Caregiving. Who’s To Say What It Is?

The American Cancer Society’s descriptions of caregiving tasks were, I recently found, little more than what one might do for someone with the flu. This discrepancy made me reexamine my own caregiving tasks when caring for my wife, who eventually died from terminal brain cancer.

For example, at cancer.org the Society provided two lists of cancer caregiver responsibilities:

Under “Being a Caregiver – What does a caregiver do?”
• Help feed, dress, and bathe the patient.
• Make sure the patient eats and gets rest.
• See that the patient takes medicines as they were told to.
• Keep track of appointments.
• Take care of insurance problems.
• Drive the patient.
• Help with other family members’ needs.
• Talk to the health care team about how the patient is doing.
• Help the patient live as normal a life as possible.

At “What You Need to Know as a Cancer Caregiver” to help a person with cancer:
• Shop for and prepare food.
• Help eat.
• Take medicines.
• Use the bathroom.
• Clean house and do laundry.
• Pay bills.
• Find emotional support.
• Get to and from doctor’s appointments, tests, and treatments.
• Manage medical problems at home.
• Coordinate cancer care.
• Decide when to seek health care or see a doctor for new problems.

Well, I supposed, there are many types of cancer and one form of caregiving may not fit all.

Brain cancer might be different, I thought. So I looked at the American Brain Tumor Association website at abta.org. There, if you click on Caregiving Information you are linked to the Caregiver Action Network (CAN), which offers links to the “Orientation to Caregiving” handbook published by the University of California/San Francisco (UCSF) — more about the handbook later — and to the following “10 Tips for Family Caregivers”:
• Seek support from other caregivers. You are not alone.
• Take care of your own health so that you can be strong enough to take care of your loved one.
• Accept offers of help and suggest specific things people can do to help you.
• Learn how to communicate effectively with doctors.
• Caregiving is hard work so take respite breaks often.
• Watch out for signs of depression and don’t delay in getting professional help when you need it.
• Be open to new technologies that can help you care for your loved one.
• Organize medical information so it’s up to date and easy to find.
• Make sure legal documents are in order.
• Give yourself credit for doing the best you can in one of the toughest jobs there is.

At least the cancer.org lists were directed at helping the patient, but this brain tumor list offered nothing specific for the patient.

I was a brain cancer caregiver from August 2009 to February 2011. I was my afflicted wife’s sole caregiver for 531 days, from diagnosis to her death at home from stage IV glioblastoma brain cancer. I certainly knew what being a brain cancer caregiver meant and so I’ve listed all of the caregiving tasks I can remember:
• Evaluated community healthcare services.
• Researched brain cancer treatment and care.
• Studied medications and side effects online and in pharmacy literature.
• Critiqued treatment procedures and plans.
• Communicated with family, friends and colleagues about patient’s treatment and condition.
• Negotiated employment and healthcare benefits with employer’s Human Resources and management.
• Filed appeals for withheld health insurance benefits.
• Made a formal complaint about substandard medical care.
• Scheduled imaging and lab appointments.
• Dismissed a negligent doctor.
• Discharged an infusion home care aid.
• Selected, tested and exchanged home healthcare equipment.
• Installed a wheelchair ramp.
• Received training in home infusion treatment.
• Reviewed and summarized brain tumor and edema imaging history.
• Reconciled and paid medical bills for 18 months.
• Disputed pharmacy bills and solved shipment delays.
• Shopped for medical treatment at travel destinations.
• Persuaded a reluctant hematology MD to accept patient.
• Arbitrated treatment disputes between MD, hospital pharmacy and infusion center.
• Cajoled insurance case manager to continue managing our case beyond her assigned time.
• Persuaded pharmacists to advance medications pending approval of prescription.
• Reorganized MD’s vague and open-ended treatment plan.
• Sought patient advocate’s assistance with care and treatment (talked to 22 individuals, no luck).
• Investigated Medicare, Medicaid, private health insurance, Social Security, disability, ordinary retirement, employee rights, patient rights, public assistance, treatment alternatives, and so on.
• Sold current home, bought affordable home.
• Moved household.
• Audited medications daily for dosage, side effects and consumption, and report weekly.
• Monitored patient’s condition daily and noted changes, and reported significant findings.
• Attended all treatment appoints, listened closely, took notes, asked questions, summarized discussion and stood in patient because her aphasia sometime prevented her from speaking or understanding speech.
• Recorded patient’s daily food and fluid consumption, mood, sleep, exercise and general condition.
• Assisted with patient’s employment duties where feasible – answering and making phone calls, writing reports and correspondence, reading professional and work literature, word processing, proof reading, editing and preparing for meetings.
• In the last two months of an 18-month illness, when the patient could not walk, lifted her in and out of bed, bath, wheel chair, walker and car, and on and off toilet, dining chair and sofa.

