Author: Lisa Hyde-Barrett
President Declared November as National Family Caregivers Month
“Each day, courageous individuals step forward to help care for family members in need, their quiet acts of selflessness and sacrifice telling a story of love and devotion. Across our country, parents and children, siblings and spouses, friends and neighbors heroically give of themselves to support those in their lives affected by illness, injury, or disability. During National Family Caregivers Month, we salute the people who play difficult and exhausting roles, and we recommit to lifting up these Americans as they care for their loved ones while protecting their dignity and individuality.
In the United States, more than 60 million caregivers provide invaluable strength and assistance to their family members, and as the number of older Americans rises, so will the number of caregivers. Many of these dedicated people work full time and raise children of their own while also caring for the needs of their loved ones. Caregivers support the independence of their family members and enable them to more fully participate in their communities, and as a Nation, we have an obligation to empower these selfless individuals.” ~ Presidential Proclamation — National Family Caregivers Month, 2014
The reality is without family caregivers, we would not be able to care for the sick. All of us at some point in our lives, for some period of time will have the opportunity to take care of someone. We are them.
[expert_info author=”Rashida Jones”]“I know that in life there will be sickness, devastation, disappointments, heartache- it’s a given. What’s not a given is the way you choose to get through it all. If you look hard enough, you can always find the bright side.” [/expert_info]As I look back on some of the family caregivers I have encountered over the years, some of the faces and names, and their stories, come to mind. The newly married wife of a young mesothelioma patient, how supportive and loving she was and how well he did. The next time I saw them he had gained twenty pounds, looked and felt wonderful; she had aged, and lost ten pounds, but her smile could not have been brighter!
There was an elderly couple who had been together for a long time, she had mesothelioma and he doted on her, took notes, and was happy to do anything he could for her.
A middle aged couple, married for twenty years with no children – she had mesothelioma, she was the light of his life. He would travel half way across the country to work in order to keep their medical insurance, so that she would have the care she wanted at the institution she wanted.
The stories will never make the headlines, but they are more important than any celebrity, or business deal, or latest fad to sweep the nation. They are happening every day, look around and be thankful: we have them among us.
Family caregivers are the bright side!
Mesothelioma Nurse Takes Workshop Designed to Help Her Help Patients Heal Faster
I was recently working in the intensive care unit when I received a patient from the operating room. She was 65 years old and had her lung removed because of mesothelioma. She was a pleasant woman who was awake and able to converse with me. I was getting her settled, which can be time consuming, and I was able to explain my movements and my tasks to help alleviate some of her anxiety.
Soon her husband came in to stay with her, and I included him in my explanation of the plan for recovery, as well as explaining our policies. It is important to include the family and patient in the plan of care.
As our afternoon progressed, I found the patient and her husband fascinating. The patient, who I will call Rose, was unique and had something that I was drawn to. As our afternoon continued, I learned about her personal journey. She lived with her husband and had a supportive family. Unfortunately, her brother-in-law was battling cancer as well. This couple had been faced with their own cancer story and were also weighed down by other family member’s cancer as well.
Rose had received chemotherapy preoperatively, and as she says, it was rough. She had lost some of her hair, and she was petite, with not much excess weight. She continued to tell me about her life and her journey with mesothelioma. I still felt something was different about her. Then she told me she had taken a workshop prior to her surgery – Peggy Huddleston’s Prepare for Surgery Heal Faster.
Rose and her husband explained that someone contacted them after they requested this workshop. She explained to me this woman called them and spent approximately an hour on the phone call using mind body techniques. It is a five-step process to prepare for surgery (or chemotherapy or radiation). My shift ended and I said goodbye and wished them well.
As I drove home that evening I thought about her and realized I had to investigate more about Peggy Huddleston. Thank goodness for Google. I found her on the internet and called her. We had numerous conversations about her workshop and how I had met Rose. I got the book. I read it from start to end and sat back and thought about it.
My next step was to take the workshop. It was a two-day workshop to become trained on how to offer this workshop to patients. The course was on a Sunday, and I drove about 40 miles to see this woman at her house. I have to admit I was a bit skeptical and uneasy about this. I really was not sure what to expect.
One hour after meeting her I was hooked. I was fascinated by her thoughts, stories and ideas. We continued through the day and into the next with information offered on how to make a difference for this these patients. I felt like this was no accident and this is the basis of me being a nurse, I want to make a difference, especially for mesothelioma patients.
The two days flew by like no other conference/workshop I had ever been to, and I have attended my fair share. I was energized and excited about this new way to help people. So now I too can offer this workshop to help people with their medical treatments.
If you need something else try this. I have seen a lot during my career and this works. Besides making you feel well, there is research that shows this workshop reduces length of stay, and lessens the need for pain medicine. There are many testimonials about this program – and Rose was one of them saying it made a huge difference in her recovery and journey with mesothelioma.
If you are interested in reading and learning more about this, or if you have any question about any aspect of your mesothelioma care, please email me at [email protected].
Nurse Recommends Flu Shot for Mesothelioma Patients
Should mesothelioma patients and their family members take the flu shot? This question was posed to a panel of mesothelioma experts at the Mesothelioma Applied Research Foundation’s regional conference held October 10, in Chicago. The panel all agreed that, yes, everyone should unless there was an overriding, rare, reason not to take the vaccination.
