Author: Lisa Hyde-Barrett
Mesothelioma Nurse Explains the Benefits of Advanced Care Planning
To be diagnosed and live with malignant mesothelioma is a life changing event. It is a long and winding road for many, with twists and turns that cannot be predicted or planned for. This week we saw a patient and his wife who are dealing with the end of life. He was diagnosed two years ago with malignant pleural mesothelioma. He has been through surgery, chemotherapy, a clinical trial, he has made the decision, after there were no more treatment options left for him, to enter hospice care. He has fought the disease for two years and now, he and his wife together, are trying to provide a peaceful death for him.
This sounds like something that should happen peacefully, and the way they want, at home. In talking with them, and many others through the years, this phase is uncharted for them. People are often eager to share their experiences with doctors, hospitals, and treatments, but not many talk specifically, about how they would like their final days to be.
Medicare, the country’s largest insurer, has recognized this as an issue and now provides coverage for patients to have these important conversations before being diagnosed with a terminal illness. Advance care planning is not a form to fill out, it is a process. It is not enough to say that you have an advanced directive or living will. It is not enough to think about what you might want- you need to write it down-and share it with your loved ones.
Since January 2016, the Center for Medicare and Medicaid Services (CMS) has added Advanced Care Planning to the list of reimbursable procedures. This service is a series of conversations with a healthcare professional to assist you in finding out what is important to you. Your wishes for the end of life are your right.
If somewhere in your journey with malignant mesothelioma someone hands you a form to fill out, an Advance Care Directive, know that it is something that requires thought and soul searching for you. It is not a form to be checked off – it a process that you personally need to be involved with. It is your life you decide what is important to you at the end of it!
Planning Your Mesothelioma Journey
The Royal Family has a new baby! The baby boy’s arrival was expected and joyous. Most women create a plan when they become pregnant: prenatal care, a birth plan, and the date of the baby’s arrival. There is much joy and anticipation on how lives will be changed with the arrival. Education about pregnancy and delivery is easily obtainable by the mother, partner, and extended family. It is a time of life that a lot of plans are made. Everyone’s birth is a different and unique experience.
This was not always the case. Before the 1970’s, hospital births included general anesthesia and longer stays in the hospital, often the mother not remembering the experience and the father nowhere in sight. Times changed, we became more educated and a light was shined on why we do things a certain way and changes were made.
Death is also different and unique for individuals and their families, in that the dying process is still one that most people do not know about. What to expect, and the timing of the symptoms that could mean death is imminent are not well known. Like birth, death is going to happen, but ignoring it until you or your loved one is faced with it, does not help you. For some it remains a forbidden topic and is not discussed at all. Like birth, it is a personal journey.
As baby-boomers age they will be facing health care decisions and end-of-life wishes in record numbers. Ten-thousand people a day become eligible for Medicare, and it is estimated that by 2050, 20% of the population will be over 65.
At a birth, we wish the new arrival a long happy life with the world of possibilities available to them. As we plan for death, we may wish for the time that is left to be of good quality, and for our family and friends to be around us. Or perhaps, we limit the people around us and choose not to have aggressive measures taken. These decisions on this personal life experience are ours to make. Times have changed, we now need to shine a light on the way we currently think about the dying process and how we want our own death experience to happen.
Whether you are diagnosed with an aggressive cancer such as malignant mesothelioma or you are a healthy adult, no one knows when their time on this earth will end. No one wants to talk about one’s end of life wishes, but it is a conversation that should be had. Starting the conversation may prove difficult for some, there are ways to make it more comfortable.
Start the conversation, you never know how and when you will be thankful that you did start it!
When Caregiving Interrupts Your Life, Get Back to the Basics
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.
Expert Insight
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
chopeclark.com
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.
Newberry Sin
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.
National Healthcare Decision Month is a Time for Mesothelioma Patients to Plan for Care
There are two life experiences that we all share. We are all born, and we are all going to die. We are all going to die, but no one wants to talk about it. If we do talk about death, it is usually in general terms – not from our own personal perspective. Recognizing this issue, there are resources to help all of us think about what we want at the end-of-life.
