Family & Patient Support Archives

Coping Ahead for the Holiday Season

When you have a child diagnosed with cancer the upcoming holiday season will not be typical of the holidays you have experienced in the past. It is important and extremely helpful to acknowledge that simple fact ahead of time, so you can cope ahead. Coping ahead helps prevent us from being blindsided by our grief.

You can cope ahead by anticipating which situations may be difficult and preparing what you will say or how you will act in these moments. This may reduce your vulnerability to intense emotions and help you manage your emotions most effectively. The following tips will help you cope ahead this holiday season.

Anticipate Heightened Emotions

For many of us, this time of year presents as a dialectic. A dialectic teaches us that two things that seem like opposites can both be true and exist at the same time. While the holiday season may be a time of joy, celebration, and getting together with loved ones, it can also bring about intense emotions such as anger, sadness, and irritation. Allow yourself the full range of these emotions without avoiding your feelings. Tell yourself that it is understandable that you will feel many emotions and give yourself the permission to respond to those emotions as you see fit. Appropriate responses may include declining an invitation to an annual function or pushing through when there may be positive outcomes to being with people you love. Plan how you want to spend your time and with whom. Coping ahead may be reviewing your holiday schedule and determining which traditions and gatherings are important to you and your family and which ones you plan to decline or eliminate this year. Coping ahead would also include preparing and practicing your response to invitations. For example, you may simply decline an invitation. No further explanation is required.

Set Realistic Expectations

Give yourself a break this year. Cope ahead by asking for help. If you usually host during the holidays, ask someone else to take over this year. Let friends and family know that you and your family may not attend everything this year and/or may leave early if things feel too stressful. Discuss with your family ways that the holidays may be different for everyone this year.

Take Care of Yourself

Cope ahead by making sure to plan time for self-care. Taking care of our physical, emotional, and spiritual self will help us be more resilient during the holiday season. Good self-care also protects us from increasing symptoms of depression and anxiety. Practice healthy eating, regular exercise, good sleep, hygiene, prayer and/or mindfulness practices, and appropriate medical check-ups.

Self-Soothe and Distract

Plan times when you can take a break from the stress of the holidays. Cope ahead by making a list of activities that will distract you, even momentarily, from the realities of treatments and the expectations of the holidays. This list may include distractions such as a movie, coffee with a good friend, or listening to your favorite music. A self-soothing list may include a run, massage, or a hot bath. Cope ahead by pre-planning and scheduling these activities; otherwise they will not happen regularly.

Seek Help

Cope ahead by researching and understanding the signs of depression. Promise yourself that you will reach out for help if you see these signs during the holidays. An excellent way to cope ahead is to research and know where you will go or who you will call if you recognize depression symptoms. Discuss this with your spouse or a close family member or friend and hold each other accountable. If you would like to discuss counseling, please visit CURE’s Counseling Program page for information.

Recognize the Good

Coping ahead to help increase your resilience may include naming three things that went well at the end of each day. Another option may be to list three things that you are grateful for each morning. Including the whole family in this practice may help with surviving the holiday season and who knows, it may become a new family tradition.

By Carleen Newsome, LPC, CPCS, ACS

Clinical Director at The Summit Counseling Center

Cure In Family & Patient Support

Transition: How to Successfully Journey Forward

by Elizabeth Record DNP, Mary Batcha RN, and Lillian Meacham MD

Childhood cancer survivors are challenged with many transitions of care in their journey after a cancer diagnosis. First, they transition from a healthy child to a child with a cancer diagnosis. Then they move from a child with cancer on treatment to a childhood cancer survivor who has completed treatment. And finally, they transition from a childhood cancer survivor to an adult survivor of childhood cancer. One of the most challenging transitions for many childhood cancer survivors and their families is the transition from pediatrics to adult based health care. For some survivors, this transition is due to an upper age limit at a pediatric healthcare system, and for others it is due to a geographic relocation for college studies or a first job. It is essential for survivors to prepare to journey forward as young adults who can navigate the adult health care arena.

