Diana M. Martin

Diana M. Martin has been an adjunct professor in The Writing and Reading Center at Montgomery College in Rockville, MD, for over 15 years. She has a MFA in Creative Nonfiction and has published articles in the areas of parenting, health and cultural arts. When her husband lost his battle with cancer of unknown primary, later identified as bile duct cancer, she became the sole caregiver for their adult son, Alex, who is autistic.

Whether it is you or a close family member who receives the diagnosis, eventually most people wonder: 

 It's been almost four years since my husband passed away, and I still have moments of insecurity when it comes to me being the sole breadwinner. We survived on his salary and health insurance while I worked part time and cared for our son with autism. While he was in treatment, all of that changed. 

After the diagnosis, the first financial step we took was to notify his place of employment. Luckily for us, he had saved up vacation and sick leave. The organization he worked for had a program where people could donate their leave to help others in need. We took advantage of the program. Keeping him on the payroll was essential to our survival. His supervisor also allowed him to work from home when he could. This were blessings that I know are not available to everyone. And even with this good fortune, I knew it wouldn't be enough to keep us afloat.

The next step I took was to contact the social worker affiliated with the oncology practice. This was a free service that was offered to patients. Most oncology practices have someone who can help patients not only with the emotional strain, but with resources to ease the financial stress that often comes with such a devastating diagnosis. I made an appointment with that person and told her that we needed help. She signed us up for a free meal service that helped families in the county whose pay was under a certain amount. Since I had taken time off from my job to care for my husband, we qualified for that program. I had never thought that we would be in this position, but I am glad that I swallowed my pride and spoke up. This program was a lifesaver.

Then she provided me with a list of local resources to call. Some provided small grants, others provided gas cards, free transportation, and stipends for medication. I had more luck with local organizations that were familiar with the cancer treatment center and were already serving families in need there. After joining a support group, one of the members offered to create a GoFundMe page for us. We raised almost $20,000 through the efforts of family and friends.

After talking to some of my colleagues where I worked, I was able to apply for an assistance grant through my workplace and friends at my husband's job also donated money. Because our son had autism, I contacted the local and state autism organizations and received additional grants. I told all our creditors that we were in financial distress. Some lowered or deferred payments. In addition, we took out a "no health questions asked" inexpensive short-term life insurance policy for $2,000 that ended up paying for the funeral.

I was raised to keep family matters private. However, one of the best decisions I made during this time was to not be embarrassed to ask for help. It was humbling and uncomfortable. I was not even used to asking people to pray for us, but I did. And people did so much more. What I discovered is that in times of real need, even strangers notice and are willing to lend a hand. You just need to speak loud enough for them to hear.

Almost four years after my husband's death, I am still surviving financially due to the grace of God and some of these decisions. I've had to rely on life insurance and personal savings. I have had some health setbacks that I know I will have to get through on my own. I worry about my son's future after I am gone and have created a special needs trust for him. I also belong to Widowcare, an organization that has helped me deal with these issues and meet other widows and widowers who face the same problems. I am gradually coming out of what was once a bleak financial future to face a new reality that is neither better nor worse than the old one.

Articles

There are resources available to help you cope with financial stress of cancer, whether it's you or a loved one facing the disease.

Offsetting the Cost of Cancer

 lacked the 24 votes it needed to pass in the Senate. With a tie vote of 23 to 23, this narrow defeat, though, is not really a victory. Versions of similar bills like it are being considered in other states. It seems that society has decided to change the role of end-of-life care or eliminate it all together.

Palliative care and hospice are part of the end-of-life continuum of care. It is my understanding that hospice care varies depending on the organization that is chosen to provide the care. In Maryland, we decided to go with Jewish Social Service Agency Hospice (JSSA) because our son with autism had a long-term relationship with this organization, which served as a case manager for autism services. The NIH hospice coordinator suggested that we choose Montgomery Hospice because they had a relationship with that organization. A noticeable difference was that JSSA Hospice did not have a facility which Dan could stay in if he did not want to die at home or if his medical needs could not be managed at home. Instead, the organization contracted with a nursing home. In contrast, Montgomery Hospice has Casey House, the only acute care, inpatient, all-hospice facility in Montgomery County. 

