Category: Nurse’s Corner
Defining Your Personal Space During Your Mesothelioma Journey
Mesothelioma patients often face a busy schedule when initially diagnosed, and when they begin undergoing treatments. There are a lot of tests and consultations, and decisions to be made. There is a sense of urgency in getting treatment under way as soon as possible. During this phase of the disease, family and friends are frequently rallying around and trying to provide as much support as possible. There are other patients also offering support if needed. Support groups, friendships, and new relationships are formed.
At the end of the journey, when a person has exhausted his clinical options and has shifted to hospice or comfort care, the path is not as clear. We recently had a mesothelioma patient whose journey was at its end. During his battle with mesothelioma, he conducted extensive research and was willing to try anything. But now, he had no more options, and he decided to stay home with his wife and keep things as “normal” as possible. His sons were not living at home, and he elected to have them come home a weekend after he had made the decision to enter hospice. Over this weekend they talked, reminisced, and acknowledged that he was dying. The sons went back to their lives until the final weekend of his life. During this time his wife was caring for him.
We were surprised at the couple’s reluctance to ask for help from their large, extended family and network of friends. Up until the last weekend his wife was taking total care of him and the house.
The last weekend was a different story – they had called home their sons, and let family members in to be with them. He died peacefully at home surrounded by his loved ones.
Everyone’s journey is different, as is everyone’s response to it. We are all unique individuals, and we have the right to decide when to let people in.
Sometimes space, both physical and mental, is needed for people to process and decide how they want to move forward. To allow a person and their loved one that space is sometimes the best support you can offer.
Do You Hear What I Hear? Mesothelioma Nurse Explains What Can Influence What You Hear
When you visit the doctor when you are dealing with a frightening diagnosis such as malignant mesothelioma, it is easy to get a little confused while you try to familiarize yourself with new medical terms. You may hear something one way, but your support person, who was also at the appointment, heard something different. This can happen to anyone. There are reasons for hearing the same words, but not hearing what the person is trying to say.
There is a four-second audio clip going around the internet that is an example of how people hear differently. People are divided into two camps on what they hear in the computer-generated clip: half hear “Laurel” while the other half hear “Yanny.” When you say those words they sound totally different. How can people hear the same clip, but interpret it differently?
There are actually scientific reasons that can explain why we hear one or the other. Whether someone hears Laurel or Yanny can depend on how old they are- as we age our ears hear fewer sounds on the high pitched range. Those folks will hear Laurel. What you are hearing the audio clip on also can influence what you hear. The more high pitched the sound or tinny the speakers , the more people hear Yanny. There is also the element of someone putting the suggestion into your brain by asking in advance what do you hear, Yanny or Laurel. This can influence what you hear.
When you are at important medical appointments, remember to ask for clarification from your team. Repeat what you understand you heard. Clarification, explaining your understanding of the information, and repeating it out loud, can all help to avoid misinformation.
Communication and interpretation must be clear so that the same message is heard by both the patient and the family member.
Yanny or Laurel is an interesting, fun clip on the internet. It shows how easily we can hear things differently. But it is also a lesson in discussing what it is you are hearing when it comes to your mesothelioma treatment.
Could Mesothelioma Caregivers Suffer From a Broken Heart?
There is an old saying that someone “died of a broken heart.” Is there any truth in that saying?
A few years ago a healthy young woman was admitted to the cardiac care unit of the hospital we work at, with all the signs and symptoms of a heart attack. She had chest pain, shortness of breath and fatigue. On imaging, her heart was so weak that it had assumed an abnormal bulging shape. Testing was done and it was determined that she had not suffered a heart attack, but had a reversible cardiac syndrome.
She had been under an enormous amount of stress and had just learned of the unexpected death of her mother. It was determined that she was suffering from takotsubo cardiomyopathy, or stress-induced cardiomyopathy – commonly called broken heart syndrome. Unlike a heart attack patient, the woman had a full and quick recovery, as do most people treated with this condition.
Is it possible to have your heart broken to the point of suffering from heart muscle failure? Takotsubo cardiomyopathy is a recognized condition that often looks and feels like a heart attack. This is a recognized heart syndrome, with symptoms including shortness of breath and chest pain. The condition develops when a person is under either extreme physical or mental stress, suffering from intense grief, surprise, or anger.
Although a rare condition, broken heart syndrome among mesothelioma caregivers is a possibility due to the fact that most are women over 50 caring for their spouses, and are under significant stress. The best way to prevent broken heart syndrome, according to AgingCare.com, is to devise ways of coping with difficult emotions and troublesome situations.
Learning to recognize the signs of caregiver stress and making a plan for dealing with the day-to-day difficulties of caring for a loved one, are important steps. We’ve said it often that caregivers must care for themselves as well as their loved one. While caring for a loved one with mesothelioma can be a sad time, try to focus on something positive to lighten your heart.
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!
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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