Diana M. Martin has been an adjunct professor in The Writing and Reading Center at Montgomery College in Rockville, MD, for over 20 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.

Diana M. Martin

It’s been seven years since I’ve been a caregiver to my husband who died from a rare form of liver cancer in 2015. In 2013, when he was diagnosed, people with this cancer had less than a two-year survival rate. That is bleak enough — but combining that with the threat of COVID-19 is daunting, if not unimaginable.

Since I belong to a widow/widower support group in my area, I’ve met people whose spouses did not succumb to cancer, but to COVID-19 instead. The last time they saw their spouse was when they dropped him or her off at the hospital. There were no final goodbyes. Unable to even hold a proper memorial service, these caregivers and their families are in immense pain.

Most people do not understand how isolating it is for this particular group of caregivers. Their layers of grief are complicated. Hearing them makes me grateful that my family and I did not have to deal with this.

Now that the world has had some time to live through the COVID-19 pandemic, it is my opinion that special programs and advocates need to be put in place so families and caregivers can receive the counseling and support they need.

I met one of my dearest friends through a caregiver support group. Although my husband passed, hers continue to struggle with stage 4 melanoma. I asked if she had any advice for families who are battling cancer and COVID-19 together.

She said that often the patients have friends and family that regularly check-in on them. The doctor confers with the patient on treatments. It’s unusual for people to check in on the caregiver. That is why she encourages caregivers to join a support group because those are the people that understand the constant roller coaster of emotions.

Preparing for scan day, especially when it falls around the holidays, is highly stressful. She said that her and her husband deal with it by getting an early appointment and then picking up the scan report in the afternoon. “We get the results before the doctor even sees them! No matter what the outcome, it is so much better than waiting days for the results.” It is also appreciated when friends check in with her on scan day. I try to ask her when that is, and I make a mental note of the date or put it on my calendar, so I remember to give her a call.

What also helps caregivers is when the person with cancer has a positive outlook. It is all about perspective and where you are in the journey. She told me, “My husband’s positive outlook on his therapy, his disease and his life in general has been the most important motivator for me. If he can be positive after all he has been through, I can try my best to keep going.”

Her advice in respect to COVID-19 is simple: get vaccinated. Although both her and her husband still ended up getting COVID-19 (even after being boosted), she believes that it was milder because they made that decision.

She said that in addition to vaccinations with the booster shot, people also need smart management of exposure risks. “We tend to do many activities outside. In the winter it’s more challenging, but it’s important to do a few lower risk activities like going to a store when its first opens, wearing masks of course,” she commented.

I see her gracefully and competently deal with cancer, aging parents, a brother with a disability and a myriad of other issues — all that have been complicated by COVID-19. I have been there, kind of. I remember that although I might have looked like I was handling everything on the outside, I was struggling every day on the inside. I remember feeling like I was on a railroad track and could see a train in the distance coming at me in full speed. Then it was just a matter of time.

Now, the train has passed, but I still can sense its presence in the lives of these caregivers who bless me in ways I could have never imagined.

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Having been a caregiver to my late husband who died from cancer, I know first-hand the difficulties of caregiving — not to mention what it must be like for those trying to do it during a worldwide pandemic.

Cancer Caregivers Need Extra Support During and After the COVID-19 Pandemic

I began this year by reflecting on my relationship with cancer. I credit my husband’s struggle and death in 2015 from bile duct cancer, and those who came before and after him, as integral in the development of who I am and how I function in this ever-changing world of surprises.

I try not to let this disease define who these people were, but it is the one commonality that seems to pop into my head when I remember them. They all lived with cancer. They died from it. It seems that most people have had someone they know experience — or experienced themselves — the complexity of life with cancer.

As part of my study to become a Reiki master, I learned about the ancient Japanese art of Kintsugi which is fixing broken pottery with gold or some other precious metal. It reminds us that something can break and yet, once repaired, is stronger and even more beautiful at the broken places. I used this practice for healing and found it to be helpful during these pandemic times, especially when everyone is aware of the fragility of life.

I wanted to share this practice with CURE® readers because I found it to be a meaningful and unique way to memorialize a loved one. I first started out by finding a piece of pottery (preferably a small bowl or vase) to break — nothing too big because the pieces should be not frustrating to glue back together. I put the pottery bowl in a cloth bag and dropped it from my knee to the cement outside.

Using gloves, I picked up the bag and felt the broken pieces inside. I prayed over them because they represented all that cancer had broken in my life. I then slowly placed them on a mat on my table. I also had pottery glue and some gold arts and crafts powder. I mixed the gold powder into the glue with some of my husband’s ashes. Then I slowly glued the first pieces together. Meticulously, one at a time, I added another piece. There were three large pieces and several tiny pieces. I used putty to seal the cracks that were too small and placed the rest of the shards in another small bag.

For a deeper experience, I then looked at where the breaks occurred and the glued pattern. I had a pattern of three gold lines that connected. I took that to represent myself, my husband and my son. One of the gold lines was separate from the top. I thought that this might symbolize my husband’s departure, and that though he was gone physically, he remained spiritually connected to us.

I like to run my fingers over the piece of pottery and feel the glued ridges, some of which were not perfectly placed. Sometimes I put a candle in the middle or write a note and put it in the bowl. I have the little bag of the shards also in the bowl.

This metaphor for healing was a powerful way to memorialize the person, not the cancer. It also brought some closure and hope for a new year still filled with not just uncertainty, but also with cracks that allow a glimmer of light to shine through.

A woman whose husband died from cancer explains how she shattered a piece of pottery and glued it back together, to represent the cracks of her life left by her loss and how her husband remains connected to her.

How an Ancient Japanese Art Technique Inspired My Healing Journey From Cancer

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.

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?

Diana M. Martin

Cancer Caregivers Need Extra Support During and After the COVID-19 Pandemic

How an Ancient Japanese Art Technique Inspired My Healing Journey From Cancer

Offsetting the Cost of Cancer

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

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