Susan’s Story: Caregivers Need as Much Help as Those Being Cared For

In 2016, Susan was enjoying a successful career in Liquor sales when she had to resign and switch gears to become a caregiver. Her mother, Ann, had ITP (idiopathic thrombocytopenia) and in need of full-time care. Caring for Ann was an honor for Susan.

“To be able to be there for your parents is a blessing,” she says, “because they were there for me.”

However, it became too much when her husband, Al, a veteran, started needing her care as well. He suffered from alcoholism, PTSD, and anger management issues.

For Susan, there was a lot to worry about. She was stretched very thin financially trying to cover her mother’s high medication costs. And she was always on alert for situations that may trigger Al’s PTSD and anger issues.

Over the course of seven years, Al and Susan battled the VA to receive full compensation for all of Al’s disabilities so she could take care of him. Sadly, Al was only able to receive three years of full compensation before Al passed away unexpectedly from a massive stroke in 2019, leaving just Susan and her mother. Susan has received Social Security and VA survivor benefits since Als’ passing.
 
Although Susan believes that the VA has improved in recent years, she feels there is still a lot more that needs to be done to help the many challenges veterans and their loved ones face, especially when it comes to bolstering the number of mental health counselors. Having that kind of support would have made a significant difference when she was caring for Al.

“Caregiving is a full-time 24/7 job that we don’t get paid for,” Susan stresses. “I was unable to work during what would have been some of my most productive years.”

Susan’s mom passed away in 2021 and since then she’s been picking up the pieces of her life that was drastically altered as a result of her caregiving responsibilities. It has taken its toll.

“I’m left with mental health issues,” says Susan, who now works part-time and lives in Concord. “And when I retire, I’ll now receive greatly diminished Social Security benefits because of the years I could not work.”

These days, Susan, age 62, is financially struggling on a limited income and is scared about her future. As much as she'd like to go back to working full-time, her own health issues prevent her from doing so.

She has learned that families need to form a team for caregiving efforts. In her own experience as well as that of others, all too often one person or child in the family is left to care for their parents or elders, while others contribute nothing. This results in heighten isolation for the caregiver and no respite.

“Would I take care of my mom and my husband again? In a heartbeat,” Susan states. “But there has to be a way to compensate those who take care of family members, so we don’t lose out on Social Security benefits when we get older. Caregivers need as much help as those being cared for, and right now, I don’t see that happening.”

____________________________________________________
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.