Employment Rights for Mesothelioma Caregivers

Caregivers, listen up! Today I am sharing a post written by Devin Golden written late last year over on the Mesothelioma Guide and although it’s catering to a specific demographic, you should read it anyway, especially if you anticipate complications related to family health concerns. What is interesting about this post is that it was written back in December 2019 just prior to the sweeping burden of the Coronavirus. Illnesses of all kinds unfortunately force families into making uncomfortable decisions and as a caregiver, or someone anticipating the decline of a loved one, it’s good to know your employment rights when assessing a strategy for care. Read below and do so wearing your “caregiver” cap. Don’t get caught up thinking too specifically about mesothelioma or you’ll miss the point. The most important take away here is that you might have employee rights in the event caregiving responsibilities demand your attention. The solution is far from perfect but this is a good starting point for full time employees fearful they’ll lose their jobs if they get called away. Read Devin’s post below for the details:

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Choosing to be a caregiver is a selfless and giving act. 

Since mesothelioma is an aggressive cancer, caregivers are essential for patients with all stages of this disease. A common question for us at Mesothelioma Guide is, “Who can be a mesothelioma caregiver?” The American Cancer Society defines a caregiver as anyone not paid to provide care to a person. Whether a spouse, child, parent, sibling or close friend, mesothelioma caregivers sacrifice much of their lives to help someone in need.

Another common question is, “Can mesothelioma caregivers continue working?” They often sacrifice their professional goals and time to care for the patient. These unselfish acts should not be penalized, and caregivers should know their employment rights.

We at Mesothelioma Guide list and explain three regulations that protect employment aspirations and situations for mesothelioma caregivers. If you’re a mesothelioma caregiver, or a patient researching for their caregiver, read these laws and then contact us with further questions. Our patient advocate, Jenna Campagna, is available via email at jenna@mesotheliomaguide.com and can further assist you with caregiver-related information.

Anti-Discrimination Law

The Americans With Disabilities Act is a federal law protecting caregivers from workplace discrimination. The rule applies to companies that have at least 15 employees. The United States Equal Employment Opportunity Commission (EEOC) explained how the act helps people with caregiving responsibilities. “Persons discriminated against because they have a known association or relationship with a disabled individual also are protected,” the EEOC website states, continuing that the government’s definition of “disabled individual” includes cancer patients. Caregivers, therefore, should not be terminated from employment or denied employment if they can manage the job’s requirements. However, mesothelioma caregivers aren’t entitled to special treatment, such as extra time off or modifications to the workplace.

Unpaid Family Leave

Mesothelioma caregiving can be the equivalent of a full-time job. When the cancer progresses to its later stages, or when the patient undergoes invasive treatment such as surgery, more attention is required of the caregiver. Therefore, they may need to take time away from their regular routine, including their full-time employment.

The Family and Medical Leave Act of 1993 allows caregivers to take off work without losing their employment. The law provides up to 12 weeks of unpaid time off and covers a range of caregiving responsibilities:

• Traveling for medical appointments

• Post-surgery care

• Staying at home when the disease reaches its later stages and the patient cannot be left alone

According to the U.S. Department of Labor, the law applies to company with at least 50 employees living within a 75-mile radius of the worksite; and caregivers who have worked for their employer for at least 12 months and at least 1,250 hours during the past 12 months.

Paid Family Leave

Not every mesothelioma caregiver can afford to take off weeks or months without any income. For that reason, some states have enacted paid family leave laws. According to Conquer Magazine, five states (California, New Jersey, New York, Rhode Island and Washington) provide this service to caregivers. The National Conference of State Legislatures states that Washington D.C. also has a paid family leave law. As recently as 2017, only three states provided this assistance to mesothelioma caregivers. More states could enact similar measurements, so you should contact Mesothelioma Guide to learn if your state applies.

About the Writer, Devin Golden

Devin Golden is the content writer for Mesothelioma Guide. He produces mesothelioma-related content on various mediums, including the Mesothelioma Guide website and social media channels. Devin's objective is to translate complex information regarding mesothelioma into informative, easily absorbable content to help patients and their loved ones.

