With just hours left in the campaign, they made it!
Congratulations to Zoë & Micah!
Although we may not understand or agree with the choices others make along the way, it isn’t our place to pass judgment. Every family does what they feel is right for their unique and personal journey through Alzheimer’s. As you read on, please keep an open mind. Thank you. ~Ann
Zoë Smurr is a writer and documentary filmmaker from Fresno, California. She’s also intimately familiar with Alzheimer’s disease. Her father, John, was diagnosed with younger onset when Zoë was just 15-years-old.
Eight years later, she has set out to create a 12-minute documentary that honors her dad while tackling a difficult topic. It’s For My Dad: An Alzheimer’s Documentary will follow the Smurr family’s journey as Zoë and her fiancé make plans for their August wedding. It will explore how Alzheimer’s affects family dynamics, daily life, and the intricacies of relationships, love, and marriage.
A Fork in the Road
Throughout life, we arrive at various forks in the road where a path must be chosen. Although we may not know where either road will lead, turning back isn’t an option.
This is one of those moments for Zoë’s mother, Annette, and it’s where this story is different than most. As the family eagerly prepares for the impending nuptials of Zoë and Micah, Annette is also approaching a life-altering event.
She will soon be ending her 25-year marriage to John and will wed his caregiver, a gentleman she met eight years ago at an Alzheimer’s support group meeting. Lest anyone wonder, Annette stresses how excruciating this decision has been; it has taken an enormous amount of reflection and contemplation.
I’m thankful that Zoë is graciously allowing me to share her family’s story (with Annette’s blessing). We know that every 67 seconds, another American develops Alzheimer’s. It’s inevitable that unless there is medical breakthrough shortly, the numbers will grow exponentially in the coming years. As families face decisions that will alter their lives forever, we must continue the dialogue and that includes stories just like this one.
The Smurr’s story is not unlike that of Barry and Jan Petersen. Petersen, a CBS news correspondent, wrote the book, Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s, which chronicles the couple’s experience with younger onset Alzheimer’s. Jan, a former foreign correspondent for CBS, was diagnosed at just 55 years of age.
When Petersen could no longer manage his wife’s care at home, he placed her in an assisted living facility. Over time as he struggled with being alone at a relatively young age, he asked himself, is it still a marriage when only one person is mentally present?
Petersen ultimately made a conscious decision to seek out companionship. He met Mary Nell Wolff, a widow who would become his companion and partner in watching over Jan for the remainder of her days. She and Jan developed a lovely friendship and the three of them visited often. You can learn more about the story by watching the CBS Sunday Morning segment that aired in 2010.
As one might expect, Petersen faced harsh criticism for his decision to move on with life; however, he felt Jan would have given her blessing if she was able.
“The Jan I knew is all but gone to me now, but I remember what she always taught me . . . to embrace life. And to do that, I must go on.”
Support Group Friendship
Shortly after John Smurr was diagnosed, he and Annette decided to check out a support group. At that first meeting, they met Carl and his wife, Elaine, who was over seven years into her illness. The couples exchanged contact information and became friends.
Carl had been Elaine’s primary caregiver in their home for five years until her wandering and other problematic, and sometimes dangerous, behaviors forced the transition to a care facility. He understood what was involved in caring for a spouse with Alzheimer’s both from a practical and an emotional standpoint; Carl was the only person in Annette’s life who could relate to the complexities of her situation.
When Zoë and her sister left home for college, Annette lost the bit of help that she did have. Carl stepped in, becoming John’s driver and lunch buddy; by this time, the two men had developed a close friendship. As John’s needs increased, Carl was arriving as early as 7am to help get him dressed and ready for the day. Other times, he would be there into the wee hours of the morning to help when his friend repeatedly got up in the middle of the night.
Carl was committed to continuing as John’s caregiver, and the family decided it made sense for him to move in since he was already there more often than not.
Fast Forward to Today
Annette and Carl remain steadfast in their desire to keep John at home for as long as possible. Together they will continue caring for him while also looking after Elaine. Two people whose lives have been changed by Alzheimer’s – in ways they could have never imagined possible – will have each other to lean on.
Zoë says the impending marriage “came as a shock,” but adds her mom and Carl are “both devoted to making sure their spouses have the best lives possible, while trying to live and survive their own.”
Why a Documentary?
A project for Zoë’s master’s program at Loyola Marymount University sparked the idea for the documentary. She toyed with several topics before concluding she wanted to use the film to tell her dad’s story. With the decision made, the young filmmaker struggled to come up with a solid concept – until she learned of her mother’s plans.
“This was devastating news for us,” she says.
Zoë hopes her film will incite thoughtful and productive conversations within the Alzheimer’s caregiving community. She feels her family’s unconventional story can help others who are struggling.
“I believe stories like this may become more common in years to come, but will not be openly talked about. I want to start a dialogue so that families can cope with these issues when the time comes.”
Her family has been supportive with regard to the project, and Zoë tells me her work on the film is helping her make sense of the changing family dynamics.
“The process has allowed me to love and support, rather than negatively judge and resent,” she says.
The Making of an Independent Film
On June 21st, The Longest Day and Father’s Day, Zoë and fiancé Micah Byers, who will score the film, kicked off a crowdfunding campaign. They are nearly halfway to their goal of $3,400, which will cover the cost of the professional film crew, licensing, original soundtrack, digital media, and post-production work. Loyola Marymount has generously offered use of their camera equipment free of charge, which will help defray costs.
“Right now, I’m working on making my film appealing and marketable to the indie film festival circuit as a way to reach the more mainstream community,” says Zoë. “From there, it could be picked up by PBS POV or the Sundance Institute.”
She also plans to submit her work to the Student Academy Awards, which she hopes will significantly expand her audience. With regard to the caregiving community, the filmmaker is reaching out to advocates and bloggers to help spread the word and create a buzz. Ultimately she hopes to garner support from the Alzheimer’s Association and HBO’s “The Alzheimer’s Project.”
So this bright, creative, and passionate young woman is about to realize the dream of her father walking her down the aisle to marry the love of her life. With the wisdom of someone much more advanced in years, Zoë ponders the “movie” version of love as opposed to the real life struggles of families touched by Alzheimer’s.
What happens when the person living with Alzheimer’s no longer remembers his marriage? How does a relatively young spouse handle the stress of caregiving in the face of crushing anticipatory grief and loneliness? What if the spouse finds companionship, and possibly more, in that rare person who understands the journey she is on?
Caring for a spouse with Alzheimer’s can be agonizing under any circumstances, but doing so at age 52 is almost inconceivable to most of us. Whether or not we agree with the choices made by Carl and Annette, I think we have to respect the courage it is taking for them to share their story. It’s For My Dad: An Alzheimer’s Documentary could be a catalyst for important, and no doubt difficult, conversations on a topic many wrestle with in silence.
If you would like to contribute to the film’s crowdfunding campaign, you have until July 21st.
Zoë Smurr earned her B.A. in English Literature at UC Berkeley in 2013 and is currently working on her M.F.A. in Film Production at Loyola Marymount University. To learn more, visit her on social media.
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