Building Resiliency During Serious Illness

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Purpose

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.

Background

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.

Goal

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.

two cups of coffee on a table

Final Conversations

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

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

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/Spiritual Messages

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.

Everyday Talk

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.

Illness/Death Talk

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.

Vintage photos

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?

If so, please visit the family caregiver study. The survey will take about 20 minutes and at completion you can receive an Amazon e-gift card. 

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

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

 

Tips And Resources

 
  • Before interacting, breathe, turn off distractions, and think about what your goal is for the conversation given the constraints of both participants. 
  • Be "other-centered." What does this mean? When you focus on what the other person needs and wants from a conversation instead of being focused on yourself, conversations often go better. Communication acts like a mirror. If you treat your loved one as you would like to be treated, listened to, and responded to, then they will often respond in a similar manner. During this difficult time, you may be interacting with many people. Take a moment (breathe) and think about with whom you are talking. Is it a loved one who has COVID-19 and is scared, sick, and weak? Are you talking with a friend or family member who is consistently dealing with the stress and isolation accelerated by the pandemic? Or are you communicating with a person who is on the frontlines (e.g., doctor, nurse, first-responder, bus driver, shopping clerk, etc.?) Consider the person and context of the conversation when communicating. 
  • Give yourself a reason to listen carefully. Hearing is different from listening. Hearing never really shuts down. But words can just amount to background noise if you are not truly paying attention. Practice thinking about the words your loved one may say. Develop a habit of trying to find meaning in those words. If you are fortunate to be able to see the other person (ie. face-to-face, FaceTime, Zoom), pay attention to their nonverbal communication. What are their facial expressions telling you? How about their voice? 
  • Stop talking. This one seems obvious, but humans love the sound of their own voice. Once you have a reason to listen, try to get comfortable with silence. After you have exchanged greetings and pleasantries, embrace the opportunity to listen or to appreciate silence in the moment.  
  • Get out of your own head. Are you listening or are you preoccupied thinking about what you want to say? Be careful- you may miss something precious and important. Are you becoming defensive and thinking about ways to argue with the person? Being "right" may not be important. Are you caught up in your own fears and grief instead of really listening to the other person? Acknowledge the fear and grief beforehand, and try to set it aside temporarily so you do not miss this time with the other person.
  • Ask a question. If you have allowed a silence and the other person hasn’t spoken, you might try a question, but allow silence. Count to at least twenty. Check your voice: is it kind or judgmental? If you can see the other person, remember to smile, make eye contact, and display through your voice and face that you are open, caring, and interested. If it seems right, you can start with simple questions that require little effort such as "How are they treating you here?" or "Can I do anything for you?" Then move to open-ended questions. For example, you could ask, "What have you been thinking about lately?" What are some things that you are doing to take care of yourself?" or "How can I support you?"  These kinds of questions not only show an interest in hearing what the other person has to say, but gives the other person (especially if they have been under extreme stress working on-the front line) the chance to talk at length, to vent, to laugh if that is what they want and need most at that point in time.  
  • Paraphrase the person's statement. Paraphrasing is the hallmark of good listening. To paraphrase is to say in your own words what the other person just told you. It is not mimicry, but a demonstration of your understanding. Paraphrasing not only lets the speaker know that he or she has been heard, but helps the listener clarify his or her understanding and remember the gist of what has been said. The paraphrase is the hallmark of good listening. To paraphrase is to say in your own words what your partner has just told you. It is not mimicry, but a demonstration of your understanding. Paraphrasing not only lets the speaker know that she has been heard, but helps the listener clarify her understanding and remember the gist of what has been said.

