Editor's Note: Lauren Miller Rogen is an actress and screenwriter who co-founded the nonprofit Hilarity for Charity with her husband, actor Seth Rogen. Hilarity for Charity is a movement that aims to raise awareness of Alzheimer’s disease with young people. Since it began in 2012, Hilarity for Charity has raised more than $6.5 million to help families coping with Alzheimer’s and support medical advances in the field.
This summer marked 10 years since my mom’s diagnosis with early-onset Alzheimer’s. She was 55 then. She’s 65 now. If things had gone how my parents had planned, she probably would have started thinking about retiring from her lifelong profession of teaching (first grade) around now. Perhaps they’d be planning a great trip, or a tour with some friends or family. They’d come out to California and visit me and Seth, or we’d all go somewhere fun together. Of course, that’s not what’s happening. Instead, we’re doing our best, to quote Sheryl Sandberg: “kick the s--- out of option B.” Which for us, is providing her with care from three wonderful caregivers while my dad is still right by her side every single day.
As you can imagine, at 10 years into Alzheimer’s, my mom’s disease is quite advanced. She needs to be dressed, fed, bathed, changed and moved. People often ask if she recognizes us, and honestly, it’s impossible to know. But what I do know is that she often does her best to smile when my dad walks in the room, and when my brother says hello on speakerphone, her eyes will light up. Those are the moments we live for these days and I’ve really begun to appreciate those moments of light that shine through this very dark disease in a way that I wasn’t able to in the beginning of this journey.
While there is currently no cure for Alzheimer’s, there is care -- and a lot of it. In 2015 alone, more than 15 million family and friends provided 18.1 billion hours of unpaid care to those with Alzheimer's and other dementias. That care had an estimated economic value of $221.3 billion [according to the Alzheimer's Association].
Yet, with millions of families and individuals across the country and the world caring for loved ones with this disease, it is still easy to feel incredibly alone. Alzheimer’s is a very isolating disease. It isn’t talked about in the same way as other illnesses, and this can prevent people from seeking out the support they need and being fully aware of the resources that are available.
The Alzheimer’s Association examined issues facing caregivers in the 2016 Alzheimer’s Disease Facts and Figures report and found that nearly half of care contributors must cut back on their own expenses -- including basic necessities like food, transportation and medical care -- to afford dementia-related care, while others must draw from their own savings or retirement funds. Care contributors are also 28 percent more likely than non-care contributors to eat less or go hungry because there wasn’t enough money to afford proper meals. Twenty percent of care contributors sacrificed their own medical care by cutting back on doctor visits, according to the report.
I recognize how lucky I am to be in a position where finances have not been a factor as my family and I care for my mom. But it’s clear that there are many out there who need more support. When I founded Hilarity for Charity, one of our main goals -- in addition to fighting a terrible disease – was to provide support to the millions of caregivers who desperately need it.
So, in 2014, we partnered with Home Instead Senior Care to create the Alzheimer’s and Dementia Relief Care Grant Program. This program provides home care grants to caregivers caring for loved ones living with Alzheimer’s disease or other dementias.
The grants ensure exceptional home care is provided to people living with the disease, while also providing their caregivers a much-needed break. It allows these caregivers time to complete simple tasks that many of us take for granted -- going to the grocery store, attending a work function, or simply doing chores around the house -- knowing that their loved one is safe and cared for. We hear from many of our grant recipients that this support is simply life-changing. Half of all funds raised by Hilarity for Charity support this program.
As of November 2016, appropriately National Family Caregivers Month, we have awarded over 100,000 hours of care worth more than $2 million. And while we are committed to raising even more money to help more families -- we know it is impossible for us to answer every request for help -- no matter how desperately I wish we could.
That’s why it is critical that caregivers continue to seek out the resources and support available to them. Reach out to the Alzheimer’s Association for free information and guidance in your community or online at their Alzheimer's and Dementia Caregiver Center, or to Home Instead’s website, for free online training for Alzheimer’s family caregivers. It is so important to share your story and build a support network where you can find solace, strength, and yes, help. There are many groups available, some online, such as our Hilarity for Charity Google Hangout support groups for caregivers under 40, or in-person, like those provided by your local Alzheimer’s Association chapter.
We can each play a role in supporting these families and putting an end to this disease. Encourage your friends and families to donate towards research to find effective treatments and a cure. Call your elected officials and demand more research funding for Alzheimer’s. Participate in a clinical trial. Offer your help to a family -- even an hour or two a week can make a big difference.
As someone deeply affected by Alzheimer’s disease, the worst parts of my journey were the years that I didn’t talk about it. Those were years when I felt alone because I didn’t think that anyone could possibly know what I was going through, let alone help -- which I now know is not even close to being the reality. So let’s talk about it. Let’s share our stories -- the good, the bad and the ugly. Let’s make Alzheimer’s part of the conversation. Let’s bring more light to the darkness -- through the families that we can help and the work that we can do together to end Alzheimer’s.