Below are some suggested strategies to ensure successful transition:

Start early to prepare for this very important transition. Survivors should talk to their pediatrician and their pediatric survivor team. Planning ahead of time, communicating with the current and future healthcare teams, and advocating for their healthcare needs are all very important initial steps.
All survivors should have a summary of the treatment they received. This is typically called a Survivor Healthcare Plan (SHP). This is an important tool as it will outline the potential late effects associated with the individual treatment. It will also have a summary of past testing that has been done and suggest recommended future testing to assess any late effects that may occur as an adult.
It is important for each survivor to have an understanding of the contents of their SHP as each survivor will be the person who advocates for their health and schedules the suggested testing.
Survivors should identify and establish care with an adult healthcare provider for general healthcare needs or concerns. Additionally, survivors should share their SHP with the identified adult healthcare provider.
If available, survivors should identify an adult survivor clinic that is familiar with the Children’s Oncology Group Long-Term Follow-Up Guidelines, which can be found on the COG website. This will assure they are updated periodically on any changes that may alter their SHP. Many adult healthcare providers are reluctant to provide care for cancer survivors as they are not familiar with the recommended guidelines. The Young Adult Survivor Clinic at the Emory Winship Cancer Center is a local survivor clinic focused on long term survivorship care.
Maintain insurance benefits. Most survivors can stay on their parents’ insurance until age 26. However, if that is not possible, it would be important for each survivor to reach out to their social worker or a financial counselor who may be able to assist them as they strive to obtain insurance benefits.
Register for Cancer Survivor Link. This is a password protected, secure, patient-controlled website designed for survivors and providers that will allow each survivor to learn about survivorship, share their personal health information with each of their healthcare providers, and store their Survivor Healthcare Plan. Registration is available on our website.

In Atlanta, patients under 21 years of age can be seen in the Aflac Cancer Survivor Clinic (404-785-1717). At age 21, patients are transitioned to the Young Adult Survivor Program at the Winship Cancer Institute at Emory. The contact for this program at Winship is Mary Batch RN (404-778-3473) or [email protected].

Cure In Family & Patient Support

Managing Scanxiety

The term “scanxiety” commonly refers to the anxiety, worry, and fear associated with post-treatment follow-up imaging. A follow-up MRI or CT scan months to years after enduring cancer treatment can lead to overwhelming feelings of anxiety in anticipation of the imaging results. One of the reasons for such anxiety is that parents and children who have undergone cancer treatment have learned, in profound ways, how unpredictable cancer and its treatment can be.

Managing one’s own “scanxiety” is complicated enough for an adult cancer survivor who undergoes routine follow-up imaging; it becomes even more complicated for the parent who is guiding his or her child through the process of follow-up scanning. Parents often must manage their own anxiety while navigating how to best help their children deal with their feelings.

Given the potentially overwhelming nature of such anxiety, it can be helpful for both parents and children to follow anxiety prevention and reduction techniques during the weeks, days, and even minutes before the imaging takes place. Here are some ideas for reducing the stress associated with follow-up scanning.

Positive Self-Talk: When worry or rumination begin to creep into your – or your child’s – mind, remember that checking for recurrence does not mean re-experiencing past trauma associated with the original cancer diagnosis and treatment. Remind yourself to take each moment as it comes, knowing that you and your child will process new information if needed, when needed. Try to turn negative thoughts into positive ones by imagining yourself and your child facing any new problems with courage, and resolving them successfully, one day at a time.

A Celebration of Self-Care and Wellness: Checking for cancer recurrence may naturally lend itself to worrying about the future. Refocusing your own thoughts and your child’s thoughts on the fact that together you have overcome important past struggles can become a moment of triumph and celebration. Follow-up scanning can be a reminder of victory rather than a trigger for excessive worry. Turn the experience into a moment of positive affirmation of your past resilience in the face of adversity.

Laughter – and Smiles – Are the Best Medicine: Before the scan, plan an event or outing that brings laughter and joy to you and your child. Sharing a special meal together or scheduling a “field trip” to a museum, mall, or sports event can help redirect your mind and your child’s mind away from future scan results and toward present, happy moments that you share together. Creating joyful and meaningful memories before the follow-up scan may later serve as a focus and source of comfort to ease worry and fear during the actual imaging process. Reminding yourself and your child to smile periodically in the face of tension and stress can itself also have powerful calming effects.

