Building Resiliency During Serious Illness
The purpose of this website is to provide families with resources to support both themselves and their loved one who is seriously ill or was hospitalized due to COVID-19. No one wants to be alone when they are sick or dying; however, in these unprecedented times, we need to identify ways to cope with the difficult changes the COVID-19 virus has forced upon us as a society. We offer tools to help both families and providers during these difficult times. We are also offering families a place to share experiences on our blog to offer advice to and garnish support from each other during this difficult time.
Faculty from Kent State University College of Nursing with expertise in the care and support of family caregivers across the spectrum of illness (seriously and critically ill patients, palliative care, and hospice care), including Dana Hansen Ph.D., APRN, Amy Petrinec, Ph.D., RN, and Tracey Motter, DNP, RN, have teamed up with Maureen Keeley, Ph.D., professor in the Department of Communication Studies at Texas State University, to offer resources for families and providers of patients suffering from serious COVID-19 infection.
In their research and practice, Drs. Hansen, Petrinec, Keeley, and Motter found a variety of techniques that are helpful for families and patients facing serious or critical illness. Our hope is this website and the blog space will provide family members of individuals who have or have had COVID-19 with a variety of resources and support options.
In her research, Dr. Hansen found spending time together is important during a serious illness. However, during these difficult times, this may not be possible in the traditional sense. Below are some creative ideas to connect with loved ones.
Consider painting, creating signs, or reading a favorite book, poem, or story to share with your loved one via FaceTime. If your loved one’s energy levels are okay, play a game on Zoom such as Yahtzee. In this way, the time can be an expression of love and identity. Just being present with your loved one on the phone while watching a favorite movie or TV show may be enough to provide a sense of comfort and connection.
If you know that someone you love is dying, please spend time with them (as much as possible), make sure that there is nothing left unsaid, and be left with no regrets. Make sure that important people in your life know that they are loved and that nothing is left unsaid IF the worst outcome (death) occurs.
When a loved one is seriously ill with uncertainty about the illness outcome, final conversations are important and help bring meaning. Dr. Keeley has found six messages important for final conversations. We have listed them below with suggestions for how to facilitate these conversations during this difficult time.
Love is the most common and important message for adult family members and is communicated verbally through words, as well as nonverbally via hugs, eye contact, hand holding, kisses, or other expressions. In these unprecedented times, typical nonverbal love talk is not possible. However, there are no wrong or right ways to express love.
Identity messages that focus on the examination of self can lead to a redefinition of self. The serious illness or pending death of a loved one is a threat to one’s identity, making final conversations imperative. An example of an individual identity message is when the seriously ill or dying share how they see you as a person and as someone they care about. For example, it may be, “I want you to take care of yourself,” or “you are so beautiful,” or “you are the kindest person I know.” Other types of identity messages may strengthen your bond, such as “I am going to miss….” Relational messages are those that signify the relationship, for example, “You are my life, you are what I live for, I am who I am because of you.”
Religious messages often incorporate doctrinal and denominational experiences that include specific behaviors, beliefs, or rituals of a system of worship from a specific religious group. Spiritual messages may include sharing experiences that happened to those involved in the conversation. Conversations about faith or spirituality may be helpful as these types of interactions may bring comfort.
Examples of activities related to religion and spirituality may include receiving sacraments such as the Anointing of the Sick in the Catholic church or watching a virtual church service or mass with family members. Singing hymns or reciting universal prayers may also be helpful.
These talks can focus on ordinary conversations that include daily activities, favorite books and movies, and shared stories. Everyday communication performs numerous and simultaneous purposes within families, including building bonds, coordinating interactions, structuring time, and sharing histories.
Difficult Relationship Talk
These discussions include conversations with those who are important to seriously ill patients despite complicated relationships. Difficult relationship talk includes messages that try to understand or forgive one another. These types of conversations are challenging but can be important to both the seriously ill and the family.
Also called instrumental talk, illness/death talks are conversations that help patients and families to discuss their needs. This includes discussion regarding advanced directives (e.g. final wishes) and details about the illness, treatment options, funeral planning, and even chores that need to be completed.
Build A Legacy
Often families seek to create a legacy of their loved one by creating a way to maintain connection and share memories. This process can be therapeutic and provides something tangible to keep while you are apart from your loved one. Some suggestions are to maintain your loved one’s social media page(s), allow others to post sentiments about them, and record final conversations (often people save voicemail messages from their loved one). Create a memory book with pictures, emails, or letters. Make a blanket (or have one made) with favorite clothing items of your loved one. There is not a right or wrong way to do a memory blanket, and for those who enjoy creative work, this may be a good option.
Participate In Research
Have you had a family member in an intensive care unit during the COVID-19 pandemic?
Thank you to those who participated in the family caregiver survey study. That study has been closed; however, you can still participate in the caregiver blog and the caregiver registry.
Caregiver Blog: In her research, Dr. Hansen found that caregivers receive benefits from blogging. This blog community is for families to connect with other families who have a loved one who is seriously ill or was hospitalized due to COVID-19 and cannot be with them right now. A blog community is a way to provide and garnish support during these difficult times. This blog is monitored to assure an appropriate and safe space. Learn what others are experiencing and what strategies have helped them survive the emotional rollercoaster. Blog about your experiences here.
Caregiver Registry: Our research relies on volunteers like you who are willing to share their experiences by participating in our registry you agree to be contacted periodically about participating in our research. We are interested in helping family caregivers 1) who connect with their loved ones who use social media to tell their illness story during a serious illness, 2) of adults who are in Intensive care units (ICU) or Long-Term Acute Care Hospitals (LTACH) or have recently experienced an ICU/LTACH stay, 3) as adolescents of a parent who is in hospice, and/or 4) who wish to participate in research about spirituality and spiritual uncertainty among
Link to the caregiver registry: https://www.kent.edu/caregiver