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.

Climate and Caregiving

When the climate changes and temperatures exceed 90 degrees, I have far less energy to be a good caregiver. Mom, however, loves the heat. Once summer arrived, she stopped grinding her teeth and her mood has improved. Climate has a huge impact on caregivers and patients. Why don’t we hear more about it?

Between the Pond and the Woods

Since my mother was first diagnosed, she has craved warmth and heat. Last winter, I boosted Mom’s happiness by raising the thermostat. We have a super efficient coal stove that produces many BTU’s. Mom was most pleased when the rest of us were sweating. Her attachment to warmth helps me understand why so many retirees head for Florida.

But what happens to caregivers in warm places with water shortages? Several months ago, parts of California were put under mandatory water restrictions. Water is essential for managing all the hygiene and laundry problems that come with caregiving. At least three times a week I find myself washing sheets and bed protectors.  Keeping up with mom’s hygiene also requires lots of water for sponge baths and other emergency clean-ups. Nevertheless, caregivers must respond to Governor Jerry Brown’s order to reduce state water usage by 25% this year. A board of water usage monitors the amount of water consumed in each municipality to determine if water conservation goals are met. Caregivers in California’s East Bay Area will face a “$48 penalty on the billing cycle for customers” exceeding the usage of average customers. 

Once I got to thinking about ways that drought and temperature affects dementia families, my thoughts turned to those caring for sick familiy members in the midst of war. We often see photos of children displaced by brutal battles. But what about elderly people who have lost the capacity to make sense of what’s going on around them? How do their caregivers manage? My searches for information about caregivers in Iraq, Afghanistan and other war-stricken countries returned zero results. As hard as caregiving may be for us in the U.S., I’m sure that caregivers in those places face even greater struggles. If you’re a caregiver facing a challenge caused by climate or calamity, send a note and help inform us about what’s happening in your part of the world.