Practice Mindful Awareness: Despite your best efforts to refocus your thoughts from negative to positive ones, and to lighten your mood through laughter and creating happy memories, “scanxiety” may still take hold – in the waiting room, during the scan, or any time before or after the appointment. When managing your worry or racing thoughts becomes overwhelming, practicing mindful awareness by centering your attention on breathing exercises (taking slow, deep breaths while closing your eyes, relaxing your muscles, and centering your thoughts on how inhaling and exhaling feels) can help shift your attentional focus away from future test results and toward your own control of physical experiences and sensations. Centering your attention on those things within your control, including your awareness of your own breathing and intentional muscle relaxation, can help you to regain a sense of calm in the midst of potentially difficult circumstances.

Create an Action Plan: Create an action plan with your son or daughter to manage possible anxiety surrounding a scan. Talk about your worries and fears ahead of time, and agree together on a plan to reduce stress. The plan may include practicing healthy habits, like eating and sleeping well in the days leading up to the appointment, as well as specific plans when anxiety may become prominent. You and your child may want to decide in advance what kinds of happy memories to focus on while in the waiting room, what prayers you may want to say, or how you will refocus attention away from automatic negative thoughts and toward positive ones. You may want to practice deep breathing exercises and mindful awareness of your physical state prior to the appointment so that you have a go-to tool for calming yourself and keeping anxiety at bay. Having a plan of what to do in the face of stress will help you and your child feel prepared if you experience expected, or unexpected, “scanxiety.”

Rebecca L. Marshall, Ph.D. is a licensed psychologist and staff therapist at The Summit Counseling Center in Johns Creek, GA. She completed her post-doctoral fellowship at U.T. M.D. Anderson Cancer Center (Division of Pediatrics, Children’s Cancer Hospital, 2000-2002), and has over 20 years of clinical and research experience working with children and adolescents, and their parents.

Cure In Family & Patient Support

An Invitation in the Mailbox

By LaTressa McVey

I remember the first day I held Janae in my arms. Within her first minutes, I could envision my grandkids, sending her off at college, first day of kindergarten, and her taking her first step. I never imagined that I would not only hold her while she took her first breath, but I would also hold her as she took her last.

I lost my Janae at eighteen years-old, only four years after she was diagnosed with cancer. Months into my grieving, I knew the feeling I was feeling was more than just heartbreak. A part of me died when my daughter took her last breath. I felt like a stranger left in the world with part of my heart missing. Friends and family tried their best to be there for me, saying some things that were both helpful and hurtful, such as:

“She’s in a better place” (There is no better place for her then being in my arms.)

“How are you feeling” (I thought that was obvious – my child has passed away.)

“It will get easier” (It became easier for me to hide my pain from others.)

“Is there anything I can do for you” (I don’t even know what to do for me.)

I felt as though maybe I was grieving wrong. The world is telling me I would get better… but when?

Then an invitation arrived in my mailbox from CURE inviting me to “CURE Childhood Cancer’s Annual Weekend of Hope and Healing.” Out of pure frustration with myself and my grief, I decided to go. I needed to see others like me. I needed to see them healing because the world told me it would get better and I did not see better in my future.

I didn’t know what to expect, but I knew what I wanted to see. I was looking for someone like me: someone in pain, hurting, and feeling helpless. I needed to know these things I felt were not abnormal.

My first year at Hope and Healing was somewhat of a haze. I mostly remember that I found myself in the company of others who were dealing with loss. It gave me hope to know that I was normal in my grieving process. I stayed quiet and cried a good bit, but I didn’t feel alone. On the last day we were asked to fill out a survey that asked if we would attend the following year. I wrote, “maybe not” because I felt like I had gotten what I needed.

I thought I was becoming an expert at grieving and braced myself for Christmas because I knew it would be a hard time of year. But December was unbearable without my sweet Janae. I felt all alone again. When I found the invitation to Hope and Healing in my mailbox the following year, I knew I needed to go back.

This second year was much different because I was in a different place. I was more at ease. Unlike the previous year where it took everything I had to keep from crying, I spoke and told stories about my daughter. I actually listened to the speakers and heard what they were saying this year. I was so glad that I could open my mouth and share this time around. After one of the sessions I even met a young woman newer to grief than me. We talked and I felt like maybe I was able to help her.

