~Liz Hiles
Jena Skelton, LPC, MA, Licensed Professional Counselor with Westmoreland Psychotherapy Associates, joined us for the last part of our four-part Mental Health Series on May 24, 2022, to walk us through a challenging conversation for many of us. A conversation about loss, death, and grief.
These are topics no one really wants to discuss. Fortunately for us, Jena is really comfortable with the topics and dove into them in an open, relaxed way. She led us through discussing the fear of death and all of the conflicting emotions that come with that, including how to navigate the conversations about death and dying, and consciously choosing to thrive through the rest of your day without turning into a billboard for toxic positivity.
First Jenna discussed the fear of and the emotions with death and dying. She talked about the various stages of belief people experience when receiving a diagnosis as well as the depression and anxiety that can set in and affect people throughout their experience.
Forty-eight percent of cancer patients fit the clinical criteria to meet a depression diagnosis. This is much more than sadness. It is a debilitating sorrow and emptiness that weighs you down and makes you unable to deal with daily activities. You can even feel physical pain, increased frustration and irritation, and immense negativity.
In addition to depression, many cancer patients deal with new or increased anxiety which affects senses of fear, guilt, self-esteem, and shame in relation to any questions you may have about your mortality and things you haven’t had the opportunity to accomplish in your life. Jena explained that things in our heads can get complicated, which can spill over into the various areas of our lives. It is more helpful to express these feelings as they happen than it is to hold them all in until they boil over and explode onto situations and people who don’t deserve to catch the overflow.
Developing health coping skills is essential and is most successful when you find out what works for you, specifically. Some people need space to be outside, breathe, meditate, and escape the situation. Others do better if they have a physical outlet to cry, scream or do physical activities like running. Still, others need small spaces to be quiet in and support from others. Experiment with different techniques to figure out what you find most comforting.
Jena walked the group through one quick technique that can be done to help bring you out of the anxiety, depression, or panic you may be experiencing and into the present. Take three deep breaths and put a name to three things you can see, touch, smell or maybe even taste to bring yourself to the present moment. These can be things immediately in front of you or things that you thoroughly enjoy. If this doesn’t work, try choosing a color in your head and then look around the room and try to find at least five things in that color around you while you focus on breathing.
Sometimes finding things to distract your mind and body is really useful. Doing puzzles or working out are examples of this. Anything that forces you to use multiple senses typically works best.
Other times, soothing activities like meditation or taking a bubble bath is what you might need. Things that soothe your mind and help you relax.
Regardless of what helps you or what you’re feeling, all of these things are valid feelings and practices and there are no “right” answers to how you deal with what you’re experiencing.
Jena also shared that it is normal to feel all the feels all at the same time. There is nothing wrong with that. Yes, it’s overwhelming, but it’s normal. You can cry all the way home and then laugh uncontrollably at the dinner table. The best coping mechanism is to decrease your self-judgment about how you are feeling and the responses that you’re having to things that are happening in your life. When the overwhelm creeps in, stop and just breathe.
Communication with others can become really challenging when you’re experiencing a cancer diagnosis or supporting a person experiencing a cancer diagnosis. Quite often well-meaning people in your life who have not personally experienced cancer will respond with toxic positivity. Toxic positivity is when people are overly optimistic about life situations. It is the belief that no matter how dire or difficult a situation is, people should maintain a positive mindset. It’s a “good vibes only” approach to life. This is not a healthy coping mechanism.
It is okay to have down moments and thoughts. It is natural to feel all of the ups and downs as you go through life OR a cancer diagnosis. For many, toxic positivity increases the anxiety and depression that patients deal with. This causes many to feel more pressure to not feel the way they feel or to do things that their bodies cannot tolerate due to the toxicity of the treatments they’re receiving.
It is important to acknowledge that you realize these people mean well while also setting boundaries and letting them know that their comments are unhelpful.
