When I was diagnosed with cancer, my focus was on my health and finding a way of getting better and improving my chances of survival. It was not until I attended a cancer support group and a caregiver gave his testimony that it dawned on me how stressful it was taking on the role of caring for someone you love. The first thing that went through my mind was that I better be kinder to my husband Carl, because dealing with this whole cancer thing is as stressful on him as it is on me. So it is with gratitude and love that I dedicate this letter to the cancer caregivers, who often go about their business unnoticed and unappreciated.
I interviewed a number of caregivers. For their privacy I am only using first names. During the conversations several themes seem to emerge:
#1: You can’t fix it.
#2: You can’t do it alone.
#3: Adjust your thinking.
#4: Take care of yourself.
#1: You can’t fix it.
You can’t cure cancer. And according to Mayo Clinic (mayoclinic.org, March 7, 2015), if you are like 80 percent of caregivers, you are also not a health care professional.
“I am not a doctor or a nurse, so I worry if I am doing everything I am supposed to be doing,” Laura sighed. “I struggle with guilt,” she said. “When my mother needed palliative care, a trained register nurse (RN) demonstrated how to administer medication through an IV. She showed me one time and then I was expected to do it myself!”
It is discouraging for a caregiver when all your efforts result in no improvement for the patient. You may feel powerless.
Set up realistic goals for you and your loved one. Perhaps you could find an activity you can enjoy together. My friend Addie took her sister to a weekly chair yoga class, so they could have a positive activity that they could share and also not be so isolated. As a patient, I took up tai chi for balance and meditation. This activity would be very helpful to share with a caregiver to calm the mind. One caregiver read to his wife every day in the lobby of their apartment by the fireplace. It was a beautiful bonding experience.
So if you can’t fix it, focus on what you can do. You are providing comfort, love and safety for your loved one.
#2: You can’t do it alone.
Accept help. There is no room for Superman or Wonder Woman in the caregiver arena. Human beings need a balance of joy and hope in their lives when caring for a loved one. Caregivers need both physical and emotional help.
Each person brings a special gift to the patient. Spread the responsibilities of caregiving by dividing up the tasks. Some people have the gift of finance, taking care of bills or dealing with the insurance companies. Some people love to sit with the patient and either chat or quietly watch a movie or read a book out loud. Driving to doctor visits, fixing meals and running errands like grocery shopping are gifts others can provide. Appoint someone to check-in for updates and coordinate with others to keep the communication open.
Let go of some control, because no one wants to help someone who delegates a task and then micromanages it. Know when you have to ask for help and where your resources are.
#3: Adjust your thinking.
A crisis can bring out the best or the worst in human beings. You may feel stuck in a thankless role. The stress of not having your time and knowledge valued, leads to feeling unappreciated. “It happens in every family,” Robbie responded. The problem is expectations. “Sometimes no matter what you do, it is wrong,” Addie remarked. “Family members are eager to offer advice, but the caregiver is stuck in the middle between the patient and the other family members. Even when you are trying to respect others’ wishes, there is a fine line you have to walk,” Laura stated. Know you have done your best and have no regrets. Focus on what you can control and know that you can control how you react to problems.
Work on learning to accept others’ limitations, including the limitations of the patient. People can’t give you what they are incapable of giving – either because they are engulfed in pain or illness or because they can’t step back and see the big picture and the role you are playing. It is not personal.
This is when you have to appreciate yourself, give yourself internal validation, and pat yourself on the back. Celebrate the little things in life. Remind yourself every day of what you are doing for your loved one to make a positive difference in their life. Make a list, if you have to and read it every morning. Knowing you are doing your best and doing the right thing is a huge reward and testament to demonstrating your love.
Be open and listen to others, share expectations, readjust your inner dialogue, be more assertive, be more grateful, show compassion for those who often make your life miserable, and work on positive relationships. Of course this is easier said than done, but it is a healthy direction. Remember, it is a difficult time for everyone.
Don’t ignore your emotional states of anger, loneliness, sadness, frustration and exhaustion. Seek counseling if you need.
