What often goes unsaid when a parent is diagnosed with cancer is that it can be more difficult, at times, to be the caretaker—the child—than the patient. Ultimately, your parent gets to decide what their cancer journey will look like, what they are willing and unwilling to undergo, and how they feel day in and day out. You, the adult child, cannot fight cancer for them (as much as you want to!), and to be supportive, you have to be able to witness what is happening without intervening.
Despite these real feelings of helplessness, you are not powerless, and there are many other ways you can take action. Here, we outline various steps you can take to support your parent and help them make the most informed decisions regarding their cancer diagnosis, treatment, and outcome.
1. Learn Your Parent’s Health History
Learning your parent’s health history is critical for two reasons. The first is that it will help inform you and your family about what your parent has faced in the past, how they chose to move through it, and what they may be willing or not willing to undergo in the future. The second is that being diagnosed with cancer is overwhelming enough. In the diagnostic phase of the disease, a patient is often asked for their medical history tens to hundreds of times, so you can assist your parent and ease their anxiety by filling in those particular gaps for their care team. Here is what you need to do:
- Keep an updated list of the following:
- Medications
- Name
- Dosage
- Time of day taken(AM, Noon, or PM)
- Why (condition/illness/reason for taking the medication)
- Allergies
- Chronic illnesses/conditions/injuries
- Past illnesses/injuries
- If known:
- Family cancer history
- Blood Type
- Medications
- Your parent can share their information verbally, or they can grant you access to their online health portal(s)/account(s)
- Your parent may not want to share every detail with you, their child, so remember to respect their privacy and give them private time with their medical professionals when necessary
2. Understand What A Primary Diagnosis Is and Seek Second/Multiple Opinions
Once you and your parent have reviewed their medical history, together you can review their primary cancer diagnosis. These are the exam notes, tests, scans, and biopsies that your parent’s care team used to diagnose their cancer. However, this is only the opinion of one care team at one medical center. Cancer Sherpa strongly recommends that you and your parent seek multiple opinions from at least one oncologist specializing in your parent’s specific type of cancer at one of the 72 National Cancer Institute-designated cancer centers. A cancer treatment is only effective when it is treating the right cancer.
Often, these specialists and cancer centers can meet with you and your parent remotely for a second opinion based on the diagnostic results you already have. They will share the following information:
- Confirmation of Diagnosis
- The consulting oncologist will
- Recommended more diagnostic tests to ensure your parent is not misdiagnosed
- Confirm your parent’s primary cancer diagnosis
- The consulting oncologist will
- Treatment Protocol/Trial Options
- The physician’s office/hospital/medical center where your parent was diagnosed may not be a designated cancer center and, thus, not offer
- All available treatment options
- Clinical trials with new therapies
- The consulting oncologist will review all available treatment and trial options for your parent’s specific type of cancer
- The physician’s office/hospital/medical center where your parent was diagnosed may not be a designated cancer center and, thus, not offer
- Personalized Care Plan
- The consulting oncologist will explain and weigh all available treatment and trial options based on the type, stage, grade, and other genetic and cellular factors of your parent’s cancer, including
- Surgical and non-surgical options
- Side-effects of different types of treatment (chemotherapy, radiation, hormone therapy, immunotherapy, etc.)
- Prognosis for each option
- The consulting oncologist will explain and weigh all available treatment and trial options based on the type, stage, grade, and other genetic and cellular factors of your parent’s cancer, including
3. Discuss, Recognize, and Respect Your Parent’s Goals for Treatment and Beyond
Once you and your parent have explored all of the available treatment and trial options, it is important to ask your parent what they want out of their cancer treatment and, ultimately, what they want their cancer outcome to be. Cancer treatment is often physically, cognitively, and emotionally grueling, and depending on your parent’s age and health status at diagnosis, complete remission may not be their goal.
It is imperative to not only establish your parent’s goals for treatment and cancer outcome at the beginning of their cancer journey but to honor them throughout, even if their decisions differ from your own. For better or worse, you are there to support your parent, and while we all want more time with our loved ones, the quality of your parent’s life is also vital.
4. Attend Appointments, Take Notes, and Navigate Portals
The amount of new information coming at even the most seasoned and organized of cancer patients is formidable. From chemo drug dosing changes to a list of side effects to look out for to blood count results, one way to help keep your parent and family members calm and informed is to attend your parent’s oncology appointments, in-person or remotely, with them.
Additionally, almost all oncologists and oncology care teams welcome a family member, friend, or caretaker to attend appointments for support; they may just ask for verbal consent from their patient. While it may feel awkward initially, it is a common practice that quickly becomes routine. Here is what our sherpas do when they attend appointments:
- Attend in-person or remotely
- Take notes that include
- Name of the member of the care team you are meeting with
- Results shared
- Medications, therapies, and tests/scans to be taken or completed before the next visit
- Date of next appointment
- Keep an ongoing list of questions for your parent’s appointments
- Questions
- Your parent has
- You have
- Your family and fellow caretakers have
- Questions
5. Have the Hard Conversations Sooner Rather Than Later
Not that any of this has been easy; after all, this is your mom, dad, or the person who raised you, but now, at the beginning of treatment, is the time to have the hard conversations. Yes, those conversations about insurance, finances, and legal matters relating to your parent’s care and planning for every possible cancer outcome.
Start by giving yourself some grace, as talking about money, longevity, and death, even without the specter of cancer, is, daunting. A good place to start is to establish if your parent’s insurance wholly or partially covers the treatment they decide to undergo. If not, find out if your parent needs to acquire additional insurance or speak to a financial advisor about how to use their own funds/assets or structure potential medical debt.
