What I know about Alzheimer's disease

Maybe it is time to sit back and review the little I know about Alzheimer’s disease. It is a brain disorder first reported by a German doctor, Alois Alzheimer, in 1906, when he discovered it in a patient, a lady referred to as Auguste D. She died that same year. The brain contracts, gets messed up with tangles and plaque, which mess up the patient’s memory, ability to socialize, to speak — it messes up everything.

Alzheimer’s disease is what doctors call a regressive disease. The brain first messes up and simultaneously slowly rewinds until finally the patient curls up in a fetal position, refuses to eat and drink and dies. If God is kind to you, you don’t have to go through the full process. Maybe the patient will die earlier. His or her heart could stop. She might get pneumonia and not recover. But the worst is to die of Alzheimer’s disease, to regress back to your fetal position and die. That’s the worst thing for me anyway.

That’s the medical view. Let me share with you my view as a daughter whose mother has Alzheimer. What do you do if you find out your parent has it? First, research on the Internet about Alzheimer. I’ve done that but I must say it is incomplete. It doesn’t speak of the grief the family goes through just trying to understand what is happening to his or her parent.

First, there is no standard set of symptoms. I remember my mother began to label everything inside our refrigerator maybe 18 years ago. I asked her why. She said because she was beginning to forget what was in the containers. That was around the time I took my first Jung seminar, around the time I met a few therapists and one of them told me, “Be careful. She may have early Alzheimer’s.” I stored that comment somehow. Then we lived in a four-generation household. There was my mother, me, my daughter and her son.

A few years passed. One morning my mother demanded that I throw my daughter out of the house because my daughter had answered her back. She said she refused to live in Calamba because she could not stand living with my daughter. I bought my lot in Calamba simply because she had told me how lovely the place was and how much she would enjoy living there. Now after I had plans for a house drawn up she said she would never live there because she could not stand my daughter. This was the beginning of her Alzheimer. I realize that now, almost 20 years later.

My daughter and I could not understand her then. Why the rage, the false accusations, the temper tantrums, none of which were based on fact, or maybe for her they were facts? I solved that by sending her to Vancouver, a place where she had lived happily with my stepfather for many years. There she stayed, initially supported by me, then by her pension until her Alzheimer became too serious and my aunt, her younger sister, called me and asked me to take her home.

Now I had to live with her Alzheimer close to me. When she came home, she hated me. I am her only child. She is my only parent. I made her coffee every morning, she accused me of trying to poison her and refused to drink it. I put up a Christmas tree in her apartment to pretty it up. She said it was ugly. She fought with her caregivers, with everybody until in desperation I went to the Noli Center, a home for Alzheimer patients and entrusted her to their care.

First it was a happy home but over time the mood changed with the level of her Alzheimer. Now my mother does not recognize me anymore and doesn’t even want to see me. I am alternately angry and pained, or trying to resign to this. I am working on being resigned though sometimes I just decide to eat compulsively to ease my pain. What can I say? When your parent has Alzheimer’s disease, get used to the fact that he will slowly lose his mind. He will behave like he is crazy. Some are quiet, some are loud, some are violent, others spend the day mumbling or talking. But there is no other way to describe them except crazy, insane, then unable to talk. Then alive and breathing, yes, but already gone from you. It is a disease that is very, very hard to accept.

I receive text from people asking me how much weight I’ve put on because of my grief over my mother. I don’t bother to reply because what business is it of theirs? What do they care if I’m fat or thin? That has no value to them. I am trying to manage myself. Don’t try to be cute with me. I say that publicly.

If your parent has Alzheimer’s disease or if you want to learn more from someone else, go to the next Manila F.A.M.E International exhibit. This year they have a Wellness Center and on Sunday, Oct. 18, in the afternoon, Dr. Rosa Carpio, the owner of the Noli Center, will talk on Alzheimer’s disease. That is the center where my mother is. Listen to her talk and learn to deal with the despair brought to families by Alzheimer.

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Please text your comments to 0917-8155570 and remember, don’t try to be cute with me.