April has been designated National Healthcare Decision Month, with April 16 named National Healthcare Decision Day. There is a collaborative effort of national, state, and community organizations to help guide you in talking about what you want at the end-of-life, what type of care you want to receive and when you want to receive it.
There are many different possible scenarios for how our lives will end. No one knows when or how, but to let your wishes be known to your loved ones can make a very stressful time less so. There are several organizations that are trying to educate how we view these important topics.
The Conversation Project has starter kits to help get you started with talking about the end-of-life. According to its website, “emphasis is having the conversation on values- what matters to you- not what’s the matter with you.” One of the statistics quoted is that 90% of people say talking to their family and friends about end-of-life is important, but only 27% have actually had the conversation.
Other resources available include Caring Info, Aging with Dignity and The Art of Dying Well.
Malignant mesothelioma is a complicated disease. Some patients are living with this disease as a chronic disease. The disease can take time to evolve to the end-of-life for some, and for others it can be a swift, cruel ending from diagnosis until death. A person’s journey with mesothelioma is individual, that is why it is vital to have a relationship with your mesothelioma expert that knows what you, as an individual, want at the end-of-life.
We have seen many patients that assume that if the disease progresses, or a complication arises, it is the end of their life. Everyone’s course is different, don’t assume that one person can compare to the next.
It is not enough to say that, “I don’t want to end up on machines.” Nobody does. What is important and what is not important to you is what you need to explore and talk about with your loved ones.
Start the process. Think about what is important to you, and let your family and doctor know. This is important for all of us!!!
Sources:
- The Conversation Project
https://theconversationproject.org - Caring Info
http://www.caringinfo.org - Aging with Dignity
http://www.agingwithdignity.org - The Art of Dying Well
http://www.artofdyingwell.org/talking-about-death
Fear is a Real Part of a Mesothelioma Diagnosis
When a doctor tells the patient has been diagnosed with malignant mesothelioma, we sometimes see a paralyzing fear in both patients and their family members.
This past week, at a new patient orientation meeting designed to introduce the support team, give general information regarding mesothelioma, explain what practical supports are available, and to generally reduce a patient’s and the family’s anxiety, the presentation did not seem to be helping one family. By the end of the meeting their fear was still palpable.
Fear, as defined by Merriam-Webster, is “an unpleasant often strong emotion caused by anticipation or awareness of danger.” Researchers have identified in the literature three major cancer related fears: fear of death, fear of recurrence, fear of stigma.
The fear of death and a cancer diagnosis can be paralyzing. Although, for some, the amount of time further away from the diagnosis the patient gets, fear begins to diminish. The emotional scars that being diagnosed with cancer can inflict, all individual factors, contribute to when a person is able to resume a “new normal life.”
The ‘fear of recurrence’ emotions can also vary in patients, ranging from worry and sleepless nights, to thoughts of suicide. On the positive side, once diagnosed with a recurrence, the person is already more knowledgeable about their disease, able to navigate the healthcare system, and know that it is possible to return to a “new normal.”
Cancer diagnosis can still carry a stigma. Changes in the dynamics of family relationships, role changes in a relationship, ability or inability to return to work can all stigmatize a person with a cancer diagnosis. The stigma can be in how the patient sees himself, or how he thinks others perceive him.
Fear is a four-letter word, as is hope. When facing a serious cancer diagnosis like malignant mesothelioma, the most important thing is to not lose hope.
At the conclusion of the meeting while speaking with this family, they were able to verbalize their fears. The patient was elderly, the onset had been abrupt, and they had heard that surgery was very “rough.” They were not willing or ready to lose their husband and father to this disease. Once their fears were acknowledged, we were able to remind the patient and family of the facts. His general overall physical fitness, his early diagnosis, localized disease, type of mesothelioma, and a warm caring family to help him through and around obstacles in the future, were all positives in their journey with mesothelioma.
Balancing fear and allowing for hope is an important part in the treatment of malignant mesothelioma.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
Download Now