October was Health Literacy Month and November is National Family Caregivers Month. Both of these special months highlight the importance of education, support, and understanding when dealing with or caring for a loved one. When faced with a diagnosis of malignant mesothelioma, understanding of the disease and what to look for helps both the patient and the caregiver.
The definition of health literacy from the Affordable Care Act of 2010 is “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make health decisions.”
There is nothing simple about understanding the disease of malignant mesothelioma. From diagnosis through treatment the terminology and descriptions of the disease are difficult to understand and to even pronounce. The process of being diagnosed is usually after weeks or months of tests and scans, and after other common illnesses are ruled out. Health literacy can become an issue immediately.
A “family caregiver” is considered anyone who does not get paid but helps another person do what they can no longer do without assistance. Family caregivers provide extensive assistance which can include medications, shopping, preparing meals, cleaning, advocating, coordinating, educating – the list is very long, and the contributions vital.
For a rare serious disease like malignant mesothelioma, it is important for patients and families to understand what they are dealing with. The options for treatment can be confusing and the plan can change with further testing. The importance of being able to understand and trust your team is vital. Family caregivers are the link between the patient and their medical team. Having someone with you during this journey can be life saving. In order to give the patient the best possible chance for recovery and quality time, the family caregiver’s contribution and understanding of the disease and the patient is very important and often both overlooked and under appreciated.
Looking around, the number of people who in addition to maintaining their jobs and lives also provide care for someone else is staggering. The term “invisible army” has been given to these caregivers who often are not recognized.
We honor and thank all the family caregivers for their huge contribution to ongoing care for another person, family or not!
My family and I have been riding the so-called “mesothelioma roller-coaster” for over six years now. The ups and downs of this disease are never-ending and, even though my father has since passed away, they continue.
When my Dad was diagnosed, it was instant confusion followed by anger mixed with sadness, anxiety, and grief. Upon completion of surgery and chemotherapy, it was relief and happiness. I remember telling my husband after Dad got a report from the doctor that there was no evidence of disease, that I had thought that I would never be able to truly smile again. During the clinical trial, the good reports kept coming, and we shared so many happy memories in that time that I will always treasure.
When the news came that some mesothelioma had returned, it was back to square one, but in a different way this time. Now, we were educated, and it seemed like the sense of shock of what we were dealing with was muffled a bit. We knew what mesothelioma was this time, the prognosis, the implications of treatment, and so did our close friends and family members. After the radiation that followed, Dad was once again showing no evidence of disease. We thought that once he recovered from the effects of the treatment, he would be back to his old self again, just like before.
That was until the morning that he passed away. Less than an hour before he was gone, I spoke to my father who told me that he was feeling better and better. He told a friend he thought that he was turning a corner toward complete recovery. Ultimately, this was not to be. I don’t need to document the gamut of emotions that I felt that day, but I think it is important to realize that my emotions are still all over the place. The roller coaster ride continues.
Every day, I feel sadness and grief at the loss of the man who shaped me, but gratitude for his presence in my life. I feel joy and warmth thinking back on the memories we made while, at the same time, mourning those we didn’t get a chance to create. I laugh remembering his smile and sense of humor, while shedding tears in knowing that I don’t get to hear it anymore. The aftermath of mesothelioma is something that I will carry with me forever, but I will always keep on loving my father and remembering his beautiful life.
For many different reasons, sometimes it’s hard to ask for help. You don’t know who to ask, you don’t want to impose, you’re embarrassed, or you don’t want to admit that you need the assistance. These can ring true for anyone, but I’ve found it to be quite prevalent in the mesothelioma community.
This group is made up of warriors! It’s a group of strong, resilient, and let’s face it… sometimes stubborn (and that’s not a bad thing!) people who are steadfast in their fight. They don’t want to make others feel as though they are putting them out, or be what they think is a burden on their loved ones. I am here to tell you, that no caregiver feels that way.
We are caregivers because we care and want to give anything we can to those we love. We are honored to support you in any way that you need. I know that there were times where my father hated asking me for things; I’m an adult, I lived three hours away, and I had “my own life.” Just because I am married with a business and a family doesn’t mean that he wasn’t still very much a part of that life. Things were added, but in no way was he subtracted.
I was so blessed to be there for my Dad during his surgery and recovery. I was able to be there to help during the clinical trial and visit multiple times during his radiation therapy when he was in NYC for weeks. I am blessed to have a life that allowed me to travel to be with my parents and make frequent trips back to my hometown. Dad also visited me at my home, and my husband and I loved doting on him, making him the king of the castle!
So, as Dad would say, “the moral of the story” is to never be afraid to ask your loved ones for help. Don’t push them away when all they want is to be pulled closer. You are loved by many, and those people are just waiting for a chance to help. God bless all caregivers and the ones they care for… in any capacity!
MesotheliomaHelp is pleased to have author C. Hope Clark as a guest blog writer. Recently, both of Hope’s parents were diagnosed with Alzheimer’s, bringing her daily routine to a screeching halt. Much like mesothelioma caregivers, Hope found that she had to take care of her needs in order to better care for her parents.
By C. Hope Clark, Guest Author
I’m a novelist, with eight mysteries to my credit. Also, through my educational newsletter at FundsforWriters.com, I’ve motivated writers for 19 years. We’re award-winning, delivering a message each and every Friday for all those 19 years. A nothing-can-get-in-our-way sort of thing.
With a goal to remain positive, I lead a mission to show that anyone with drive, diligence, and a strong degree of hard-headedness can navigate the writing profession. I practiced what I preached through crazy deadlines, relocations, birthdays, weddings, holidays, and more. I preached that a dedicated writer wrote through anything.
Until we had two hurricanes and both my parents were diagnosed with Alzheimer’s within six months of each other.