    For example, let’s say your mother has just told you, “I’m afraid it’s going to hurt.” If you repeat that exactly, word for word, she may wonder what is wrong. However, if you instead give your interpretation of how you have made sense of it, she will recognize that you are checking your interpretation of her words rather than checking your hearing or mimicking her. For example, you could say, "I understand that you are scared-that you are feeling overwhelmed and scared, and that you might not come through all of this."  You might feel awkward at first trying some of these paraphrasing tips, but you'll find that communication is a skill that can be improved with practice and experience (especially if you are practicing healthy, positive, and productive communication.) Communication becomes easier and feels more natural the more that you use these communication skills.  
  • Pay attention to the nonverbal communication. Technological advancements (i.e., Zoom, FaceTime, Skype) may be an advantage at this time.  Observe interactions with your eyes and ears. An increase in awareness of nonverbal communication will develop with practice. Believe it or not, you are already an expert regarding the nonverbal communication of those with whom you are closest.  
  • Say what you feel. Remember that life is short, and we never know when it may be the last chance to say what you need to say, so say what you feel-don't leave anything unsaid. Leave the door open for the other person to express their feelings, but also allow yourself the opportunity to speak your mind and heart.    
  • If you are in a difficult relationship, this may not be the best time to bring up tough topics. In fact, having time together may bring out more conflicts. Be careful during this time. When people are stressed, they may experience higher levels of arousal, leading to decreased ability to communicate effectively. Try to give each other more kindness, patience, and the benefit of the doubt during this very stressful time. It is possible, with effort, to say what you need to say without threatening, accusing, or insulting the other person. 
  • Keep in mind that you cannot force someone to communicate with you. If they do not have the physical, mental, or emotional energy to engage in a conversation, please respect their decision. Reach out to them in a way that lets them know that you care about them without taxing their energy.    

Advance directives are documents that provide healthcare professionals or family with choices regarding a person’s care should they become unable to communicate those wishes. Below are two well-known documents used to develop advance directives.

Five wishes link: https://fivewishes.org/

Respecting choices link: https://respectingchoices.org/covid-19-resources/

Taking time to yourself to feel of sense of calm will help during these difficult times. Be kind to yourself. Additional Resources

What's your grief website: https://whatsyourgrief.com/

Coping with Grief and Loss_HelpGuide.org
@ https://www.helpguide.org/articles/grief/coping-with-grief-and-loss.htm

What are the stages of grief? How to process and deal with grief or loss

Includes commentary from Dr. Keeley: https://www.insider.com/what-are-the-stages-of-grief

  • What is grief? Grief is a strong emotion that comes out of a serious loss, usually through death. Grief is exhibited in physical, mental, emotional, and spiritual ways that vary in degrees of intensity and length of time. Grief is a personal journey that varies in behaviors and length of time that is often directed by cultural, religious, and family expectations. There is not a right or wrong path through the grief journey. There are three categories of grief that include: anticipatory, post-death, and disenfranchised:
     
    • Anticipatory grief by both patients and family members begins with a terminal diagnosis of an illness (or in our current circumstances, when our loved one is diagnosed with COVID-19, admitted to an ICU, and put on a ventilator because of the high risk of death) because of the expected loss that will accompany the death. Layers of loss include what is anticipated (loss of the family role enacted by the terminally ill, loss of relationships, and loss of tangible benefits achieved by these relationships). Anticipatory grief is characterized by disorientation and suffering by both the patient and family member, but it is also often accompanied by increased feelings of attachment, closeness, tenderness, and a desire to be with the terminally ill during the time that is left.
    • Post-death grief is normal and to be expected. Post-death grief will vary in intensity and length of time. Post-death grief is divided into two sub-categories: non-complicated and complicated grief (also known as persistent grief). Non-complicated grief varies according to each person and can involve a wide variety of physical (e.g., shortness of breath, heart palpitations, gastrointestinal problems, physical numbness, dizziness, headaches, nausea, etc.), emotional (e.g., crying, fatigue, depression, loss of sexual desire, lack of appetite, sleep issues, etc.), cognitive (e.g., short-term memory loss, disorganized thinking, hallucinations, preoccupation with the deceased, etc.), and spiritual (e.g., enhanced faith and connection with religion or conflicts with faith) changes (Strada, 2017). Complicated grief occurs in approximately fifteen to twenty-five percent of people; bereaved individuals experience psychiatric symptoms and maladaptive reactions that continue to cause extreme, persistent, and disabling impairment long after the death.  Complicated grief may also be a result of multiple, unprocessed, previous deaths, especially if the deaths come within short time frame.  
    • Disenfranchised grief is when grief is not recognized or supported by friends, family members, communities, or social norms; individuals feel marginalized and their grief feels disqualified. Situations that often unfairly trigger disenfranchised grief may include death by suicide, death by stigmatized illnesses (i.e., AIDS in the 1980s), death of "adjacent" people, death of a family member in prison, death of an ex-spouse, or even death of a pet. People in these situations may not have the needed social support to help them move through the grieving process. 
    • New strategies are needed to replace passive coping strategies during the mourning process by providing opportunities for self-transformation and personal growth, resilience, and renewal and/or revision of relationships during the grieving process. There is also a need for greater understanding regarding responses to the grieving process influenced by culture, gender, spirituality, and level of cognitive development (e.g., age and education). 
  • We think about grief with death, but when else might people grieve?