The Centers for Disease Control and Prevention (CDC) recommends the flu shot for everyone over the age of six months. It is particularly recommended for high-risk individuals who are more prone to flu complications, such as pneumonia. The list includes: people age 65 years or older; women who will be pregnant during the flu season; people who live in nursing homes; anyone with chronic heart or lung conditions, including asthma, or with any condition that weakens the immune system, such as diabetes or HIV; caregivers; any person in close contact with someone in a high-risk group, such as health care workers and household contacts; children younger than age 5, but especially those younger than 2 years old.
The flu by definition is a contagious respiratory illness caused by the influenza virus. The best way to prevent the flu is by getting vaccinated every year. The flu can cause mild to severe illness. Some of the symptoms are fever, aches, chills, extreme tiredness, and lack of energy. These symptoms come on quickly. Other symptoms include headache, sore throat, runny or stuffy nose, stomach symptoms such as nausea, vomiting and diarrhea, and chest discomfort.
Up to 20% of Americans get the flu each year. More than 200,000 people in the U.S. are hospitalized each year, and somewhere between 3,000 and 49,000 deaths are flu-related. According to the CDC, in the past flu seasons when the match between flu vaccine and circulatory strains of flu virus is close, a flu shot is 71% effective in reducing the flu-related hospitalizations among adults of all ages, and 77% percent effective among adults age 50 and older.
The evidence is in. Roll up your sleeves and get the flu shot! If you have had a reaction in the past to the flu shot, or have a severe egg allergy check with your doctor. If you are unsure call and ask, the benefits could be lifesaving. The flu in a mesothelioma patient who has had chemo, is a challenge that is best avoided!
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Nurse Explains Mesothelioma Treatment Decision Points Used at Brigham and Women’s Hospital
Deciding which path to choose in the treatment of mesothelioma can be confusing and overwhelming. The available options are often individualized and tailored to the patient based on the stage of the disease, lymph node involvement, and the patient’s functional status. Using this information and the patient’s desires, the mesothelioma team and the patient will work together to determine the best plan for the patient.
Some questions for the patient to ask him/herself include: Is the chance of living longer worth going through surgery, chemotherapy, and more tests? How do I make a decision when the stakes are so high? Do I understand all the options presented by my oncologist?
Dr. Raphael Bueno, Director of the International Mesothelioma Program, Brigham and Women’s Hospital, talks about three factors that he and his team, and the patient, consider when deciding on a treatment plan for mesothelioma.
Dr. Bueno’s first step is to determine how advanced the cancer is. Is it actually mesothelioma? Is the mesothelioma localized or has it spread to the lymph nodes? Is it amenable to surgery? Is chemotherapy a better option than surgery? These questions emphasize why it is so important to go to a treatment center with mesothelioma experts. They can give you the benefit of their experience in treating patients with mesothelioma that other less experienced teams cannot.
The second factor that Dr. Bueno uses is the patient’s physical condition. Functional status is the term used to describe what the patient is able to do to meet their daily needs, fulfill usual roles, and maintain health and well-being. Is the patient debilitated? Can he/she walk or are they bed bound?
The third factor is, “What does the patient want?” This is where you have to look deep inside yourself and ask yourself, “Is this what I want?” Do you want to turn over every stone and fight aggressively? Is what you are feeling the right path for you?
This is a brief, simplified outline of a very involved multidisciplinary process involving many experts. However, I hope that it does give you some questions to contemplate, and shows you that your mesothelioma treatment is not dictated by the medical team but is a collaborative decision.
The decisions that go into determining your mesothelioma treatment plan are not easy, but support is available. Remember that progress is being made, and there is hope!
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Mesothelioma Nurse Suggests Reading Book That Addresses Mortality
When diagnosed with mesothelioma, or any life-threatening illness, it compels the patient, family and contemporaries to face our own mortality. The fact that we are all going to die is something we all know, but no one wants to deal with it. How many of us do not have a will or have not done any estate planning? What will death look like for us? Will we be in pain? Alone? Broke? What matters?
On October 7, “Being Mortal: Medicine and What Matters in the End,” by Dr. Atul Gawande, will be released. Dr. Gawande is a New York Times best-selling author and a talented, practicing surgeon at Brigham and Women’s Hospital in Boston, Massachusetts.
Below is an excerpt of the overview of the book:
“Medicine has triumphed in a modern time, transforming birth, injury and infectious disease from harrowing to manageable. But in the inevitable condition of aging and death the goals of medicine seem too frequently to run counter to the interest of the human spirit. Nursing homes, preoccupied with safety, pin patients into railed beds and wheelchairs. Hospitals isolate the dying; checking for vital signs long after the goals of care have become moot. Doctors committed to extending life, continue to carry out devastating procedures that in the end extend suffering.”
Hopefully, this book will open up conversations and actions that will lead to exploring our fears about death and continuing life after there is quality that we do not want.
For mesothelioma victims, the importance of palliative care experts on your team is again emphasized. From the time of diagnosis through the journey of mesothelioma treatments, quality of life issues, and being pain free, palliative care specialists strive to meet the patients’ needs.
Being aggressive with mesothelioma medical treatment is what is encouraged. However, a good quality of life is the goal.
Being Mortal:Medicine and What Matters in the End is available through Amazon.
If you have questions about your mesothelioma treatment, palliative care, or any aspect of your mesothelioma care, please email me at [email protected].
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