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Forgetting but not Forgotten

August 12, 2009

One of the most beautiful opportunities in life is to be able to sit down and tell your story. As women, we have not always shared our stories beyond our friends and relatives. Now that we have that opportunity, we must continue to recognize that not every woman may have the capacity. She may have the opportunity, and it is because of someone who cares.

Two words…elderly women. One word…Alzheimer’s. All of a sudden her knowledge and experience become erased. She will now be known as a statistic, a public concern and as a resident in a care-home.

Statistics Canada states that women make up 75% of Canadians living with Alzheimer’s. This is a significant amount of women to forget. This is also a significant amount of women to be forgotten.

Who cares? Families do. Statistics also show that families give the majority of un-paid care-hours, and that women give the most. Who cares now? Feminism does. Or at least should.

Feminism highlights women’s voices in their multiple and diverse standpoints and languages. However, there are still contexts of women’s lives that are not contributing to what we know because they are often forgotten. It is not that they have nothing to say rather it is that it takes a unique form of communication is required to reach what is being said. There are not people specialized or trained in the language of Alzheimer’s. A diagnosis does not even exist.

Attempting to tell the story of someone who is living with Alzheimer’s is a matter of spending time with each individual and experiencing interaction with them. What you may know based on your visit with them today might not have any relevance tomorrow.

One woman who works with women with Alzheimer’s says that these women are like a puzzle where you are not sure what pieces are missing in the game and you don’t know exactly what it is supposed to look like, but you continue to play anyway. You must appreciate the piece that they are holding and stop trying to fit it into a larger picture. Each interaction must be valued and taken as is. Validation is not required.

We as feminists do not assume we have the right to validate when a single mother talks of her experience, or a woman describes her life in a shelter, or a young girl speaks of her eating disorder, or a woman shares her realization that she has been diagnosed with Bipolar Disorder.

Women have the right to talk about the contexts of their lives and must be respected as is, no matter how their voice comes into being.

What makes mental health in elderly women any different? If it is going to be public knowledge that these women are living with Alzheimer’s, can we at least take the time to see their agency and hear their voice from their standpoint?

In my research at a care home in St. John’s, Newfoundland. I spent months getting to know five unique women who had stories and who also happened to be living with Alzheimer’s. One woman paces  the halls counting random numbers. If she did not want to come for tea, she would walk me to the tea room and then leave.   I sang to her once. She sang along and then fell asleep. Occasionally she would use a funny tone that I was unable to decipher. One time I told her that she was a good friend. Her face expressed the most gratitude I have ever seen in my life.

I interviewed her family. I heard similar things communicated to me through stories. She and her husband worked in one of the first local businesses downtown. She was in charge of counting.Her daughter said that if she merely mentioned an interest in something, it was immediately explored. That if she said she wished she knew how to play piano, then there would be piano lessons. She told me of her mother’s sarcastic tone. It was the same tone I had heard from her earlier and had wondered about. She sang in the choir. She told her husband on the day that I interviewed him that she like when she felt his hand in hers.  He told me they were great friends.

I sought her voice first. And I heard it. This is distinct from much of the research that begins with family members as opposed to the women themselves. Instead of mourning the loss of how she used to be, I was able to celebrate how much she communicated to me through her voice, perhaps without knowing. I also learned how to communicate differently. As researchers, we often set the tone for the research, establish the questions and the format and then invite participants into our space of communication. I have experienced beginning in the communicative space of the participant.

It is my intention to write this and to make a contribution to feminist research methods and the contexts they seek to understand.

If you had to sit quietly, as someone told stories about you, would you want them to start with the fact that you have been diagnosed with a “mental illness”? Without proper qualitative research, this is what we, in fact, do.

It is the objective of my research to take the process, the content and the reflections and create an interactive and artistic wall. On this wall I will symbolically represent the communicative space of the women through images and single words. I will express the voices of the families through things remembered. There will be an in-between space that allows for anyone to write or draw in response to the other elements on the wall. Below this space will be a box and below it a sculpture of hands. The hands are the intersection where all spaces can come together. In the box, people can put things that can be lost, for example flowers or teddy bears or cards. The residents can place things in the hands or take things away.

The stories of these women’s lives will not be lost or forgotten and as long as we as researchers and as feminists care enough to listen, neither will they.

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