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mesothelioma caregivers

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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.


The person who provides support for the patient with malignant mesothelioma, or any other serious illness, is a vital part of the whole team. Their role is all encompassing, as they are on the front lines from the beginning of the journey to the end. Many have become experts on the disease, navigating the medical system, and supporting others with their journeys. It is a role that can be life changing, not only for the person with the disease, but for the caregiver.

Over the years of taking care of patients with mesothelioma, we have seen some of the best caregivers as they advocate for their loved ones. Recently we witnessed the importance of recognizing their contributions and the positive impact those words can have on a caregiver.

Mr. A was diagnosed with pleural mesothelioma shortly after the first symptoms appeared. His wife did extensive research and started taking notes of all his appointments. Names, dates, what was discussed, what the recommendations were. She had filled up many notebooks on their journey. Mr. A referred himself to a mesothelioma center, underwent extensive testing, had chemotherapy pre-surgery, and had a slow recovery post-surgery. He faced his health challenges with Mrs. A’s continued support. She questioned, researched, encouraged, and asked questions of any one who had any contact with her husband. On a recent return checkup six months later, Mr. A is much better; living with mesothelioma and enjoying his life. He is adjusting to the changes that living with this disease has brought to him and his family. Mrs. A is happy that her husband is better and continues to be one of the best patient advocate’s that we have seen.

Talking with Mrs. A. about her experience as her husband’s caregiver, several interesting points came up. As a retired teacher, the only way she felt she could keep up with all the medical terms and doctors’ appointments were with a notebook, not a computer, not an app, a simple notebook. She took it everywhere with her and used it extensively to navigate the medical system. She also shared that most of the time she was afraid and the way she was trying to cope was ask questions. Information was vital to her. She was very grateful for the team, but particularly grateful to Mr. A’s surgeon for saving his life. As Mr. A’s surgeon told Mrs. A, you were the one that saved his life. You were the one that when things did not seem right, you called or insisted that he call. You were the one who has been with him through the whole journey, you were the one who saved his life.

Caregivers are vital members of the mesothelioma team, and their contribution needs to be honored and recognized.

– Ellie

Mesothelioma Patient Care: Behind The Scenes

Every successful team needs people that work behind the scenes. In sports, it could be the trainer or the statistician, the person who does the scheduling, or the people in charge of the uniforms. Whatever the job it is necessary to keep the organization moving forward and progressing.

In the mesothelioma community, there are many people behind the scenes. Many people are trying to make a difference for the patients, families, caregivers and friends that have been affected by mesothelioma. Often the importance of their work is not recognized.

Recently when talking to a patient advocate we were reminded about how difficult it is to navigate the health care system on a regular basis and how difficult it can be when you are dealing with mesothelioma. A question about insurance coverage came up for one of the patients. They could not afford one of their prescriptions. The prescription was necessary for their recovery. After multiple phone calls and some arm twisting she developed a plan and could get the medication that the patient needed.

A researcher that we regularly see always asks about the patients. He asks because we can help him put a face to the stories about the patients. He usually does not meet the patients, his passion is research, but the stories are inspirational to him to know. He can make the connection that the work he is doing is making a difference.

A radiologist does his job during the day and during the evenings works on a clinical trial for mesothelioma. The disease is a personal interest of his. He knows that today’s research that is being conducted is hope for tomorrow’s cure.

The intake coordinator at the hospital is often the point of first contact for patients and families. A patient this week told me a story of how he was diagnosed with a life-threatening cancer and told that without treatment he had 3-6 months to live. The first appointment he could get with his local oncologist was 3 weeks from the day he was told his devastating diagnosis. Three weeks to someone who was just told he has 3-6 months and was in considerable pain is a lifetime. He made a few calls, he could navigate the system, and was seen the next day by an oncologist and a pain MD. Once in the MD’s office he was admitted to the hospital for workup and pain control. He now has a plan.

There are countless stories of people behind the scenes working tirelessly to make the patient and families experience better.

For mesothelioma patients and families please reach out there is a community surrounding you and many more behind the scenes that want to help.

– Ellie

The Importance of Communication Between the Mesothelioma Patient and Caregiver

Being diagnosed with mesothelioma is a difficult challenge. Not only is it a challenge for the patient it is also for their loved ones. Relationships change with a new unknown reality. Roles change as couple’s transition to patients and caregivers. Any cancer diagnosis forces people to look at the reality that most of us are uncomfortable with – we are all going to die.   During this time it is important for the caregiver to realize and accept that the patient is the one in the driver’s seat- making the final decisions. If the patient is unable to make the decisions they have to act as their voice, making the hard choices that they might not agree with. When the disease progresses it can be overwhelming for both the patient and the caregiver. To watch your loved one suffer from shortness of breath or pain can be unbearable to the caregiver. Being unable to fix it for your loved one is devastating. It reminds you of how powerless we can be as humans.  Intellectually we all know that we will all leave this world when the time comes despite all our medical treatments. The challenge of caring for a loved one during this time can be daunting, overwhelming and difficult to deal with. Most of us will fight to the end for our loved one. The person with the disease is the one who decides when the fight shifts. There is nothing wrong with doing everything for your sick loved one but you have to realize it is about them. The physical and emotional fatigue and pain they endure can be immense. It is up to them when they say enough is enough.