That’s an impressive list, but I wondered whether my list was an anomaly compared to someone else’s list. I asked a young woman with three children who lost her husband to glioblastoma brain cancer to draft a caregiver’s task list based on her experience. The following list was the result:
• Attended doctors’ appointments to take notes, ask questions, record conversations and generally handle communications.
• Asked the tough questions about how to get the best care and what to expect next.
• Handled all paperwork the doctor’s office required because patient was repeatedly “ticked off” that every medical office’s first question was about payment.
• Surveyed what medical equipment was needed and available for patient’s safety and mobility because patient’s needs changed continually during the course of the disease. This included borrowing wheelchairs, toilet seats, and shower chairs from service clubs, renting a hospital bed for home, removing tripping and slipping hazards around the house, getting hand bars in shower, installing a wheelchair ramp at the front door, and adding handrails at the backdoor steps.
• Dealt with patient recovering from multiple surgeries and increasing disabilities including helping patient in and out of bed, assisting with toilet needs, transferring in/out of wheelchair, and making patient comfortable sleeping wherever he could in bed, chair or sofa, or on floor.
• Convinced health insurance company and individual case managers that patient was a “special case” with critical needs.
• Coordinated five physician’s offices, between Seattle and Bellingham, with numerous medical, lab and imaging appointments.
• Kept employer abreast of patient’s status and talked to patient’s coworkers about his disease and condition.
• Prepared a ton of paperwork in order to receive disability insurance benefits.
• Audited health insurance ongoing coverage that was separate from disability insurance.
• Worked out Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) health insurance coverage when patient’s sick and vacation days ran out, and patient was no longer employed.
• Set up an email group list and sent out updates about patient’s status and handled as many as 18 daily voice mail messages.
• Maintained a “normal” schedule for three children and local relatives.
• Talked with children about their father and this “crazy” change in family life.
• Read the Bible regularly and lived our faith in the face of our tragedy.
• Helped our high school-senior son with endless scholarship and college applications, and school events including his position as football team quarterback.
• Paid attention to the other two children’s athletic events.
• Managed meals as patient’s appetite and tastes changed with treatment and progression his disease. In a four-week span, dealt with one biopsy, one of three tumor surgeries and one wound infection associated with a partial skull removal.
• Found time to balance checkbook, reworked budget and juggle bill payments to stretch dollars and make ends meet.
• Needed help cleaning and maintaining house but was too proud to ask for help, though I secretly wished someone would volunteer. Children did weekly chores, but could help only do so much.
• Attempted to maintain five-acre home site, but weeds took over and I pretty much gave up. A group of high school kids came and worked all day a few times, but I couldn’t expect anything regular.
• Disappointed with lack of advice or guidance about how to cope with the trauma of terminal illness. Doctors provided plenty of medical information, but offered no “how to” for dealing emotions that accompany the disease for both the caregiver and patient.
• Monitored the impact of visitors on patient. Sometimes the patient wasn’t up to having visitors and otherwise welcome visitors had to be turned away. Other visitors didn’t know when to leave or talked excessively about themselves. Though known as a good listener, the patient’s ability to focus or concentrate declined over time.
• Recruited substitute caregivers for when I had to be gone for too long.
• Controlled medications by highly organizing them so the patient could take them without assistance.

If you are a cancer patient or one’s caregiver you need to look far beyond conventional sources for useful information and actionable advice. Here are four recommendations:
1. In Washington State in Whatcom, Skagit, San Juan and Island counties the Northwest Regional Council (NWRC) website at www.nwrcwa.org provides a Family Caregiver Support Program that offers abundant generic caregiving information and assistance. It is a good resource because much of caregiving is generic and what sets NRWC apart is that staff is available for consultation and support.
2. The “Orientation to Caregiving: A Handbook for Family Caregivers of Patients with Brain Tumors” mentioned above is an excellent how-to manual published by the University of California, San Francisco and available online at www.caregiveraction.org and at www.nwrcwa.org.
3. The Chris Elliott Fund, in Redmond, WA, is a nationally recognized brain cancer patient support organization providing immediate access to treatment options and support programs. Free patient support services are available by phone, email, Facebook, Twitter, video chat, and in person to guide patients and caregivers through all phases of brain tumor treatment. Education is available about brain tumor treatment, treatment options and clinical trials. For more information visit the Fund’s website at endbraincancer.com or email wecare@endbraincancer.com, or phone 800-574-5703.
4. “Waking Up Dying: Caregiving When There Is No Tomorrow” is a memoir published in 2014 and the title of this blog about caregiving in Whatcom County and Washington State. The book and blog are full of examples of the kinds of problems patients and caregivers encounter, and provide guidance in overcoming these obstacles and reforming healthcare. The book is available from Village Books in Bellingham, on Amazon and from the author at robertaduke.com.

Being a caregiver can mean doing everything – for yourself and another person — during life’s greatest struggle for both. It can mean doing your utmost all day, every day when everyday can mean life or death to a loved one. Help is available, but you must know where to find it. I hope this helps.

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