Alzheimer’s Sucks

Alzheimer’s is a horrible disease that makes connecting with people who suffer from it challenging. The disease makes it difficult for family members to connect with their loved ones. It’s hard for people to watch their mother, father, relative or friend deteriorate from the effects of the disease. Little by little as the patient’s memory fades it seems like they lose more and more of who they used to be. As the disease settles in, it is hard for family members and friends to visit, and it gets harder to connect with the one suffering from the disease. To help those who are visiting people suffering from Alzheimer’s. I believe that family members and friends should introduce music and singing while they are visiting. I’ll explain.

During the summer of 2015, I worked at Holy Redeemer Health Center, a wonderful medical center founded by the Sisters of the Holy Redeemer. I was working there to complete my first unit of Chaplain Pastoral Education (CPE). I have a passion for pastoral care, and see this work as part of what I want to do as a rabbi. While at Holy Redeemer one of the areas I was assigned was the dementia unit. I love working with seniors. but I was sort of at a loss for how to work with residents suffering from Alzheimer’s and other forms of dementia.

When I would visit the residents, the staff had seated them in a common area of the unit. Many of them were placed in front of the television. The residents had various levels of abilities to communicate, which ranged from speaking to non-speaking and everything in between. Also, some of the residents who could speak, were difficult to understand because their speech sounded like gibberish.

I was advised by the staff, chaplains and the Sisters of Holy Redeemer who were also chaplains to mainly sit and “just be present with the residents,” but I wasn’t sure how to be present. I didn’t know what to do or how to communicate. I dreaded going to the unit, I felt useless and I did not feel like I was helping or accomplishing anything. My training as a rabbinical student thus far had not prepared me to work with people suffering from Alzheimer’s.

One of the things I love about working as a chaplain is the connection I make with people. I could not figure out how to connect with these residents. One of the reasons I love working with seniors is the connection I make with them, and I feel like I get to be a witness for them as they enter this latter stage of their journey. Even though I was struggling, my supervisors and other chaplains assured me that I was doing a great job, but I found working in the dementia unit extremely hard, and I did not feel like I was doing a good job, maybe because my expectations were higher.

Thankfully around the same time, our CPE class watched the film “Alive Inside,” an amazing film about how music awakens people who suffer from dementia. I learned from watching the film that music is a means to help people suffering from the disease. So, I decided to try something totally experimental. I asked all of my supervisors if I could sing and play music with the residents in the unit. There was a bit of hesitation from my direct CPE supervisor, but he was on board as long as the Sisters of Holy Redeemer were on board and the Chaplain supervisor was on board. I bought a travel size guitar (smaller than an average guitar) which would make it easier to carry around in the unit. I also met with the nursing staff so they would know what I was doing. The nursing staff also loved the idea.

On the first day of my experiment, I sat in the middle of the common area of the unit, with my guitar. The residents were around me in sort of an oval shape. I started off singing an old folk song, “You are My Sunshine,” and then I sang “This Little Light of Mine,” followed by “Home on the Range.” I didn’t have a huge music repertoire but these were songs I knew they would know from their childhood. The difference in the residents was quick. Some of the residents sang with me, some just clapped, others smiled and still others just sat quietly. And after I put the guitar away, I would sit and talk with as many residents as possible. I was able to have conversations with most of the residents, even if the conversation was short.

One day after singing to the group I sat next to one woman who did not sing, in fact her head was down the entire time. When I went over to her, I held her hand, and she looked up at me, smiled and said “I love you.”

On another day after singing I met Mary. Mary was always singing every song I sang and sometimes trying to upstage me. On this occasion I sang “Amazing Grace” and afterward Mary and I had a conversation, and we continued to sing. It was amazing listening to her talk about her husband, where she lived and where she thought she was (she thought she was on vacation). I learned from my conversations with Mary that she was once a singer and a music teacher. During the conversation we got up and walked around, and we sang more songs. Singing songs with her let me into her mind, and I was able to learn more about her. For a brief moment in time, Mary let me into her memories and just as quickly as she let me in, the moment was gone, and she was lost again.