After visiting a patient with re-occurrence who was in a rehab center, her husband was reporting that she was doing better. He thought that her pain was under control, she was eating better and was starting to walk more. When talking with the patient it was clear that she had enough. She was not any better. She was ready to shift goals of care. She did not want to “disappoint” her husband but she was tired and at peace. She had done what some people who know that death is near do. She had done a life review and made peace with how she had lived her life. She relied on her faith and was ready to die. The couple had many conversations over the years about what they wanted at end of life. She was ready, he was not.

When this happens, there are things you can do as the partner/ caregiver. A change of strategy is in order. This is probably one of the most difficult things you have to do. Take a deep breath and listen to your loved one. If he or she is tired of appointments, medications, exercise, nutrition, it is ok to let them be. When this turning point comes, the focus changes. It really becomes about the patient and how they want to live out their lives. Attempting visits with people they have not seen or enjoying their home and surroundings can be options. It is okay just to be in the moment and enjoy each other’s company wherever the surroundings may be.

How do you get to the point that you are both ready to face dying together? How do you say good bye? The starting point is to listen and hear what your loved one is saying- not what you want to hear. Respect their wishes and follow their lead. Enjoy the moments, savor your time, and create memories that will sustain you through the difficult days ahead.

“Life is pleasant. Death is peaceful. It is the transition that’s troublesome.” Isaac Asminov

Reminder to Mesothelioma Caregivers: Don’t Forget About Yourself

post-thumbnailMesothelioma is a diagnosis that affects not only the patient but also the caregiver. When one person in the family is sick, everyone feels it; everyone is affected. One day everything is “ok” and the next day your life has changed; it is unexpected and it can feel traumatic.

Most often the caregiver is the one who takes on the role of the patient’s treatment manager. The one who makes appointments, manages medications, does the research, attends all appointments, takes notes, asks the questions and keeps family and friends updated on progress. However, life outside of the disease does not stop. “Regular life”, pre-mesothelioma, still goes on. You still need to pay bills, cook meals, clean the house, go to work or take care of children on top of your new role as caregiver and all the duties it entails. This can lead to what is known as caregiver stress. What does caregiver stress look like? How does it manifest itself?

It manifests itself in many different ways. For example, the caregiver feels fatigued, weighed down. They put the patient’s needs first and their own needs last. The caretaker often neglects their own health; cancelling their own doctor’s appointments, not exercising regularly, eating on the run or eating more comfort food. In addition, stress can affect one’s sleep. The caregiver has so much on their mind it’s often hard to “shut it off” in order to get to sleep. Poor sleep can lead to irritability and having less patience than you normally would.

In addition, caregivers spend a great deal of time emotionally supporting the patient, leaving caregivers feeling emotionally depleted and without much left for themselves. It is important to recognize and acknowledge that caregivers willingly and lovingly take on the caregiver role but it is not without an emotional price tag.

So, caregivers remember: pay some attention to yourselves, if for no other reason than to have enough stamina left to be a caregiver.

Caregivers and Caregivers Health

post-thumbnailCaregivers and caregivers health is a major issue in taking care of mesothelioma victims. Overall, the figures are staggering regarding the effects on caregivers’ health short-term and in some cases long- term. Their physical, mental and emotional health can be affected for years.

Becoming a caregiver is not something that comes naturally to everyone. The timing in the caregiver’s life might not be optimal. Over the years we have seen people who could never have imagined themselves as caregivers do an outstanding job caring for their loved ones. One patient in particular had a rocky course, his wife was his caregiver. After a long difficult hospitalization and rehab stay, they went home. Three months later, walking down the corridor in the hospital they spotted me. I recognized him immediately- he looked well, said he felt well and was doing better than he could have imagined. His wife had lost weight, looked tired, and had aged since the hospitalization and recovery. It was clear when talking with them that she had given her all for her husband to get better, but had not taken care of herself. What would help her cope with being a caregiver? What resources are available?

One of the most important things that a caregiver needs to know is that they are not alone. Help and support are available. It is not a sign of weakness that you take care of yourself. According to the web site Family Caregiver Alliance- – “Caregiving can also result in feeling a loss of self identity, lower levels of self-esteem, constant worry, or feelings of uncertainty. Caregivers have less self-acceptance and feel less effective and less in control of their lives than non-caregivers.”

There are many positive benefits of being a caretaker. Caregivers need to realize that this is not something that one person can do effectively over the long-term, without support and taking time for themselves.

A suggestion for a caregiver who is feeling alone or needs some support is to reach out. Support groups are available online. Sometimes just having a place to communicate with others who are going through similar experiences is helpful. When friends and family offer to help, take them up on their offer and give yourself a break. Remember that you need to be healthy and strong physically and emotionally to continue to take the best care of your loved one.

Ellie Ericson

  • This field is for validation purposes and should be left unchanged.

Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

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