Annette wakes up every day knowing that she will be directing everything that happens, not only for herself but for her husband Stephen who is a 100% disabled combat veteran currently battling cognitive and executive function deficits. As a result of his military service, which included multiple sarin gas exposures, Stephen has traumatic and toxic brain injury. His decline is very similar to issues associated with Alzheimer’s disease.
Every minute of the day, Annette deals with constant worry and emotional labor. She is always assessing what her husband’s abilities are and trying to balance his independence with tasks he is no longer capable of doing. “Stephen can’t really take care of himself beyond driving down the street two miles,” she says.
Managing time is critical. Every day, Annette creates a framework based upon the things she knows need to get done. She has to calculate in driving, medication, appointments, and all the little and big things that keep life on track. Additionally, she looks for new ways to exercise her husband’s brain regularly and to that end, she has added in flashcards, horseback riding, piano lessons, and learning German.
Despite the daily challenges, Stephen is an eternal optimist and doesn’t let his personal suffering get him down. Even when he should be frustrated or angry, he employs his great sense of humor which makes it easier on Annette. “He gets up every day and tries again,” Annette says. “He has such a good spirit.”
Being a full time caregiver was impossible for Annette to balance with a job. So, she and Stephen have come up with little ways to save money. They consolidate their car trips, cut back on shopping, grow their own vegetables, and really just focus on the basics they need in their lives.
“We are blessed to benefit from the VA’s caregiver program, without which we would experience severe financial issues,” says Annette. “However, the program and requirements are constantly under threat. I worked full time in the beginning but the demands of medical care and daily assistance and supervision made that unsustainable.” Without a doubt, their financial future is compromised.
Despite all the stress, Stephen and Annette are best friends; this has been the focus of their entire marriage. “That’s the fixed point,” she says. “It has helped to relieve the stress.”
Annette knows that being a full time caregiver for Stephen makes a huge difference in his life and his functioning, attitude, and outlook are greatly improved by her presence. Although Stephen and Annette have a wonderful group of friends and family, they don’t have any caregiving support. So, they get through every day together. There are good days and there are challenging days.
“Caregivers are a huge, invisible population,” says Annette. “We need to help them.”
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