“There’s one and there’s two and there’s three, and it just seems like they don’t go together.”—my mother on what it feels like to have Alzheimer’s
My mother grew up loving music in Hayes, a village of 200 in the farmed prairies of southwest Louisiana. Her grandmother, Sadie, would sing folk songs and hymns while playing her piano, guitar, or “mouth harp.” It was she who imparted the joys of music to my mother as a child. I remember Grandma Sadie telling me that when she felt a little down, she would sing a song to chase the blues away. My mother must have experienced a similar pleasure, for under Grandma Sadie’s tutelage, she began playing piano—anything she could find, from boogie-woogie to Beethoven.
As a late teen, she brushed aside her mother’s advice to become a “businesswoman” (that is, to learn the typically female skills of typing and stenography). Instead, she decided to attend college in Lafayette, Louisiana, to earn a Bachelor of Music Education degree. She went on to teach private piano lessons and chorus in Lafayette schools for the rest of her working life.
Seven years ago, my mother was diagnosed with Alzheimer’s disease. Now 84 years old, she lives in the dementia ward of a nursing home.
Calling her from my home in Toronto for our phone chats, I’ve recently noticed a decline in her cognitive abilities after several years of relative stability. The disease is again on the rampage, and her neurons are rapidly withering away. Once linguistically talented, commanding an impressive vocabulary and gifted with an eloquent style of writing and speaking, my mother now struggles with the simple connection of one thought to another, and with the relationship between subject and verb. Such links are blurred by that terrible fog that has invaded her brain, virtually obliterating her short-term memory.
Realizing that I might have one last window of opportunity to visit her while she could still recognize me, I arranged to travel from Toronto to Lafayette. During the fifteen-hour trip, I’d hoped to do some reading and writing. But my mind was elsewhere as I wondered what to expect of her current physical and mental condition. Would talking in person be different from talking on the phone? She always recognized my voice on the phone, sometimes saying, “You always sound just like yourself!” Would she be less likely to recognize me in person?
Also, I had a certain routine during our twenty-minute chats. Because the disease—for a time, anyway—leaves older memories relatively intact, I’d often reminisce with her about her younger years. The conversation was by necessity rather one-sided. I’d punctuate my descriptions of events with questions: “Mamma, do you remember your mamma and daddy scrimping and saving during the Great Depression?” “Do you remember the little four-room schoolhouse where you went to elementary school?” If a two-sided conversation were not a realistic possibility, what else could we do to pass the hours?
Exhausted from traveling, I spent the first night with a relative. The next day I entered the nursing home and was given the combination for the door to the secure dementia ward. Although knowing that she was in a locked area was heartbreaking, I understood how important it was. Family lore told of a great-aunt with dementia who in her confusion had wandered off into the woods and, unable to be found by her worried family, died of exposure.
I spotted her sitting in a wheelchair in a lounge area, head bowed, eyes closed. I pushed back the tears and said, “Hi, Mamma, it’s Camille!” She looked up and soon her eyes lit up. Relieved that she recognized me, I helped her up and we slowly made our way to her room. Her gait is now a stiff shuffle: Alzheimer’s is destroying her motor skills and muscle tone as well as her cognitive abilities. I know that before long she’ll be confined to a wheelchair.
As we chatted, I sensed her awareness of her decline. Sometimes she’d try to describe what her confusion felt like—to know what she wants to say but to be unable to muster the words to say it. Once, attempting to express an idea, she said, “There’s one and there’s two and there’s three, and it just seems like they don’t go together.” She gestured with her hands as if trying to make the three things cohere. Although the original idea had vanished, she was able to articulate her frustration at the lack of associative threads that relate one thought to another.
The connections that our brains make, that give the world a degree of comforting coherence, are now all but lost to her. Alzheimer’s is a cruel disease. And this stage of the disease is especially cruel, as she knows that she doesn’t know, and she feels sad and even apologetic that she’s no longer able to hold her own in a conversation. This once fiercely independent and intelligent woman now has to cope with the knowledge of her own deterioration. I did my best to ease her mind that all that mattered was our enjoyment of our time together. However, any distress that she felt quickly faded from her memory: a mixed blessing.
I hunted for photographs that might spur some memories and found some in a drawer. We spent much of our time that first day looking at them and reminiscing about things like family vacations: “Mamma, do you remember the time you and Daddy took us hiking in the Rocky Mountains?” “Oh, yes!” she exclaimed. I described the mountains: the uphill trails, the tree-line where the tundra began, the glaciers, the panoramic views from a peak. We looked at pictures of the Rockies that I found in a magazine, giving her visual pleasure as well as reviving distant memories still protected from the ravages of the disease.
Sometimes Alzheimer’s patients confabulate—they pretend to remember something in order to mask the disease. But when my mother claimed to remember an event or person, I believed her. After all, if she didn’t remember something, she didn’t hesitate to tell me so. When she did remember, sometimes she’d say, pleasantly surprised, “I haven’t thought about that in a long time!” or “I would never have thought of that if you hadn’t brought it up!”
