by Dr. Amy Rothenberg (guest author)
When my sister, who was living with metastatic cancer, had a stroke, I grasped immediately that, with my background in patient care, I was the sibling most equipped to bring her to live in my home.
But there was no way I could fully fathom the enormity of the task—the labyrinth of household responsibilities, medical care, scheduling of in-home services, accessing resources, and providing every manner of physical, emotional, and material support.
I am grateful for the opportunity to have helped someone I love in her time of need.
My sister remained my greatest teacher, facing each new reality with acceptance and equanimity. But I know firsthand that for those caring for a loved one in treatment for cancer or any disabling or chronic condition, the sheer amount of work is overwhelming.
Here are my top recommendations, abbreviated from my 2022 book, You Finished Treatment, Now What? A Field Guide for Cancer Survivors, from the chapter “Caregivers as Survivors.”
Recommendations for Caregivers of Chronically Ill Loved Ones:
- Know that it will be difficult to sustain alone for the long term.
- Seek additional support early.
- Keep a list of friends, family, and neighbors who might help in a pinch.
- Ask for what you need when offered help. You might prefer a mowed lawn over a mystery meat casserole!
- Create a system for keeping track of all efforts: health care, finances,property, passwords, etc.
- Create online document files and calendars to share with others on your team.
- Schedule regular time off from caregiving to maintain some personal activities, such as exercise and time with friends.
- Keep up with your own health care, such as dental and doctor appointments.
- Have all documents in order, informed by the desires of the person receiving care:
- Advance directives, health care power of attorney, power of attorney for property, Do Not Resuscitate (DNR) forms, last will and testament.
- Consult an elder lawyer/accountant to create the right documentsfor your loved one’s estate.
- Bring in the palliative-care team for people living with a life-limiting illness.
- When the time comes, bring in hospice care, which focuses on quality oflife for people and their caregivers in the last phase of incurable illness and can provide tremendous support.
