Quality of life
Quality of Life
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book . Psalm 139:15 – 16
As the treatment continues, the debilitating side effects become increasingly unbearable. Imagine undergoing treatment, and with each passing day, you feel progressively worse. Two years had passed, and this was my mother's firsthand account. My mother, tired and worn from her last hospitalization and stay in the nursing home, gazes into my eyes and softly utters, "I can't bear to continue with chemotherapy." When I looked at her, a wave of understanding washed over me, and I realized that I no longer had the desire to continue after this hospitalization. I thought I was losing her, and it was heart-wrenching to see her so fragile.
Upon contacting her oncologist to inform her, she swiftly agreed to refer her to hospice, displaying a strong commitment to providing the essential support. When I heard the word hospice, it felt like a sharp slap across my face. In the previous year, my mother had been hospitalized, her tired eyes filled with a mix of exhaustion and determination as she expressed her desire to no longer continue with chemotherapy. The Oconlogist suggested trying radiation and chemo pills as the next course of action. To combat her illness, my mother committed to a year of taking chemo pills and endured six weeks of radiation therapy.
Now, here we are a year later, and the Oncologist says, I agree with your mother, chemo is more harmful than it is good, so I can refer you to Hospice. I remember losing it, and feeling a sense of despair wash over me. In my experience, hospice is a somber setting where individuals reside, knowing that their time is limited. A heavy sense of despair washed over me, as if hope itself was slowly fading. From the start of my mother's diagnosis, I held onto hope, envisioning the moment she would triumphantly ring the bell, signaling her victory over cancer. However, that was not our story, instead, we find out earlier on that type of cancer that my mother type of cancer has to be managed, because of its aggressiveness.
As I ponder my next steps, which include getting my mother released from the rehab center, I do my research and find out that hospice will allow my mother to have a quality of life. Now, I can't help but think about how hospice will ensure her comfort and prioritize her quality of life at home. When a person is referred to hospice, they can expect to have all their care needs provided for. After making the difficult decision to refer my mother to hospice , I immediately reached out to the case worker. On the day of her release, my mother breaks down in tears, overjoyed to coming home, and I am instantly transported back to the image of her vulnerability.
Despite her weakness, my mother is excited to finally be back home with her family as we make the transition. In our cozy home, she is surrounded by the joyful presence of her two granddaughters, three great grandsons, a grand son in law, and her cherished favorite son-in-law, not to mention her beloved daughter, me. Over the course of the weeks, I witness my mother's transformation as she blossoms back to her vibrant, pre-sickness self. I can still vividly recall her first shower experience. Previously, both my daughter and I had to accompany her into the bathroom, but now she has grown more self-reliant and only requires one of us for assistance. Every week, the hospice nurse arrives and diligently examines her vitals, consistently discovering that everything is within the normal range.
Hospice has become an immense source of gratitude for me, as they enable me to care for my mother at home and provide her with daily support. The downside is the inability to observe internal happenings, i.e., what is the state of the cancer? During mom's treatments, she had quarterly evaluations to track her progress. It can be disheartening to be in the dark, not knowing what lies ahead. I have come to realize that the key to happiness and gratitude is appreciating the small pleasures that each day brings, such as the feel of warm sunlight on my skin. Every morning, I wake up with 2 choices, to appreciate what is good for that day, or worry about a tomorrow I cant see. I am grateful for every day I get to spend with my mom, even during the tough times. My goal is to live in the present moment and avoid dwelling on the past or worrying about the future. There is a saying that warns against dwelling on the past too much, as it can lead to depression. Similarly, fixating on the future can result in anxiety. Peace can only be found by being fully present in the moment.
I referenced Psalm 139:15-16 above to highlight the magnificence of God's creation – human beings. As the ultimate authority on life and death, He holds the final decision in all matters.
Switching gears a little, I am Inspired by this caregiver journey and motivated to delve into research and discover stories from fellow caregivers. Furthermore, I strive to gather valuable insights that can aid me in my personal caregiving experience. As a member of AARP, they always have fascinating stories. In 2019, they published an article that shed light on the celebrities who took on the role of caregivers, offering valuable insights for those in similar positions. Additionally, several individuals have taken the initiative to establish their own programs, providing support for caregivers
Let’s learn from public figures and celeberties who service as caregivers, what advice they have for caregivers
Katie Couric, 62
How you know her: The TV newswoman's biggest jobs were as cohost of NBC's Today show and anchor of the CBS Evening News
Her caregiver experience: She cared for her husband, Jay Monahan. He died in 1998 at age 42. Her sister died of pancreatic cancer in 2001.
Advice: "I wish I had sought out other caregivers and other patients to compare notes with and to find support from and just be able to vent to people or to cry with people,” she told Parade magazine. “I felt very isolated. You feel like you're in the cancer world versus the healthy world."
Giving to others: Couric, who speaks frequently about caregiving and the need for colorectal cancer screenings, cofounded Stand Up to Cancer in 2008 and recently partnered with Merck for the online project WithLoveMe.com to help cancer survivors and caregivers connect through sharing their stories.
Patrick Dempsey, 53
How you know him: The actor played neurosurgeon Derek “McDreamy” Shepherd in the hit TV series Grey's Anatomy.
His caregiver experience: Shuttling between work in Los Angeles and his hometown in Maine, Dempsey cared for his mother, Amanda Dempsey, after she was stricken with ovarian cancer in 1997. She died in 2014.
Advice: At the People v. Cancer conference in November in New York, Dempsey told attendees that one of the most important and gratifying roles for a caregiver is encouraging the family member to share life stories.
“You want to know about your mom, and your kids want to know about your journey and your childhood."
Giving to others: Dempsey founded the Patrick Dempsey Center for Cancer Hope and Healing, a holistic care facility in Lewiston and South Portland, Maine.
Sean Hayes, 49
How you know him: The actor, comedian and singer stars as Jack McFarland on the NBC sitcom Will & Grace.
His caregiver experience: Hayes was a primary caregiver for his mother, Mary Hayes, who suffered from Alzheimer's disease and died at 78 in 2018.
Advice: He urges caregivers to accept outside help and for others to offer it. “One caregiver might need a hand preparing meals for the week while another could use help running errands or just getting a short break to help them to recharge so they can be their best selves for the loved ones who are counting on them."
Giving to others: Hayes has teamed with Embracing Carers, an initiative to increase awareness, discussion and action about the needs of caregivers. One goal is to raise 1 million minutes of time to assist caregivers across the world.
Marg Helgenberger, 61
How you know her: The former CSI actress plays Judge Lisa Benner in All Rise and costarred in A Dog's Journey.
Her caregiver experience: While Helgenberger was studying at Northwestern University, her father was diagnosed with multiple sclerosis, and her mother was struggling with breast cancer. Helgenberger toggled between acting jobs and home to help her mother and brother care for her father, who rapidly declined.
Advice: "Burnout can happen, and it can sneak up on you,” Helgenberger told the Caregiving Club. “Whatever makes you happy, whether it's taking a walk with your dog or a hot soak in a tub or watching silly television, it's important that everyone take the time to do that."
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