When Kei Okada maneuvered his bike through the streets of Manhattan one morning recently, he had a lot on his mind, including the vehicles whizzing around him. His overriding concern, however, was figuring out how to connect more deeply with two of his clients: Mark*, an elderly patient with advanced dementia to whom he was providing end-of-life counseling, and Mark's wife and caregiver, Sarah.
As Lead Spiritual Counselor for Hospice and Palliative Care at the Visiting Nurse Service of New York, Kei has a deep understanding of how important strong personal bonds can be in helping families navigate the realities involved in end-of-life care. In this case, he felt a particular need to connect with Sarah, whom he knew was in danger of caregiver stress, or "burnout" -- a situation where a person is under such constant stress from caring for a loved one that they themselves develop adverse mental or physical problems.
Mark has been suffering from dementia for many years. Over that time, Sarah has been there for him day and night, with her own life often put on hold. Being alone with Mark was mentally and physically isolating for her, and watching her husband decline has also been extremely difficult. Yet for Mark, who experiences limited cognitive skills, Sarah has become a rock. Sarah's stress would most certainly affect Mark as well.
That day, as Kei parked his bike outside Mark and Sarah's home, he was carrying something he hoped would open up a new avenue in his relationship with Sarah: his new smartphone. As millions have discovered, a smartphone is a remarkably convenient gateway to all the Internet has to offer, from email to family photos on Facebook to informative articles -- any of which can be helpful in connecting with others, inspiring positive memories and exploring interests.
As soon as Kei entered their home, Sarah reported that she had been reading a lot about dementia lately, trying to come to terms with the mysterious phenomenon affecting her husband. She was eager to share a book she was in the middle of, so Kei took out his smartphone and used the phone's camera to scan the book's bar code. Immediately an online description appeared. This really got Sarah talking. "She got extremely interested in how the phone could become a library of sorts itself," recalls Kei.
Since then, they've used the technology to share articles Sarah has read that helped her cope, and exchange links to other articles. "She'd been feeling stuck in their apartment, and missed her connection with the larger world," Kei says. Through their smartphone library connection, Kei is helping Sarah feel happier and less isolated, allowing her to refocus on Mark.
That same morning, empowered now by the possibility of using his smartphone to help comfort and heal, Kei biked to his next appointment with Henry, a musician who was getting weaker each day. Henry's partner, Kathleen, wanted to share his past musical performances with Kei. Using his smartphone, Kei searched for Henry's former band on YouTube and up popped several old performances. Kathleen was amazed that she was able to watch her husband in the old videos. Being able to connect with happy shared memories from the past helped her process her anticipatory grief for his death -- bringing peace into a difficult situation, and moving the discussion from the negative to the positive.
Back on his bike again, Kei headed to his final appointment of the day with Beth, a woman who had limited mobility and communication skills who was feeling very trapped in her declining condition. When Kei arrived, Beth was calling out loudly -- not from physical pain but from emotional and spiritual distress. After initial attempts to calm her failed, Kei learned from her caregiver that Beth liked opera. He typed "opera" into YouTube on his phone and played a few popular videos. As the singers' beautiful voices emerged from the phone, Beth immediately grew attentive and stopped yelling. Calmly listening to the songs, she was finally able to relax.
These stories, from a single day in one spiritual counselor's life, show the power of the Internet to help calm, heal and connect with those receiving end-of-life care and their caregivers. While Kei is uniquely trained to make these and many other kinds of healing hospice and palliative care connections, his experience can be an example to us all of how a potentially life-changing link to peace for a loved one can be just a click away.
* Patients' names have been changed to retain privacy.