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My caregiver journey came about due to Alzheimer’s and Dementia which are quite different from mesothelioma however their diagnoses impact loved ones in much the same way regardless of illness. The emotional, physical and financial responsibilities can greatly impact both patients and families so do your homework. Make sure you know your rights and be prepared to self-advocate. Stay healthy friends! We live in a dangerous and unpredictable healthcare world.

Age Is Just a Number: Mesothelioma Surgery for Elderly Patients

Hey Folks!

It’s not all about Coronavirus. In the wake of all thing pandemic, we must remember there are other serious health conditions with patients needing support. Today I have Devin Golden, a writer for Mesothelioma Guide. He produces mesothelioma-related content on various mediums, including the Mesothelioma Guide website and social media channels. Devin's objective is to translate complex information regarding mesothelioma into informative, easily absorbable content to help patients and their loved ones. Below, he has some insight as to why everyone with Mesothelioma should explore their options. There’s more to a treatment plan than just age. Read his findings below:

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In almost any explanation of mesothelioma treatment options, there is a clause. 

The routes available for treatment depends on numerous factors, one of which is age. This clause — that age, among other factors, could limit treatment — is usually specific to just one option: surgery. A study published in the Annals of Surgical Oncology suggests that age might be the most often-used factor when determining if a patient is eligible for mesothelioma surgery. Mesothelioma is a rare and aggressive cancer for which there are already limited treatments. Removing the most effective one just because of a person’s age? We at Mesothelioma Guide hope surgeons and doctors consider far more than just that number.

In Review: Mesothelioma Treatment for Elderly Patients

The study involved examining the National Cancer Database for all patients at least 80 years old with recently diagnosed nonmetastatic malignant pleural mesothelioma. In other words, the patients’ disease is in its early stages and hasn’t spread to vital organs — but it could, and likely will, if untreated. The researchers found 4,526 patients who met the criteria and looked into the treatment approach used for each. According to the study’s results, which was published on the U.S. National Library of Medicine:

• Just 2% of the patients had surgery (likely pleurectomy with decortication) plus chemotherapy

• Around 13% had just surgery

• 22% had only chemotherapy

• 63% were “observed,” meaning they didn’t receive any curative treatment

The average age of pleural mesothelioma patients is 72 — the disease is more likely to impact the elderly than many other forms of cancer — and restricting these patients to chemotherapy or nothing is usually an early death sentence. The median survival times were:

• 4.1 months for those observed

• 9.5 months for those receiving just chemotherapy

• 12.2 months for those undergoing surgery and chemotherapy

By comparison, the figures for pleural mesothelioma patients under 80 years old were:

• 17% only underwent surgery or had surgery and chemotherapy (median survival of 17.7 months)

• 47% had just chemotherapy (median survival of 12.2 months)

• 36% were just observed (median survival of 6.6 months)

More to the Story for Mesothelioma Treatment

The argument against elderly patients having surgery, or even chemotherapy , is that their bodies may not be strong enough. Other complications may arise due to surgery. However, not every 81- or 82-year-old patient has the same health. One may have poor nutrition or other health concerns. Another could be a former marathon runner who eats healthy and exercises regularly. While the study says the 90-day mortality rate for those having mesothelioma surgery was 28.5%, this figure does not consider the quality of patient selection. As author Justin Karush says on the Society of Surgical Oncology website, “When selecting patients with mesothelioma for surgery, it is paramount to consider the ability to offer adjuvant treatment.” Additionally, a survival time enhanced by 200% — the difference, according to the study, between no curative treatment and surgery plus chemotherapy — could be enough reward to take the risk.

