Category: Nurse’s Corner
Nurse Talks of Grief and Guilt That Come After Losing Loved One
Mesothelioma is a difficult disease to diagnose. Often, it can take months to get an accurate diagnosis and to settle on a treatment plan. When talking to family members after a death from mesothelioma, it is clear that even when they reflect on the difficulty in diagnosis it does not comfort them. Many spouses, family members and caregivers feel guilty over the path they did not take in an effort to “save” their loved one from the disease. Missed doctor’s appointments, alternative measures not taken, resources that they did not know about all add to the burden of guilt about their choices.
Mesothelioma patients and families often think, “I should have noticed something sooner,” or “I should have encouraged him/her to go a different doctor.” Some even ask, “What could I have done to prevent this death?” With mesothelioma and the direct link to asbestos exposure comes an added burden of exposure guilt.
“Why did I put my family member in harm’s way?” A son or a daughter could have been exposed to asbestos through everyday activities like laundering of clothes, a summer job as a teenager, or living near a factory that manufactured products made with asbestos. It is inevitable that people start blaming themselves for the exposure to asbestos, or not noticing sooner that something was wrong. Although they know in their heads that it is not their fault, their hearts are telling them something different.
Guilt and grieving are not processes that involve a timeline. Some people believe that if a loved one had a long sickness, and death was expected, than the grieving process should be shorter and less painful. The grieving family member can hear comments like, “You have to move on.” “You’re young, you will meet someone else.” Often the person that is saying these things does not realize how hurtful they can be. All of us grieve and accept diagnoses, disappointments, and life changes on our own time.
Mesothelioma patients and families have a long journey with this dreadful disease. From diagnosis to death to the grief of loss, the medical team encourages families to reach out for support on their unique journey with mesothelioma.
“Threads of Hope: An Offering for Those Who Grieve,” by Beth Rotondo, is a small book that was given out at a recent memorial service. This book, or other similar self-help books, could be used as a reference for any one of us as we experience loss throughout our lives.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
Mesothelioma Nurse to Another: “Thanks for All Your Hard Work”
Mary Hesdorffer is the Executive Director of the Mesothelioma Applied Research Foundation, and is a tireless advocate for mesothelioma patients and their families. The mission of the Meso Foundation is to support patients and to fund research leading to a cure for mesothelioma.
Mary has been an advocate for the mesothelioma community for many years. She is passionate about her patients, and thousands have benefitted from her support and knowledge. Mary is a leader and a personal inspiration to patients, caregivers and fellow nurses. She is always available and approachable – and most importantly, she knows the answers to your mesothelioma questions (or will get it for you).
Today, while looking for the right way to spell her name, I came across an exciting new project that Mary has completed. She has written the first-ever booklet on clinical trials for mesothelioma. Clinical trials are the way that mesothelioma researchers are going to eventually be able to cure mesothelioma. In the United States, less than five percent of cancer patients participate in clinical trials.
Educating patients and their families about clinical trials is imperative to future treatment modalities, and for refining the ones that we currently have. One of the barriers to mesothelioma research has been patients and treatment centers not knowing what is available. Which studies are enrolling patients, what the criteria for the studies might be and the clinical trial phases are all key pieces of information patients and doctors need to know to find an appropriate trial. All of this information is available on www.clinicaltrials.gov, but many people are intimidated by the site or just aren’t sure what to look for.
Mary has simplified the search process and made the booklet easy to understand. Hopefully, her efforts will lead to increased knowledge and participation.
Navigating the medical system when dealing with any condition can be challenging, but when you or someone you love is diagnosed with mesothelioma it can be totally overwhelming. The information that you find might not be up to date. It is important to go to a mesothelioma center and be seen by a team that specializes in mesothelioma. While doing your research look at the Mesothelioma Applied Research Foundation’s website, www.curemeso.org, download the booklet, view the past conferences, and know that the organization is dedicated to support and research for a cure.
Mary Hesdorffer is a true mesothelioma hero. Thank you, Mary, for all your hard work and tireless dedication to the mesothelioma community.
Nurse Talks About Dealing With Grief After Losing a Loved One
A friend’s mother died recently after a short illness. Diagnosed in December with a very aggressive form of amyotrophic lateral sclerosis- Lou Gehrig’s disease – she died in mid- March. This vibrant, young woman was struck down by a debilitating disease. The end was painful for the family as they watched the disease progress rapidly until she enrolled herself in hospice.