CURE Childhood Cancer’s Weekend of Hope and Healing has done so much for me that a simple thank you is not enough. To know that I am not alone in this journey has been more healing to my heart than I could have ever imagined. CURE has been a light in my darkest of days. To those who have hosted and attended the event, you have helped me at a time when I felt helpless.

Cure In Family & Patient Support

Legacy of Love

As we sat down with Arlena Pou, our intention was to learn about last year’s Legacy of Love Day, which was the first she had attended. In the end, we learned much more about her son, Herbert, than we ever did about her experience. And that’s okay – because even nine years out, some things just need to be said.

Herbert Shaw, Jr was nineteen years old when medulloblastoma took his life on February 10, 2008. He was a drum major in his high school marching band – a popular boy who loved church and shared his gift of music wherever he could. He was a thoughtful and kind young man who left his mother a mission to grant scholarships to brain tumor survivors.

His loss also left a void in Arlena’s life that she knew she couldn’t fill.

“You don’t get over this,” she said firmly. “I don’t expect to ever get over it and I don’t expect anyone to understand that I won’t ever get over it. In a way, I don’t even want to get over it because I refuse to forget my child.”

Arlena attended CURE’s Annual Weekend of Hope and Healing several times and there she found a community of support. But as years went by, her stage of grief was different than many of the parents who had so recently lost their children. When she first heard about the Legacy of Love Day, she was slightly apprehensive but decided to give it a try.

“I needed to reconnect with my co-grievers who share in this community,” Arlena said. “It ended up being a day that revived me and kept me going. It is a safe place to share your heart or say nothing and take it all in.”

The goal of CURE’s Legacy of Love day is to continue to allow bereaved families to gather together in fellowship while celebrating and honoring the lives of their children in a more relaxed, recreational atmosphere. Families hear from a speaker whose topic is relevant to the grieving process of parents who are further along in their grief journey and the day culminates with a memorable candle lighting ceremony.

“The day was very fulfilling for me. I loved reconnecting with friends, sharing Herbert with them, and meeting others who have had this same experience. I also appreciated leaving with something tangible so I could always remember the weekend.”

Like Arlena, we understand that you will never get over the loss of your child. There will always be things to say. If you are further along in your grief journey, we would love for you to join us at CURE’s Legacy of Love in the future.

For more information, please email Lisa Branch at [email protected].

Cure In Family & Patient Support

A Mother’s Hope and Healing

My family’s grief journey started only a year and a half ago. What I found at CURE’s Weekend of Hope and Healing was a safe place for my family to grieve, cry, laugh, learn, share, and make new friendships. In short, I am grateful for the care, connection, and clarity I get from the weekend each time I go.

CARE

I can only speak for myself, but once I become a bereaved parent my perspective on life and relationships changed drastically. I lost some friends, gained new ones, but quickly realized that a lot of time I was grieving alone. And when I was feeling desperate and wanted to call someone, the list was pretty short or non-existent because I just wanted someone to listen without feeling sorry for me, or giving advice, or getting upset themselves. I wanted someone that truly cares about my story and is able to just be there without judging my grief. And then I went to the Weekend of Hope and Healing and felt so grateful to be in a place where I could be me and would be heard, not judged, and just listened to. I realized I was lucky to have a place and people who cared and who provided not just a safe place for me to grieve, but who genuinely cared about my well being and my story, my life, and my family.

CONNECTION

You probably heard it by now if you know a bereaved parent: it is a club no one wants to be part of but once you are in it, you are so glad that there are others who understand your pain. For me, personally, this connection I get at the Weekend of Hope and Healing with other families is one of the best things I find each time I attend. Hearing that a mom is going back to school to be a nurse and seeing her excitement of following her newfound dream, or seeing a mom who found a new love and is expecting her rainbow baby, getting to know newly-bereaved moms, and hearing from moms who have been there for ten-plus years and receiving their words of hope and healing is something you do not get in your everyday life. And it is so much more real and meaningful to connect with these parents who know the pain and struggle of your days as this is your new world. These are your people – your new tribe.

