Navigating Oblivion: Caring For Someone With Alzheimer’s

The decision was not easy. In previous years, the internal struggle between guilt and the search for a better life for all members of the family was arduous. The voice of her conscience still reproaches her.

She remembered difficult moments in which her mother got over the pain. Her determination to bring her daughter forward, pushed her to fight harder. It didn’t matter what he had to sacrifice, as long as he gave her everything he needed, and maybe more. Likewise, she struggled to help her mother navigate into oblivion until a decisive moment told her which path to take.

Years before, when her mother was diagnosed with Alzheimer’s, all the relatives and close friends supported them both; they knew that what they faced was not simple. But they had the firm intention of fighting together to the end. It is true that they knew little about this disease. They knew about the forgetfulness, or the people who lived in the past, but they did not imagine all the stages that this disease entails:

1. The first thing that goes away, are the words.

His mother began to forget how to express herself. To ask for something she gave a complete definition, because the right word had escaped her mind. Many times she spoke of situations or people whose names she forgot, despite being an important part of her story. Afterward, she felt confused and depressed, or anxious and upset for days, at not being able to remember those previously familiar names or places.

2. “He took the lock, locked the keys and secured oblivion”

In the next stage, however, he went from forgetting words to forgetting the functions of things. His question was not, “Where did I leave the TV control?” But, What is this thing in my hand for? Sometimes he would try to go back to reading that he used to enjoy before, but it was very difficult for him to understand what was written in books. The words in the heading define this stage. They were pronounced by Aurelia, an Alzheimer’s patient, who has to memorize the steps to close her door, as we can see in a short film made by her granddaughter in her honor.

3. “I can’t find the light”

Later, his confusion was great. Her sleep schedules changed, she dozed during the day, and at night she could spend hours walking or moving things around the house. Family members took turns getting her back to bed, which wasn’t easy. She needed help dressing, forgetting how to do it. At that time, her youngest son was learning to fasten his shoelaces, so it seemed as if they were both on the same road, but in different directions. One was moving toward knowledge and she was moving toward total dependence, like a newborn.

4. Lost memory, in a tangle of confusion

The next stage got more complicated. Although there were better days, others were very complicated. Her mother imagined non-existent situations. She bothered thinking that they wanted to harm her. She tried to hit everyone with her cane, or yelled for help by not recognizing them. During this stage it was necessary for her love for her mother to sustain her patience to be able to be calm, in her moments of confusion. One day, before his disturbance, the little eight-year-old son began to sing a lullaby, which his mother sang to her when she was little and then she sang to her children. She calmed down until she curled up on the couch. That day they understood that she was just confused and scared, like everyone else, but she did not know how to handle her emotions.

5. Back to top

In the last stage of the disease, there was no more communication. Her mother stopped talking and forgot basic functions like feeding, going to the bathroom, and even walking. Her body just wasn’t responding. It turned, as I said before, just like a newborn. It was at that moment that, crying, she had to accept that it was impossible for her to handle the situation by herself. All of her mother’s illness had somehow relapsed on her. Her mother had taken the necessary care at home, however, she had forgotten herself, so her health was reduced. After a stay in the hospital, she resolved to take her mother to a nursing home, where she would be well cared for.

The decision cannot be judged. Each situation is different, in the same way that each Alzheimer’s patient suffers from different symptoms. It was not an easy decision, nor was it liberating. There are days when you feel guilty. But at the same time, she knows that the entire family did the best for her mother, beyond the limit they thought they had. His mother at that time needed specialized care and every day she receives a visit from one of them, even if she does not recognize them anymore.

The learning that this experience left them was a teaching of love, of patience, but above all of struggle to get the family forward. In Latin America, 80% of Alzheimer’s patients are cared for at home. This entails a great financial and emotional drain. That is why the family needs help. If you live in a similar situation, look for support groups in your area. As Dr. Yaneth Rodríguez-Agudelo advises, “Meeting with a counselor or psychologist gives you the opportunity to take care of yourself and ask someone else to help you improve your skills in caring for the patient.”

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