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My Story- Testimony of a Caregiver

            The caregiver is the only person who really knows Alzheimer's disease. Its not easy dealing with the patient; and this is the reality of the physical and mental deterioration that the patient suffers from day to day. Unfortunately, my mother, Aurora, who is 83 years old, suffers from this disease.

            Before she was diagnosed with Alzheimer's, my mother, my sisters, and I had already noticed that sometimes, she seemed disoriented, but lacking knowledge, we did nothing. A few years ago, she was diagnosed with a severe illness of the coronary artery, and while she was hospitalized, she was completely disoriented. It was at this moment, we realized my mother was sick.

            This took place a few months before my retirement. For me, finding out was impacting and painful. I'd cry and cry (and still do). Then, I'd ask myself: "how do I deal with this situation?" It caused a lot of pain, because the memories I hold of her are of when she was fine, how wonderful she was, hardworking, generous, and gentle. My sisters and I never wanted for anything. She became a widow at 26, took on the role of both father and mother, and never remarried. I am very grateful for all she did for us.

            After retiring, I had always planned to have a happy future, traveling with her. I do, but unfortunately, she doesn't remember what she does. When we go to places where there are a lot of plants, I have to pay attention to what she does. Since she likes them so much, she'll yank them out and take them with her.

            A lot of people ask me what illness stage she's in, which I can't answer, because her behavior varies a lot. Some people who don't know about Alzheimer's disease will tell me: "your mom is a bit crazy". This is painful for me, because they don't understand. Other times, people will offer advice, without knowing much about the disease.

            These are some of the changes in behavior that I've observed in my mother:

  •       She acts spoiled, says bad words, and is aggressive.
  •       She lets the water run all day.
  •       Pulls out the neighbors plants, cleans the front of their houses and tells them they     don't clean.
  •       Says she bought our houses.
  •       Spits on the house floor.
  •       Criticizes everything; everything is dirty and ugly: the house, the buildings, and any surroundings.
  •       Says she's going to buy every house she sees.
  •       Gives away objects from her home.
  •        "Falls in love" with her doctors and believes they are in love with her. She says they tell her she is beautiful and so is her body. She even shows some of them her "beautiful body".
  •       Criticizes obese people; advices them to roll on the floor to lose weight.
  •       If I correct her, she will get angry
  •       When she goes to the bathroom and sees soap, she washes her head and face.
  •       Wants to change her hair color constantly.
  •       Loves skin lotion and when she does have one, uses it till she finishes it.
  •       When her illness was just starting, she'd say we were robbing her.
  •       When her illness was just starting she got lost, twice. She has a bracelet ID, but takes them off.

            When the disease was just beginning, I came across many different emotions: anger, aggressiveness, pity, remorse, depression, exhaustion, indifference, sadness, and others. With time, I've been able to deal with these emotions in a healthy manner. The help I've received from the Alzheimer's Association has been essential to make me feel better. Their personnel has guided me towards places I could go to receive help. I live in Puerto Rico and the Oficina de la Procuradora de las Personas de Edad Avanzada (Administration on Aging), provided help for the care of my mother; and the Programa de Actividades y Servicios Múltiples para Personas de Edad Avanzada del Municipio de San Juan (Administration on Aging's Center for Multiple Services in San Juan), also helped me to provide my mother a daily (on working days) lunch in her house.

 





Asking for help was hard at first. I wanted my children to believe their father was fine!

Read Marta's story