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This journey started about six years ago, when a close family member was diagnosed with Alzheimer’s. The disease was caught at an early stage, so he was able to live alone and continue driving, however, we focused more and more of our time on his safety and wellbeing.

Shortly after the diagnosis, we were told he needed to undergo emergency oral surgery, requiring anesthesia. The procedure was successful, but when he came out of the surgery, he could no longer dress, bathe, or care for himself. When we returned home from the hospital, we were greeted by a team of home care nurses who helped with caregivers, occupational therapy, and physical therapy.

Adjusting to the home care process and managing rotating schedules with multiple caregivers wasn’t easy on our family. Both my husband and I worked full-time jobs with two children living at home and two away at college at the time, but we found a way to navigate our new normal.

Following a few months of physical therapy, we were thrilled to see some improvement, as he regained the ability to do some basic things for himself. We enlisted the help of one caregiver to assist him around the house, accompany him on walks outside, and keep him company while we were at work. But without access to technology, we could not communicate in real time. This meant we would have to rely on antiquated methods of communication—like phone calls—to receive updates on his status and condition, which typically led to multiple rounds of phone tag.

Transitioning to memory care

After about four years of caring for my family member in our home, his memory began declining rapidly, and we realized he needed more help than we could provide. We began researching memory care clinics. While we couldn’t find an option that offered an electronic portal for collaboration and communication, we decided on a facility that staffed mostly registered nurses trained to deliver quality care and support.

He moved into this memory care facility in January 2020, but even before COVID-19 hit three months later, coordinating his care was proving to be a difficult task. Managing multiple therapies and medical equipment meant playing phone tag during my workday. While traveling for work, I missed phone calls and received many rushed, vague voicemail messages about my loved one’s condition, leaving me to chase down answers. The disjointed communication proved challenging, and the pandemic would only add to the feeling of hopelessness.

Navigating COVID-19 and memory care

As many experienced at the onset of the pandemic in 2020, entire care facilities shut down, patients were confined to their rooms, and mobility was almost non-existent. His cognitive abilities and mental competence went sharply downhill, and due to COVID-19 regulations, we were no longer allowed to visit regularly. By the time I was able to see him in person for a doctor’s visit, expecting him to use a walker, I realized he needed a wheelchair—something that would have been communicated to me had I been to his facility regularly. Once specialty providers were permitted to come in, I once again had no choice but to coordinate caregivers by phone. It was a disorganized, frustrating, daunting process that could have been avoided with a more advanced system of communication.

About a year later, his health declined to the point of needing hospice. While they were helpful in coordinating all the new equipment and caregivers, it still involved chasing down providers, parsing through multiple emails, and even getting unsecure text messages. However, they did have one point of contact, making the difficult end-of-life process much less stressful and allowing our family to focus solely on our loved one.

Collaboration can lead to better outcomes

Looking back, even when my family member began his memory care journey, having the ability to collaborate with physicians and nurses seamlessly and in real time could have made all the difference. Instead, for more than four and a half years, my family and I spent countless hours simply trying to establish contact with different providers, waiting for answers, and wishing the time could have been spent with my loved one. With the right technologies in place, these communication barriers are gone.

Modernized communication with the right digital tools can avoid the all-too-common frustrations of those trying to coordinate care for their family members. It transforms the way care teams, patients, and families collaborate. And I’m hopeful knowing that our innovative approach to connected care can lead to better outcomes.