Taking care of someone at home during the end stages of life is not possible for everyone. Luckily, I was in good health and Dan had a long-term care policy to pay for overnight nursing staff so I could get some sleep. It is not a seamless transition from being in active treatment to entering hospice. It reminded me of buying a house. Not only did I have numerous papers to review and sign, I had to do it twice: one time for JSSA and one time for the brief two weeks he spent in the nursing facility before we decided to bring him home. Luckily, my parents were there to support me because I was the one making all the appointments and having to deal with hospice and nursing staff changes, let alone the demands of taking care of a teen with autism. The insurance papers were numerous and confusing; the hospice binder daunting.

 Many people were involved from administrators to case managers to nurses to aides to doctors (who were hard to get in contact with). At one point, the morphine machine stopped running and I had to depend on myself, my son's aide and the company that sold the machine to figure out how to get it to work again because hospice staff would not be able to get to the house for hours. Then there were misunderstandings in communication. And over 20 pills to be administered.

Also, organ donation had to be coordinated. Reflecting on that today, I feel as if I was doing the end of life care and the others were assisting me instead of the other way around. However, I could not have provided quality care without the team. This process can make the end of life a little less peaceful, not to mention the challenges of not knowing when the person will die. Death, by all means, is definitely not convenient.

With bills like the End of Life Option still being considered by other states, I wonder what will become of end-of-life care? Will hospice organizations eventually be in charge of working with the patient and doctor to get the medication needed to end one's life? Or will this mean that less people will enter hospice? Maybe end-of-life care needs to be re-defined. If this bill had been the law in 2015, and Dan had wanted to end his life that way, he would not have spent the last two weeks of his life in hospice. The close vote in the Senate tells me that I am not alone in doubting that this bill is the answer we as a society are looking for.

Though narrowly defeated in the Maryland Senate, versions of similar bills are being considered in other states. If these bills pass, what will become of end-of-life care?

The End of Life Option Act in Maryland Narrowly Defeated in the Senate

Earlier in March, the Maryland House of Delegates approved the “End-of-Life Option Act,” which will now go to the state Senate. As a Maryland resident, this bill strikes a troubling chord for me for several reasons. The first one being that my husband died of cholangiocarcinoma in 2015, a rare form of bile duct cancer. A staunch supporter of Catholicism and a head injury survivor, he knew that we as individuals are not infallible. As a young boy he was in a car accident which resulted in him being thrown from the back of a pick-up truck into a ditch for several hours before rescuers found him in rural South Dakota. He was in a coma for many months. He often recounted to me that he could hear doctors and family members discuss his prognosis. They could have taken him off of life support, but they chose not to. He eventually woke up, and after a long, difficult rehabilitation, went on to graduate from college.

Years later, this same man would have a child with autism who was self-injurious and developed a seizure disorder. Then he would meet his final challenge: CANCER. Two weeks before he died, he asked me to call our hospice coordinator.  At that point he could barely talk and was unable to eat or drink. Panicked, I called hospice, which decided to start the procedure of attaching him to a morphine drip. After a week or so of this, I asked him to let go because I could not bear to see him suffer anymore. One hour later, he died. To this day, it is hard to get the hum of the morphine machine out of my head. In my prior blogs I have disclosed that I suffer from post-traumatic stress disorder from this experience.

Did he live a good life? Did he die a good death? My answer is yes to both questions. We were lucky in that he had good pain control and a strong faith that pulled us through. I've talked to nurses who have told me that some of their patients are not as lucky. Some seize constantly and there is no medication to help them. Some have reached their pain threshold and there is nothing else left to do. Others do not want to be a burden to their family or lose their dignity because they now depend on someone for basic needs. Some family members have cried out in agony because no one will listen. There is no quality of life, and the list goes on.

I don't have to tell my readers that life isn't a pretty package tied up with a bow. I hear all of you that are for this bill. I've heard the testimony, listened to podcasts and read the articles. However, I lean on the side of "what if?"

