Category: For Your Family
Thanksgiving: Giving Thanks to all Those in the Mesothelioma Community
Holidays can be challenging when you or a loved one is dealing with a serious medical issue.
Thanksgiving is a day steeped in traditions; A time for turkey, football, family, and all the reasons to give thanks, we share these rituals with family and friends yearly. If this is the first one that you or your loved one are celebrating with a diagnosis of malignant mesothelioma chances are this one is different.
With the new perspective that comes with dealing with a rare cancer, and facing the unknown that is ahead, giving thanks takes on a new meaning. In addition to your usual support systems, this is a time to lean on the community that surrounds and tirelessly advocates for those afflicted with this mostly preventable cancer.
The mesothelioma community is an active group of family members, researchers, advocates, and caregivers all committed to supporting and advocating for patients and their families. From support groups, political activism, and advocates in the medical and legal community, the work moves forward. This small community continues to support and hopefully improve the lives of the victims and their families.
The mesothelioma community has made extensive accomplishments that slowly, and hopefully, will lead to a cure. We are grateful for the teams of researchers who have dedicated their lives to finding treatments for this complex cancer. The team consists of many people that work in behind-the-scenes labs that are required to complete this extensive work. It is not always successful, but they continue tirelessly, as each new day lays the stepping stones leading to a cure. Although the work is necessary and important, it often goes unnoticed. Without their contributions, there can be no new innovative therapies. We applaud and give thanks for their continued work.
Advocates within the mesothelioma community continue to work on behalf of all victims and their families. They have been working for decades now, to place into law, a nationwide ban on asbestos. The goal has never been closer. This could not be made possible without patients and family members who have made this their lives work advocating for a total ban on the leading cause of Malignant Mesothelioma, asbestos. Knowing the devastation that asbestos causes, they continue on so others may not have to suffer the losses they have. We applaud and give thanks for their continued work.
Caregivers of patients with Malignant Mesothelioma are constantly coordinating, researching, and helping the patients on a daily basis. These caregivers consist mostly of unpaid family members who sacrificed their time and energy, often at the cost of their own health. We applaud and give thanks for their continued work.
On this Thanksgiving, we want to take this time to give thanks to all those in the mesothelioma community that continue to support patients and their loved ones.
November is National Family Caregivers Month
It cannot be emphasized enough how important a role family caregivers can play in helping others maintain their optimum health.
Being diagnosed with Malignant Mesothelioma, a rare serious cancer affects the patient as well as the family and their loved ones. As with most diseases, often there is one person that ends up being the primary caretaker. This role is often one that the person did not plan on or is prepared for. The people that are affected by this disease can be anyone. The caregiver can be a family member, a son, a daughter, a husband, a wife, a friend, a neighbor, a relative, or anyone that steps into this vital role.
There are different types of caregivers, the most common ones are someone who takes care of a family member without pay. The other types are professional, independent, private, informal, and volunteer caregivers.
Every November we recognize all the people that are filling that role with National Family Caregivers Month. In the United States, there are over 65 million Americans who care for their aging or disabled loved ones. Of this number, 90% are unpaid care providers.
One in four people at some time in their lives are caregivers to family, friends, or neighbors who have either physical or mental conditions. Of this number, nearly a third are helping someone with mental illness.Those are just the statistics. The statistics do not tell the everyday life of the caregiver. They take care of people in need every day. Often the price the caregiver pays is their own health, mental and physical, and social wellbeings. It has been well documented that often the caregivers’ health suffers due to this role.
To put a face to these statistics, look around you. A few years ago while seeing a mesothelioma patient return to the clinic with his wife, I was struck by the toll that the disease had taken on his wife. The patient looked great, he was doing well and had a positive outlook. His wife, his primary caretaker, was not doing as well. She had lost weight, looked tired, and reported feeling depressed. Being the caretaker had taken a very visible toll on her.
Chances are you know someone, work with someone, or you are someone taking care of another person. Reach out to the caretaker, lend a hand, be specific, and ask if you can help at a specific hour on a specific day. If you can’t physically help, listen to the caretaker. Schedule a time to talk to them regularly. The role they play is a demanding and rewarding one that we can make easier by supporting them. Make their journey less isolating in November and throughout the year.
