Author: Lisa Hyde-Barrett
Mesothelioma Nurse Suggests “The Conversation Project” as End-Of-Life Resource
With the new year upon us, one resolution we should all have is to have a conversation with our loved ones about what we want to happen at the end of life. All the changes, medical breakthroughs, advances in care for diseases, do not change the fact that all of us, at some point, are still going to die. We are uncomfortable with this truth, and as a result do not make our wishes known, and most of us prefer not to talk about it.
During the last week of December, Blue Cross Blue Shield of Massachusetts announced they will begin offering “some of the newest and most comprehensive end-of life benefits in the nation, aiming to prod patients and health care providers to discuss death openly and expand services to help people live out their last days,” according to a Dec. 28 article in the Boston Globe. Medicare will also begin covering these conversations, no matter when patients want to have them.
Why are these conversations so important? If your loved ones know what your wishes are and what is important to you, it can make decision-making at a very emotional time easier for all. All our journeys through life are unique, as is a patient’s journey with mesothelioma. There are unexpected twists and turns. However, knowing what your loved one, and you want the end to look like, can make this time comforting.
To help start these conversations, there is a non-profit group called The Conversation Project. The organization’s goal is to have these conversations with our loved ones so that our wishes are followed. They offer a starter kit and suggestions on how to have these difficult conversations. The web site reports that 90% of people say that talking with their loved ones about end of life care is important, but only 27% have actually done so.
The Conversation Project would like to move these conversations from the ICU to the kitchen table. From experience I can tell you many conversations that have been held over the years in the ICU have included quotes such as: “We never discussed dying,” “He didn’t want to upset me with talking about death,” and “I always thought I would go before him.” And many more from family members too confused and frightened to be faced with this challenge.
Having these conversations before time is critical does not mean that you have stopped fighting mesothelioma, rather, it means you have taken control of an important part of your unique life.
Let’s make 2016 the year that we raise that figure from 27% to 100% and have an end-of-life conversation, in each of our own unique ways, communicating our end of life wishes to our loved ones.
If you have any questions regarding any aspect of your mesothelioma care, feel free to email me at [email protected].
When the Changes Caused by Mesothelioma Slowly Creep Up
When you see someone everyday as they undergo treatment for mesothelioma, the physical changes can start gradually. As the caregiver, you accept and adjust to the changes. As your loved one changes over time, daily, you become accepting of them, and sometimes you don’t even see them or you discount them as being anything. When you are in the throes of caring for someone, you can lose perspective on how sick someone has become. You become accustomed to the symptoms of the disease progressing.
Maybe it is shortness of breath, pallor, swelling of the lower extremities, or the patient’s physical activity that has declined. When you step back and look at your loved one, away from the hospital setting, back in familiar settings, sometimes it is shocking, that you had not recognized the changes that are now glaring. How did you not see these changes?
Probably because you have been busy administering medications, providing comfort, pushing for more and better nutritional intake. It just happened. But now others are asking why you didn’t let them know, why you didn’t call or why you kept saying that everything is fine.
The truth is that the caregiver did not see it. Many people have been in this situation: the reality is that the disease is progressing. This is difficult to see and accept.
At this point, it is important to take a deep breath. Re-focus on fighting the symptoms, but accept what you cannot change and understand that time may well be limited and precious. By just being there you are providing emotional comfort and you are helping. Express your feelings, reminisce about the past, sit quietly.
Time is precious, and it only comes once, don’t miss it.
Mesothelioma Nurse Encourages Families to Celebrate Their Loved Ones
This past month, an older couple left a big impression on all the health care team members that they encountered. The patient, the woman, was bubbly and talkative; her husband was reserved and quiet. Together they were devoted to each other with an unshakable bond. They were a team facing mesothelioma, but it was not going as planned. Through their stay, before surgery, after surgery, and through the woman’s complications, one thing was clear: they loved each other.
They are a very loving couple, they have had a wonderful life together, but now she has mesothelioma and he is helping her. Their goal was to be home for the holidays. To have one more Christmas and to welcome in one more New Year in their own home, with their family and their traditions. The road has been short from diagnosis to this point. They have followed their mesothelioma team’s recommendations, but, unfortunately, she has not responded to the treatment as hoped.
They are now facing some big decisions about what is next. As their journey with mesothelioma continues, the rhythm of their lives is forever altered. They will be home for the holidays, savoring every moment, creating memories together, as they have been before mesothelioma. Together they will face the next chapter in their lives, and together they did make it home.
As we celebrate the holidays, remember to enjoy your loved ones, celebrate the joy in life, and remember to reach out to someone who might be alone and having a hard time this holiday season.
