When you search for family caregiver support information, you tend to find answers in this order:
1) how caregivers can support a loved one with cancer
2) how caregivers can support themselves
3) how others can support cancer patients and caregivers
There’s little to no discussion or even acknowledgment of how cancer patients could and should support their own caregivers. This is absolutely baffling to me. I get it: cancer patients are dealing with so much, not least of which their own mortality.
But the relationship between patient and caregiver is so crucial to the entire journey—how could it not be a two-way street?
The fact is, it has to be. According to a National Alliance for Caregiving survey of adult caregivers who provide unpaid care to an adult relative or friend with cancer,
88% care for a relative
32% provide 41 or more hours of care per week aka caregiving is a full-time job
82% communicate with their patient’s health care providers
62% serve as advocates on their patient’s behalf
72% assist with medical tasks.
Caregivers are the ride-or-dies, often the people patients turn to for the most intimate needs, both physically and emotionally.
More than that, there are studies showing the relationship between the patient and caregiver can have a profound effect, including influencing each other’s mental and physical health.
Which means the more they can support each other, the better.
So how can cancer patients best support their caregivers?
1 . Be open about your emotional needs. Talk about them in detail. Agree on the terms.
When my husband was diagnosed with cancer, the first thing he said to me was “I need you to be strong.” This was actually super important, because he was telling me that what he needed more than anything was for me to agree to fight for his life alongside him, to not give up. He didn’t want me to bring hopelessness or fear into the room.
That’s how we’ve approached the last 14 years. He doesn’t need a cheerleader or a coach, he needs a steadfast partner who can keep in lockstep with his determination to survive.
Looking back, however, I want to asterisk our experience. In addition to saying what he needed, we would have benefited from a very direct conversation about exactly what that meant.
For example, I took it to mean that I couldn’t show or share my fears and worries, that if I needed to cry I shouldn’t do it in front of him. I hid my breakdowns from him most of the time, only to discover through the years that we benefited from sharing those feelings with each other. To him, being strong didn’t mean never feeling scared, it meant not succumbing to the fear.
2. Accept that your caregiver may not be able to or want to be all things to you.
Caregivers have a lot of different roles that can include emotional support (listening, encouraging); physical support (bathing, walking, eating, dressing); logistical support (transportation, appointment scheduling); medical support (wound care, prescription monitoring, conversations w doctors); household support (managing children, pets, food, home care/cleaning); financial support (paying medical bills, working while caregiving); and more.
Cancer caregivers in particular assume these roles more often. The same Caregiving survey found that “cancer caregivers more often help with Activities of Daily Living (ADLs, such as bathing, eating, toileting), Instrumental Activities of Daily Living (IADLs, such as shopping, driving, managing finances), and medical/nursing tasks than non-cancer caregivers.” What’s more, the findings show that, “Alarmingly, 43% perform complex medical/nursing tasks without any prior preparation.”
Some caregivers have the time, capacity and willingness to do all of the above (in which case those people are miracle workers but also likely to be suffering from burnout, depression and more), but others may not.
For example, your caregiver may not be willing or able to be your nurse in addition to being your cheerleader and medical advocate. My husband’s needs have included post-operative medication management, wound care (for which I got my very own honorary suture removal kit, thank you very much), antibiotic dosing and picc line management. I willingly assumed those duties, but they were also absolutely terrifying to me—I’m deathly afraid of messing up, giving the wrong medication at the wrong time or doing something to make an infection worse. Someone who can’t stomach this kind of role shouldn’t be forced into it.
You might feel more comfortable with your caregiver in all aspects, but you need to be ok with her or him letting go of some of the roles in order to be his or her best in others. This is a hard but necessary conversation.
3. Support your caregiver doing things on their terms, even if it’s not how you would do it.
If you need your caregiver to keep track of all appointments and she prefers to do so on paper instead of digitally, let her.
If you need your caregiver to provide healthy meals and he prefers to order delivery services instead of cooking from scratch, let him.
If the house needs cleaning, the lawn needs mowing, the weeds need weeding, etc., and you normally prefer to do these things with your capable self but your caregiver is overwhelmed and cannot fathom doing anything other than hiring a service even temporarily, that’s fine.
Or if your caregiver needs to let some things go in order to preserve his or her own mental health, that’s ok too. In fact, you may need to encourage your caregiver to let things go, because I guarantee she’s trying to be all things to all people and she is desperately trying to keep all the balls in the air out of a fucked up sense of control when what she’s really doing is kidding herself and burning herself out at the same time. Or maybe that was just me.
4. Support and encourage breaks and time alone.
Sometimes your caregiver needs sleep, or needs to be there for someone else (kids, herself), aka someone who is not you. Sometimes she just needs to not be a caregiver for a little while, and she needs to escape or set down the burden she’s been carrying, if only for an hour or two. Support your caregiver taking breaks in whatever form he or she needs.
My husband has become an absolute star at this, and it’s been a beautiful progression for both of us. When he was first diagnosed and in the hospital, I was by his side every moment. I slept in a chair next to his bed, I left only to get food from the cafeteria and even then he would call and ask when I was coming back. I know it was less dependency on me and more needing a comforting presence in the midst of a rapid-paced life-changing event.
As we had kids and more surgeries, he moved from wanting me by his side in the hospital to acknowledging the need for me to stay home with the kids to encouraging me to stay away longer in order to get the rest and break I needed. Repeated experience taught us both a lot here, but it goes beyond hospital stays.
When I hit my capacity breaking point, he was 1000% behind me doing whatever it took to get to a better place. I’d been caregiving for him and the family through four major surgeries in 3 years, two of which were back-to-back in the space of 2 months. Add on lots of last post-surgery complications, including 6 weeks of waking up every 4 hours to administer antibiotics; plus caring for my mom who came to live with us for 5 months while she recovered from two consecutive knee surgeries; all while working full time.
I needed not just a break but A BREAK, my two requirements being massages and not having to make any decisions about food whatsoever. Antonio took over everything and made it possible for me to escape on a own 3-day solo retreat and let me tell you it was EVERYTHING.
He went even farther when I hit the “oh snap all the emotions that come with cancer that I’ve been sweeping under the rug for 14 years and counting now have me in a mental space of having completely lost myself” breaking point, he completely supported me doing what I needed to take on actually facing and dealing with my grief/anxiety/stress/resentment/depression/burnout.
5. Be kind. Be patient.
It’s cliché but also common knowledge that cancer patients have good days and bad days. The same goes for caregivers, and the fact is, both patients and caregivers are doing the best they can on any given day amidst some pretty shitty circumstances. Kindness and patience go a long way in this environment, let me tell you.
Both are a silent acknowledgment and recognition of the fact that your caregiver has a hard job and is not only doing her best but all of her best is ultimately for you. Both are tough to do when you’re feeling your worst. Both can make the worst feel a little bit better.
6. Be vocal about how much your caregiver supports you—not just to him or her but to others as well.
Your caregiver’s aid is an essential part of your own wellbeing and it’s often unrecognized, much less celebrated. It’s important that your appreciation goes beyond silent kindnesses to outright vocal acknowledgment.
Caregivers want and deserve some credit because this is a hard fucking job that most of us didn’t volunteer to do. A lot of us are here simply because we love you and would do anything to help you feel better. Think about how powerful that is.
There are plenty of studies on the power of gratitude. That it improves relationships and also can improve the wellbeing of the person giving it to boot. But rather than cite studies, I’ll just tell you from personal experience that my husband telling me and telling others how much my caregiving meant to him has been one of the most important parts of our journey together. His honest and sincere appreciation has meant the absolute world to me. We’ve learned how to be each other’s steadfast support.
