Living with dementia
Personal experiences of living with dementia
Alzheimer Uniti tells Paola's story
The story of Paola
This is the story of Paola. Three years ago, at the age of 63, she was diagnosed with Alzheimer’s Disease. She found her way, alone, to Alzheimer Uniti Italy’s offices in Rome to ask for help.
“They say that I have Alzheimer’s Disease and I don’t know what to do. My husband does not even know that I am here in your offices today. I read about your organization in a magazine. Can you help me?”
Because of the unusual way that Paola came in, the Association contacted her daughter (who also did not know about her mother’s diagnosis). Together, they arranged for Paola to attend the Day Center. Paola has been attending the Day Center now for 3 years.
“I love coming to the Centre. It cheers me up. I tell everyone that I am coming to school. I try not to miss even a day. The bus picks me up in the morning and drops me home at the end of the day. I even enjoy the bus ride and like to help my fellow passengers on and off of the bus, reminding them of their stops.”
The Day Centre provides physical, occupational and cognitive therapy through different activities such as art projects and music sessions.
“I enjoy all the activities. We do art projects and dancing sessions. One of my favorites is music since I particularly love to sing - especially pop Italian songs from the San Remo Festival.”
“We have had three months of violin lessons too. I really loved those lessons – holding the violin, learning to hold a bow and playing along with the music teacher. I tried to remember the names of the parts of the violin and would write them down on little pieces of paper, put them in my pocket, and look at them again and again, to try to memorise the names. I never thought that with this disease I would ever be able to learn something new again!”
“Recently I had to have a small surgical procedure but I made sure that I could return to the Centre as soon as possible. I did not want to miss even a day.”
Paola has become a leader in the group. She is protective of other patients who are in a more advanced stage of the disease. She helps them in physical activities and also speaks on their behalf when they have trouble finding the right words or expressions.
“I have written three letters to the doctors, therapists and staff of the Day Centre, expressing my appreciation. I have written the letters myself, at the computer.”
Paola’s husband is her main caregiver but has some trouble accepting his wife’s condition.
“My husband is very kind and he showers me with gifts, especially clothes and perfume. He likes me to look elegant and fine. I get my hair done regularly at the hairdresser and like to wear cheerful and bright colours. Dressing nicely and looking good cheers me up! My husband does not come to the Day Centre and he does not want me to be photographed. I feel sad about that because I would like to be photographed and video-taped when we do special projects that I am proud of. They even call me “super Paola”. But my husband is a good man and I respect his wishes. He is a good husband.”
Paola’s daughter is now quite involved with the Alzheimer Association and Day Centre, regularly attending the support sessions for family members. It was Paola herself who brought in the membership money and signed her daughter up as a member of the Association. Her daughter had originally been upset with the way that her mother was informed that she had Alzheimer’s Disease.
“It was a cruel way to tell someone that they have Alzheimer Disease. He told my mother that she had the disease and then just sent her on her way, with that diagnosis. The doctor did not even offer her any suggestions of treatment or support. Thank goodness that she found this Day Centre!”
Paola talks readily about the disease.
“I think that we should spread the word about Alzheimer’s Disease since people should know about it. They think that something is wrong with us, that we are fools, and do not understand that this is a disease, like other diseases.
“I like to go to events such as the annual World Alzheimer Day Convention in Rome to give my support by my presence there. I have been to each convention for the last three years. But I do not like to speak in public. I go with my sister or with my daughter.
“I read the newspapers, looking for articles about the Disease. There was one recently in the newspaper La Repubblica which was great. They need to raise awareness but I also hope that they find a cure. And I hope that they will let me know as soon as they do!”
When asked about life at home, she says,
“I no longer cook nor tidy up the house like I used to. And I am no longer comfortable taking my grandchildren to school since I am worried that I might get lost. I find that I prefer to stay home more and more. It’s sad but I feel that I can’t lose heart and that I must simply carry on as best as I can.”
Last Updated: Monday 19 March 2012