A Happy, Healthy New Year to all!
Know more about Mesothelioma and how you can deal with it.
A Look at 2016 Mesothelioma Conferences
We know from previous years that approximately 3,000 people in the United States will be diagnosed with mesothelioma. Of those 3,000, approximately one third will be veterans of the U.S. armed forces, they will be in their seventies and the majority will be males. Their asbestos exposure, the known cause for mesothelioma, will be as many as 20- 50 years before their diagnosis. These facts have not changed for many years.
The good news is the treatment, clinical trials, information, and options are so much more advanced now – and they will continue to advance in 2016. Through our ability to find information on the internet, and the availability of published research and public international conferences, we have been able to share the knowledge. With these resources, patients and families living with mesothelioma are better able to make more informed decisions.
Learn firsthand about the latest breakthroughs at these upcoming 2016 conferences:
- 12th Annual International Asbestos Awareness and Prevention Conference – Presented April 8-10, in Washington D.C., by the Asbestos Disease Awareness Organization. Following the theme “Where Knowledge and Action Unite,” the conference brings together speakers ranging from experts, victims, and unions to lawmakers from across the globe to speak about efforts in asbestos education, advocacy and awareness.
- 13th International Conference of the International Mesothelioma Interest Group (iMiG) – Held May 1-4 in Birmingham, UK, this conference, under the theme of “Towards Personalized Care,” will address the entire patient pathway and look beyond the scientific topics alone.
- International Symposium On Malignant Mesothelioma – Presented by the Mesothelioma Applied Research Foundation, this year will consist of three individual conferences in major cities: Houston (May 20), San Francisco (Sept. 16), and Chicago (Oct. 7). Each conference will feature top mesothelioma experts, professionally-moderated support sessions, and numerous opportunities for socialization. Patients, caregivers, family members, medical professionals, and anyone wishing to learn more about mesothelioma should feel free to attend.
If physically attending these conferences is not possible, look into attending “remotely” via the internet.
Knowledge is power. As the year progresses, follow along and we will update and expand on the pertinent mesothelioma conferences.
Sources:
- 12th Annual International Asbestos Awareness and Prevention Conference
http://www.asbestosdiseaseawareness.org/archives/34425
- Asbestos Disease Awareness Organization
http://www.cvent.com/events/2012-annual-asbestos-awareness-conference/archived-e6277e3d443b4c059bed43fc0937b530.aspx - 13th International Conference of the International Mesothelioma Interest Group
http://imig2016.org/
- International Symposium On Malignant Mesothelioma
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8578185/k.F0D0/INTERNATIONAL_SYMPOSIUM_ON_MALIGNANT_MESOTHELIOMA.htm - Mesothelioma Applied Research Foundation
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8598593/k.D685/Homepage.htm
Importance of Communicating to a Loved One with Mesothelioma
There are a few things that struck me this week as I was taking care of a mesothelioma patient. I always learn something from every patient. The patient, who had surgery was doing very well, and his wife came to visit him often. But, she was concerned about another family she had met while her husband was in the hospital.
The other patient was not doing as well, and he and his wife were from out of state. His wife was alone, although they had grown children who were in phone contact, they both told them not to come. At the beginning this plan was working for them, but as time went on, the wife needed some support and relief.
With the holidays approaching, they were reluctant to “bother” their children. Mesothelioma is a very difficult disease and treatment regimen to endure alone. To be far from home and to have this on your shoulders is a lot. Family and friends want to do the right thing, but often they don’t want to overstep their boundaries. People want to respect the patients and their families privacy.
In different situations when the parents did call for help, I have heard, “Why didn’t you call me sooner?” “We wanted to come, but you didn’t want us to.” Often, in the caregiver’s and patient’s eyes asking for help and support is an admission that things are not going well. What I have seen is that some caregivers and patients are not going to ask for anything, regardless of the situation.
As a friend or family member, keep this in mind. If you are calling and getting the same answer that they are fine and do not need anything, if this does not feel right, if your instinct is telling you something else, listen to it. Ask yourself this one question: “At what point are they going to ask me to come?” You might be surprised with the answer – it very well could be never. That answer is out of love, and is not to exclude you. They fear burdening you and upsetting your busy life. They also feel they should be able to handle this by themselves.
If you think you want to do something, just do it. Patients and caregivers don’t want to bother anyone, and sometimes they do not even know what they need. Often it can be just a warm smile, a hug or just a presence. Although you think you won’t make a difference, you have no idea how a small gesture will make someone feel. It is hard to handle mesothelioma alone, regardless of the holidays.
Please, if your instinct tells you to do something large or small, listen to it!
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