Her mother chose hospice and her family listened. Her husband of 48 years was devastated. He told everyone who came to the wake the story in the exact same way. His wife’s devastating diagnosis, the swiftness of her decline, the suffering, and the heartbreaking loss that he and his family were dealing with. My friend was reflecting on that and the way her father was handling his grief, and we talked about the importance of letting him tell his story and listening to it.
Expert Insight
Dana Farber Cancer Institute
“Grief is made up of intense emotional and physical reaction that is characterized by deep sadness and a yearning to be with that person again, how we react will be different for each of us because grief is unique.”
Grief varies from person to person, how we deal with it and on what timeline is unique. How can we as caregivers and family members help when someone dies? Most importantly, remember that everyone grieves in their own style. The five stages that Dr. Elisabeth Kubler-Ross introduced in 1969 – denial, anger, bargaining, depression, acceptance – are a guideline and everyone is different. People that are dealing with a loss must be able to do what they are comfortable with, whether it be repeatedly telling their story, attending support groups or seeking out grief counselors, and on their own timeline.
Grief is something we all deal with during life. For my friend and family it is supporting her father by allowing him to tell his story in his own way to deal with his grief. It does not go away if it is ignored.
Mesothelioma victims and their families need support through their unique journey with mesothelioma. Don’t be afraid to listen. Everybody has a story and often just listening to it more than once can be helpful.
Nurse is Continually Inspired by Mesothelioma Patients
As a nurse, I learn a lot about resilience from my patients. After some of the most challenging surgeries, I watch as patients and their families deal with pain, living restrictions and trying to get back into a normal life. But those who live day-to-day with mesothelioma never cease to inspire me. I am continually amazed at how people not only live with the effects of mesothelioma, but return to a daily routine.
In some situations, patients have to fight hard to not only beat the side effects of chemotherapy and radiation, but also the effects of this dreaded disease. These patients often have weekly, if not daily, medical appointments on top of battling this relentless cancer. It can all be daunting, but so many mesothelioma patients fight their symptoms and aggressively attack the disease so they can be there for their families.
It seems every day I get a wakeup call as to just how challenging life can be for chronically ill mesothelioma patients. Sometimes I am stopped dead in my tracks watching patients and their families grapple with the enormity of the disease – but they do and they keep moving forward.
Everyday can be a battle for mesothelioma patients, and I think we often forget about them. So if there is anything you can do to make just one day a little easier for a friend or loved one please do it. It will make a difference for you and the patient!
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
Dealing with Anxiety After a Diagnosis of Mesothelioma
This week a patient, I will call George, presented with a situation that caused me to reflect on the role of anxiety in dealing with mesothelioma – a life-threatening illness. George is 65-years-old, a successful businessman three weeks away from his planned retirement. He had been planning for his retirement and had travel plans, had a vacation home and was focusing on the start of a new life. He had always been in good physical health, until a bout of pneumonia and a cough had him facing a possible mesothelioma diagnosis.
George prided himself on being in control of his life, finances, relationships, and health. When faced with the fight of his life, George was paralyzed with anxiety. George had always suffered with an anxiety disorder, but he was able to control it by ordering his life. As this proud man told me through his tears, the medication does not stop the racing in his mind about the tests and procedures in which he has no control. The medication might slow his body down but not his mind. His psychiatrist had retired; he had tried another one but could not relate to him.
Everyone experiences anxiety at different times. It is a normal human emotion. Anxiety disorders are different. When worry and fear interfere with a person’s ability to lead a normal life it could be an anxiety disorder. Anxiety disorders are the most common mental illness in the U.S. affecting approximately 18% of adults.
There are no easy answers for a person suffering with a possible life-threatening illness and dealing with an anxiety disorder. One of the suggestions I did make to George was to look into stress-reducing techniques such as yoga or meditation. There is also a book on the New York Times best seller list, “10% Happier: How I Tamed the Voice in My Head,” by Dan Harris, that might help George and others dealing with anxiety. George was grateful for the suggestion, but I think he was more grateful that someone listened to him and understand that although he cannot control his diagnosis there is still a chance for some peace in his mind.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
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.
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