    Any major loss can trigger grief, including overwhelming losses such as those currently experienced worldwide as a result of the COVID-19 pandemic. Other reasons why people may grieve include death of a beloved pet, a terminal diagnosis, divorce; and even career loss (which may negatively impact identity).

  • How can grief be differentiated from worry or stress?

    Worry usually results from situations or events for which people have no control and can be inflamed because of people's fears. Stress is the physiological reaction to grief that leads to elevated blood pressure and heart rate, as well as an increase in cortisol, the primary stress hormone. Cortisol increases sugars (glucose) in the bloodstream, enhances the brain's use of glucose, and increases the availability of substances that repair tissues. Stress and cortisol increases comprise a psychological reaction that can cause difficulty focusing, problem solving, and managing emotions. 

  • Stages of Grief: Dr. Elizabeth Kubler-Ross (1969/1997) 5 Stages of Grief: Denial, Anger, Bargaining, Depression, and Acceptance https://grief.com/the-five-stages-of-grief/

    • Many people do experience all of these stages.
    • They are not necessarily linear (so do not look at them as stage 1(denial), then onto stage 2 (anger), etc.
    • They can come in any order; they can be experienced more than once (think cycles) and are best dealt with each time that they are experienced.
    • In addition, various individuals in a family may experience these stages in different orders but occurring simultaneously (which can cause familial conflict).
    • The 5 Stages of Grief are a useful framework for everyone who is trying to understand the complexity of grief; they help people realize that they are not alone and that we all experience complicated emotions and intellectual reactions that will come in waves and varying degrees of intensity.

     

  • Sixth Stage of Grief: Daniel Kessler (2019): Finding Meaning

    • See https://hbr.org/2020/03/that-discomfort-youre-feeling-is-grief
    • “Finding meaning” highlights the importance of seeing the potential for growth and healing through the pain that is experienced through grief.
    • “Finding meaning” through the loss is a very empowering, positive, and important stage.
    • Highlighting this stage reveals the necessity for looking for the light in the midst of the dark that shrouds death and covers us in a dark veil of grief.

     

  • What strategies can you use to help during the grieving process?

    • It is important to acknowledge the grief.
    • Be willing to acknowledge that your grief journey is unique to you (and that others may judge you if you are doing it differently than they would).
    • Find people with whom you can communicate and who will listen to you (e.g., friends, families, church support groups). Seek out people who accept where you are in the grieving process at that point in time.
    • You may want/need to seek out professional help (psychiatrists, psychologists, counselors, clergy trained in grief, support groups, etc.)
    • Pay attention to the physical, emotional, and mental demands of grief and to find ways to process/deal with each of these aspects of grief (i.e., meditation, prayer, exercise, humor therapy, journaling, support groups, etc.).

     

  • How long does the grieving process usually last?

    There is no exact timeline, but the grieving process depends on a wide variety of factors:

    • What factors might cause the length of the grieving process to differ? Suddenness of the death, personality, resources, types of and amounts of support, cultural/religious/family norms, age of the person experiencing the loss may all be contributing factors.
    • What can make grieving easier or harder? The ease or difficulty of the grieving process may be affected by individual circumstances, including love and support of family and friends, communication styles, faith in an afterlife, the passage of time, and personal resiliency.  

     

  • Communication is vitally important when dealing with grief.  You can provide comfort to someone who is grieving a loss by engaging in the following:

    • Verbal messages such as “I am here for you if you want someone to talk with” or “I can’t possibly understand what you are going through, but I am hoping to understand it better with your help, if you are willing to share with me.”
    • Nonverbal actions such as hugs, a comforting touch, appropriate eye contact, and/or a card or letter
    • Acts of service such as making a meal or performing a duty to help during this time of grief (i.e. mowing the lawn, cleaning the house, doing laundry, etc.)
    • Acts of kindness such as listening and showing empathy, compassion, patience, the willingness to be present to help the person as they walk their personal grief journey.

 

  • What should I avoid doing if I am trying to help someone grieving?

    • Avoid judging the person as they walk their personal grief journey.
    • Remember what works (or has worked) for you may not work for them; the length of time that they are dealing with their grief may differ from yours—there is NOT a right or wrong timeline.