In their right minds, my parents had designated me as fiduciary and medical power of attorney. Suddenly, tag, I was it . . . the go-to person for everything from where to find a restaurant to how to fire yet another doctor.
I received as many as twenty calls in a day from parents who were angry, saw dead people, and forgot where they lived, usually cursing me for not taking care of issues that didn’t exist. Doctors leaned on me to put them into a home. Family was split on how to do this, and some doctors disagreed with each other. Adrenaline and nightmares often woke me at night as everyone told me what to do but nobody could help me get it done.
Through tears, headaches, and lack of sleep, I kept telling myself to write. After all, I had deadlines. Suddenly my bottomless well found a rock-hard bottom, and not only did I struggle to write, but I wondered if I ever wanted to write again.
Practicing what I preached became more than rhetoric. Especially when my own health took a nose-dive. I felt so naïve.
The key is not to lose myself in the reality of life ~C. Hope Clark
In the midst of all the chaos of family, moving, doctors, power going out, and being the strong shoulder for parents frantic they were no longer in charge, I looked back at what I taught my readers. . . to see if I’d been spot on or theoretical in my teachings.
And this is what I learned about dealing with a complicated, stressful life:
It’s okay to write anywhere, anytime, and any way. Forget the perfect study with the proper music background and the keyboard with the just-so touch. The goal is to put words to paper. Fix it later. I wrote 2,500 words while my father received his two-hour neurological test that diagnosed him with Alzheimer’s.
Compromise is in order. I had a December deadline for the novel, but had given myself an earlier July goal which I’d been keeping nicely with a 500 word-a-day mission. Then all hell broke loose. Seven-thousand-miles-in-two-months-on-my-car kind of hell. I reprogrammed the deadline to October. Regretful, but I was determined to keep on keeping on. The manuscript went in December 20.
It’s okay to tell people you have limitations. Normally highly active on social media, I didn’t want to just disappear and lose my fan base, so I let people know in my newsletters that I had my hands full, and why.
On that note, it’s fine to be human. I explained the situation to my publisher. I told family that any day I wasn’t with them, I had to be at the keyboard. I kept one major appearance and cancelled others. Family and writing only. I boiled life down to those two basic needs.
While I’m not home free, the days I have to write are slowly increasing. I still keep a tight restraint on the commitments I accept, for fear I’ll encroach on the two basic responsibilities I have. However, this too shall pass. Right now, I’m excited to see myself coming out on the other side, and thanks to the forced down time, I’m thrilled and excited about 2018. The opportunity to make new, more extensive goals has me practically giddy.
And Newberry Sin, my eighth novel, comes out April 2018. One would never know that those words happened in doctor’s offices, in moving cars, and my parents’ living room at wee hours of the morning. Yes, I’m human, but I’m determined to instill that vulnerable humanity, and the strength that grew from it, into how I manage my new normal . . . and the next books.
About C. Hope Clark
C. Hope Clark’s newest release is Newberry Sin, set in an idyllic small Southern town where blackmail and sex are hush-hush until they become murder. The fourth in the Carolina Slade Mysteries. Hope speaks at conferences, libraries, and book clubs across the country, is a regular podcaster for Writer’s Digest, and adores connecting with others. She is also founder of FundsforWriters.com, an award-winning site and newsletter service for writers. She lives on the banks of Lake Murray in central South Carolina with her federal agent husband.
Beneath an idyllic veneer of Southern country charm, the town of Newberry hides secrets that may have led to murder.
When a local landowner’s body, with pants down, is found near Tarleton’s Tea Table Rock—a notorious rendezvous spot, federal investigator Carolina Slade senses a chance to get back into the field again. Just as she discovers what might be a nasty pattern of fraud and blackmail, her petty boss reassigns her fledgling case to her close friend and least qualified person in their office.
Forced to coach an investigation from the sidelines, Slade struggles with the twin demons of professional jealousy and unplanned pregnancy. Something is rotten in Newberry. Her personal life is spiraling out of control. She can’t protect her co-worker. And Wayne Largo complicates everything when the feds step in after it becomes clear that Slade is right.
One wrong move, and Slade may lose everything. Yet it’s practically out of her hands . . . unless she finds a way to take this case back without getting killed.
One of the most difficult things in life is to see someone you love suffer. Patients who are diagnosed with malignant mesothelioma, or any cancer or life threatening illness, have a range of emotional ups and downs on their journey. The family member, spouse, partner or friend, that supports them also deals with an enormous emotional burden.
According to a statistic from AARP, approximately 44 million Americans provide 37 billion hours of care for their loved ones, whether it be sick, older or disabled people. The economic value of the services that family caregivers provide is estimated at approximately $350 billion annually.
This past week, a mesothelioma caregiver was sharing her story with me. She had notebooks full of the course of her husband’s mesothelioma journey. From his diagnosis to present day she had chronicled all the events, tests, procedures and surgeries that he had been through. She was encouraging other family members to keep records as she often has to advocate for her husband. She is able to do so by referring to her notebooks to remember dates and times and the corresponding discussions. It was the wife trying to get control of an uncontrollable situation.
As the conversation progressed, we started talking about how she was handling being a caregiver. It has been difficult to watch as her husband has lost weight, been uncomfortable, depressed, and anxious. It has affected her physical and mental health. As important as her job as her husband’s caregiver is, she needed to start to pay attention to her own health.
Caregiving has many positive aspects. It can strengthen the bond between the patient and the caregiver. Many caregivers feel it is one of the most rewarding experiences that they have in their lives.
What can you do for a caregiver? The gift of time, stay with the patient for a few hours. Encourage the caregiver to go out, take a walk, see a movie, anything that they enjoy. Give the caregiver support by listening to their journey, experiences, and fears. Caregiving is a difficult, rewarding job- made easier with support!
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