“Today I’m your best friend from high school we talk boys, class and the anxiety about taking the test in chemistry. Yesterday I was your sister and you were turning 21, we dance in the living room to your favorite 60’s music and laugh. A week ago, I was the someone you disliked, you cursed at me and yelled, fought me on taking your medication. But three years ago, I was still just your daughter and we were just starting to understand the reality of memory loss, dementia and Alzheimer’s.” – Anonymous
6 million people in America are living with Alzheimer’s and Dementia. The disease is the hardest on all those a part of it. Unlike other diseases these diseases impact the core of who we are, our memories, our ability to connect to our own, to be present. Growing up my grandmother had one of the sharpest memories, she was often quiet but when you spoke with her she would recall the events of decades prior. At the age of 87 my grandmother started to experience dementia, this is pretty late but within 3 years it progressed rapidly. By the time she was 90, her memory was faint, she only knew my father’s and my mother’s name the rest of us were “bhai” and “ben” Gujarati terms for brother and sister. When I visited home and was around her, she only saw the younger version of my mother and that is who I pretended to be because it seemed to lessen the stress for her. She had been constantly worrying about being wrong, of hurting someone, forgetting and I wanted to lift that burden. My brother did the same when he visited and we all worked to make it so she did not feel the pain of her disease, we would bear it for her. I watched her fade away, and in the end all I wanted was for her to be at peace.
The caretakers of Alzheimer’s and dementia patients carry a different kind of weight. The stress is something hard to explain, because in fact you’re losing someone in slow motion. Every day a piece of them disappears. According to the Alzheimers Association 83% of the help provided to individuals suffering from this disease in United States comes from family members, friends or other unpaid caregivers. It is a struggle to care for the ones you love without feeling supported, or not knowing what to do. Many caretakers describe the emotional taxation and drain that they take on as being on a never ending rollercoaster. These same caretakers note that they feel that others outside of their family would not understand, or that they would be abandoning their loved ones to a system that is lacking in resources.
How can we help with some of these burdens? What in-home resources can be provided, or tools used to cope with this illness that impacts so many? The Music and Memory organization introduced the connection to music, sound and memory. The connection is not a novel notion, in fact we all experience it to some extent over our time. Let us experiment, think about music you heard growing up, any song will do, play it, as the song plays notice whether or not you remember the words to the song, whether or not you’re able to sing it, even after not having heard it for a long time. I’ve often thought about why I remember words to songs, but when studying for exams my memory seems to just not work. The answer is to this question has to do with the way in which music connects to us from a deeper level.
Visual artist Tony Luciani produced a compilation of photography and painting that captured his journey with being a caregiver for his mother. He visually documented his time through participatory caregiving and how it impacted him. His Ted talk addresses poignantly the hardship and some of the deep connections he made with her while she was in his care. He is known for his interpretive realist style and exploration of the themes of nostalgia, memory and aging.
Finding the right care and support when providing care and support can also be hard. Needing a space to allow processing the emotions and the difficult task of being a caregiver is always important. Therapy can be place to allow for that process to help and heal along the same journey.