by Rob Harris, Caregiver
Intro by Pat Taylor, CKN Caregiver Section Editor
I liken caregiving to climbing a mountain without a map, on a foggy day, wearing flip-flops, shorts and a t-shirt.
At first the trail appears to be well trodden by the many who came before you. It is clearly marked and easy to navigate, even over the slippery moss-covered logs placed precariously over gushing streams and deep gulleys along the way. With each step your confidence soars and a “Hey, I can do this!” attitude drives you forward.
However, further up the mountain the trail becomes more difficult to negotiate and harder to decipher. It is overgrown with a dense brush that scratches your bare arms, rips at your clothing and hides tree roots that trip you up as you push your way through the tangled mess. A fog descends, draping heavily over your shoulders, pushing you down and blinding you, causing your step to falter just as a cavernous ravine appears inches before your exposed toes. You feel lost and vulnerable. Your confidence dissolves and a gut wrenching “Hey, I can’t do this!” stops you short. Stunned, you sit and curl into yourself, trying to get warm. “I need help,” you whisper desperately.
Miraculously, out of the fog comes a guide. He offers you a warm fleece, some hot tea and a granola bar. He smiles at you. “I have walked in your “flip-flops” he says. “Let me see if I can help.” He switches on a headlamp and unfolds a well-used map. He points to where you are and then to the mountain top. You begin to see how far you have yet to go. “You can do this, ” he says when he sees the doubt creeping across your face. Feeling revived and a little wiser, you slowly stand up and continue to climb. It might be a short trip or a life-long hike, but you now carry with you a map from someone who has climbed this mountain before. You can ask for help along the way…and perhaps you should toss the flip-flops and invest in a hardier, sturdier form of footwear.
Rob Harris is one of the best “mountain guides” within the world of cancer care that I have met to date. He has lived and breathed the experience by caring for his wife, a two-time cancer survivor. During his own mountain climb he has crossed many a slippery log, leaped across cavernous gulleys and survived ravine after treacherous ravine. His article below is a map worth carrying along with you as a first-time caregiver, and it acts as an important refresher course for those still engaged in the climb of their life. -Pat Taylor
1. You Can Do It
Don’t allow your weakened emotional state to dilute your resolve. Clear your mind of the emotional static that may interfere with a vibrant, logical thought process. Be confident in your ability to take charge.
2. Create a Team Concept
Pronoun choice is extremely important. Both the person with cancer and the caregiver are in this battle together. Incorporating the words “we” and “us” into conversations rather than “you” and “I” changes the dynamics and makes it clear you are battling the disease together. There may be times when your loved one frustratingly reminds you that you are not physically suffering as he or she is; however, mentally and emotionally, you are experiencing similar trauma. Hence, the term “we” aptly applies.
3. It’s Not about You
More often than not, the caregiver is ignored during medical consults. While you are both in this together, it is the person with cancer upon whom the doctor must focus. There is no need to feel slighted. Allow the one-on-one dialogue to commence, and utilize that time to listen intently and take copious notes. That said, if you have questions, do not hesitate to ask them, and do not allow the conversation to conclude until you have received a satisfactory response to each of your queries. Remember, you do not need to be in the spotlight, but you are your loved one’s advocate. That carries a significant responsibility. The caregiver must be the eyes and ears for the survivor.
4. Help Wanted
Do not be afraid to swallow your pride and ask for help. Even if family and friends are available, be sure also to contact cancer-focused organizations. Stockpile your resources. You never know when you might need to call on them.
5. Be an Optimist
If you believe you have the power to make things better, odds are you can positively influence your perception of your circumstances. Being optimistic allows you to be mentally strong and reduces the possibility of developing a defeatist attitude.
6. It’s OK to Have Fun
It’s imperative to laugh and have fun. It’s an important part of life that sometimes gets drowned with sorrow and self-pity. Caregivers and their loved ones with cancer should seek avenues for finding enjoyment whenever they can and as often as possible. There is no need to become a hermit.
Though well intentioned, not all efforts to assist turn out to be in the best interest of your loved one with cancer. In these cases, you must be confident and step in. Hurt feelings may result; however, the primary concern is the well-being of your loved one. If explained in a calm and diplomatic fashion, those involved should hopefully not be offended.
