Safe, Dignified Care for Mom
“Plan ahead and don’t give up - there’s always something that can be done to help your loved one.”
Jena’s caregiving journey began with her late father’s struggle with dementia. Today, she cares for her mother, who lives with chronic, debilitating pain. Her parents, both raised in rural Pennsylvania, came from blue-collar backgrounds. They never attended college and rarely spoke about finances. When her father was diagnosed with dementia, her mother cared for him at home for over 12 years. But as his condition worsened and he lost the ability to walk, he was moved to memory care, where he passed away at age 90.
At the same time, Jena’s mother was facing serious health challenges of her own. “Mom suffers from neuropathy and severe arthritis. She’s in excruciating pain and often cries because of it. Watching her in that state was heartbreaking.” She underwent her first back surgery around the time her husband died, and another one later. Living in a rural area with limited access to quality healthcare, she was prescribed a steady stream of painkillers, including oxycodone and fentanyl.
To support their mother, Jena and her sisters hired private caregivers to help with daily tasks and medication management. Things seemed to be going smoothly, until one day they made a startling discovery: “We realized one of the caregivers was stealing Mom’s pain medication. My sister and I installed a security camera—and caught her in the act.” Jena and her sister fired the caregiver, but in retrospect wonder if they should have engaged law enforcement. “We should have pressed charges. I feel guilty about that because she is probably doing the same thing somewhere else,” says Jena. “We were just concerned about my mom. It’s been a horrible struggle with all of that. We didn’t have 24/7 care, we had big blocks of time when she was alone. She refused to move in with any of us.”
Although Jena has two sisters—one nearby and one farther away—she carried much of the burden. “So many times I’d leave at 3:00 or 4:00 am to drive to Pennsylvania in time to take my mother to the doctor and get back before my son got home from school. As a single mom with a full-time job, it was really hard.” In time, the sisters found a physician who adjusted their mother’s pain management regimen. They also moved her into a local assisted living facility, hoping for the best. “It was a beautiful facility, with assisted and advanced care. But so problematic in terms of professionalism, food, and staff turnover.”
Still, problems continued. Jena’s mother had been prescribed time-release morphine twice daily, along with a PRN (as-needed) dose. “They gave her the time release medication in morning and night, but PRN only 3 times over a period of months. My sister and I started looking into it. They had been filling the prescriptions but not administering it to her. Over 150 tablets of morphine were missing!” Jena and her sisters reported the issue to the local health department, believing the facility owner would take action. “We thought that the owner, beloved as he was in the community, would do the right thing. But nothing happened.”
After experiencing medication theft in both a home and facility setting, Jena’s trust in the system is deeply shaken. “You might expect medication theft in your own home, but to see it twice—we’ve seen the worst of people taking advantage of the system.” She often wonders about patients who have no one to help them. “It’s horrible for me—I keep going back to thinking we’re on top of things all the time, we’re involved. I can’t even imagine these people who don’t have family involved in their care. What are they doing? Are they getting their medication? Are they getting their pain meds? There is no way to be certain that your loved one is being cared for properly. It’s so sad to me that you can’t trust a facility that’s getting thousands of dollars a month. And even when you say something’s gone wrong, the owner doesn’t step up and take responsibility.”
Frustrated and upset, Jena and her sisters have decided to move their mother again. “We’ll let her tour different facilities and then decide. I just don’t want her to be in a place where she sits in her room alone all day. She deserves the best.” The concern for the quality of care her mother will receive in the new facility isn’t far from Jena’s mind. Currently her mother’s overall health is okay, and her pain doctor is trying to reduce her medication. But financial considerations are ever present due to the cost of care. ”She’s doing well otherwise and will outlive her money, we’re certain of that. That’s the other harsh reality. Who knows what the future holds? I don’t want her to go somewhere like a state facility. If it comes out of my pocket, it comes out of my pocket. In my opinion she deserves to be somewhere nice. I can do that.”
The lessons learned in caring for her parents have impacted how Jena thinks of her own future. “My son’s seen this for years - my dad’s decline, my mom; my early morning trips for years, cleaning up my parent’s finances.” Jena resolved to keep open communication with her son about her financial situation should anything happen to her. “Taking care of yourself is critical. It doesn’t guarantee anything, but it certainly helps.” Jena is determined not to be a financial burden. “Make sure you’re saving for your future as best as you can. I’ve told my son where the accounts are, what plans I have, and what my wishes are.”
Looking back, Jena is clear about what this experience has taught her. “The most important thing I learned—plan ahead and don’t give up. There’s always something that can be done to help your loved one.” It’s a message shaped by years of early morning drives, tough decisions, and relentless advocacy. Despite the setbacks and heartbreak, Jena continues to show up—for her mother, her family, and herself.