I spent that summer with many residents like Mary, and I witnessed how music and singing songs can bring them alive. I was assigned the dementia unit with very little guidance on how to be a chaplain to people suffering from the disease. In the beginning I hated working in that unit, but by the end of the summer, it was my favorite place to work in the medical center, and I hated leaving.

Music plays a such a vital role in our lives. Every time I hear a song from the 80’s, I am immediately transported to high school and/or my first two years of college. Those songs are part of the soundtrack of my life. We all have a soundtrack. Music evokes profound memories in our brains that are often filled with emotion.

For the Jewish community music and singing are an integral part of our tradition. Abraham Joshua Heschel said in an interview, “The primary purpose of prayer is not to make requests. The primary purpose is to praise, to sing, to chant. Because the essence of prayer is a song, and man cannot live without a song.” I learned from the film “Alive Inside” that music can and should play a vital role in the treatment of people suffering from dementia, and part of the reason according to the film is that music is one of the last things people with dementia lose.

Alive Inside

Bikur Holim

Today Americans are living longer, and even though Alzheimer’s is not part of the natural aging process, many of us cannot escape being affected by the disease. Either we know someone who suffers from the disease or we know someone with a family member who suffers from the disease.

One of the core values of the Jewish community is bikkur holim (visiting the sick). We visit the sick to provide emotional support so that people do not feel isolated and alone. Visiting those who are sick provides comfort and makes people feel good. As people age they are often living alone, which means that visiting them is even more important because we often forget about people in our society as they age. Visiting our aging relatives is also important. It connects us to our heritage and reminds us of the past, and we still have a lot to learn from our elders. But visiting someone who suffers from Alzheimer’s can be hard in ways that are hard to imagine, because the disease makes visiting a challenge, especially when we feel like we are losing our connection to someone we love, because they can no longer remember important things about their lives or about the people in their lives. This can make the obligation of bikkur holim difficult because we feel like we are losing someone we love.

What does the Talmud say?

When Moses came down from Mount Sinai carrying the Ten Commandments and discovered the Israelites celebrating with the Golden Calf, he shattered the tablets that contained the Ten Commandments. The Talmud teaches us that after Moses shattered the tablets, he did not discard the broken pieces. He later returned to Mount Sinai to replace the tablets of the Ten Commandments. The broken pieces of the original tablets were housed in the Aron Hakodesh (Holy Ark) with the second set of tablets (Bava Batra, 14b). The Talmud further teaches, to be careful to honor an old man, who has forgotten his learning involuntarily. Respect the aged, because the whole tablets of stone and the pieces of the original tablets of stone were placed in the Ark (B’rachot, 8b). Meaning that both the broken and the whole are holy and are part of our community. I believe that Alzheimer’s as well as other types of dementia represents a human set of broken pieces.

Visiting our Elders

As Jews we are obligated to visit the sick. Jewish tradition strongly encourages us to hold up our elders, because of the wisdom they have acquired over the years. People in demented capacities still have much to teach us about the world. Helping elders to live comfortably and maintaining regular contact are part of honoring them. Our modern society is very individualized, and it is easy for seniors to become isolated, lonely, and even forgotten.

One More final Thought

Knowing that we are obligated to visit the sick and the challenges that come with visiting those suffering from the effects of Alzheimer’s, I think it’s important for family members to sit and share music. This can be in the form of an iPod, singing songs that are familiar to the person suffering, or it can even be a musical prayer such as the Shema.

In my current internship, I visit with a Jewish woman who suffers from very bad dementia. Most of the time when she talks to me it doesn’t make a lot of sense, but I can sit with her, and we can chant the Shema. The music and the words of the Shema are familiar to her, and after we sing the prayer she is calmer, happier and smiling.

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