Liza Futerman is a friend and writer who has published a stunning monograph about her mother’s Alzheimer’s. Illustrated with passion and pathos by Evie Tampold, this graphic short story, Keeper of the Clouds, captures the essence of what it means to live with someone suffering from the disease.
The message Liza imparts is that moments rooted in the present become gifts of clarity and connectedness, of poetry; and that it is okay to laugh and dance and feel joyful even within the depths of Alzheimer’s.
Here’s the link to Liza’s monograph.
I met Liza several years ago when we were both students studying English literature. I was amazed to discover she speaks three languages fluently, having immigrated to Israel from Russia with her family. She holds an MA in History of Art & Visual Culture from Oxford University, and an MA and BA in Foreign Literatures and Linguistics from Ben-Gurion University in Israel. Today she is the Doctoral Vanier Scholar at the University of Toronto Centre for Comparative Literature and the Anne Tanenbaum Center for Jewish Studies.
It is distressing to meet such a young woman whose life has been inexorably altered by Alzheimer’s. Liza is in her early 30s, and her mother, in her late 50s, suffers from early onset of the disease. The Alzheimer’s Association estimates that in 2016, 5.4 million Americans of all ages had Alzheimer's disease of whom approximately 200,000 individuals were under age 65.*
Through Liza, I have learned about several innovative sites that work to change the way we think about Alzheimer’s. The site Liza formed is Arts for Dementia which uses “content and technology to create a new vision of life with dementia, supported by positive solutions and a community that steps beyond loss, into life.”
“About a year before [my mom’s] official diagnosis, which was treated like a verdict,” writes Liza, “I realized neither my mother, my father nor I had the tools to cope with her new and unstable condition. I was motivated to learn more about the medical condition and find effective ways to support my mom. I wanted to understand what she was going through and how I could help her and my father…. [W]henever I Googled the words Alzheimer’s or dementia, I was bombarded with countless articles, websites, commercials etc. telling me how grim our family’s situation was and how devastating our future was bound to be. It dawned on me that the tragedy-infused language about dementia wasn’t helping us much.”
Then there’s Project We Forgot which is dedicated to the invisible young caregivers among us. Founder Melissa Chan writes, “I was about 14 when my dad was diagnosed with young onset Alzheimer’s. The doctors attributed it to the belated emergence of effects from an accident he had had when he was younger. For the next 10 years, I lived everyday seeing my father fight the disease and the family’s struggle to redefine normalcy…until he passed on in 2014.”
In her father’s memory, Melissa hopes to help young caregivers find and support each other.
Young caregivers have so much energy. I admire them and am happy to share this difficult journey with them.
If, on a personal level, we are able to make that shift in caring for our loved ones from the dour course of the illness to the joyous interactions that the present brings, we will enhance their care and allow them to live vital lives, even if only in brief moments. It is not always possible to side-step the medical necessities of this disease; with practice, and by thinking out of the box, we can offer countless glimpses of happiness. This is my goal when I visit my mom.
When I told Liza about my parent’s plans to move next August to be near me, and about my concerns that Mom would be disoriented, Liza suggested I hang balloons and streamers in their new home as a way to soften Mom’s introduction to her surroundings. We'll make it a big party. We'll celebrate their move and our shared presence in a constantly recycled present.
I’ve been hoarding a small container of saffron that I received from my friend Liza Futerman about two years ago. I use it sparingly as it is the most expensive of spices. Saffron is made from the stigmas of crocuses. The reason it’s so expensive? It takes about two football fields of crocuses to produce a kilo, with each stigma collected by hand.
Persian Saffron Rice
With the cold of winter chilling us all, I’ve been cooking hearty, hot meals that fill us with warmth and nutrition. Here’s the crunchy Persian rice dish I made that includes saffron as one of its ingredients.
2 cups long-grained white rice
Water for cooking
2 Tbsp olive oil
½ cup boiling water
A pinch of saffron
1 tsp garlic powder
Salt and pepper to taste
Directions:
Fill a large pot with water and at least 1 tsp salt and bring to a boil. When water is boiling add rice and cook for 10 minutes on a low boil. Drain and wash rice. In a non-stick pot, heat oil and add 1/3 of rice. Fry rice on high for five minutes. Meanwhile, stir saffron, garlic powder, salt and pepper in ½ cup of boiling water. Add remaining rice to pot without mixing and fry for another 3 minutes. Pour water and spices over rice, cover well and remove to a low flame for an hour. To serve, flip rice into a low-sided bowl. Make sure to place the crunchy rice from the bottom of the pot at the top of the serving bowl.