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Caregiver Stories Articles: Page 1 of 51

November is National Family Caregivers Month

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!

Insights for Families of Mesothelioma Patients Coping with Loss

Malignant mesothelioma is an aggressive cancer. For some, the journey is long and for others it can strike quickly and cruelly. It is imperative to remember that the person with the disease is someone who usually has a rich life filled with family, friends, and relationships before the diagnosis. While malignant mesothelioma is a rare disease, unfortunately the distress it causes can be life altering for those left to deal with the aftermath. The person diagnosed with malignant mesothelioma can be anyone: a spouse, mother, father, grandmother, grandfather, aunt, uncle, child, or friend. These people can never be replaced. Their loss affects us all.

Recently, two brave registered nurses lost their battles to malignant pleural mesothelioma. One R.N. was a 76 year old woman who had been diagnosed with malignant mesothelioma several months after retiring. She was an accomplished R.N. turned nurse practitioner who had spent her career working with children’s development. The other R.N. was a 59-year old mother of three who had been working full time in the radiation oncology department. Both of these women combated the disease courageously and were more concerned with caring for their families’ emotional wellbeing than they were with their own health and outcome. 

Over the years we have seen survivors that are living long, full lives and we rejoice at their good fortune and pray that it continues. The goal of the mesothelioma program has always been to encourage a good quality of life with long term survival leading to a cure. We continue to learn that these journeys and losses are clinical but often personal.

The loss of these two women was particularly difficult due to the fact they were hardworking, caring, and empathetic individuals. Despite an age difference of over two decades, these women shared several similarities. Both had loving families, had been registered nurses for 35 and 50 years respectively, and had seen death in their work and personally experienced the pain of losing loved ones.  

This year 2020 has been in no way ordinary. The COVID-19 virus has enabled all of us to see things with a different perspective. We’ve redefined what’s important – our relationships and how we treat each other have become paramount.

As we mourn the loss of these two malignant pleural mesothelioma victims, we remain grateful that we had the opportunity to know them. We offer prayers to their families. They will not be forgotten.

Coronavirus & Mesothelioma Treatment: One Patient’s Story

The COVID-19 pandemic upended our usual routine and impacted all of our lives. For people that needed medical treatment it became a different experience. Having treatment for anything but coronavirus related illness became the exception. No visitors were allowed in the hospitals for patients no matter what their diagnosis. Many people put off necessary treatment for a later time. Facing cancer at any time is frightening. Facing treatment for a rare cancer such as malignant mesothelioma, alone without your loved ones, can add another layer of stress.

Reading and hearing about people’s experiences you think would prepare you for seeing it in person. Whether it is physical or psychological the suffering is real.

Our patient was a middle aged man who has malignant pleural mesothelioma. His presenting symptom was a cough that would not go away. He was worked up for it and he was a surgical candidate which he opted to have. The time between his symptoms and being diagnosed was a few months. Things were on track for surgery, and he lived locally near his Mesothelioma Center. Things were lining up for him in a timely fashion, but then the pandemic came and things changed.

It is known that patients facing a cancer diagnosis do better with family support. Since most cancer treatment is on an outpatient basis that is where the majority of support happens.  However, the period in the hospital is unfamiliar and frightening – it can be terrifying. Our patient was dropped at the hospital and stayed in for greater than 30 days. He had a support system, but no visitors were allowed into the hospital. For his inpatient stay he remembers being confused, afraid, and convinced that he was dying. During this month-long stay he praised the staff of the hospital, but explained that not to see your loved ones when you are confused was too much. Frequent phone calls were no substitute for seeing someone who is supporting you through this stressful time. His hospital course was complicated and since discharge he has been experiencing many different emotions. Usually someone in control of his emotions, he finds himself crying frequently and unexpectedly. As he is processing this trauma he and his loved ones are realizing what an important part that support plays in a person’s physical and psychological recovery. 

Treatment for mesothelioma is difficult under the best of circumstances but during the pandemic it became harder. As people start to come for specialized treatment to a Mesothelioma Center of Excellence please know that their team is very tuned in to how vital support from their loved ones is during this time.

Stress Woman

Discounting the Dangers of Asbestos Discounts the Value of My Father’s Life

The dangers of asbestos, even one exposure, are so frightening to me that I am paralyzed at the thought of someone coming in contact with it.  Even the potential that you could be exposed is enough to bring tears to my eyes and cause serious anxiety. This applies to anyone, even a stranger, but what do you do when someone you care about doesn’t take these dangers seriously?

It is so painful when someone you love, someone who has walked this horrible mesothelioma road along with you, fails to take into account the possible ramifications of what could be caused by their negligence.  My heart breaks for anyone who may come into contact with them who could also be exposed, and therefore, at risk.  I am angered by their utter disregard for the memory of my father who lost his life to mesothelioma; it almost feels like they’re saying he died in vain.

It hurts when you try to explain to someone why you are concerned and they brush it off, simply saying, “It’s fine, I was careful!” or, even worse, “You’re just being ridiculous.”  Is it fine that I’m left without a father, my mother without a husband, and my daughter without her grandfather?  Is it ridiculous that I want to spare others from what my family had to endure?  I don’t think so.

Some may say that this is overreacting, but to me, it feels like underreacting (if that’s a real thing).  Families are torn apart each and every day by this cancer that could have been prevented by the elimination and proper removal of asbestos.  If human lives were put in front of the dollar, we would be in a different situation right now with the continued spread of mesothelioma.

Sure, my words might cause some dissension, but I’m not afraid or ashamed to stand up for a cause that I believe in, one that is so real to me… too real.  So, please, don’t be afraid to fight.  Fight to be heard, fight to have your concerns addressed in a real way.  Fight for those who cannot fight for themselves.

Mobile Phone

Unplug and Just “Be” With Your Loved Ones

Let’s face it, we all do it. We’re sitting with a friend or family member, and we half-listen to what they’re saying because we’re looking at our phone or other device. Unfortunately, this has become our “new normal.” We rely so much on technology that we sometimes start to “unplug” our real relationships. Phone calls replace visits, text messages replace phone calls… what’s next?

When my Dad was first diagnosed with mesothelioma, I didn’t even have a smart phone. To log on to social media, I had to sit down at a computer. This, in terms of technology, feels like it was such a simpler time. By the time Dad was in the hospital for the final time, I had just gotten my first iPad. I remember sitting in the hospital with him while he slept, using it to play a game. I was very in tune to the fact that Dad needed me, and that he needed me to be truly present with him, so I was actually quite good about putting my device down when he was awake. I knew it was important for both of us.

Please try to remember that people, not technology, need you. When someone you care about is with you, no matter their physical condition, do your best to unplug. Make real memories; they are what will be with you for the long haul. No amount of “likes” can take the place of having a real moment with your loved one. I would give up my phone, computer, everything… if I had the chance to make one more memory with my Dad.

Keep this in mind as you are moving forward.  No amount of technology, no matter how life-like it may seem, can replace the company of your loved ones!

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