Steve's Story: Caring for Mom

Steve’s caregiving journey with his mom Shirley, age 86, has been a long road that began shortly after she had a stroke. Shirley was living on her own in an apartment in Keene and soon began having memory issues. Eventually, she was found several times confused and wandering at night and knocking on neighbor’s doors.

Unable to afford professional nursing care for Shirley at home, Steve arranged for his sister Pamela to be paid through a local organization to care for their mother and stay with her at night. Pamela was dealing with her own health issues and soon Steven found himself caring for both of his loved ones.

Eventually, it became too difficult to provide the care Shirley needed at home and Steve went through the process to qualify his mom for Medicaid benefits. Unfortunately, the amount she was approved for only covered a communal room at a nursing home where Shirley had three roommates. It didn’t take long to realize that this was not the right fit. The care was sub-standard and Shirley really struggled. She was dealing with severe memory loss and began locking her roommates out of the bathroom.

Worried about his mom, Steve worked to have her moved to another facility where she was eventually diagnosed with Alzheimer’s disease and assigned to a unit at the facility that specialized in the care she needed.

Throughout it all, Steve was splitting his time between his mom and his full-time job. It was a very heavy load. Visits with his mom were emotional and difficult as her memory loss progressed.

“Visiting was traumatic,” says Steve. “We’d visit and she often didn’t know who we were.”

In addition to the emotional aspect of being his mom’s caregiver, Steve was tasked with his mother’s overall well-being, the burden of her dwindling finances, using his own finances for her care, scheduling and transportation for doctor visits, logistical aspects of her care, figuring out Medicaid benefits and being his mom’s advocate on all levels.

Steve says he would have benefitted most from family support.

“It is hard work and you can’t please everybody,” says Steve. You just have to keep the best interest of the relative in mind.”

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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.