Some things that lead to toxic positivity and other unhelpful conversations are things like getting too much support, which can overwhelm you more and make you feel like you can’t express yourself, or people perpetuating the cancer warrior image – especially if this does not resonate with you! Saying things like “you’re strong, you’ll get through this,” or “you’re too young for all of this,” when none of these things has anything to do with your diagnosis or healing and may not end up to be true.
Not everything will be hope, flower, rainbow, unicorns, puppies, kittens, and butterflies. Shyt gets real and that’s okay.
Set boundaries with the people in your life and be specific about your needs – all of your needs. What are you willing to discuss, what you can tolerate eating, what you need help with … or not. If others are pushing those boundaries, it is okay to tell them “no, thank you,” or that you need a break from them during this time.
Never apologize for setting clear boundaries with people or turning down the type of support they are currently giving. Remember, YOU are the one with cancer and it is YOUR health and healing that matters, NOT theirs.
There’s also a classification of folks known as the idiots. These are people who say all the wrong things and you should put as much distance as possible between yourself and those people during this time. You do not need to tolerate anyone who isn’t going to support you the way you need to be supported.
If they’re family members, place caps and time limits on the communication that you have with them. Examples: you’ll only respond to 4 text messages per day, they only have 30 minutes to talk to you on the phone or they can only see you for an hour every other week. Pro-tip from Liz, if you get push-back on these boundaries, tell them that it’s doctor’s orders!
If you have a terminal diagnosis, it is really important that you are authentic and transparent with the people around you, especially when it concerns death and dying. You may need to repackage how you relay things according to the individual – for example, you should not be using the same word for a five-year-old as you would for someone who is 45 years old – but you should not waver on the facts or the truth. You also may need to vary how vulnerable you are with different people in your life according to your comfort level and their need to know.
Transitioning to having conversations about the end of life is a hard and sensitive task. We have these conversations whether or not there is hope. Even if someone has a 2% chance of life, there is still that factor of the unknown. It is better to be prepared than to be caught off guard.
Keep some of these things in mind if you are needing to have conversations about death and dying:
- Conversations about fear, pain, grief, and loss are hard, yet they are all your own. Each conversation will be unique because you are unique.
- Sometimes people are not ready for the conversations. It could be that you are not ready for the conversations. Either way, try to be respectful and take things at your own pace. If you think your time may be nearing and people are still not ready for the conversations, you may consider writing things down or making a voice or video recording for them.
- Do not depend on your healthcare team to have the conversations you need to have. They do not know the people you need to have conversations with and come at things from a very clinical, scientific perspective and, therefore, often come across as callous and uncaring.
- Also, it is okay to ask providers to pump the brakes, slow down and give yourself a chance to breathe. It is their duty, to be honest with you about your prognosis and it is your duty, to be honest about your ability to handle things in that precise moment.
Cancer can trigger loss of your identity, physical senses, and sometimes even your career and life. You are going to have to make hard decisions and have hard conversations. Some of those can involve legal, financial, and personal decisions about your life or lack thereof, including creating a will and a power of attorney.
Who gets your physical possessions and property? Who will care for your children or animals? Who is responsible for your passwords, social media accounts, and banking. What will you shut down and when?
Sometimes these things can sound simple to do, but when you are facing the end of life, it’s not always simple to execute. It is a very vulnerable act and sometimes the people you’re entrusting your final wishes to may not be ready to hear or honor everything you request.
It is acceptable to display emotions and tears during these conversations, especially with children. Be present in those moments and tell them why they are important to you and that you will always be connected to them.
If you are having a hard time with these conversations, there are a number of books on Amazon that help with guiding you through conversations about death and dying with adults and children.
It is also sometimes helpful to have a go-to person who you can rely on and share whatever feelings you’re having. They are the person you go to when you need to express yourself or if you just simply need a reality check.
Healing takes energy. Grieving your body, your diagnosis, and your life can be exhausting. If you are going to have a chance at healing, you’re going to need to express all of the feelings you’re having – the good, the bad, and the ugly.
Cancer can be very isolating, but there is no need to isolate yourself. Whatever you’re experiencing is natural and so is transitioning at the end of life.