There are resources available for support for caregivers;
www.hhs.gov Resources for Caregivers
www.Caregiving.org The National Alliance for Caregiving
www.Caregivers.org Caregiving at Home a Guide to Community Resources
www.AARP.org Resources for Caregivers and their Families
Specific for patients with Malignant Mesothelioma www.curemeso.org
Flexibility Plays an Important Role in the Mesothelioma Journey
The quality of flexibility is best described as the ability to bend without breaking. Facing challenges either physical or mental throughout life and the ability to adapt to the unexpected requires flexibility.
Everyone’s journey in life and facing death is different. Guiding these uncharted experiences can be very difficult for both the person facing their mortality and the family and loved ones trying to help.
When facing end-of-life patients and families often have different perspectives. The perspectives that they have at the beginning of the journey often change as the journey continues.
Recently a patient was facing the end of his life. He had battled his disease for several years and was ready to stop. His family was supportive of his decision and wanted to follow his wishes. The plan was hospice at home with family members taking turns caring for them. The family was able to see that his wishes were honored but it required flexibility. This sounds logical but when emotions and relationships are involved it is not always easy to navigate.
People plan and expect things to go by plan. Everybody has their own scenarios and plans about what they would like their death to look like. Sometimes these plans need to be adjusted. Like birth when the expectant parents have the birthing plan in place, every scenario is planned for. The unexpected happens and the plan needs to be adjusted. Flexibility plays an important part in that.
Malignant mesothelioma is a disease that challenges people every day beginning at diagnosis. It is a rare disease that charts its course from individual to individual.
When facing the end of life for any disease the plan may have to be adjusted. Any disease or end-of-life issue is never neatly packaged and there are no instructions on how to respond and which way to handle decisions and circumstances that are out of their control.
Remain flexible and adjust your expectations throughout your journey. Treasure every moment of this life. Planning is important but the ability to be flexible and adjust to life-ending moments as we respect the wishes of our loved ones is a success. Although the outcome may not be what you were hoping for and the timing may not be long enough, facing our mortality and those of our loved ones is an important part of life.
A Necessary Discussion: End-of-Life Options for Mesothelioma Patients
The COVID-19 pandemic has been a frightening time for all of us. The uncertain nature of the disease and number of people affected brings the importance of what we want at the end of our lives to the forefront. With hospitals and skilled nursing facilities limiting visitors and the inability of some to travel, it is necessary to discuss what we wish to happen at the end of life with our loved ones.
We all know that when one person within our family or group of friends gets diagnosed with a severe illness like malignant mesothelioma, it affects all of us. Uncomfortable conversations need to be had. However, navigating these complex and potentially life-altering conversations can be done in a reflective, thoughtful way.
As nurses, we have long heard our peers state that they would never have chosen the treatment that a particular patient went with, only to confront a health challenge themselves and choose the same treatment option.
Our relationships are the most important connections that we have. What we value and who we love are all individual decisions. Once we self-reflect on what we value and how we would like to live our final days, we need to let others know. To ensure your wishes are carried out, they must be shared with those who care about us: a spouse, partners, friends, and so on. Your medical team needs to know your desires, but more important than anything is that you and your loved ones know them.
Having essential conversations regarding our end-of-life wishes should be done by all of us, ideally before a health crisis. But unfortunately, it is easy to put off these conversations.
There is guidance and help on where to start thinking and planning about our wishes. Ellen Goodman, one of the co-founders of the Conversation Project, sums up their goal: “Conversations about what matters to you, not what is the matter with you.”
There are workbooks to help clarify your values and wishes. What do you value? Do you want to be home when you die? With who will you share your wishes?
In this complex world, sometimes we need to get back to basics and accept that we all are mortal. Talking and planning will not hasten our end of life but enable some peace when it does come. Ensuring that what you as an individual value and the decisions you want are honored can offer some peace of mind for both you and your loved ones.
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!
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.Download Now