CLARITY

The last, but not least, is that I always learn better ways to cope with my grief at the Weekend of Hope and Healing. Counsel, experienced speakers, workshops, conversation with others, and time provided to focus on my grief and struggles usually provides newfound clarity in how to tackle my issues in the future. I know grief is not curable and I do not expect to ever be cured from it. I know I will be grieving my whole life, but just seeing how my experience changed from last year to this year and how much “easier” this year’s experience at the weekend was gives me hope that even though my heart might never completely heal and be whole again, my grief can be lighter and different and that it is okay to begin healing and feeling better.

So I would like to thank CURE for all they do but especially for all they do for us bereaved parents as what you give us is truly priceless. We love you so much.

Ana Kucelin is a wife and mother of two children: Kalie, who is five, and Bianka, who was diagnosed with brain cancer at the age of four and passed away after an eighteen-month battle on July 29th, 2015. She is the Menu and Wellness Specialist for Decatur City Schools.

Cure In Family & Patient Support

5 Ways to Comfort a Hurting Friend During the Holidays

Welcome December! Welcome festive holiday cheer, brilliant lights, fanciful presents strung up with ribbons and bows. Welcome mittens, toboggans, and snow… please come snow. Welcome singing, joy, and toasty mugs held close to the lips with both hands. Welcome stockings, trees, and porcelain finery preserved for generations and proudly displayed for one month before being packed back up. Welcome friends, family, and warm feelings for all humankind. Welcome tears…

Wait, what? Tears?

Yes, Tears. All of the aforementioned pleasures that warm most of us can cause angst, dread, and tears for those who are hurting. Unfortunately, in our childhood cancer world, too many are forced to face this season without the children who make it so special. But we don’t have the market cornered on pain. Many are dealing with heartbreak and struggles. While December is a season of love and giving, it also seems to magnify pain and loss. Maybe that loss is a child, a spouse, a parent, or a relationship that they thought was forever. If we pull back the smiles like an old winter coat, we all have friends who are hurting.

So what can you do during December to comfort your hurting friend?

Of course, there is no pat answer for every situation. No two hurt alike and no two respond to the holidays in the same way. But as a father facing his second December without his daughter, I want to offer five tips that may help.

1 Invite but don’t expect – We hurting run a fine line. We don’t want to be left out of every social occasion, but the thought of being amongst revelers at a holiday party can feel completely overwhelming. So while you might get turned down, please send the invitation. If they accept, set the place but also know that the grief ride is full of sudden twists and turns that might make your friend back out at the last minute. If that happens, the last thing they need is a guilt trip – their ride is wild enough.

Another note is that my wife and I have turned down invitations simply because we don’t wish to bring a somber tone to a party. That may seem ridiculous, but we have seen the tenor of room change when we enter because friends are either concerned about our emotional state or worried that others will say or do something that will upset us.

2. Offer tangible help – Maybe you can’t buy an expensive gift, but can you hang outdoor lights? Can you afford a couple of hours to help decorate a tree that otherwise wouldn’t make it out of the box? Could you spend an afternoon wrapping presents? Could you offer shopping advice to a man who has lost his wife to help minimize a letdown for their children? This is the action side of love. Love does! Love molds unique talents into lavish gifts. Doing love doesn’t have to be grandiose or expensive and is often best when anonymous.

3. Speak their name – There is a common theme among my fellow grievers: we all live in constant fear that our loved ones will be forgotten. After the shock of the loss recedes, this is the next frightening and painful thought that keeps us up at night. The holidays magnify this fear. You can help by simply speaking their name. Do you remember a funny story about a holiday gone by or did you find a picture that made you smile? Share it. Send a note with a special memory. You could even look for an ornament that reminds you of your friend’s loved one. Did they love penguins, princesses, or tools? An ornament would be a special touch that tells your friend that you remember.

4. Respect a decision to minimize – The holidays tend to turn our hearts toward home. Regardless of how much a grieving person enjoyed holidays past, there will be moments that are deeply and profoundly painful because that home is no longer intact. Every decoration and light brings the loss to mind. So please understand that a person who is grieving may identify with Ebenezer Scrooge, The Grinch, and Burgermeister Meisterburger much more than Bob Cratchett, the Who’s in Whoville, or Kris Kringle. They may not decorate at all and shun celebration – and that’s okay!

