“Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.”
Can you remember back to your high school days and what it felt like when your best friend got her first serious boyfriend? At the time, it felt like she fell off the face of the Earth, never to been seen again, right? Or what about the time when one of your closest gal pals had her first baby and stopped returning your phone calls? Sometimes big life changes have a way of sucker punching our hearts and trampling on our already delicate spirits. Life hurts. Caregiving is no different. Becoming a caregiver does change the landscape of your life and your ability to connect with the world around you. Changes are inevitable. However, learning how to navigate the changes well can help strengthen and solidify connections. Let’s take a closer look at what caregivers need their friends to know about this season of their lives.
Becoming a Caregiver
When I became a cancer caregiver for my mom with Glioblastoma brain cancer five years ago, I had no idea how my life was about to change. I was a social butterfly with an extensive network of friends and acquaintances; many of which I had known for most of my life. I loved people, they fueled my spirit! In addition to my circle of friends, my husband had a chummy circle, and my kids had their own little groups of friends forming. But when cancer crashed our reality, things began to change.
When hard things happen in life, there is a ripple effect of change that occurs. Not all change is bad. But, there are changes that occur that are uncomfortable, confusing, unexpected and even painful. One of those areas hard hit by life change are your social relationships. Sometimes the change is abrupt but more often, there is a slow, gradual decline over time.
I was not prepared.
I received my caregiver club membership card at 32 years old. Truth is, people my age had a hard time relating to my circumstances because our seasons of life were now very different. Friends and other people my age were still having babies, raising young kids, starting new careers and still had parents who were young, vibrant, working and fully independent.
Up until my mom’s unexpected cancer diagnosis, that was me too! My parents were still young, in their 50’s, working full time and enjoying life. They were intimately involved with our little family and had an amazing social network of long- time friends, that were like family! Honestly, my parents were the life of the party! They truly could put my husband and I to shame in the entertainment department! My parents had a busier social calendar than we did!
That is until cancer crashed our reality!
Life Begins to Feel Different
When cancer comes knocking at your door, you find yourself just trying to survive. You are living in this strange new place where nothing looks or feels familiar. As a caregiver, you are trying to be strong for your loved one, maintain some sense of “normal”, meet every need, for everybody, anticipate every possibility, keep track of every appointment, plan every meal, dispense the medication, play with the kids, carpool all over creation, love on your spouse, do your job, try not to look like a daily train wreck and oh yeah…BE A FRIEND too!
Friendships that once brought you great joy, that were so easy and natural, now felt strained. You find yourself struggling to just maintain. Those precious relationships that you adored and held so tightly too, now began to feel out of reach. Friendships fizzle. You are left heartbroken…yet so exhausted and overwhelmed. You want nothing more than to save that sweet connection; however, your tank is maxed out, your well is running dry and you have no earthly idea how to begin to get it all back.
Maintaining friendships require time, energy and effort investments. Friendship is definitely a two- way street. What happens when life and circumstances leave you depleted of all the things necessary to preserve those precious bonds of friendship?
Caregivers NEED Friendship
Operating in caregiver survival mode can oftentimes leave you feeling lonely and isolated during a season of life when you truly need loving, supportive sisterhood the most. As someone who LOVED people, valued deep connections and was a hyper-communicator, the realities of brain cancer and caregiving rocked my world!
I was not prepared for friendship to become difficult.
Caregiving Truths for the Caregiver & the Friend
As with any big life event, whether it be a new love, a new baby, a marriage, a career change, a divorce, death or becoming a caregiver…
Truth #1: Change and transition are inevitable.
Truth #2: Not all changes have to be bad changes.
Truth #3: Instead of resisting the change, try to flow with it and commit to adapting.
As a caregiver myself and a friend to caregivers, I have had to learn to accept these HARD truths from both sides of the fence.
Is it easy?
Ummmm…NOPE! Wish I could sugar coat it for you, but I can’t. I would also be doing you a tremendous disservice if I painted a neat little picture of what this looks and feels like when it happens to you and is being lived out in real life!
But, we are in this together! I want us to lay aside all the guilt of the woulda, coulda, shouldas from the past and re-commit ourselves to our caregiving friends who are going through a difficult season of life right now. I need my friends in my life and I know your caregiving friends need YOU!
What Caregivers Need Their Friends to Know
Be Open to Honesty and Vulnerability (without judgement)
As caregivers, there is often this unspoken, self-inflicted pressure to wear our superwoman cape at all times. We try tirelessly to be “ok” even when things are everything BUT ok. We often feel like our lives and our circumstances are far too burdensome to share with others; therefore, we retreat and isolate ourselves. In addition, we often hold our feelings cards close in fear of being judged or to avoid disappointing others.
