Activity · memory · purpose

Music

My mom has always insisted that she cannot carry a tune. She loved to sing, but would restrain herself around others because she didn’t want to embarrass herself. My sister and I have fond memories of her singing and dancing around the living room to some of her favorite records, be it one of literally every Johnny Mathis record ever made, a Barbara Streisand album, or a Broadway show album. She also knew the lyrics to all of the songs on these albums and for most of the radio songs she grew up hearing.

It seems to be a well-known fact that music memory seems to stay with people who have dementia. There is so much information and programs that support this, which a Google search will reveal. Some examples are a local Music and Memory program provided by JF&CS, the Alzheimer’s Association’s information center, or this clinical research article from Brain: Journal of Neurology.

I see it with my mom as well. Music moves her. She remembers the words to the songs and she just has to move when she hears them. She has built up quite the dancing reputation at all of the facilities where she has been. She kicks off her shoes (much to the worry of the CNAs) and just goes. She danced for two hours straight at my daughter’s Bat Mitzvah last year! The joy exudes from every pore and she seems somehow connected to life once again.

Still going at the Bat Mitzvah…

I had the good fortune of being told about a concert that was happening last weekend by the Michael O’Neal Singers where a piece called Alzheimer’s Stories, composed by Robert S. Cohen, was having its Georgia premiere. The piece was commissioned in 2008 by a choral singer in the Susquehanna Valley Chorale, in Lewisburg, PA, who lost both of his parents to Alzheimer’s disease. The work included stories from members of the Chorale. At this presentation of the piece, the Michael O’Neal Singers brought in Tom Key, the artistic director of Theatrical Outfit, to read stories of Alzheimer’s from members of this choir in between the songs.

The Alzheimer’s Stories piece includes three parts: The Numbers, The Stories, and For the Caregivers. It is written for two soloists, and ensemble and a chorus, The first movement focuses on the discovery of the disease by Dr. Alois Alzheimer in 1901 and the statistics that have been gathered ┬ásince that time. The movement included stories of people with the disease and their memories that they kept repeating. The last movement is focused on the pain for the caregiver, but also the hope that comes from the people with the disease themselves. A patient at a nursing home asked a caregiver to sing and when asked what to sing, the patient said, “sing anything”.

Find those you love in the dark and light. Help them through the days and nights. Keep faith. They sense what they cannot show. Love and music are the last things to go. Sing anything.

Alzheimer’s Stories, libretto by Herschel Garfein; composer Robert S. Cohen
Lifecycle

Lifecycles

If aging is a part of a cycle from birth to growth to decline to death, is it a wonder then that there are similarities between babies and those in physical/mental decline? Spending a year working with babies while at the same time being in care facilities with my mom really gave me the immersive experience.

Recently, I was about to leave my mom’s place with my daughter and a man came up to me ready to engage in a discussion. His inflection told me that he was conversing even if the sounds coming out were not intelligible to me. I did my best to respond and keep the conversation going. My daughter just stood there looking at me like I was crazy, like maybe I was ready to be a resident, too. Not a day later the video came to my Facebook feed of the Father having a discussion with his toddler in much the same way I had just been engaging with the person with Alzheimer’s. Entering their worlds to engage is what we were both doing.

There are the obvious similarities with physical needs, such as feeding, bathing, dressing and grooming. There are also connections with senses, such as hearing music and the body just responding with movement. Toddlers will just let loose when the music moves them and so will my mom. She was barely awake the day there was a Luau, but there she was hula dancing!

The taste of sweet things, though liked by all ages, is very much heightened for those who are losing their taste and those who are experiencing it for the first time. There were several babies who turned 1 in the classroom and we got to witness them eating cookies or cake for the first time. That gleam in their eyes and the smiles on their faces was extraordinarily similar to that of my mom each time she eats ice cream!

As I was told recently at a seminar on Alzheimer’s disease, touch is very important. Just as babies touch to connect, so do those who are in cognitive decline. The sense of touch is making up for the other inputs of connection that are not necessarily registering, and as it is for babies, it provides great comfort.

Though their are many similarities between the two, an important distinction that was also made at this seminar is that adults in decline should always be afforded their dignity. Whereas a baby in only a diaper is considered cute, an adult in the same situation is not and it should never be considered acceptable.