Barbara's Story: "This is the most overwhelming thing I’ve ever done.”

Barbara is struggling to keep herself and her husband Tom afloat. Twelve years ago, Tom suffered a permanent traumatic brain injury that makes it impossible for him to work or care for himself. In the beginning he was treated at various hospitals and rehab centers, which added more bills to Barbara’s daily worries. These days, Barbara is her husband’s primary caregiver.

On top of a full-time job, Barbara must keep up with the housework, meal preparation, shopping, finances, medication organization and treatment, and more. She’s also hired a home health aide, another added expense, so she doesn’t have to stay up most of the night to get everything done. The aide comes three days a week to help with Tom’s personal care, showering, and other tasks.

“Tom weighs 240 pounds so I can’t lift him and I’m getting older,” Barbara says. “I am looking, eventually, at him going into a nursing home with a memory care unit. But they are expensive, and I don’t know how I will pay for it.”

Barbara is currently going through her retirement savings to pay for the home health aide and purchase assistance devices to support her husband so he can stay in their Pelham home for as long as possible. This is a necessity. In the past, they lived in a home with stairs and Barbara broke her arm and Tom broke his back when they were trying to get him up the stairs. Now they live in 55+ housing on one floor. Barbara made significant investments in modifying their new home to be accessible and purchasing devices including a Razor Lift to be able to lift Tom off the floor if he fell without having to call for local paramedics.

“This is the most overwhelming thing I have ever done,” says Barbara. “He can’t do anything for himself. I am struggling financially, exhausted, stressed about the future, and my own health is suffering.

Early on in Tom’s recovery, it was suggested to Barbara that if she quit her job or got divorced from Tom then he would be eligible for Medicaid and get all the services he needed. For Barbara, that is not an option that makes sense on any level.

“I won't divorce a man I have been married to for 37 years and I love with all my being,” she says. “And, I cannot quit my job as I would not be able to pay the bills.”

The last 12 years have certainly been tough for Barbara and Tom. She receives little assistance and is paying for everything on her own.

“It would really help if Medicare would pay for in-home assistance or nursing home care,” says Barbara.
“It frustrates me that you need to be basically destitute to receive necessary services from the government for the disabled. Even places that claim to be handicapped accessible are not very handicapped friendly. I feel the need to be a voice for others who struggle as I do. I am only 61-years-old and I wonder how much longer I can do this.”

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To many lawmakers, America’s millions of caregivers are invisible. Yet, our family caregivers hold up a broken long-term care system. Which is why AARP is looking for your help; we are starting a movement of family caregivers to show lawmakers that we are a powerful constituency who need support now.



Raise your hand and join the fight at www.aarp.org/iamacaregiver.



If you are a caregiver and need resources and support on your caregiving journey, please visit: www.aarp.org/cargiving.