Caregiving 101 @MD Anderson
My family is grateful for the loving support of family, friends, colleagues, and many strangers. Some of the best tips we received in this cancer journey were from Uber and Lyft drivers.
Many caregivers are children of patients. It’s difficult to begin journeys into the unknown. Life can blossom or be gone in the blink of an eye. A mid-career disruption also impacts every other aspect of your life, especially if you are coming a long way to Houston. Along with its world-class medical facilities, Houston’s accessibility is its greatest asset. There are flights to most parts of the world.
Nonetheless, Houston is a rugged town with marginal infrastructure and poor mass transit. The weather is muggy and it’s not walkable beyond parks and recreational areas. Air conditioning and hints of Southern hospitality keep hope alive. If you are into sports, Houston is a mecca. If you are into sustainability and music, Austin is just 3 hours away by car. The coasts are just 4 hours by flight. Getting away is the most important thing for visiting patients and caregivers who get occasional respite during treatment.
Cancer treatment alone won’t ensure the survival of your loved one. Everything else matters, too. MD Anderson sets up caregivers well to provide the best possible care. Here are some tips from my MD Anderson experience.
- Use the online and mobile version of MyChart: Make sure you set up text alerts to track updates. Review the billing like a hawk. Every treatment plan is unique. Changes are made frequently based on effectiveness and the need to reduce side effects. Have a daily check-in with your loved one to make sure that you are up to speed on appointments. Ask questions about the data in the weekly check-ups with oncologists and nurses.
- Sign up for peer-to-peer support at http://mycancerconnection.org. Cancer hits near every family and should never be fought alone. MD Anderson will connect you with survivors and fellow patients. The caregiver can learn best practices and optimize care.
- Meet with the assigned caseworker/social worker and fully leverage patient services. At MD Anderson, caseworkers function like customer success managers and work hard to improve the patient experience. The services offered to patients and caregivers are truly world-class and they can improve overall care if used wisely. The key is to lower the stress of the patient experience. Recommend checking-in every 2 weeks.
- Attend MD Anderson activities. The busy calendar of activities for patients and caregivers will reduce stress. From integrated medicine (yoga, meditation, nutrition, support groups ) to seminars featuring the latest treatment breakthroughs, your days in Houston will go by fast. You will make friends along the way. Recommend 3 to 4 times/week.
- Focus on the spiritual life. Houston offers houses of worship for every community. We discovered a meditation circle similar to the one we attended in the Bay area. Daily prayer and weekly spiritual fellowship strengthen the Faith.
- Free housing is available. The timeline for treatment tends to extend longer than anticipated. The bills pile on for those who have temporarily relocated. Connect with the MD Anderson caseworker and your place of worship to secure housing at lower costs.
- Use ‘MD Anderson’ discounts in Houston. There are discounts for rental cars, restaurants, and even gyms. The American Cancer Society has partnered with Lyft in Houston to provide free rides to patients and their caregivers. Recommend signing up for this.
- Stay apolitical when visiting MD Anderson. Folks from all walks of life are fighting the same battle. I lean towards the Left. The philanthropists who helped build MD Anderson lean toward the Right. Avoid making statements using clothing.
- Watch movies, read books, and skip the news. Too much information from social media creates unwanted stress. Stress can influence cancer development.
- Nutrition is key. MD Anderson offers cooking classes. A cancer-fighting diet is hard to achieve. At the same time, eating something is better than eating nothing. There has never been a better time to go vegan. Recommend at least 6 small meals/day for your loved one.
- Stay connected to your network and remain current with your professional skills. Life may not return to normal, but you will have to resume where you left off.