5. Give of yourself – Everyone likes shiny presents. But we who are hurting need your time more than anything you could wrap. It might be rebuffed, but a genuine offer of presence is more valuable than gold. Knowing that someone is available should the need arise could very well be the thing that gets your friend through the season. If called upon, come loaded with tissues and a tender shoulder – say little and listen much and know that you’ve given the best gift.

I can’t know your friend’s situation, but the overarching theme here is love and communication. Your friend is wounded by loss and the holidays often feel like coarse salt rubbed into the wound by a big, fat mitten. Tread cautiously, lovingly, and be there to share the happiest holidays possible.

Cure In CURE Childhood Cancer, Family & Patient Support

CURE’s Partners in Caring Counseling Program

At the heart of CURE Childhood Cancer is the desire to address the critical and urgent needs of families affected by childhood cancer. CURE recognizes that childhood cancer is an extremely difficult, traumatic diagnosis, in which treatment and outcomes put strain and stress on the entire family. To offer additional support, help and encouragement for families of children diagnosed with cancer, we connected with licensed counseling centers across the state of Georgia and launched CURE’s Partners in Caring (PIC) program in 2013.

The PIC program was designed to provide families’ access to professional counselors who understand how childhood cancer, and its experiences, can affect the psychological and emotional well-being of the entire family. Since the launch of the PIC program we have continually strived to break down barriers associated with accessing counseling services. Our PIC network includes 24 centers and over 50 therapists across the state of Georgia!

Accessing the PIC benefit therapists is an easy process. To qualify, families must have a child who meets one of these qualifications:

Diagnosed with a childhood cancer, LCH, HLH, or aplastic anemia
Relapsed with a childhood cancer, LCH, HLH, or aplastic anemia
Passed away due to childhood cancer, a cancer-related circumstance, LCH, HLH or aplastic anemia

The PIC program provides up to ten (10) counseling sessions at a minimal cost to families. Additional details:

If you choose to utilize these counseling services, CURE will pay 100% of the first session.
After the first session, families are responsible for $25.00 copay for each additional session (sessions 2-10).
Counseling sessions may range from individual counseling for the patient, siblings and/or parent to marriage counseling, grief counseling, or any combination of these services.
You also have the option to divide the 10 sessions between multiple family members based on your family’s needs.

To sign up or learn more, contact Karen McCarthy at [email protected].

Cure In CURE Childhood Cancer, Family & Patient Support

How To Be A Shelter For Friends and Family Caught in Life’s Storms

By: Shawn Murphy

Whether a friend or family member has recently received a difficult diagnosis or is reeling from a personal loss, each of us can provide shelter and comfort to those caught in life’s storms. We all have the ingredients necessary to do so. We need only a compassionate heart, empathetic ears, helping hands and watchful eyes.

1). Compassionate Heart

Giving shelter starts with a compassionate heart. Compassion is the natural emotion that one feels in the response to the suffering of others. It is unnatural to ignore pain and suffering in ourselves or others. In its purest essence, it simply comes back to the golden rule: “Do unto others what you would have them do unto you.” Without this essential first step of feeling love and caring, the act of mercy – reaching out to help others in their time of need – would never happen.

2). Empathetic Ears

Being a shelter to others involves empathetic ears and good listening skills. It is important to let the hurting or grieving person know that it is okay to share what they are feeling and to allow them to determine the timing of when or if they decide to share.

Equally important is how we listen. Our role is to be empathetic listeners who seek to understand, accept, and acknowledge feelings in a safe environment and validate the emotions while withholding judgment.

3). Helping Hands

Providing shelter to others involves acts of mercy; showing kindness and lending helping hands to those who are in a difficult or even desperate situation. For a person or family who is in the midst of illness or loss, helping in practical ways is greatly appreciated, with continued support over the long haul and providing extra help on special days.

There are many practical ways to help a grieving person. You can offer to pick up groceries, run errands, provide meals, receive phone calls, help with paperwork, do housework, watch children, look after pets, take them to lunch, or share an enjoyable activity with them.

The goal is to let them know they are loved and to demonstrate your care by personally helping and providing ongoing support.

