Remember the Wizard of Oz? Dorothy gets swept up in a tornado out of the blue, taken from her Kansas farm and dropped into a strange world, totally unprepared. Fortunately, with the help of others, Dorothy is able to learn, adjust, and navigate her way through her new reality and the trials and tribulations which lay ahead.
As approximately 80,000 Connecticut families can likely attest, the story from this all-time cinematic classic is an impactful, accurate analogy for what it’s like when Alzheimer’s disease enters your family’s life.
Similar to the twister in the movie, Alzheimer’s turns everything upside down, creating numerous physical, emotional, and logistical challenges families are rarely prepared and trained to address. As a result, they must learn quickly as they carry out the unpaid job they were thrust into which requires them to be on call 24 hours a day, 7 days a week and responsible for someone else’s health, safety, and well-being. Often, they are balancing other essential needs; adults caring for a parent with Alzheimer’s often have jobs and school-aged children.
Many more families will be swept up in this storm in the years ahead. The Connecticut State Department of Health forecasts the number of Connecticut residents living with Alzheimer’s to grow to over 91,000 by 2025. As that number continues to increase, so too will the number of family caregivers.
Like the trek to the Emerald City along the yellow brick road, the Alzheimer’s caregiving journey is a monumental undertaking. Most who begin it start with the same question: “What do I do now?” Caregivers don’t have to face witches or flying monkeys, but they will be forced to deal with a disease that is truly wicked and comes with symptoms that include memory loss, confusion, aggression, paranoia, psychosis, and wandering.
Handling all this alone is impossible. Just like Dorothy, they need to have help, and they should not be ashamed, embarrassed or reluctant to seek it.
Connecting caregivers with support services—and empowering them with knowledge they can use to help themselves—are among the most important steps we can take to make the challenges they face a little bit easier.
Additional government funding for caregiver support is certainly helpful. Lawmakers must continue increasing federal funding for Alzheimer’s caregiver support programs at the Administration for Community Living. Respite care is vital to alleviate the mental, emotional, and physical stress that comes with caregiving and avoid burnout.
For Connecticut residents, the Alzheimer’s Foundation of America is holding a free educational conference on Wednesday, October 16 at the Hotel Marcel, 500 Sargent Drive, New Haven, to provide helpful information about brain health, caregiving, and answers to questions. Visit www.alzfdn.org/tour to learn more and register.
If you can’t attend, or have questions that can’t wait, you can get answers and support by calling the AFA Helpline at 866-232-8484—it’s staffed entirely by licensed social workers, seven days a week.
Finally, if you’re caring for a loved one with Alzheimer’s, know that there are loved ones and friends who want to help you. When they offer, take them up on it and be specific about what you need: “Can you watch Dad for an hour on Wednesday so I can run to the grocery store?” Growing your caregiving and support team is crucial.
The Land of Oz was a fantasy world, but the Land of Alz is all too real for a growing number of families in Connecticut and across the country. It’s imperative that we all help them on their journey.
Charles J. Fuschillo, Jr., is the president & CEO of the Alzheimer’s Foundation of America.
