If a Loved One Has Mesothelioma, the Family Will Need Money.

My mother had just gone through several months of cancer treatment when a record-breaking hurricane season hit the Gulf Coast. As we heard stories of rescue and tragedy, she told me she understood how the survivors felt. She had never experienced a hurricane, but she had lived with cancer. She knew how it felt to live in an ongoing state of emergency.

When the unexpected happens, we adjust the way we live until life feels normal again. It may take a few days or weeks. If a serious illness is involved, it may take several months or years. When the winds settle, sometimes life has changed forever. We can’t plan for everything. We can only do our best to prepare.

This is especially true when it comes to expenses related to serious illnesses. You may prepare for the unexpected by saving for a rainy day or buying insurance. Those are smart moves, but it’s still hard to plan for every cost.

Cancer Is Expensive to Treat

My mom’s cancer was very aggressive. So was her treatment. She had to stop working as soon as she was diagnosed. She had long-term disability insurance to replace part of her income while she couldn’t work. Fortunately, her health insurance covered most of her medical expenses.

We still spent thousands of dollars on related, out-of-pocket expenses within a few months of her diagnosis.

Travel and housing were big expenses. My mother had to travel hours from home to see her doctors. A single appointment usually meant leaving home early and getting back late. The distance was too far for her to travel for almost daily radiation treatments.

The medical center provided cheap, temporary housing for families like ours, but there were only a few units and no vacancies. My parents ended up moving into a nearby extended stay hotel during radiation treatment. They usually ate from their garden during the summer. But that summer, they paid for food and incidentals in a city miles from home and with a much higher cost of living.

Meanwhile, they lost income. My dad was a self-employed logger. He couldn’t work while they were away. No work meant no income.

My mom ran out of paid sick and vacation days and had to take unpaid leave from work. For a few months, her disability insurance payment was their main support.

But they managed.

When they were home, my dad tried to work as much as possible until my mom’s next appointment. She was too weak to care for herself and the household. When family and friends couldn’t volunteer, my dad paid someone to help at home and run errands.

There was always some unexpected expense.

Handling the Unexpected

Almost as soon as her treatments ended, my mom’s employer let her go because she had run out of leave. When her job ended, so did her employer’s contribution to her health insurance premium. She had to pay the entire premium out of her own pocket to keep coverage for her treatments and medicine. Her new health insurance payment ate into most of her disability income.

As my mom’s health continued to fade, my dad quietly worried about being able to keep her comfortable in her last days. He realized long before everyone else, except maybe my mom, that she would not get better.

As his heart broke, bills piled in every day. The health insurance company even started calling us to complain about the cost of pain medicine prescribed by the doctor. My dad was under a huge amount of pressure.

Family helped with expenses. My parents also used their modest savings to pay down debt that built up during my mom’s illness. I moved in to help care for both of them. Fortunately, they never had to worry about losing their home like many families in similar situations. My mom never had to go without medicine.

Still, the situation was stressful. My father was raised during the Depression. He was taught to work hard without complaints. I’m sure he never told us just how tight money was.

Dad’s a strong man, but more than a year of adapting to one emergency after another can shake anyone. For months, he had managed a three-ring circus. His wife was dying in the center ring. Financial issues and related crises carried on in the side rings.

He had always been very healthy, but stress and grief finally took a toll soon after my mom died.

One day the artery leading from his heart suddenly tore. It almost killed him. It’s a miracle he survived, but he was permanently disabled. It was hard watching him lose almost everything that was important to him.

I doubt my parents could have prepared any better. As much as they planned, they couldn’t avoid some financial worries. It’s nearly impossible to prepare 100 percent for a crisis. You do the best you can.

If you have mesothelioma, asbestosis or lung cancer caused by asbestos exposure, you may need even more aggressive treatment than my mom did. You may have to travel much farther to find specialists to help you. Your treatment will likely be more expensive.

Stress and expenses could threaten your family’s well-being for a long time to come. But you may also have financial options that weren’t available to my family and others with serious illnesses.

If your suffering was caused by asbestos exposure, a qualified asbestos attorney can help explain your options and possibly hold the company responsible for your illness accountable. You may be eligible for compensation that can throw your family a lifeline when you need it most.

The best thing you can do to prepare for the unexpected may be contacting an asbestos attorney.

Picking Your Support Team After a Mesothelioma Diagnosis

Serious illnesses like asbestos-related diseases create many needs and concerns. One of the biggest needs is this: picking teammates to stand by you.

Find your advocates. Find your helpers.

An advocate is anyone who fights for or serves another person’s interests. In this case, those interests can be complex (medical care and financial affairs) and they can be mundane (cooking healthy meals, managing stress, making a home comfortable and accessible). There are plenty of jobs to fill.

Finding Your Advocates

You will want more than one advocate because each advocate can serve a different need.

My mom was her own best advocate. This was never more apparent than when she was diagnosed with stomach cancer. Soon after her diagnosis, she chose her own team of advocates.

Former mesothelioma caregiver Lorraine Kember discusses how her husband’s medical team made a difference in their lives.

