Category: Family
Turn Gossip into an Opportunity to Advocate for Mesothelioma Patients
People talk. It’s what we do. We discuss the weather, current events, and even each other. That’s where things can start to get out of control. An innocent conversation can spiral into a story that is far from the truth. People feel that they have the right to share details that may have been told in confidence. But that information can be misinterpreted and gossip begins to run rampant.
Since my Dad’s battle with mesothelioma, I have found myself to be fiercely protective of the ins and outs of my life, only sharing details with close family members and friends. Since mesothelioma is such a rare disease, the details of this ailment lends itself to confusion; however, hearing things about yourself and your family that simply aren’t true is a painful experience, and one that should never happen.
Words have the power to build up and to tear down. They can mend relationships or break them apart. We need to be increasingly mindful of the power of words, especially in such sensitive situations as a medical diagnosis.
If you find yourself in a situation where information about you or your loved one has been misconstrued, do your best to see it as an opportunity to educate and advocate. Maybe this is a chance to share your true story that could eventually help someone else. This could be the eye-opener that causes someone to ponder the dangers of asbestos. Use this unfortunate event as a catalyst for change.
Hospice Care Goes Beyond The Mesothelioma Patient
I have written several times about the benefits of hospice for mesothelioma patients and their families. However, it wasn’t until December that I found out first hand just how vital a hospice organization can be when the end of life draws near. My mother-in-law reached out to hospice as my father-in-law became debilitated with pancreatic cancer, and we found that hospice care extends beyond the patient.
Just as with my father-in-law, when a mesothelioma patient no longer responds to a prescribed treatment plan, and the primary caregiver needs support caring for their loved one, turning to a hospice program is one option to explore. One critical point to note is that hospice is not just for the patient – the support is for the entire family.
Mesothelioma is a terminal cancer that may not develop for decades after initial exposure to asbestos. However, once symptoms become apparent, mesothelioma may rapidly progress to cause life-threatening complications. Once a hospice nurse is with the patient, he will be carefully monitored and kept as comfortable as possible while managing the symptoms the mesothelioma patient is experiencing. The caregiver will also feel comforted knowing a care team is by the phone for them 24/7.
Hospice is not a “place” rather it is a concept of care. According to the Hospice Foundation of America, hospice is designed to improve the quality of a patient’s last days by offering comfort and dignity. In addition, hospice care neither prolongs life nor hastens death. However, it does allow for patients to remain in their own home surrounded by their loved ones.
As soon as hospice is in place, a personalized plan is established and a team of professionals including nurses, chaplains, nursing assistants, social workers and bereavement counselors will be assigned. And they do not waste any time becoming part of your family and ensuring everyone’s needs are addressed. Of course, the patient is first and foremost and the care team will provide care for symptoms such as pain, nausea, vomiting, shortness of breath and restlessness; medication management; and personal care including bathing and light housekeeping. They may also provide a hospital bed and any other items needed for comfort and medical support.
The team offers a partnership in caring for your loved one. Not only do they provide the medical support needed, but they also help the caregiver by providing a thorough explanation of what is going on and what to expect, a friendly person to talk to, and they will sit with the patient so the caregiver can go out for groceries, lunch or to run other errands that get ignored while providing 24-hour care. The hospice also offers chaplain services and spiritual care.
The National Hospice and Palliative Care Organization estimates that there are over 5,500 hospice programs in the United States caring for nearly 1.5 million patients each year. Sixty-six percent of the hospice care is provided in the patient’s home, family member’s home or in nursing homes. The median length of time for hospice care is less than 19 days.
Hospice care doesn’t end when the patient passes away. The hospice team will help with contacting appropriate parties, arranging funeral services, and conducting the service if requested. Although no one wants to think of the end of life, the multi-disciplinary hospice team can help ease the burden and help you in the difficult transition.
Don’t Forget the Spirit of Christmas and the Hope It Brings
It’s hard to believe that 2014 is already coming to a close. This year saw my first full year without my Dad. As we come to the Christmas season, it is, once again, a time to reflect on the memories and love that he left behind.
Last year, the pain of losing my father was excruciatingly fresh. I was still in shock and unsure about how I would carry on without having him here with me. Now, the pain still remains and I often question how it is possible to live a “normal” life after losing Dad, but this year I realize that I have had some time to reflect on the entire journey that he had with mesothelioma.
Dad’s mesothelioma story is one of sadness, followed by a miracle and joy. It is a tale riddled with highs and lows, but always full of love and hope. This love and hope is what Christmas is all about. As we celebrate the birth of Jesus, it is important to also hold our loved ones close and remember all of the good that is in this world. It is easy to get caught up in the commercial side of the season, but remember the true reason.
Dad was so much more than this terrible disease. He embodied the Christmas spirit every day of his life. Spreading happiness, being generous, and loving with his whole heart, my father lived this message. Enjoy this beautiful time of year and remember that Jesus is the reason for the season. Merry Christmas!
Know more about Mesothelioma and how you can deal with it.
Daughter Reflects on the Memories With Her Father Lost to Mesothelioma
A few short weeks ago, my husband and I were blessed to become parents to a healthy and beautiful baby girl. It’s amazing the love that a parent feels for a child (and a child for a parent, for that matter). A mother and father will do anything they can to protect their little one. This made me think about the relationship I had with my Dad and how it impacted his journey with mesothelioma.
Dad and I had a very close relationship; I always knew that I could talk to him about anything. His kindness and amazing ability to give advice always amazed me. When he was diagnosed, we talked about the disease and what the next steps were. He talked about everything being in God’s hands and that we needed to put all our trust in Him. Once he was free of the disease, he told me that prior to this milestone, he felt awful. We discussed how his chemotherapy treatment made him feel – it seemed like we mulled everything over.
As difficult as it may seem, he even took the time to discuss his final wishes.
Now, I wonder if he was holding back to protect me. Did he really tell me everything, or did he keep a little in to keep me from worrying like I always do? Was he feeling as good as he said, or did he put on a braver face for my benefit? I guess these are questions that I will never know the answer to, but regardless, even if he did hold back, I know that it was done out of pure love.
I miss my Dad every single moment of the day, but I take comfort in knowing, and now understanding, the amount of love that he had for me and my family. I pray that I can be half the parent that he was… then, I’ll be doing pretty great.
Know more about Mesothelioma and how you can deal with it.
Gift Suggestions for Mesothelioma Patients
What do you get for the person who has everything? This is a common question, usually displayed in stores and commercials during the Christmas season. Some people ask the question in a different way: What do you get for the person who has mesothelioma?
This can be answered in a lot of different ways and it could depend on what they have going on in their lives as well. For someone who is currently undergoing chemotherapy or radiation treatments, it might be nice to give them a basket of foods that are easy on their stomach. Or maybe movies, books, or magazines to occupy them during their treatments, and while they are at home recuperating.
For someone who travels a lot for appointments, etc., maybe think of a nice travel bag or something to keep them busy during the trip. Comfortable clothing might also be something that they would enjoy. Religious gifts like prayer books or inspirational stories could also be a good idea. Homemade gifts are always wonderful and can become treasured keepsakes for years to come.
Whatever you decide, remember that your loved one is still the same person that they were before they were diagnosed. Even if you purchase some items that I suggested, remember the real person underneath the mesothelioma. Cater your gift to what they enjoy, not to the disease itself. If in doubt, you can always ask the mesothelioma warrior themselves what they would like, or talk to a close family member about it! They are sure to have some useful yet thoughtful ideas to share. Happy shopping!
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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