Does Alzheimer/ Dementia patient experience emotions and feel loneliness?

Through my experience in caring for my mom for the past few years, yes they do. Even though they had stopped being able to recognize us, they would develop a sense of familiarity with us when we are their caregivers and spending time a lot of time with them.

Summary

Alzheimers and dementia persons are like babies…. they are capable of experiencing emotions and they would thrive if they feel cared and loved. On the contrary, if they are often left alone (as in nursing homes), they would wither away quickly.

Case in point: my mother who have Alzheimers

My mom has been non verbal for about 3 years. Last year, she got a tracheostomy done when she was in ICU due to severe pneunomia and collasped lungs…..as it is connected to assisted oxygen, she is no longer audible even though she tries to speak. The hospital policy is that no one is allowed to visit the patient in ICU due to possibility of patients contracting covid and other infections through visitors.

It was the first time in years that I had been separated from my mom. Her condition improved quickly after the tracheostomy as they could now perform deep suction and get the infected phlegm and mucus out as she coughed them out. So they moved her down to the common ward where I was allowed to stay with her.

When I arrive, I was speaking to the nurse to get an update on her condition over at my mom’s bed. My mom’s eyes were closed but the moment she heard my voice, she opened her eyes. I grabbed her hand and she actually squeezed my hand tightly as if she did not want to let go. I could feel tears swelling up…. she remembers me.

We stayed in the hospital for another 2 weeks. I had her moved to the private room (much more expensive) so that she could get better care as her hands and feet were swelling from the IV needles from drips and intravenous antibiotics. I also took the chance to learn from the nurses how to care for my mom now that she had a trach tube and they taught me how to do trach wound dressing and phlegm suction.

It is clear that the tracheostomy saved her life. She is now more alert and open her eyes more compared to the time before the trach. Reason was because without the trach, she had a lot of phlegm, the solidified ones which could not be completely out from oral phlegm suction. The doctors and nurses have been right, I could get the phlegm out easily now she had a trach tube.

Now, when I open the door to come into her room, her eyes would often open up to see. And when she saw I was in the room, she would close it back and go back to rest. I could feel strongly that companionship makes a world of difference. This is coming from my experience in caring for my mom who is considered now with very advanced Alzheimers as she was not able to swallow for the past 3 years and had been on tube feeding.

Do note that in most countries, once someone with Alzheimer’s or dementia could not swallow food, it is considered end stage and a feeding tube is usually not recommended. Even if it is recommended, without proper care, they would not be able to survive. They can live with tube feeding and personally, I could see that my mom experiences hunger and would suffer if she is hungry. I can know easily if her stomach is empty or not because for tube feeding, we have to check their stomach contents via a plunger to see if they still have undigested food before we can feed them. Undigested food cannot exceed 40ml. When her stomach is empty, she would not smile but once the tube feeding started and the fluid started to fill her stomach via her nasogastric tube, her face would look relaxed and she would have a small smile.

Therefore, I disagree with research that say they do not experience hunger. They may not be able to cognitively understand what is hunger but they feel the suffering and agitiation if they are dehydrated and malnourished.

Sadly, feeding tube is not recommended when an Alzheimer patient could no longer swallow as it is claimed they do not experience suffering. There have been cases of these patients saying to their loved ones that they are hungry and thirsty, and family members could see a lot of agitation and suffering on their face even though by then they were actively being managed with morphine.

Even till now, my mom could still respond with a light nod if asked she is hungry.

I have read once of a person (who do not have Alzheimers) who was hospitalized and was heavily sedated with morphine as they thought he would not be able to survive. He did survive in the end and he said that when they were injecting him with morphine, he still felt unbearable pain that were at least 5 times worse but he was not able to tell out. Even though he appeared alright, he was feeling great pain inside his body.

At one time two years ago, when the doctor had thought my mom would not be able to make it due to severe pneunomia, they have started end of life morphine treatment to try to ‘keep her comfortable’ till the end. But I could see that my mom was far from comfortable. She looked like drugged, but she was still kind of conscious and looked very agitated and suffering. That is one of my regrets, that I did not get the tracheostomy done for her earlier because I was so afraid she would meddle with the trach tube, like what she like to do with her NG tube (by trying to pull it out). But she did not try to pull her trach tube out because it would be painful if she does it so she would not. If I had the procedure done for her, it would have prevented her from getting recurring pneunomia and lung infection from phlegm and mucus that could not be suctioned out.

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