Hashtags of Hope: Healing for the Future

Thelma and Donald Smith,  parents of three grown daughters and six grandchildren, were married in their teens and enjoyed the bittersweet rhythms of marriage for 60 years. Their quick wit and generous spirit brought pleasure to their family and friends, and in their company, one felt appreciated and accepted. 

It was not surprising that when Thelma showed signs of memory loss Donald devised ways to accommodate, making sure she was always safe, didn’t suffer embarrassment or shame, and had opportunities to continue in her role as loving matriarch. It was also just like him to be by her side in the nursing home when it became necessary for her care to be provided there. He was her daily visitor and provided the little touches that a husband would know to be important to him. He would bring in the Lifesaver candies and chocolate kisses she loved, her favorite hot fudge sundae, and a soft throw to keep her comfortable. 

Donald and Thelma’s love story continued; but like for so many other families, COVID-19 had other plans. Thelma’s obituary reads like so many others, yet everyone working in this setting knows that COVID-19 is more than words in an obit or a hashtag on social media. 

And we need to take the time to help caregivers, staff, and family alike, begin the healing process and to know that they have our support and empathy. We need hashtags of hope for the future.

#The Stresses of Caregiving

As caregivers we see these hashtags, observe social media reports, and to our minds come very different images. In spite of the risks involved in caring for nursing home residents during the pandemic and the concerns we have for our loved ones each day when we return from our shift. We are there to make a difference, and we do, but the stresses take a toll.

The Geriatrician who cared for Thelma and Donald before her nursing home admission knows what they meant to each other and how Donald was so protective of his wife when she was failing. The doctor knew Thelma’s frailty and her risk of contracting the infection. Communicating this to Donald and the family was not easy.  

The nursing home clinicians who cared for Thelma appreciated her wit and the way she thanked them for their care. They recognized the devotion of Donald and her family and felt their pain when talking with them about the risks of illness resulting from her frailty and other conditions. Supporting Donald and the family as they made end-of-life decisionswas stressful, made worse by the knowledge that they would not be able to be with her in her final hours.

The nurses, nurse aides, and all interdisciplinary team members who were involved in caring for Thelma experienced enormous stress as well. Their pre-pandemic caregiver role was already challenging, but now they are surrounded with more acutely ill residents, sick co-workers, and certainly more resident deaths. They are there because they care, and this is no less the case even as the stress mounts, their own health is at risk, and the nursing home world is besieged by negative reports and little praise. Their intention to care placed them at Thelma’s bedside during her last moments of life. While there is an inherent reward in caring, there is a cost.

#Acknowledge Caregiver Stress

#COVID-19 does not begin to sum up the humanity and the dignity of Thelma’s life and neither can the hashtag above begin to describe the situation for those who have made a career of caring for the most vulnerable population. Perhaps it can cause us to reflect on the past and current situation for residents of nursing homes and their caregivers. We can learn from mistakes and from science and make the “new normal” better, less stressful, and more caring.

In a recent article, the mental health of the nursing home staff was addressed and care for caregivers strongly recommended:

 “More than anything, staff needs mental health support to recover from the trauma that was experienced [as they saw residents die and colleagues get sick while] operating with little to no staff, having state surveyors on their back, having little to no resources and little to no initial testing capabilities,” all while being “vilified on the news.”

#Fierce Advocates for Change

We at Patient Pattern look forward to hearing from all of you. We look forward to working with you to assess and manage risk and shape a new normal that is better than we ever could have imagined. As always, thank our colleagues and all frontline workers for their heroics and sacrifices.