Talking to a friend or trusted family member or joining a caregiver support group – either face-to-face or an online listserv or facebook group is also helpful. “There is no right or wrong, but caregivers just want to have their feelings understood,” Yvonne said. That is why it is so important to have a sounding board to vent. The curious thing is that truly “women are from Venus and men are from Mars,” Sue chuckled. “Often they are wired differently. Some only want to vent. Others want to solve the problem.”
#4: Take care of yourself and avoid caregiver burnout.
Even the most resilient human being can be stressed when caring for a loved one. It is important to preserve your own well-being. Too much consistent stress can harm your own health.
If you do not take care of yourself and you do not seek help, you may feel like the demands are so great that you are losing control. Here are some signs of burnout:
• Is your anxiety increasing?
• Is your sleep being so disrupted that you are fatigued during the day because of lack of sleep? Do you feel exhausted, have no energy and feel hopeless?
• Are you feeling increasingly impatient and irritable at even the slightest issues?
• Are you overreacting?
• Are you feeling resentful of the responsibility in which you have committed? Are you finding little satisfaction with your caregiving role?
• Do you find yourself neglecting some of your responsibilities?
• Are you finding that you are not taking time out for yourself and taking a break from caregiving?
• Is your own health suffering from your role as a caregiver? Are you getting sick more often?
• Are you neglecting yourself because you don’t care anymore or you are too busy? Are your bad habits (i.e. unhealthy eating, smoking, drinking) increasing?
• Are you neglecting your own personal relationships?
• Are you having difficulty focusing?
These are some ideas of what you can do to prevent caregiver burnout:
• Give yourself a break from caregiving by having someone else help. Indulge yourself. Have a manicure, a massage or a bath with candles. Watch a comedy show or movie or read a book that makes you laugh. Escape outdoors and get some fresh air. Go for a quiet hike or go to the zoo or the botanical gardens.
• Take care of your own health. Set up a doctor visit for yourself to monitor your own personal health issues. Exercise even if it is only 10 to 15 minutes at a time. Walk , cycle or just stretch your body. Pray, meditate or do guided visualization 10 to 15 minutes daily. Nap when your loved one naps. Eat healthy and hydrate with at least eight glasses of water a day. Invest in having a biofeedback treatment to teach your body and mind to respond to stress in a healthy way.
Being a caregiver of someone you love is a long-term challenge, but it can be rewarding because it is a way to show your love for the person. Accept that you can’t fix it, you can’t do it alone, you may need to adjust your thinking, and it is important to take care of yourself or you are of no value to anyone. You as a caregiver are doing a thankless, yet very important job. Live in the here and now. Remember that today is all we have. As a cancer patient, I send you my personal gratitude and love.
— Dr. La Verne
Dr. La Verne Abe Harris was a tenured Associate Professor at Purdue University in Computer Graphics Technology and the director of the Idea Laboratory, a creative thinking, interactive media, and animation research and development laboratory. Prior to that she was an Assistant Professor at Arizona State University (ASU). She received her PhD from the University of Arizona and her Master’s and bachelor’s degrees from ASU.
Before coming to ASU, Dr. Harris was the owner and creative director of Harris Studio, the art director of The Phoenix Gazette, the computer graphics production manager of Phoenix Newspapers, Inc., an editorial illustrator for the Arizona Republic, and the art director of an advertising agency.
That was B.C. – before cancer. She left Purdue University at the height of her career when she was diagnosed with a very poor prognosis of CLL: 17p deletion, TP53 mutation. She was the recipient of the ugly side of a common cancer. Diagnosed in 2009 she was chemo-resistant, had less than a 1% chance for a bone donor match, and could not find a clinical trial in which she qualified at that time. She is alive today because of an experimental drug (PCI-32765, scientifically known as ibrutinib, and branded as IMBRUVICA) that is now FDA-approved.
Today she is a cancer survivor, artist, patient advocate, political activist, blogger (www.DrLaVerne.blogspot.com), and occasionally a stand-up comedian for cancer patients.
In January 2018 she will officially be a Clinical Professor at Arizona State University (ASU). And life goes on…
Originally published in The CLL Tribune Q3 2017.