I have a fear that if this bill passes, then it will be abused by well-meaning people. Eventually the legal guardians of those who can't decide for themselves will have the power to end their loved one's life. People with disabilities, the elderly and those with mental illness are the most vulnerable. There has to be other solutions: better end of life care, expanding the understanding and the role of hospice, more affordable treatments, research and development of better pain medicine, to name a few. But in the meantime, what do we do? It's a question that no one takes lightly. Perhaps it makes us want to settle for anything without considering the outcomes just to ease our pain. This is human nature. We are not perfect people.

I understand that no one wants to be a burden to anyone. In my opinion, it isn't a burden to take care of someone. It is love. It was excruciatingly difficult—financially, emotionally and physically&mdash;taking care of my husband and son. After Dan died, I ended up in the hospital. But their life story&mdash;all of it&mdash;deserves to be played out, not cut short.

I would not have met Dan if his parents had decided to take him off of life support. He would not have been the compassionate, brave father to a son who has brightened the lives of so many despite his disability. Have they suffered? Yes, more than you or I can comprehend. What I have learned is that there is grace in both living and dying that comes from a power greater than myself. I call that faith. It is the reason why I ask the question: "What if?"

A caregiver's view on why this bill needs careful consideration.

"What If?" A Question Those Supporting the Maryland End-of-Life Option Bill Need to Ask

Someone gave me a mandala kit. What does this have to do with cancer or being a recovering and/or compulsive caregiver? I had no idea.

I wondered how my husband, who didn't see himself as an artist, would have reacted to me offering him up a rock, a pattern and some paint to use in between nauseous trips to the bathroom. How could he have possibly done this art project? Then I remember how he liked to chip away at the grout that was on the mosaic tables my son and I made. His goal was to uncover each tiny piece of glass or stone hidden by the black or white grout that held them all together. Doing this seemed oddly satisfying to him.

Since what we do determines so much of who we are, it can be depressing not to have a purpose. This led me to the question: How does someone with cancer define his or her purpose in the last days of life? When I was with Dan during his final weeks three years ago, my purpose was to care for him. I suppose his purpose was to figure out how leave this earth gracefully.

Today my purpose has shifted. I look at the mandala kit. It seems complicated. The dots within circles and dots within dots start to give me a headache. Perhaps it is a subtle hint for me to slow down. I don't want to appear unthankful, so I watch a YouTube video on how to turn this very plain, earthy stone into a work of art worthy of being a gift. 

 I think. Yet the final product looks so complex.

Upon doing some more Google searches for tutorials, I discovered that “mandala” is Sanskrit for "circle" and has a long history of being used for visual meditation in Eastern cultures around the world. According to an article in 

, "...Carl Jung introduced mandalas to Westerners, encouraging patients to draw circular patterns as a means of unlocking their unconscious thoughts, dreams and desires. He believed the symbols represented the totality of the self."

I learned that painting or coloring mandalas can be a therapeutic way to reflect and create something beautiful that can be enjoyed forever. For current cancer patients and their caregivers, it can also be a soothing way to contemplate the end of life when talking about it is just too hard. This process activates the senses of sight and touch and encourages an inner conversation that may or may not be shared.

So, I decided to try it out. I found the center of the rock and made my first silver dot. I followed the tutorial until I made a mistake by spacing the dots too close. Then I went rogue and the result was a "mandala-like" stone which looked like it had a bad case of the chicken pox. I knew that my husband would laugh at this.

Self-realization or finding one's purpose doesn't have to come from doing some great deed that leaves a legacy. For former caregivers like myself, painting mandalas can be a mindful way to slow down and listen to that inner voice that was put on the back burner.

My attempt at painting a mandala reminded me of the first art project our son did that Dan and I so proudly hung on the refrigerator. If the purpose of painting this imperfect mandala was to evoke that sweet memory, then maybe it could help people with cancer and their caregivers do the same.

Mandalas can help people with cancer and their caregivers find purpose.

Author | Diana M. Martin

Offsetting the Cost of Cancer

The End of Life Option Act in Maryland Narrowly Defeated in the Senate

"What If?" A Question Those Supporting the Maryland End-of-Life Option Bill Need to Ask

A Widow Explores the Power of Mandalas