Faces of Caregiving

“So [we’re] making sure Medicare adapts to provide families the opportunity to have the one you love stay with you instead of sending them off to a nursing home or some long-term care facility. You will find that now you will possibly qualify for federal support, financial support to care for your family members because you’re essentially doing what someone else would do if you had to send them off to a facility. That becomes a big game changer for families that want to provide the care but don’t believe they have the financial capacity to offer it.”

“If I were to tally up the amount of money that my wife's family saved the taxpayers [caring for her parents] and how much my family saved the taxpayers by not sending our parents to long-term care facilities, it’s got to be hundreds of thousands of dollars. It’s not just about beauty and dignity; it is just a smart thing to do.”

Karen Appert, 57, coleads the Caregiver and Patient Engagement work group of the North Carolina Serious Illness Coalition

Was caregiver for: Her mother, who had multiple sclerosis and dementia

“In my advocacy role, one of the biggest challenges I see is that there isn’t a lot of help for people who are middle income. And so you wind up doing a lot of it on your own. You basically learn by doing. We help our volunteers use their lived experience to advocate for better support in North Carolina. For instance, there’s the Lifespan Respite Program. In our state, a caregiver could only get up to $500 toward respite, which if you’re dealing with someone with 24/7 needs, $500 isn’t going to go very far. So it would be advocating for increased funding.”

Rep. Judy Chu, 70 (D-Calif.), cosponsored the Better Care Better Jobs Act

Was caregiver for: Her father, who had respiratory ailments

“We did hire caretakers in shifts 24 hours a day, and that was to allow him to remain in the home, which is what his greatest desire was. He was in such capable hands during the hardest months of his life. Our caregivers play such an important role in so many family lives. But caregivers are not adequately paid. We also need to have expanded paid family and medical leave options so that those who have to stay home to care for a sick loved one are more easily able to do so. We need to have 12 weeks’ paid family leave and to be able to take care of parents. Everybody has the potential to face the same issue. This affects so many millions of families all across America. That’s why we have to make this investment to improve our system.”

Paul Braun, 76, advocate for Alzheimer’s Association

Caregiver for: His wife, who was diagnosed with early-onset Alzheimer’s at age 59 in 2007

“The caregiving period was about seven years. But as it progresses, the amount of time and the impact that it has on the caregiver — emotionally, mentally and physically — is really tremendous. My family was seeing what was happening to me and were afraid that something was going to happen to me before Karen eventually passed. So did my physician. He sat down next to me and said, ‘Paul, if something happens to you, who’s going to take care of Karen?’ So it became evident I had to put her in a facility. You have no understanding how difficult of a situation it really is. It’s amazing what it does to some people. Now, telling my story is my way of giving back and trying to educate people. I had been in broadcasting for 50 years, so I was comfortable talking to people and I thought maybe I can use my talents. Because we do need help. Caregivers need help.”

Sen. Thom Tillis, 63 (R-N.C.), top Republican on the Senate Finance Subcommittee on Social Security, Pensions and Family Policy

Was caregiver for: His grandmother, who developed Alzheimer’s in the mid-’90s.

“My grandmother lived independently in a sort of family setting. Her daughters lived on either side of her. She started having the classic problems; she wrecked her car coming out of the driveway. So they had to limit what she could do. I got involved explaining to my mom and aunts that she really needed full-time care. There was a really nice facility 7 miles from where she lived. We got her over there. It demonstrated to me that there are limits to what a loved one can do to provide care without dramatically changing their life.”

Carrie Shaw, 35, CEO of Embodied Labs

Shaw's company produces a virtual reality platform that allows people to experience what life is like with Alzheimer’s and other conditions. 

Was caregiver for: Her mother, who had Alzheimer’s

“I became a primary caregiver for my mom when I was 23. It was just so hard for me to understand what her world was like. Why was she saying, ‘I want to go home?’ Why was she trying to pack a bag and leave the house? Now, with my work at Embodied Labs, they [caregiver and loved one] can connect with each other and problem-solve some of the most challenging things that come with caregiving.”