It’s OK Not to Be OK: Dealing with Grief and Loss Amid FTD and COVID


Partners in FTD Care, Summer 2020
Download the full issue (pdf)

You have chosen an incredibly meaningful line of work, which not only supports persons diagnosed with FTD, but also their families. While it is truly an honor to be part of the care and treatment of the families you serve, it can also take an emotional, physical and spiritual toll, especially during this extremely demanding and difficult time. The COVID 19 pandemic has created even more challenges for families already facing the burden of an FTD diagnosis, which in turn can lead to an increased toll on healthcare providers. Studies have found a higher risk of burnout and Post Traumatic Stress Disorder (PTSD) among employees in the healthcare sector, and direct care workers, such as Certified Nursing Aides (CNAs) and Nurses are especially vulnerable in this time.

For as many challenges as there are with FTD in normal times, the relationships you develop with the diagnosed person and their family can be extremely meaningful and unique during this period of increased isolation. Since individuals with FTD are often younger, your relationships with them, their young spouses, and even young children, can hold a different depth of compassion and connection. In this pandemic, you have likely been a supportive, familiar, and caring surrogate for family members who have been unable to visit or stay connected otherwise.

The losses due to COVID-19 can feel overwhelming, and those feelings can be further compounded by increased anxiety and uncertainty. You are not alone in feeling the pain, fear, worry, stress and unimaginable sadness of this time. Having the opportunity to share, process your feelings, acknowledge your grief, and plan for how to best care for yourself is an essential part of your wellbeing, and your ability to provide compassionate care for those with FTD.

Grief is a natural response to loss. It can present with emotional, as well as physical symptoms. When we allow ourselves to name, acknowledge, and feel the waves of grief, we can better understand our experience and ultimately, better care for ourselves. There is nothing wrong with how you feel right now, yet it can be harmful to pretend otherwise. Efforts to avoid the reality of loss can have physical effects, such as fatigue, and even a weakened immune system. Two innovative examples of health care systems responding to the losses that providers face include the Christina Care Network in Delaware and Rutgers Health/RWJ Barnabas Health in New Jersey. The Christina Care Network’s Center for Wellbeing provides group support and daily inspirational texts. In addition to peer counselors, there are designated “oasis” rooms where workers can take a break during their shift. Rutgers Health/RWJ Barnabas Health, just adopted a “Check You, Check Two” initiative, encouraging staff to attend to their own needs and also check in with two colleagues daily.

Resources are also available for persons diagnosed with FTD and their loved ones and caregivers, including AFTD’s newest publication, Walking with Grief, a guide to grief in FTD, available on the AFTD website.

You are making a difference in the lives of those living with FTD. It is important to know that you are not alone, and support is available. If you are concerned about yourself or a colleague, consult your health care professional or ask your employer how to access mental health resources in your workplace.

If you find yourself in a crisis, the National Crisis Text Line is available by texting HOME to 741741, or you can call the Suicide Prevention Helpline at (800) 273-8255.

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