My sisters and other relatives had nursing backgrounds, so they gave her advice on making her home more comfortable and communicating with her medical team. I am a lawyer and worked on financial matters for many years, so I helped with her legal and business affairs. My dad did some of everything, including driving her to and from medical appointments. My mom’s spiritual life was very important to her, so friends and neighbors visited to pray and read scriptures when she was too sick to go to church.

Here are some common types of advocates for people with asbestos-related diseases:

  • Health Care Providers: Finding doctors and other health-care professionals you trust will likely be one of the first things you do following a diagnosis. Few doctors have experience treating asbestos-related diseases such as mesothelioma. The free resources available Asbestos.com can help you locate a specialist.
  • Loved Ones: You may not think of family members and other loved ones as team members. In reality, they’re the most important players. You will depend on them to help you make decisions and take care of you as your illness and treatments progress.
  • Legal Advocates: Yes, lawyers. They’re also advocates. Their work can have a big impact on the quality of your medical care and your family’s quality of life. Because you will likely be unable to work while you are ill, it can become difficult for your family to pay everyday living expenses and medical bills. That’s where your attorney can help you. In addition to their knowledge of asbestos-related diseases like mesothelioma, lawyers also have contacts and resources that can help you deal with a number of other legal issues that may come up because of your illness.

Take your time, and pick good advocates. My mother always knew how to get things done and was often the “go-to” person in our family and community. She taught me that a good advocate:

  • Communicates clearly with the person she is helping;
  • Takes time to observe and understand the needs of the person she is helping; and
  • Knows when and whom to ask for help.

Although you may share some of my mom’s needs, you also have your own unique needs. Whether you are choosing your own advocate or finding support for a loved one, my mom’s experience offers some useful tips:

  • Choose the right advocate for each job. My mom asked people to do different things based on their skills and experience. Since mesothelioma and other asbestos-related diseases are so unique, some of your advocates will need special experience. Not every doctor can treat these diseases. Not every lawyer has experience with asbestos lawsuits. The resources available at Asbestos.com can help you find advocates who can assist you.
  • No one can do it all. My dad was my mom’s primary caregiver for a long time and also worked as a logger to support them, but he couldn’t do everything alone. Eventually, I moved in with my parents for a while to help him care for my mom and their home. Sometimes your advocates need to shift duties.
  • Let others help. My mom made many wise decisions, but her wisest decision was allowing the people she trusted help her when she needed them most.

Creating Stories of Hope – Caring for A Loved One

Lately, I’ve spent a lot of time giving information to cancer patients and their caregivers. It started a few months ago when my aunt’s breast cancer returned after a brief remission. I wanted to help her and her young daughters.

Recently, I was asked to help more people by starting this blog for mesothelioma patients and their caregivers. I haven’t thought about cancer this much since my mom battled stomach cancer a few years ago.

It wasn’t easy then, and it’s not easy now.

Defining Hope Amid Loss

Knowing what information to share isn’t the hard part. Between my own experiences and the Peterson Firm’s resources, I have a lot of information to share. So, why have I written and discarded so many blog entries before writing this one? I didn’t want you to know that my family’s own story had a sad ending.

Five years ago, I sat by mom’s side and watched her die.

My aunt also died a couple of weeks ago. I didn’t see her in the end because I stayed away from my family for the same reason I initially didn’t want to tell you that my mom died: I feared that no matter how useful my information was, the fact that it came from me — a caregiver whose loved one had died — would just sadden you and take away your hope.

In reality, though, our cancer story was full of hope. It has taken a lot of soul-searching to remember that how our story ended isn’t as important as what happened after it began.

Finding a Silver Lining

Soon after my mom was diagnosed, she started getting her affairs in order. She didn’t know how the story would end 18 months later, but she knew she wanted to be as comfortable as possible and spend whatever time she had left with her loved ones. We may not have realized it at the moment, but that decision would help her enjoy more time with us instead of worrying about what would happen to us after she was gone.

It was difficult to talk about how we would pay medical bills, about the type of care she wanted and even about her final wishes, but we supported her and had the difficult conversations early.

It gave her peace of mind knowing what she would need after surgery, during radiation and chemotherapy, and when we ran out of medical options. As I look back, I realize that every moment we spent on those details bought us days of simply holding her hand, looking into her eyes and, yes, even laughing and smiling with her.

If you are reading this, you or a loved one likely received a diagnosis that left you with little hope. Although I am a caregiver whose loved one died, I can honestly say there is hope. No matter how your own story begins and ends, there is hope that you can have some peace of mind during the days in between.

Whenever I wonder if I could have done more for my mother, I remember what she told me the night before she died. She had been very quiet that day, but that night she made a point to tell me that we had made her comfortable. She said this despite many months of physical suffering. That was our last conversation.

We hope that this blog will be the start of many new conversations. We will offer legal information and lots of other resources to help with your general wellness and peace of mind. We also hope that these conversations will help you and your loved ones live as comfortable as possible in the days ahead.