Caregivers: Thank you for making hope & healing possible
A New Reality...
This is hard. Period. Emotionally. Logistically. Financially. Psychologically. Socially. Medically. HARD.
I see you and I feel for you. This is rough. Your plate keeps getting more full, spilling over the edge. The list of things you need to tackle keeps getting longer—verifying insurance coverage, researching doctors, keeping family and friends updated, attending appointments, tracking everything, keeping up at work, looking for ways to make your loved one feel better, preparing nutritional meals, running errands, etc. There’s little time left over to recognize and work through your own heavy emotions and personal needs.
Please don’t forget to take care of yourself. Take a break when you need one. Set new boundaries and be comfortable saying “no.” Ask others for help. You may feel alone, but there are a lot of us out here, walking down the same road as you.
During the most challenging times, please remember that your love, empathy, and efforts are soul nourishing for your loved one with cancer. What you are doing really matters.
Cancer Screening for Caregivers
Please stay on top of your own recommended cancer screenings. If they have lapsed and you're overdue, go schedule it right now. This is not a hassle, it's not something to be put on the back burner, and it's not a waste. We only have screening recommendations in place for five cancer types as of right now. It would be wonderful if we had more and, as time goes on, we likely will. Take advantage of this opportunity to be proactive about your own cancer risk for breast, colon, prostate, lung, and cervical cancers.
If you are symptomatic in any way—please see your doctor to investigate further. Possible signs of cancer may include chronic cough, blood in stool, unexplained weight loss or weight gain, new lumps or growths anywhere on your body, bloody mucous, chronic fatigue, unexplained pain, changes in eating habits or bowel habits, changes in breast texture or color, changes in urinary habits, mole and skin changes, etc.
In the next two sections, we'll discuss the caregiver experience, the impacts of caregiving, and things you can do as a caregiver to help your loved one.
What is Caregiving Really Like?
Cancer Experience Registry
Based on a 2020 survey of nearly 700 cancer caregivers, the Cancer Experience Registry highlighted the following findings
Providing Emotional Support
89% of caregivers surveyed indicated they were quite a bit/very much involved in providing emotional support
Going to Medical Appointments
Involved in Treatment Decisions
80% of caregivers surveyed indicated they were quite a bit/very much involved in going to medical appointments with the patient
Involved in Treatment Decisions
Unprepared for Emotional Needs & Stress
Involved in Treatment Decisions
2 out of 3 caregivers surveyed indicated they were quite a bit/very much involved in patients' treatment decisions
Unprepared for Emotional Needs & Stress
Unprepared for Emotional Needs & Stress
Unprepared for Emotional Needs & Stress
58% of caregivers surveyed indicated they did not feel prepared to care for the patient's emotional needs and 68% did not feel prepared to handle caregiving stress
Needed Help Understanding Medical Info
Unprepared for Emotional Needs & Stress
Unprepared for Emotional Needs & Stress
3 out of 4 caregivers surveyed indicated they wanted help with understanding the patient's medical condition and treatment
Caregiver Self-Care Needs
A Personal Caregiver Experience
Top Concerns as a Caregiver
One-half (49%) of respondents reported anxiety levels substantially worse than the national average.
One-third (34%, each) reported fatigue and depression levels that were substantially worse.
Only 53% of respondents listed "keeping up with my own health care needs" as a top concern.
Top Concerns as a Caregiver
A Personal Caregiver Experience
Top Concerns as a Caregiver
71% of caregivers surveyed were concerned about the patient's cancer progressing or recurring
67% were worried about the future and what lies ahead
60% were concerned with the patient's pain or physical discomfort
59% were concerned with a patient's eating and nutrition
59% were concerned about changes in the patient's mood or behavior
A Personal Caregiver Experience
A Personal Caregiver Experience
A Personal Caregiver Experience
“People talk about a caregiver, but you don’t really know what a caregiver is until you’re really in that role…I learned that a caregiver wears many hats: listener, observer, protector, planner, anticipator, the backup brain to the patient, the organizer, the strong one, the levelheaded one. The caregiver is the go-to person all the time…I quickly realized that I could not do it all and that I needed help.” -Sheri, Bereaved/Former caregiver for a close friend
What Can I Do as a Caregiver?
