Mesothelioma Help Cancer News
Thanks to All Mesothelioma Caregivers
November is National Family Caregivers Month. Being in the same month as Thanksgiving, this is a group that deserves our thanks – the unpaid caregivers. It is difficult to be the patient, or the sick one of the family, but caregivers have their own challenges. Over 90 million Americans care for others who have a disability, disease, chronic condition or are elderly. Caregivers range from parents taking care of sick children to grown adults taking care of their elderly parents.They cross all socio-economic demographics, but the majority are women.
Oftentimes taking care of a mesothelioma patient is a sudden role that you did not anticipate. One day you and your spouse are living your everyday life, and the next you have been dealt with a serious illness that needs action. Not only are you your spouse’s support, but you are also the sounding board for decisions. Where do we go? What kind of treatment should we choose?
It sounds like a few easy questions, but it is not. It is a tough disease and the questions are not easy to answer. So once you have made decisions and the focus is totally on the patient – what about you, the caregiver? At the mesothelioma center where I work, we feel the caregiver is just as important as the patient and we try to provide support for them as well. But the most difficult thing for the caregiver is to realize that they too are important.
From my Experience of Caregiving, it is a tough job to say the least. It is stressful emotionally, physically and financially. There are a lot of support options for mesothelioma caregivers. If you are at a mesothelioma center, there are probably onsite support groups. You may not think you have anything to add, but consider just showing up and seeing what others say. You may get some advice about how others are handling this challenging role.
Another often overlooked issue is physically taking care of yourself. Caregives must make sure to eat healthy and take an occasional walk. A thirty minute walk can do wonders. It can take you away from the hospital setting, allow you to inhale fresh air and clear your mind. Caregiving is hard work so take breaks. If someone offers to lend a hand, let them, you can always reciprocate sometime. Learn how to communicate effectively with the medical team. Write down your questions. Keep them concise and prioritize which questions you want answered first.
There are many tips that can help the caregiver so please try out a support group or reach out to a social worker or clergy. Above all, give yourself credit for doing the best you can for your loved one.
Visit the following websites designed to support the family caregivers: Generations United, and National Alliance for Caregiving.
Thank you for all you do for your loved ones!
Help Your Loved Ones Cope With, and Enjoy, Thanksgiving
Mesothelioma patients and their families may be hard-pressed to find anything to be thankful for this time of year. They may be coping with feelings of sadness, depression and fatigue that are contradictory to the festiveness of the season. However, turning their thoughts and conversations to what they still have – friends and family – instead of focusing on their hardships can make a difference in their outlook.
Experts at University of Wisconsin note that the way friends and families interact with their loved ones can make a big difference in a mesothelioma patient’s ability to cope during this time. The holidays can be a tense time for cancer patients, and they may not want to talk about their health or situation. Take the cue from them in guiding the conversation.
Expert Insight
Henry David Thoreau
“I am grateful for what I am and have. My thanksgiving is perpetual.”
Giving someone suffering from mesothelioma a false sense of the future can leave them feeling betrayed when their health begins to fail them. Instead of saying “You’ll be fine,” and “It will be okay,” the UW cancer care team suggest you say or ask the following to help boost their mood:
- “Is there anything I can help you with?”
- “I’m here for you.”
- “Would you like to talk about it?”
- Or simply, “Happy Holidays – it is so nice to see you!”
Even if your loved one is in the hospital over Thanksgiving, taking the time to think of something to be grateful for can lighten the mood. Just sitting quietly and watching the Macy’s Thanksgiving Day Parade or a football game on TV can lessen the stress and loneliness of being in the hospital.
Remember too, that there are services available to help patients and their families cope with the holidays. Take advantage of the experts who can give you a healthy perspective on your feelings.
Holidays are a time to enjoy and reconnect with family and friends which is particularly important for someone who is ill. Try to not dwell in the past or to think too much about the future. Instead take the time to enjoy the moment. It is true that the future for mesothelioma patients and their families is uncertain, but staying grounded in the present can help keep negative thoughts at bay.
Know more about Mesothelioma and how you can deal with it.
Put Your Trust in Your Mesothelioma Medical Team
One of the things we believe is so important when we talk to mesothelioma patients is the importance of putting your trust in your mesothelioma team. Trust that they have your best interests at heart, and that they will do everything possible to ensure that your wishes are respected.