We need friends who will welcome us and all of our “junk” with open arms. Our souls crave safety where we can let our hair down, set our capes aside and just “be”…be ourselves, own our feelings and know that you will love us just the same. Caregiving can be HARD and messy and we desperately need sisters who are willing to show up with their boots on and meet us in the mud and muck of our lives.
Ask About the Tough Stuff, Don’t Avoid It
Many times people will avoid the big white elephant in the room in an attempt to avoid their own discomfort. Being a caregiver is more than a “job” or a duty, it is part of who we are as people. I realize that you do not know what my life looks and feels like as a brain cancer caregiver and trust me, I am so grateful you don’t. However, it is a part of who I am and the journey that I am on. Even though it’s HARD, I don’t want to live like it doesn’t exist. So, as my friend, please don’t try to pretend it’s not there. You may be tiptoeing around it in an effort to protect me or spare my feelings but please know it will hurt more if you choose not to ask.
Seek to Understand our Circumstances, Don’t Aim to Fix It (because we aren’t looking for that)
The physical and mental demands and challenges of caregiving are not always obvious to onlookers. Loved ones outside of the situation may “think” they know what life is like or how things should be done but things are not always what they seem to be. As our friend, please ask questions. Seek to truly understand what life is really like. Don’t make assumptions. Also, depending on the situation, there may not be a “solution” or a “fix” for what we are faced with. Just be there. Show up as a friend, not a fix.
Offer a Listening Ear, Shoulder to Cry On
It is my belief that as humans, we are often uncomfortable with being uncomfortable and the idea of silence is awkward and unsettling. Therefore, we try to fill the silence with words. Many times, they are well-intentioned sentiments, but that does not always mean they are helpful or necessary. Check out this post to learn more about empathetic conversation.
Sometimes, we just need you to do more listening and less talking. Other times, we might need to skip conversation all together and allow our tears to flow and speak for us. There may be times where words escape us and that is ok. Just showing up with your presence is the true gift.
Don’t Ask How We’re Doing if You Don’t Really Want to Know
I know this may sound strange. If you are asking, then you must want to know, right? But think about this for a second. As a culture, I feel like we have grown accustomed to robotically inquire how someone is without any real thought or desire to truly know the answer.
As the friend of a caregiver, if you are going to ask this question, please be prepared to receive the answer and give your friend full permission to be honest and vulnerable with their feelings. So often, caregivers worry so much about the well-being of others and get so used to people always asking how their loved one is doing that we are sometimes caught off guard when someone asks us how we are personally doing. Prepare yourself for the answer that you might receive. Asking on a particularly hard day may warrant a really hard response, from both the caregiver and the one on the receiving end. But, there is so much beauty that can be found in the messy, broken places of our lives when we have the opportunity to meet there with the Lord and a friend.
If We Are Distant or Not Ourselves, PLEASE Don’t Take it Personally
Life as a caregiver is often unpredictable. Depending on the circumstances, your reality can literally change in an instant. If we seem far off, detached or not like ourselves, please do not take it personally or assume that you have done anything wrong. When in doubt, please just ask. Oftentimes our circumstances are dictating the mood or behavior and more than likely, it has nothing to do with you!
Remind Us That We Are Not Forgotten
Never underestimate the power of an encouraging word. Everyone is busy and we all have our own life “stuff.” When cancer hijacked my family’s reality, it almost felt like we became spectators of our own past lives. Being reminded that we are often loved and thought of makes a tremendous difference, especially on the trying days. Living with cancer and caring for someone with cancer changes everything about your life. Receiving a text message, card or a phone call for no other reason than to hear that you are being thought of truly touches the heart in a profound way! It may take you moments or seem insignificant to you, but to the caregiver, it is life giving fuel to our spirits! It makes the next moments lighter and brighter. Loving someone well through cancer is not easy but it is a tremendous blessing!
Keep Inviting Us Even When We Say “No”
This is a biggie! Cancer can be a party pooper, can’t it?! I know that we have had to decline numerous invitations to spend time with those that we love due to appointments, treatment fatigue, and I’ll spare you the laundry list of other cancer related effects that often rain on our parade. However, please don’t stop inviting us. Just knowing that we are thought about and you are trying to include us puts a smile on our face.