8. Celebrate Small Victories
Yours may be a long, uphill battle. Each goal achieved, no matter how small in the grand scheme of things, is still a victory. Take time to pause and celebrate. Doing so prevents the remaining journey from appearing too overwhelming and allows you to focus on accomplishing the next task on the list.
9. First and Foremost, You Are Human
Much as you may try to be strong, you are still a human being with human emotions that you may not always be able to suppress. Though you may attempt to control them, you may not always be successful. Accept this for what it is, and don’t beat yourself up. There are more important things on which to focus your attention.
10. Avoid Overreacting
Caregivers and other caring adults have a tendency to be overprotective of their loved ones with cancer. This can occur when meeting with doctors and others with whom you may not agree. Your loved one was an independent individual prior to the cancer diagnosis and is likely to be the same person after the diagnosis. Do not disrespect them by being overly nurturing or speaking on what you believe to be in their best interest. If it doesn’t bother your loved one, it might be wise to ignore it.
11. The Only Dumb Question Is the One Not Asked
Do not hesitate to ask for clarification if you do not recognize or understand something. In time, you may become well versed in the medical terminology. Until then, you have a right and a responsibility to your loved one to know exactly what an unfamiliar term means. The best person to explain it to you is the one who just used it.
12. Patience Is a Virtue
People with cancer experience many physiological changes due to the medications being pumped into their systems. As such, a caregiver’s level of patience will likely be tested regularly. Because of changes to their senses, foods and beverages that once were favorites may be swiftly and emphatically rejected. Don’t take it personally. Your loved one wants to find something to eat as much as you want them to. Sometimes, it’s a challenge to determine what is appealing at that moment.
13. Combating Frustration at Home
The caregiver role, for most of us, is an around-the-clock commitment. Regularly designated rest or meal periods are few and far between. You’re on call whenever needed. While it is human nature to become frustrated and annoyed, it is critical that these feelings remain shielded from your loved one. Should they not be, arguments may arise, or worse, your loved one may stop asking you for help altogether. If you are unable to control your visible irritation with the situation, contact others for support. If family or friends are not available, call a professional organization that is experienced with your loved one’s medical condition. They may be able to assist with support or give recommendations.
14. Relish Your Downtime
The nurses really do have things under control. When your loved one sleeps, that is the best time to do things that you enjoy. Take a nap, read a book, take a walk, or do whatever else makes you happy. This is your time. Take advantage of it. It’s important to focus on your mental and physical health whenever time permits.
15. Walk on Eggshells
Many days will be emotionally challenging. There are times when your loved one with cancer will need a shoulder to cry on or someone to vent to. In most cases, you are that person. Try to keep in mind that your loved one is turning to you for love, support, and in some cases, a release of pent-up emotions. Should verbal attacks be lobbed your way, try not to take them personally. The anger will subside. Don’t hold a grudge; always consider what your loved one is going through. Ask yourself, “If I were him, would I be acting differently?”
16. Take Care of Yourself
If you do not take proper care of yourself, it likely will detract from providing the proper attention your loved one needs. Try to stimulate your mind, body, and spirit throughout the medical ordeal.
17. If You Reach the Breaking Point
Depending on medical, personal, and professional circumstances, you could suffer from overwhelming mental anxiety and fatigue. Should that occur, turn to someone you trust or an organization that provides emotional support, regardless of the time of day or night. Keep appropriate phone numbers handy, just in case.
In concert with his Amazon.com #1 bestselling book, “We’re In this Together: A Caregiver’s Story”, Rob Harris is a caregiver advocate, radio show co-host, speaker and blogger. He’s a self-taught caregiver to his wife, a two-time cancer survivor. Excerpts of his book were recognized as the “featured story” in Coping With Cancer Magazine (May/June, 2013). His organization, Robcares, communicates with those in need worldwide through social media, speaking engagements, and interviews. Rob’s website, www.robcares.com offers valuable information, resources, videos, and links to his social media locations and so much more. He can be reached directly at Rob@robcares.com.