The second night, I was restless, unable to sleep. I sat, paced, made herbal tea, and wept. My mother was effectively dying. And in its later stages, Alzheimer’s is a living death. The body still functions well enough to stay alive, but the lights of personhood are extinguished. I had known for a long time that this would be the case, but now her decline seemed precipitous, and I felt a heavy sadness seeing her in this diminished state. I rummaged around the bathroom and found some Sudafed tablets to clear my sinuses and hoped that they’d also knock me out so I could sleep.
The next day, with the blessing of the nursing home, I decided to move in with my mother. I could sleep on the sofa in her room, and $6 a day would buy me lunch and dinner in the patient’s cafeteria. I was determined to spend as much time with her as possible and felt hopeful that somehow we’d find a way to enjoy our stay together.
A turning point in the visit occurred when I found a cd player in a dresser drawer. Over the years, I’d given her cds of her favourite music—mostly Baroque and Classical—and these I located on a shelf. I made a selection that I thought she’d enjoy.
First I played Mozart’s Sinfonia Concertante, a concerto for violin and viola, which I knew had a sweet and gentle sound. Her eyes closed as she swayed back and forth in her rocking chair. In the middle of the concerto, unsure whether she was really enjoying the music, I asked her if I should turn it off. As eyes opened and her brows furrowed, she said, “Oh, no!” and then her eyes slowly closed again. I knew she was completely engrossed.
I was discovering that classical music, a bond that we had always shared, could once more bring us together in blissful silence. She knew that I was present, but no words were needed.
Next I suggested playing Bach’s Well-Tempered Clavier, a set of preludes and fugues for keyboard. She responded, “Don’t you mean “Well-Tempered Clavichord?” I was surprised that she remembered that alternative title. When the first prelude began, suddenly an invisible keyboard seemed to materialize before her. Her fingers fluttered along it as if she were performing the piece. When it ended, she looked at me and said, “I haven’t done that in a long time!”
I was especially happy to find the cd of Handel’s Messiah that I’d sent her. I knew that in college, she’d sung alto in a chorus that performed Handel’s masterwork celebrating the birth of Christ. I also remembered that during my childhood, every year before Christmas she’d retrieve her yellowing musical score, lower the needle onto her LP record, and sing her alto part to the jubilant waves of choral praise.
So one day while she was resting in bed, I asked her if she’d like to hear a cd of The Messiah. Her eyes lit up and she said, “Oh, yes!” As I prepared to play the cd, I started singing a few words in a particularly joyful moment in the piece: “And His name shall be called Wonderful! Counsellor!” She immediately joined in and sang the melody to the end of the phrase. It was a startling moment—not only did she recognize the title, but she was also able to remember a melody from it! When I played the cd, she closed her eyes with a peaceful glow on her face. Her toes betrayed her immersion in the music, wiggling to the rhythm in a way that showed me that she remembered the music intimately: left toes wiggling for the chorus and right toes for the solos.
She enjoyed music at bedtime, too. I found Mozart’s Flute Quartets, which have a gentle, soothing effect. Every night when I turned off the lights, I’d play the Flute Quartets, and we’d fall asleep listening to them.
During our visit, we spent many hours silently and blissfully listening to Bach, Mozart, Scarlatti, Handel, and Beethoven. It was an entirely different experience than trying to converse. When we chatted, I could sometimes sense her frustration when she’d begin a sentence only to halt and give up with a sigh of resignation: mid-sentence, she’d already forgotten what she was going to say. But there was never frustration with the music. It rolled through her being unhindered by the mists that now cloud her attempts to make sense of what has so drastically transformed her old age.
I wondered why that was so. Music is a kind of language, with its own syntax and vocabulary—melodies, harmonies, rhythms, dynamics, and so forth. As I observed her listening, eyes closed and toes tapping, I wondered whether the part of her brain that processes music had remained relatively unscathed by the scorched-earth path of her disease. Perhaps listening to music allows her to experience a degree of continuity through the syntax of music. She never interrupted the flow to ask, “What are we doing now?” or “What are we listening to?”—whereas in conversation she’d sometimes pause and ask who I was and where we were (and why). Thanks to music, she enjoys the connective threads weaving together time. Her life once again has continuity.
I know that as her once-considerable language talents decline and her motor skills and bodily functions deteriorate, the language of music will continue to communicate with her. She may be a shadow of her former self, but for the time being, music has the power to sweep away the mist and give her a feeling of joy in being alive and connected to the world.
Thank you, Camille. I’m a CWILA member and found your note there. Thank you so much for this; the story is heart-rending. This could be any one of us in later years. Thank you for the bridge of music.
You’re welcome, Alex! I’m grateful that I was able to find ways to reach her.
Camille, this was a great story! I shared it with all of our LSU friends on Facebook. I hope you are well.
Alvin Swiney email: email@example.com