Logistically, life is more complex and demanding due to caregiving responsibilities. Leaving the house for any period of time is not as easy and care free as it once was. Even though we have to say “no” more often than we would like to, please understand it’s just “no, not today” NOT “no, not ever again.” One thing that helps is planning for outtings far in advance. This gives us time to coordinate arrangements for our loved ones and anything else related to their care. It is not always easy to plan in advance, but it definitely increases the odds of the caregiver being able to participate!
If You Say You’ll Pray, Please Pray
Until my mom got sick, prayer follow through was never something I gave a lot of thought to. But, as a caregiver, I am now hypersensitive to the importance and power of prayer follow through. Prayer has carried us through in ways that I cannot even begin to name. Prayer is POWERFUL and is truly one of the best things you can do for someone else.
When I became a cancer caregiver, I felt like laughter was stolen from me. One minute it was there, then it vanished. Laughter no longer came easily…I had to work hard for it! As a friend to a caregiver, be mindful of our need for laughter. Send a funny joke, You Tube video or meme that might bring a smile to a caregiver’s face. Laughter truly is good medicine for the soul.
Remain Intentional About Connection
As a brain cancer caregiver, I feel like I’m juggling rare pieces of fine china while walking a tightrope blindfolded on some days. As much as I crave connection for my thirsty soul, some days I am too overwhelmed and too exhausted to take the initiative to connect. To even write that hurts my heart but if I’m being honest, it is true. Friendship is definitely a two- way street. Please hear me…I am NOT saying that ALL the weight should fall on the friends’ shoulders. But, please remain proactive about reaching out to your caregiving friend. Don’t assume since they haven’t called you lately that they are just too busy or that they must not want to talk. Speaking from my own experience, those are usually the times we need connection the most.
Be Flexible and Creative
Due to our caregiving demands, we might not be able to go out of the house as often or for long periods of time like we used to do. But, depending on the day or the circumstances, we might be able to turn our going out together into staying in together. Instead of going out for coffee, why not come over for a hot cup o’ joe? Seeing a comedy might be just what the doctor ordered but instead of going out, lets pop some popcorn, pour a glass of vino, jump in our p.j.s and fire up Netflix! Our time together might look different but with a little bit of creativity and flexibility, we can still spend some great quality time together!
We Need to Feel “Normal” In spite of Our Abnormal Realities
When cancer enters your world, nothing about your life feels “normal” anymore. I often tell friends that sometimes it feels like I’m watching someone else’s life play out like a movie on the big screen. As a cancer caregiver, cancer is part of our reality. But, it is not who we are and it does not define our lives (even though it tries hard to take over.) As our friend, please help us feel “normal.” We want to hear about your life and what is going on in the world around us. We don’t want everything and every conversation to revolve around caregiving and cancer.
Extend Grace & Embrace Forgiveness
Grace: “For by grace you have been saved through faith. And this is not your own doing; it is the gift of God” (Ephesians 2:8, ESV).
Forgiveness: “Make a clean break with all cutting, backbiting, profane talk. Be gentle with one another, sensitive. Forgive one another as quickly and thoroughly as God in Christ forgave you.” (Ephesians 4:31-32, MSG).
A Prayer for the Friend of the Caregiver
Lord Jesus, I thank you for this sweet sister and friend. I ask a special blessing upon her soul who willingly bears the burdens of her caregiving friend. Father, we know this is not always an easy role to walk in and I pray that you will give her the strength, wisdom, patience, compassion and the selfless love necessary to continue showing up for her friend who so desperately needs her friendship during this season of her life.
Heavenly Father, we know that you created us to live in community with one another and sometimes during the storms of life, this can be a challenge. Please come alongside your children and help them remove the barriers and tear down the walls that cancer threatens to put up in their lives.
God, I pray that you will give this friend the understanding she needs to endure this difficult season of friendship. I ask that you will give her a heart of empathy and endless compassion towards her caregiving friend. I humbly ask that you will bless her with the unselfish desire to keep showing up for her friend as she walks through this season of caregiving and that you will give her the spiritual, mental and physical energy to endure for the long haul.
Father, bless this friendship with your grace, endless mercy, forgiveness and unconditional love. We pray for protection of this friendship, Father, from Satan and all of his temptations. God, we know that Satan wants nothing more than to tear down our connections so he can isolate us and lead us astray. Father God help us stand firm with one another, strengthen our bonds of friendship and cover us with your precious Holy Spirit. When times get tough, help these friends keep their eyes fixed on you.
We thank you Father for the blessings of friendship. We give you all the glory, honor and praise.
In Jesus’ Precious Name We Pray,