Quality of Life Due to Surgery

For people with peritoneal mesothelioma, the benefits of surgery are just as great — if not greater. A study published in the Annals of Surgical Oncology reviewed the quality of life in 46 patients who underwent cytoreductive surgery with heated intraperitoneal chemotherapy (HIPEC). The median survival of these patients was 3.4 years, and 36.5% lived for at least five years. By comparison, only 18% of peritoneal patients in general live for at least five years, and the life expectancy of elderly patients with this disease is at most two years. While there are similar risks associated with elderly patients undergoing cytoreductive surgery with HIPEC, the increased survival time is relevant. So is the increased quality of life. The study suggests that patients who underwent surgery experienced improved emotional well-being and social functioning, fewer emotional issues and less pain. The study concluded, “(Quality of life) returned to baseline or improved from baseline between three months and one year following surgery. Despite the risks associated with this operation, patients may tolerate HIPEC well and have good overall (quality of life) postoperatively.” Unfortunately, many elderly mesothelioma patients will never get the chance to enjoy that improved quality of life since the general assumption is they should stay away from the operating room. That’s a discouraging one in the medical industry, and one we at Mesothelioma Guide hope changes going forward.

Note to Mesothelioma Patients and Their Loved Ones

If you’re a newly diagnosed mesothelioma patient, we are on your side and will do anything possible to help you through this difficult time. Most importantly, we can help you find the best treatment available. Our patient advocate and registered nurse, Jenna Campagna, is the No. 1 resource for learning more about mesothelioma. She also can refer you to a mesothelioma specialist with a track record of success in helping patients live long past the average prognosis. Email her jenna@mesotheliomaguide.com to begin your path to recovery.

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Have you experienced limited treatment options due to age? We’d love to hear from you in the comments!

Senior Pantry Staple: Grapes

The Red Ones...

Managing the kitchen is a constant for every household but throw in some Alzheimer's and suddenly the place is on lock-down.  Keeping-up with the pantry rummaging and squirreling away of things in odd places has any caregiver feeling like the full-time chief of police. "Stop right there and show me your pockets!" Ugh... More often than not my heart sinks as I discover a bounty of gross.  Used tissues, some coins, a pair of tweezers, hair pins and  food all commingling together in a pocket.  And to think people complain about doing laundry.  As police chief I am ready to engage in a full-on pat down, and strip the clothes right off my mom, right there in the kitchen to learn what other incidentals she might be harboring on her person. 

The food squirreling is a major source of frustration for me.  I won't begin to list the items of concern but instead tell you a little trick that has helped me.  Let me reiterate the word little here because, well,  every little bit counts right?  

Grapes. Every week I buy red grapes and portion a small bunch in a bowl and keep an eye on them as they go missing.  As they run low, I replenish with another bunch from the fridge. Doing this allows me to monitor the pace of consumption/squirreling while also allowing for the safe opportunity of "discovery" that on some level I believe rummaging satisfies. 

Why Grapes?

The grapes for me offer several benefits...

1. They are fine left out in the open. Whereas other food items run the risk of spoiling, attracting bugs or becoming stale as the packaging is left open, grapes  do an amazing job pulling their weight on the counter with little supervision.
2. The dog takes no interest.  Unlike a pocket of pretzels or nuts, or my least favorite, a f***ing breakfast sandwich, the dog could care less about the grapes.  This is actually a big deal considering we have a large dog that can be a bit demanding with his wants. As my mother completely gives in to his begging, the risk to his health and her's increases.  Which will happen first?  She poisons him or he knocks her down?  Both tragic, so best to avoid.
3. Resveratrol.  The skin of red grapes contains this antioxidant that is trending in health related news these days.  It is paraded as an anti-inflammatory and touted as a benefit to ward off cancer, heart disease, aid in cognitive abilities and more which you can read about here.   The science behind resveratrol is apparently convincing enough that it has been formulated as a supplement and available in pill form.  But do you really need another pill in your life?  Or maybe the better question is, do you really want more of your money going to the pharmaceutical industry?  Stop the insanity, and just eat some grapes. They are the real deal.
4. Red.  I came across this article recently that provided some insight  on the visual capacities for patients with Alzheimer's.  (Hehehehe!  Get it?  In sight?! So punny, I know...)  Red appears to be a favored color for this crowd in that it is the easiest color in the spectrum to see so, skip the green ones and bring on the reds!