Choosing to thrive is the last topic we discussed. As Jena stated, “this is not to put a band-aid over a bullet hole,” but there really are conversations that people need to have at the end of life with their loved ones.
Jena does not endorse fake positivity. This is a time for you to communicate the bucket-list-type items you would like to do before your time is up. It is also a time for you to focus the energy you have on things you can actually have some control over.
Being grateful is one of those things that you can choose. This is not sheer positivity, this is finding small things daily that you can be grateful for – the handwritten note from a long time friend, the amazing people in your life, laughing until your sides hurt as the most simple thing that struck your fancy while sitting with your best friend.
Next is remembrance. Fear of death is just thinking about all the things you believe you’ll be missing out on. All of the things that are going to happen when you’re gone. Instead, focus on sharing your memories with the people you love. Tell the stories, take photos, fill out the Question of the Day type of things, and email the people you remember fondly so those memories stick with them. This also helps carry your legacy forward, strengthens the memories those you’ll be leaving behind have of you, and creates new memories to shine in the place of the not-so-great memories that are inadvertently being created.
Also, keep allowing your people to support you through this time. One person cannot fulfill every role for everyone. You need your entire support system to help you get through to the end with your sanity and the sanity of those you love intact. It allows for your primary caregivers to have some respite and practice self-care, and it allows you to spend quality time with all of the people you care about. Invite them in. Even if they live far away, even if they are not prepared to be there, invite them in anyways.
ENJOY whatever time you have left. If you’ve always wanted to join the Garden Club, do it. If you strike up an interesting conversation at the doctor’s office, don’t be afraid to start that new friendship. Do all the things. Go to lunch and dinner. See the cabaret. Call the people who live far away. Show your appreciation. Grab life by the horns and ride it until you can’t ride it anymore. It will be rewarding for everyone involved.
Show your appreciation. We’re not talking “thanks for the beautiful scarf,” but deep appreciation. Acknowledge the life well spent, the support, love, and lifetime of memories spent laughing until you cry. Honor the people who have always been there by letting them know what they’ve meant to you.
If you are having a hard time expressing these things to the people in your life, try doing some of the activities mentioned in the program with them instead, around the 57 or 58-minute mark. Sometimes doing an activity and having something other than the conversation to focus on helps people open up and share the vulnerable parts of themselves that they may not otherwise be willing to share.
If you are needing support, check Psychology Today for someone near you. Due to the pandemic, some practitioners may be able to schedule virtual sessions, but keep in mind that some states have geographic restrictions and insurance coverage may be different if the practitioner is out of state.
If you missed this live, 60-minute program, you can access it below.
Jenna graduated college from Mercyhurst University in Erie, PA with a degree in Art Therapy. She then continued on to Graduate school at Adler University in Chicago, IL for Master’s degrees in both Art Therapy and Counseling. After two years of supervised counseling in Boston, MA, she moved back to Pennsylvania to get Licensed as a Therapist.
She has worked with clients of varying age, gender, race, and culture. She has worked with groups, families, couples, and individuals in a residential, outpatient, intensive outpatient, home, and school-based settings. She likes to use creativity in the treatment process, as well as Cognitive Behavior Therapy (CBT) and Solution-Focused Brief Therapy (SFBT). Jena currently works at Westmoreland Psychotherapy Associates in Murrysville, PA, as well as runs online cancer support groups for young adult cancer survivors at YASU.
Struggle is something that Jena believes every single living thing experiences. It is a concept that can bring us into some of our hardest moments in life, but it also presents the opportunity to connect, grow, and learn. Jena believes that confronting our struggles and working through them is one of the most valuable journeys that life brings. We all struggle in different ways and at different times. As a therapist, she hopes to be there with you in whatever your struggle may be. Jena believes in meeting people where they are at and providing comfort, support, and empowerment. She follows a humanistic approach that caters to each individual’s needs. Jena believes in this process and is amazed every single day by the resilience that people hold.
