Learning from Dementia

Every time I think I have it figured out, I learn something new from caring for a mother with dementia. Today, Mom taught me a lesson I should have learned long ago. Although she is impaired in a hundred ways, she still finds ways to control her life, no matter what others are doing.

Learning from Dementia

We had a visit from some family members Mom hadn’t seen in three years. These are people she always liked and I expected her to be really pleased by their familiar voices and efforts to re-connect. All morning I said, “Uncle So-and-So is coming to visit. Remember Uncle So-and-So?”

She laughed, like she always does when something appeals to her. As I dressed her in a bright green shirt and combed her hair, I explained ten times that we were having visitors. Mom seemed happy, even eager, for the visit.

Most research about dementia recommends maintaining social connections with people as a strategy to improve the health of caregivers and dementia patients. Many studies — including the work of Bryan James, an epidemiologist at the Rush Alzheimer’s Disease Center in Chicago — have found that elderly people with higher levels of social interaction exhibit better brain health. Bryan James found that rates of cognitive decline were 70 percent lower “in people with frequent social contact than those with low social activity.” James — quoted in an article by Jill Suttie — says, “Social activity is related to motor function, just like physical exercise is related. We can’t determine which is most important—they each contribute a piece of the puzzle.”

I know for a fact that visits from some people improve my mother’s mood and boost her morale. We have a friend who used to own a coffee shop where my mother once enjoyed ice cream sundaes. When he visits our house, she recognizes his voice and perks up at the sound. Although these simple interactions please Mom, her behavior changes when we have a visit from family members. For some reason, my mother “plays possum” when relatives arrive. A few months back, two of her sisters came to visit, along with their four daughters. My mom pretended to be asleep the entire time.

I’m not sure what provokes this, but my theory is that she doesn’t want them to know the truth about her illness. She pretends to be sleeping so she doesn’t have to reveal that she can’t respond to their questions or remember their names. If she’s just snoozing in the chair, she can experience the comfort of listening to them without feeling the pressure to search for words she lost a long time ago.

Today, she repeated the same kind of performance — then as soon as Uncle So-and-So was in the car, Mom was smiling and laughing just like usual. Thank goodness he’s a man with a sense of humor — and a very big heart. Even if she didn’t talk, his visit meant the world to me.

Dementia on Film — Still Alice

I was eager to know if  Still Alice could capture the deep truths of dementia on film. Caregivers like me don’t get much time to go to the movies, so it was gone from theaters long before I finally saw it. No one wanted to watch it with me, so I viewed the DVD all alone. I was very glad I did it.

Dementia on Film Still Alice

My sister, who loves movies as much as I do, was afraid to watch Still Alice. She thought it would dredge up sad memories of mom’s first dementia symptoms. We were all frantic at that time in our lives. My sister did not want to revisit that pain. I wanted to see the movie for the opposite reason. I wanted to be sure that this important work offered a realistic portrayal of dementia, not just a rehash of Hollywood fluff. I was happy that Julianne Moore was cast in the lead role. She’s very intelligent and has the talent needed to capture the subtleties of Alzheimer’s and how it effects families.

Still Alice brought me to tears several times. When smart, capable Alice can’t figure out where she is at the beginning of the film, Moore plays the scene perfectly. Her acting did exactly what my sister feared. It made me recall the harrowing days when my mother would walk out to get lunch and forget why she left the house. Julianne Moore captured the sense of panic that arrives with the first bewildering episodes of forgetfulness.

During those early days, my mother kept losing her bank card. Sometimes she’d call a friend, who would go to Mom’s house and find the card for her. When her symptoms got worse, Mom would call me to report that someone stole it. My mother started being suspicious of everyone around her, thinking they were taking her money or planning to hurt her. During these calls, there was a terrifying note of hysteria in her voice. Like the main character in Still Alice, Mom’s biggest fear was that she would not be able to exercise control over basic aspects of her life.

The film made me wonder about the medication Alice took and the unanticipated effects it might have had on her behavior. The movie didn’t say much about Alice’s treatment options. It just said that little could be done for her form of the disease. The Alice character did mention, however, that she was taking Namenda. Just hearing her say that took me back to my mother’s horrible experience with that drug. Mom did all kinds of truly crazy things until we realized that the medication was doing more harm than the disease (at that point). A film can’t pursue every possible story line, but I would have liked to hear Alice’s family talk more about treatment issues. They are critical matters for dementia families.

Alice’s wealth was one aspect of the film that I found to be too cinematic. I understand that it’s easier to make a visually engaging movie when the characters live in a gorgeous New York brownstone and spend months at the beach. But most families facing issues like Alice’s are struggling to figure out how they’ll pay for care. I did not detect any sense of urgency on the part of Alice’s husband or kids regarding the costs of treatment.

The movie made me thankful that my mother didn’t share Alice’s notions about ending her life. Sure my mom was scared, but she was not frightened enough to think she should just stop living. Although it is a huge challenge to care for someone with progressive dementia, our family has been strengthened a million times over by working to give my mother the best possible life. If she had left us sooner, we would have been cheated of the chance to learn how deep love can grow when you grapple with dementia. Still Alice captured this important truth in its portrayal of the mother-daughter relationship. If you’re a family member trying to figure out what can be gained from dealing with this awful disease, Still Alice may have an important message for you. Don’t be afraid to watch it.