Five Practical Ways to Help Family With Mesothelioma

A Guest Post by Dani Alexis www.mesotheliomahelp.org

Mesothelioma is a type of cancer that affects the “mesothelium,” a layer of tissue found inside the lungs and lining other organs and areas of the body. Unlike some types of cancer, mesothelioma nearly always has a definable cause, like exposure to asbestos, silica dust, or similar substances.

Although the cause can often be pinpointed, that doesn’t change the reality of the disease or the fact that diagnosis often creates more questions than it answers.  Mesothelioma can leave a person who has it feeling helpless, angry, or afraid – and it can leave caregivers wondering what they can do to help.  Here are five concrete, practical ways you can make a difference.

  • Keep a health log. Mesothelioma is a progressive disease, and every person who has it responds to treatment a little differently. By taking on the task of tracking medications and making brief daily notes about your loved one’s health, you can help your loved one and their doctor spot patterns that will help to determine whether or not a particular treatment is working.
  • Become a good administrator. From keeping track of doctor’s appointments to making sure your loved one’s end-of-life plans are committed to writing, an illness like mesothelioma comes with a lot of paperwork. Spend a little time every day getting acquainted with your loved one’s current treatment plan, their insurance policies, and their estate plans.  Work with them to have yourself added to the list of people with whom their doctor may discuss their care.  Take these steps before you need to, so you’re ready if a crisis occurs.
  • Know your own rights. Millions of U.S. workers are covered by the federal Family and Medical Leave Act (FMLA), which allows them to take up to 12 weeks off work, unpaid, to care for a family member. Many workers also have compensation packages that allow them to take paid or unpaid time to care for a sick family member.  Check to see whether your workplace is covered by FMLA and what your compensation package offers, so you know how much time you have and what you need to do to protect your job and take care of your loved one.
  • Listen. Mesothelioma can be devastating news. The diagnosis often seems to come out of nowhere, and the fact that it can often be traced to a specific event, job, or time period can make the diagnosis seem even more unfair.  The best thing you can do for your loved one is to listen and encourage them to express their feelings. Your loved one may be feeling afraid, anxious, betrayed, angry, or hurt.  They may seem to have accepted the diagnosis one day, only to rage against the unfairness of it the next.  Remind them that their feelings are valid and that it’s okay to talk, cry, or process them in healthy ways, such as through journaling or exercise.
  1. Support yourself as well. It’s tough to be the “on call” person for your loved one all day, every day. Finding time for yourself can seem impossible.  That’s where a support group can help.  By connecting with other caregivers, you gain a place to safely process your feelings, as well as advice and guidance from others who are facing the same challenges you are.  Can’t find a support group for mesothelioma caregivers near you?  Try looking for support groups online or talking to those who provide care for family members with other chronic or serious conditions, such as cerebral palsy.  Even when the conditions are different, many of the tasks of caregiving – and the tips for making that caregiving easier – are the same.

www.mesotheliomahelp.org

If you are a caregiver for someone with mesothelioma, or know someone who is, and you would like a free Caregivers Are Heroes wrist band – send your request along with the complete mailing address including the street name and number, city, state, and zip code to me at bcarducci@comcast.net  (Continental U.S. address only).

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Mesothelioma Caregiver: You Are Bold, Strong, And Not Alone

Welcome Guest Blogger, Nicole Godfrey, writer and community outreach associate for Mesothelioma Guide.

In the words of Brett H. Lewis, “Health is by chance – Caregiving is by choice.” Caregiving is a huge responsibility, but you must remember that you are only human. You must also remember that the person that you’re caring for is still the same person. Don’t let a diagnosis change your point of view about them.

Mesothelioma Guide is dedicated to helping mesothelioma patients thrive, which includes providing information and support to their caregivers.

What to Expect

There are several factors to take into consideration when it comes to assuming the role of caregiver. As a caregiver to a mesothelioma patient, your role is going to change as the patient’s disease develops. The patient’s state of health may improve or it may decline.

Here are a few responsibilities you may have

  •  Feeding, dressing, bathing
  • Managing medication
  •   Providing transportation

Your duties as a caregiver are to assist in the day-to-day activities of the patient. You will not only monitor their health and provide them companionship, but you will find yourself being a part of a big decision making process. You will help them make decisions about their treatments, their financial and legal issues, their insurance, and their end-of-life treatment.

Don’t Forget About Yourself

As a caregiver you are going to find yourself being a huge part of someone else’s life, but you must remember that you are an important factor to making your role successful.

It is completely ok to take a timeout and to assess the new responsibilities that you are having to adapt to.

Here are a few tips to any caregiver

  • Rest
  • Take care of yourself physically
  • Accept help from others
  • Seek the aid of respite help

Read Mesothelioma Guide’s blog for more information on how to take care of yourself as a mesothelioma caretaker.

Talk About It

You are going to find yourself being a whirlwind of emotions. You are going to be scared. You are going to be angry. And that is ok. However, don’t bottle up your emotions. Talking about the circumstances can be your best dose of medicine.

You can always talk directly to the person who you are caring for. By doing this, you can address any questions you may have. Also, this allows you and the patient to express how you are both feeling. However, if the person you are caring for doesn’t want to talk, or you find it difficult to talk to them, you can always explore the option of support groups.

Support groups aren’t just for the patient. Some of these groups are designed specifically to help caregivers. Support groups help a person to stay both positive and hopeful. A person can attend a support group meeting in person, by a phone conference, or online.

It has also been proven that support groups can

  • Reduce stress
  • Provide inspiration
  • Offer comfort

You must remember that you are not alone. Support groups are designed to create a community where people can talk about their disease or it gives caregivers a chance to express their concerns about caring for someone with a disease.

Sources:

Quote: https://www.goodreads.com/author/quotes/6546527.Brett_H_Lewis

https://www.mesotheliomaguide.com/community/caregivers/

https://www.mesotheliomaguide.com/community/the-nurses-corner-9-ways-mesothelioma-caregivers-can-care-for-themselves-too/

https://www.mesotheliomaguide.com/community/support/

LungLeavin’ Day – A Very Special Caregiver Event

Smashing platesThe following email from a loving husband brought tears to my eyes and hope to my heart. Please join me and Cameron Von St. James in celebrating with him and his wife, Heather, LungLeavin’Day.

My name is Cameron Von St. James and I’m a husband to one of the strongest people I know. Eight years ago, after our only child was born, my wife Heather was diagnosed with mesothelioma – a rare cancer caused only by asbestos exposure. My wife’s chronic illness taught us the importance of acknowledging and overcoming our fears, something that prevent us all from living life to the fullest.

This February 2nd marks the 8th anniversary of Heather’s life saving surgery, which involved a risky procedure requiring the removal of her left lung. It is a very special day to me and is considered one of the memorable days of my life! We’ve coined this day as LungLeavin’ Day.

The purpose of LungLeavin’ Day is to encourage and empower others battling their own illnesses and life challenges to face their fears! On this day we celebrate for those who are no longer with us, for those who continue to fight, for those who are currently going through a tough time in their life, and most importantly, we celebrate life! Each year, friends and family gather at our house around a bonfire where we write our fears on a plate and smash them into the fire to represent conquering our fears.

This year, we are asking bloggers to participate in LungLeavin’ Day! We’ve created an interactive page that tells the full story of this special day, which can be found here: http://www.mesothelioma.com/heather/lungleavinday/

I’d love for you to check out the page and consider sharing it on your blog to help spread the word about LungLeavin’ Day! It would mean so much to Heather and I.

Thanks so much for your time!
Cameron

Cameron Von St. James
http://www.mesothelioma.com/blog/authors/cameron/