off but it took like less than a day).
From this, I could see my mom wanted to live. As her daughter, I would honor that.
My mom had a difficult childhood and life, as she was being sold by her birth mother to an unmarried lady who worked as a live-in servant. While the lady was away for work, my mom was abused and ill treated by the other family members. Basically throughout her life she was made to feel she was an inconvenience and she had felt not wanted. It is not surprising that this had caused her to build up a strong protective shield in her heart to help her cope with repeated disappointments, abuse and neglect.
With Alzheimers, these barriers fall away as the memories fade away and disappeared. Hence the feeling she had as a child that she was someone unwanted which caused her to strongly not want to trouble anyone….. these beliefs fell away. This is the one blessing I could see from Alzheimers, because they are no longer haunted by past memories or trauma. If they are well taken care for, they are just like a contented baby who does not seemed to be bored by being fed when hungry and sleeping/ resting throughout the day.
In Thailand, those around me understand as they themselves are well versed with caring for an elderly parent. If I am causing undue suffering to my mom, the doctors and nurses would have mentioned so.
While back in my home country, many who knew us did not understand….. so I’ve ceased to be interested to update them because each time I do, I would be met with opinions and views….. even though they had not visited us in the years we have been here, neither had they helped financially. I’ve learned not to take things personally, at the same time I also realize that I have the choice to minimize contact as I do not wish to have my energy drained through communication with them.
Conclusion
In summary, what I am trying to say is that most, if there is someone willing to care and they could financially afford, they would likely choose to live. But when their body s wrecked by illness and old age, they could no longer make the call because they would be fully dependant on others to care for them.
The choice is with the family members. They may require round the clock and extensive care, and someone who need to put their life on hold to care for them. If they are sent to old folks home, they would likely not survive for long because usually these places are understaffed and a lot of cost cutting goes into this, especially in developed countries where these places are run by corporations who maximizes profit. If they are sent to the home, they must visit frequently to keep an eye for deterioration of health due to neglect such as bedsores and changes in condition.