Both the mesothelioma patient and his or her family must be comfortable with the team and communicate with them what their needs are. When things go well this also seems to work well. Unfortunately, mesothelioma is a complicated disease and it does not follow any rules for anyone involved, including the patient, family or the health care team members.
When we meet patients they are usually in the throes of treatment, whether it be surgery, chemotherapy or a clinical trial. When talking with patients and families they often ask countless questions like: Is this normal? Have you seen this before? What do you think is next? Do people recover from this? Will I ever get out of here?
Being treated for mesothelioma requires trust as well as the ability to assess all the information you have, and to keep it in perspective during this stressful time. Recently, a family member of a patient in the ICU, commented to me how helpful it had been to know what to expect while her family member was critically ill. By phoning before she came to visit, she felt better prepared so when she saw her loved one it wasn’t such a shock. Before seeing her loved one in the ICU she heard terms such as intubated, pressure support, diuretics, weaning, but now she saw all this first hand.
How much information about potential problems is enough? What is the balance between possible complications that happen rarely- but do happen- and the course of your individual mesothelioma journey? As the woman visiting her loved one in the ICU continued to talk to me, I was struck, once again, with how important trust and open communication is for the mesothelioma patient and family.
The importance of receiving the information, but putting it in the right context, is critical. For example, sometimes patients get re-admitted after surgery for a variety of reasons, such as fluid balance, nutritional status, infections, or pneumonia. Often it is just for a few days, but some patients require a skilled nursing facility for a period of time to recover their strength. This is often a difficult time for patients and families as it was not in the original plan.
Ask questions, learn as much as you need to for yourself and your loved one, all the while develop a trusting relationship with your team. The journey is a “long and winding road” with the goal for everyone involved being quality time for mesothelioma patients with their loved ones.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Finding Comfort in Dad’s Music
A lot of people find much comfort in music. It has a healing quality to it, and you can usually find a song to fit any mood. Here are some lyrics that help me when I need to remember my Dad.
My Dad sang the song I’ll Fly Away often with his band, and it was also sung at his funeral:
“Some glad morning when this life is o’er, I’ll fly away.
To that home on God’s celestial shore, I’ll fly away.”
Dad called Rocky Top his “theme song”:
“Now all I know is it’s a pity life can’t be simple again.”
He was a fan of The Eagles. I remember him working in the basement at home and the song Take it Easy always seemed to be playing:
“Take it easy, take it easy. Don’t let the sound of your own wheels drive you crazy.
Lighten up while you still can, don’t even try to understand.
Just find a place to make your stand, and take it easy.”
Lastly, our song was You are My Sunshine:
“You are my sunshine, my only sunshine.
You make me happy when skies are gray.
You’ll never know, dear, how much I love you.
Please don’t take my sunshine away.”
What are some songs that remind you of your loved ones? I’d love to hear about them!
Mesothelioma Nurse Honors American Veterans
November 11 is the day that Americans set aside for honoring our veterans. Today, less than one percent of the people in the United States serve in the military. Mesothelioma makes up less than one percent of all cancers, yet, approximately 33% of all U.S. mesothelioma victims are veterans. Using the often cited number of between 2,500 and 3,000 newly diagnosed mesothelioma cases per year, it would follow that between 750 and 1,000 of those patients are veterans who served our country.
Veterans, like mesothelioma victims, come from all socio-economic backgrounds, faiths, and walks of life. Over the years, it has always been an honor for me to care for our veterans and families that develop mesothelioma. After sacrificing for our country, decades before, they are then afflicted with mesothelioma.
In recent years, improvements have been made in the U.S. Department of Veterans Affairs system for caring for mesothelioma veterans whose diagnosis is service related. Claims are now fast-tracked, and the VA acknowledges that the condition is service-connected. Reach out and educate a veteran who is also diagnosed with mesothelioma about the possibility of benefits.
Don’t let today go by without remembering a veteran. This year, more so than in years past, there seems to be more public attention to honoring our veterans. Whether it is displaying a green light, or giving veterans free oil changes, it is a day to honor, and thank those few among us who continue to keep us safe by serving our country.
We would like to thank all our veterans, those currently serving in our military, and those attending our service academies. To choose to serve our country, when so many other avenues are open for young adults, is a source of inspiration for all of us.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Know more about Mesothelioma and how you can deal with 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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