4). Watchful Eyes

Finally, offering shelter also involves offering watchful eyes. It is normal for anyone who has just learned of a cancer diagnosis or is caregiving for someone through a protracted illness or who may have experienced the loss of a loved one to experience Post Traumatic Stress Disorder (PTSD), depression or similar types of issues.

However, professional help may be in order if over time the symptoms do not fade. Watchful eyes should look for signs such as inability to function in daily life, extreme focus on death, excessive bitterness, anger, or guilt, neglecting personal hygiene, alcohol or drug abuse, inability to enjoy life, hallucinations, withdrawal from others, constant feelings of hopelessness, talking about dying or suicide. If these signs are present, please encourage your friend or family member to seek professional help.

______________________________________________________________________

Shawn Murphy serves as Director of Community Relations and liaison to CURE Childhood Cancer on behalf of Summit Counseling Center in Johns Creek, GA. For information about CURE’s Partners in Caring Counseling Program, please contact Karen McCarthy at [email protected] or (770)986-0035 ext. 26.

Cure In CURE Childhood Cancer, Family & Patient Support, Nursing & Caregivers

Securing Our Own Oxygen Mask First

By: Shawn Murphy

The classic illustration is to think of it the same way you would think of the safety instructions when you board a jetliner with your child. If a situation arises inflight, we are instructed to first secure our own oxygen mask before trying to place an oxygen mask on our child. We’ve all heard the announcement. “In the event of a loss of cabin pressure, oxygen masks will deploy… to secure pull the mask toward you, secure the elastic strap… please make sure to secure your own mask before assisting others.”

When caregiving for a child or family confronted with the seemingly unrelenting challenges of cancer, it is even more important than ever to be intentional in taking care of ourselves…first. For most of us, this can feel counterintuitive, perhaps even selfish. After all, aren’t we by definition providers, protectors, and caregivers? We’re at a stage of life where we’re generally less used to being on the receiving side of care than on the giving side.

The truth is that if we want to do the very best job possible caring for our child and our family over the long haul, it is in everyone’s best interest that we are regularly investing the necessary time to maintain our personal health and wellness. Moreover, since our essence as human beings is body, mind, and spirit, the regular maintenance of these three vital life elements should be reflected to some degree each and every day if only for brief moments.

Signs that we may be in trouble as caregivers include being irritable or overwhelmed, changes in sleep patterns, feeling tired all of the time, gaining or losing a lot of weight, or a lack of interest or apathy toward activities we previously loved.

When we see these signs in ourselves, it is important to take some time to visit with a properly vetted and trusted professional, such as a physician (body), counselor (mind, emotions, behavioral), and/or faith leader (spirit) and apply some of the tips below to help prioritize your own health.

Accept help when it is offered.

Most people genuinely do want to help. If you can’t allow anyone to actually watch your sick child, prepare a list of things you are comfortable allowing people to help with. Maybe someone could run some errands for you, pick up your groceries or bring you dinner. Whatever it is, let someone else take some of the burden from your shoulders.

Make a plan to care for your own physical health.

We need to maintain adequate nutritional status, set priorities on getting enough sleep whenever possible and add exercise (even if it is as simple as a brisk walk 3 to 5 times each week) to help reduce the toll of stress on our body.

If you are on prescription medications, be sure to keep up with taking them on schedule, refilling them on time, and scheduling any follow-up appointments with your own physician to manage your health issues. It is helpful to schedule such recurring reminders into our phone’s calendar so that we don’t lose track of time.

Make a plan to care for your emotional and mental health.

When faced with a traumatic experience, other areas of our life that were once “manageable” sometimes become “unmanageable”. It is not unusual for anxiety and depression to begin to mount. It is always preferable to seek professional counsel and support before an emotional mood disorder(s) can take root; not only for ourselves but for our children and family as well.

If we get depressed, it may affect our children adversely.
The reverse is also true: when we do what it takes to be happy ourselves, our children reap the benefits.
Emotions, in general, are contagious.

If you find that you continue to be overwhelmed and depressed, please take the issue to your physician or counselor right away. Again, it is quite common for caregivers to experience depression and some may need more than just these simple behavioral changes to get through it. PLEASE, take care of yourselves so that you can continue to take care of others.

Shawn Murphy, M.A. is an ordained pastor and serves as Director of Community Development at the Summit Counseling Center in Johns Creek, GA.