Reflections from Caring for a Parent with a Terminal Illness: Finding Resources and a Support System, a Daughter's Journey
Life can change in just minutes, presenting new challenges and adversities every day. Today’s woman dreamer, Pratima Penumarthy, reflects on her journey of caring for her mother, who faced a battle with terminal cancer. She shares the lessons she learned, how her family’s lives changed, and the resources and support that kept her strong and pushed her through this journey. Pratima’s story is a true inspiration , especially for those taking care of family and friends during tough health times. Read her story below.
1) You worked so hard to have your elderly parents come and stay with you in Boston. It was a two-year process in 2017. However unfortunately, your mom was diagnosed with terminal cancer in 2019. How did that impact your family?
After my mother was diagnosed with Colon and aggressive Gall bladder cancer on January 2019, I had to set up Pet Scan and biopsy to confirm her diagnosis, but I did tell mom that this was basically just a formality. Obviously, I was absolutely devastated about this news. The cancer is unfortunately inoperable, and I didn’t know how long she had left, but I knew I was talking months rather than years. There was so much complex feelings and lifestyle changes in our lives. Because mom was 77 years old and was weak, her oncologist didn’t prefer her undergoing chemotherapies and she too resisted. Understanding the potential changes in the way we relate to our specific family member did help us take steps to grow healthy, mutually supportive relationships during this challenging time. Of course, it added responsibilities that became sometimes overwhelming and even lead to feelings of resentment. Even though, I used to feel sometimes saddened, and even frustrated, I always wanted her to be emotionally stronger and she actually was really calm and showed amazing strength at every moment in her journey.
2) How did you and your family handle Such a tough situation? Did you have any support system available?
“As an only child who took most of the parent responsibilities, initially I didn’t have anyone around me to speak to who would understand my situation. But I was very fortunate to have very insightful spouse and children who simply listened and asked questions and seemed genuinely interested and concerned about what I had to say, about either Mom’s treatment or were always next to me as pillars of strength.”
Mom’s diagnosis changed the whole dynamic of our family. As an only child who took most of the parent responsibilities, initially I didn’t have anyone around me to speak to who would understand my situation. I couldn’t share my fears much with my dad too as he is a post stroke patient and could get too emotional. I held back how I was feeling for fear that seeing me upset or scared would make mother feel worse. But I was very fortunate to have very insightful spouse and children who simply listened and asked questions and seemed genuinely interested and concerned about what I had to say, about either Mom’s treatment or were always next to me as pillars of strength. My biggest support system was and is my family. I had joined many support groups which gave me more ideas to getting resources for mom. A cancer diagnosis can feel like swimming in an endless stream of appointments and treatments. I made sure to time outside of these to create some good memories as a family. We as family planned to spend time together, even just watching a movie at home.
3) What were some of the important life lessons that you learned in that timeframe? In some ways it was it also give you precious time with your mom.
“My parents since I was young had always advocated for me. Now that the roles are reversed, I made it a point to do that same for them. I strongly believe that if you are not happy with the level of care your loved ones getting, speak up.”
While my mother fought cancer bravely, I fought fear. In the end, cancer changed my entire outlook on life and my relationship with her. The biggest lesson I learnt for this it to be active and assertive. When someone we truly love and care is very sick, everyone in the family should take an active and assertive role in their care. I was once told that if you’re lucky, at some point in your life, the parental roles get reversed and the children begin to care for their parents as their parents once did for them. That shift started a bit quicker for me with my mom’s illness. My parents since I was young had always advocated for me. Now that the roles are reversed, I made it a point to do that same for them. I strongly believe that if you are not happy with the level of care your loved ones getting, speak up. I made sure that the hospital staff or hospice staff is meeting all her needs. Asked many questions. While I was in the hospital with her, I never let a doctor, nurse or technician do anything to my mother without them first explaining it to me. Though I don’t speak medical jargon, I always requested the explanation in understandable terms and made sure that it was my job to advocate for my mother to ensure that she got the best care. I’m so proud of my mother and all that she and the lessons her cancer taught me — life lessons of love, strength, gratitude, and humility. Big moments in your life teach you life lessons.
4) What is your advice for people who are in similar situation when the parents come from another country to live with them in USA ?
“We as caretakers need to build a team. The truth is caregiving doesn’t have to be a one-person, all-or-nothing role and getting help is not failing–sometimes it’s the most sensible thing to do.”
Caring for someone in our lives is ongoing and the situation has the potential to change rapidly. Even young, healthy people can sometimes find themselves in situations they could never have imagined. Without a plan, the result can be real chaos. It is very important to try to recognize the powerful emotions at play and handle the situation as sensitively as possible. We as caretakers need to build a team. The truth is caregiving doesn’t have to be a one-person, all-or-nothing role and getting help is not failing–sometimes it’s the most sensible thing to do. One should ask to share the load with family and friends. Offer tasks they feel comfortable with, and regularly share details of your loved one’s ongoing needs to get everyone on board. There might be situations where other family members can’t, or won’t, help. Another option should be is to bring in professional caregivers who can develop a personal relationship with the person you care for. Professional caregivers don’t have to replace your own care–they can simply add an extra pair of hands and work as part of your team.
“Online support networks can also be a lifesaver, especially if one doesn’t have friends or family members who can relate. Honestly, thanks to the development of modern technology, care giving communities are always just a few clicks away on a tablet or smartphone”
Online support networks can also be a lifesaver, especially if one doesn’t have friends or family members who can relate. Honestly, thanks to the development of modern technology, care giving communities are always just a few clicks away on a tablet or smartphone. I would tell everyone who are in the similar situation that I faced, that do not ever be afraid to ask for help (whether practical or emotional) and please try not to beat yourself up if you think things have gone wrong. You should remember that are doing an incredible thing for someone else. It may be a tough journey, but you will never regret that you made the decision to care for someone. Do appreciate yourself and celebrate yourself, remembering that you are strong. Also, there are wonderful Hospice and palliative care team members I every state in USA that lend their support and services in a variety of ways and may be able to help each one of you create a life story for your loved one.
Also always be informed. Learn about your parent’s diagnosis and treatment so you have a sense of what to expect. Speak with your parent’s doctor or nurse if you have any concerns or questions. Take constant notes or ask your doctor if you can record him or her during appointments. He or she can also recommend resources for learning more. Find out what other supports (such as an oncology social worker, oncology nurse, or pharmacist) are available to you and your parent
5) You have formed a support group also for people in a similar situation can you share some information about that.
Taking good care of yourself is an important part of being a caregiver for our parents. This can improve your quality of life and help you to be better equipped to handle your parenting responsibilities. When I found out that many in USA from Indian origin, had good number of questions about how to go about finding resources for their elderly parents, or how to find organizations that could help them to find good caretakers for their parents and how to approach them, I decided to state a support group called Caring for aging parents(Indian-American way).It’s a group where we come together to support one another through our individual journey of caretaking for our elderly loved ones. Our support group tries to identify the people in your life whom you can turn to when you need support. These people may include your spouse, relatives, friends, and members of your parent’s health care team. Support groups like the one I started provides a safe and supportive environment for sharing your feelings with others who are also caring for a parent with or without cancer. One of the main benefits of caregiver support groups like Caring for aging parents (Indian- American Way) is that it provides much-needed social support. Support group members validate each other’s experiences. It’s a relief to know that what we’re going through is normal and that you’re not the only one with these feelings – negative or positive. This Facebook group can truly help you set appropriate limits in how you care for your elderly loved one and consider the impact of taking on continuing care-giving responsibilities.