In addition to financial considerations, one decision that needs to be made at the beginning of your parent’s cancer journey is who will serve as their medical power of attorney if they are unable to make decisions for themself. As the caretaker, this may be something your parent asks you to do, which can be established by completing your state’s form with your parent. You should also discuss a living will and if that is something they are interested in implementing.
Finally, and this is always the least fun for any child in any situation, it is essential to ask your parent if they have planned for the eventuality of their death. This is especially important if your parent still has a minor child in the home and needs to establish legal guardianship. Other considerations are if they have or need to update a Last Will and Testament or Trust, and if they want to appoint a financial power of attorney.
6. Organize Support
When your parent’s family, friends, and broader community learn of their illness, many want to help, and they will! However, if you do not take the time to organize their support, you can end up with twenty reheatable dinners during their first week and no one to take them to their chemo infusion three months into treatment.
You can do this yourself if you are savvy with a spreadsheet or adept at online calendars. However, websites like LotsaHelpingHands.com and CaringBridge.com allow anyone who wants to support your parent to sign up for different jobs and tasks. You and your parent can manage the asks and add and subtract them as necessary.
7. Provide Long-Distance Caregiving
While you may want to psychically be with your parent for every step of their cancer journey, that may not always be possible. Distance often puts additional strain on what is already a high-stress situation. The costs of time, travel, phone and video calls, missed work, and lost family time are exacerbated when your parent lives far away from you and you are the primary caretaker. Here are some ways you can be an active caregiver even if you don’t live near your parent while they are being diagnosed with and treated for cancer.
- Expect the Unexpected
- Be financially and logistically prepared for unexpected travel on short notice
- Have a family member or friend at the ready to care for your children, pets, plants, and home if you have to leave suddenly
- When you visit your parent
- Make sure your parent has a way of reaching you and other caregivers by
- Getting a cell phone that they keep on them at all times
- Ensuring the landline has a long-distance plan
- Consider a medical alert system that can be activated by a neck fob or bracelet
- Check that their main living areas are
- Accessible
- Well lit
- Free of any potential hazards
- Make any necessary improvements
- Grab bars
- Shower sears
- Ramps
- Arrange for help with
- Housekeeping
- Gardening
- Meals and groceries
- Pet care
- Get in touch with local family and friends
- Make sure they know how to reach you
- Choose one you can count on to check on your parent any time, day or night
- Make sure your parent has a way of reaching you and other caregivers by
8. Care for Yourself
Self-care is not something that comes easily to caretakers and can often feel like merely a buzzword when the person you are caring for is so important to you. However, if something happens to you, what happens to your parent? Thus, we don’t care what you call it, or what yours looks like as long as you prioritize your emotional, cognitive, and physical health while caring for your parent with cancer.
- The basics
- Eat a well-balanced diet
- Hydrate
- Reduce caffeine intake
- Exercise
- Prioritize sleep
- Talk to someone other than your parent at least once a day
- Take time for yourself
- Laugh (It’s a proven stress reliever!)
- Call the funniest person you know
- Stream a comedy special
- Watch your favorite funny sitcom
- Schedule several sessions of your favorite hobbies and activities into your week
- Start or maintain your spiritual, religious, and meditative practices
- Conduct a weekly self-assessment
- Let go of guilt – You, too, are worthy of care and should not feel guilty or selfish for needing or seeking it
- Watch for signs of stress
- Impatience
- Loss of/decreased appetite
- Difficulty sleeping
- Difficulty with concentration or memory
- Watch for signs of depression and anxiety
- Changes in mood
- Loss of interest in usual activities
- Unable to partake in or complete usual activities and tasks
- Treat yourself to one of your favorite things every so often
- Laugh (It’s a proven stress reliever!)
- Daily habits
- Stretch, breathe, and take short walks
- Cancer treatment is a series of “hurry up and wait” situations that will inevitably raise your stress level; take time in the “waiting” to move and breathe.
- Ask for help
- Family members and friends
- Household chores
- Meal preparation
- Childcare
- Petcare
- Employer
- Flexible hours
- Time off
- Family leave
- Family members and friends
- Don’t be afraid to
- Say “no.”
- Set and keep emotional and physical boundaries with
- Yourself
- Your parent
- Your family
- Your parent’s friends and the larger community
- Keep a short “to-do” list
- Share your feelings with
- Family
- Friends
- Therapist
- Support group
- Give yourself credit, as the care you give makes a difference
- Be kind to yourself; this is a full-time job you had zero training for
- Stretch, breathe, and take short walks
9. Work with a Cancer Patient Advocate
The above list would exhaust any caretaker, even those who practice self-care; that is why cancer patient advocates––like Cancer Sherpa––are here to work with you. These are some of the areas that clients often need the most support on:
- Evaluating parent’s current care and hospital
- Finding and Conducting Second opinions
- Facilitating insurance, financial, and legal assistance
- Attending appointments
- Organizing logistics
- Especially helpful in providing long-distance care
From attending appointments to organizing logistics, our role is to ensure that you and your parent have the support needed to make informed decisions. And if you’re providing care from a distance, we can be especially helpful in coordinating on-the-ground resources so your parent always has what they need. You don’t have to do this alone—let us help lighten the load. Contact us today.
Additional Reading
Compile Your Quick, Yet Comprehensive, Health History For Your Next Appointment
Logins for Loved Ones: Getting Your Digital Ducks in A Row
Advice & Camaraderie for Caretakers of Loved Ones
How to Reduce the Weight of Patient Burnout
A Former Cancer Patient and National Cancer Survivor Month
Not Just A Buzzword: How Self-Care Affects Our Physical Health
Thoughtful Gifts for Cancer Patients and Caretakers