What am I supposed to do as a caregiver?
What are my responsibilities?
What do I have the capacity for?
What does my loved one need?
What am I unable or unwilling to do?
There are so many questions and so few answers, especially at the beginning of a cancer experience. Whether it's about logistics, finances, treatment options, or what comes next, the answers, when it comes to cancer, are rarely easy to come by. The reason for this is primarily because the answers look different for everyone. We've heard it: "no two cancers are the same." It's true, though. And with innumerable cancers out there, we end up with innumerable scenarios and individual experiences. A big part of the caregiving experience is trial-and-error, figuring out what's best as you go along, and flexing and flowing as you need to reach your destination.
The list below will give you some ideas of what may be helpful or beneficial for you to do as a caregiver. You may do a few of these, some, most, or all of them. What you take on is dependent upon your unique situation, the role you'll play as a caregiver, and what your loved one with cancer needs most.
What Can I Do to Help as a Caregiver?
- attending medical appointments (taking notes, asking questions)
- preparing for medical appointments in advance (list of questions to ask, concerns to discuss, new/problematic side effects, upcoming treatment schedule, upcoming tests/scans, referrals to other medical providers, etc.)
- providing transportation to/from medical appointments
- handling insurance coverage and claims (finding in-network providers, copays, deductibles, etc.)
- handling and organizing medical expenses
- helping to schedule medical appointments, treatments, and imaging
- running interference with and/or organizing meal trains and visits from family, friends, etc.
- communicating with family and friends about loved one's medical condition, status, needs, etc.
- relocating to be closer to loved one for caregiving (moving nearby or into the same home)
- keeping medical records up-to-date, organized, and easily accessible
- staying with your loved one at the hospital for inpatient procedures/surgery
- household responsibilities (preparing meals, dishes, grocery shopping, laundry, making beds, vacuuming/sweeping, yardwork, pet care, child care, cleaning, etc.)
- medication oversight and organization (when to take, what to take it with/without, ordering refills, picking up prescriptions, etc.)
- assisting with ADLs (activities of daily living) like getting dressed, showering, toileting, meal preparation, mobility assistance, etc.
- continue working or finding a means to bring in additional income
- helping manage side effects of treatment at home
- providing emotional support and checking in on your loved one's mental health
- researching to better understand (cancer type, diagnosis, prognosis, tests, provider options, second opinions, treatment options, treatment risks/side effects, clinical trials, nutrition, support groups, other needed resources, etc.)
- initiating estate planning before it becomes an emergency (living will, healthcare surrogate/proxy designation, DNR, POLST, hospice wishes, etc.)
- serving as an advocate for your loved one in medical situations (Are they receiving timely, quality care? Are they being properly informed about their medical condition, all treatment options, and the likely (realistic) outcome of their cancer? Are they being dismissed, gaslighted, or discriminated against by medical providers or staff? Do they have access to convenient appointment times and locations? Is there a problem with communication between the medical team and the patient/family? Is information being delivered in clear, easy-to-understand language? Is the patient given the time and space to ask all of their questions and make medical decisions? Do they receive appropriate and complete answers to their questions or are they rushed out or brushed off? Are their preferences, beliefs, and needs taken into consideration?)
- anticipate short-term needs, changes, issues, concerns, and developments
- pulling in additional supports as needed to whom you can delegate some responsibilities; or getting help in other ways (respite care, for example)
I'm sure there are more bullets we can add, but it's pretty long as-is. Please don't feel obligated to take on the entire list, though you may choose to, of course. It's here just to give you ideas of what you may be able to do to help your loved one. Talk to your loved one about what they need, and share what you need and what you can/cannot provide. It's okay to set boundaries for yourself and it's okay to ask others for help.
