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With mesothelioma cancer, a diagnosis often comes after a long latency period. The average length of latency for malignant mesothelioma is 35 to 40 years after exposure to asbestos. Often times, younger members of the family, such as children or grandchildren, have to step in to become caregivers for their parents or grandparents who are battling mesothelioma in the late stages of their life.
The Mesothelioma Cancer Alliance spoke to Tory Zellick, massage therapist, author and Huffington Post blogger, who became a caregiver to her mother with breast cancer at age 18. Below, Tory shares her advice about how to care for a loved one with cancer and what she wishes she knew starting out.
Although my days of caring for my mother are long over, I can’t help but observe those in my life who are beginning down the road of caregiving and see their personal struggles. There are over 65 million informal caregivers in the United States; caregivers with little or no formal training who are being catapulted into the world of caregiving. If only I had known then what I know now, the outcome may have been the same, but my personal caregiving journey may have been a bit smoother. If I had the opportunity to talk with my younger, caregiving self, my best advice would be:
Self Care Should Be Number One Priority
Caregivng is a time consuming, emotionally draining, and physically exhausting job. If you do not take the proper steps to care for yourself, how will you be able to care for another?
- Make sure to eat regular and nutritious meals. Take the time to prep healthy, easy-to-grab-on-the-go meals to avoid eating fast food or snacks out of a vending machine.
- Your life may be filled with doctors appointments for the person you are caring for; this does not give you an excuse to forfeit your doctor time. Maintain your regularly scheduled check-ups and stay on top of your wellness.
- Scheduling personal time is also important to maintaining a healthy relationship with the person you are caring for and maintaining a relationship with yourself. All to often, a caregiver self-identifies with the person they are caring for, and may even feel guilty “leaving” the care recipient.
Which brings me my second piece of advice:
Build A Strong Caregiving Team
As the primary caregiver, you cannot possibly be everywhere, all the time. In order to schedule time for yourself and ensure the care recipient is sufficiently cared for, build a team. Many people may want to help and may not know how. Delegate small tasks such as house cleaning, lawn mowing or bill paying to others to help free up your valuable time.
With a diagnosis such as cancer, it is important to begin an organizational system and stick with it. Quickly, one will realize just how many physicians, therapist, specialists, tests, procedures and treatments are involved. Caregiving is not a lesson in memorization; design a system to track physicians and bodyworkers, medications, treatments, insurance paperwork, and medical bills. Make sure someone else on your team has a clear understanding of this system as well, in the event you are not present and critical information is needed.
Do Not Fear Discussing The Big “D”
Death is something we as a society tend to dance around. Remarkably, no one wants to talk about it even though it is our one guarantee in this life. It should not take a diagnosis like cancer to begin the conversation; begin the conversation now! Know what your loved one’s final wishes are and make sure someone knows your wishes. Have the appropriate documentation drawn up, including a Durable Power of Attorney (DPOA), living will or trust, and discuss Do Not Resuscitate and Do Not Intubate orders. These decisions are difficult to make, so it is better to have a clear understanding of these topics prior to needing to make these decisions.
Remember that you became a caregiver because you care, and doing the best job you know how is all you can give. The journey may be long, frustrating at times and difficult, but this is not a journey you must make alone. Accept help when it is offered, seek out help when necessary, and most importantly, maintain your own personal well-being.
Tory Zellick, CMT, became a caregiver to her mother at the young age of 18 when her mother was diagnosed with breast cancer. Through her experience, she studied massage therapy to help her mother and others with pain, has written a book, and blogs on her site and The Huffington Post to support others who are becoming caregivers. Her book "The Medical Day Planner: The Guide to Help Navigate the Medical Maze" helps patients and caregivers manage all aspects of their medical care to take the stress out of some otherwise difficult decisions. Learn more about Tory and her journey at her site All Things Caregiver.
Resources for Mesothelioma Patients and their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center