Six Things to Not Say to a Caregiver and Six Things that Are Helpful
I’ll get the unavoidable out of the way first: My husband has leukemia. (You can read more about his story here.) Before my husband was sick, though, I had experience as a caregiver when my mother, who had Lewy Body Dementia, lived with us. While my husband is doing really well at this stage, he has a long road ahead, but generally with an optimistic prognosis. My mother’s disease, though, was progressive with a steep downward tendency. These experiences have both taught me that many people are well-intentioned but don’t realize the ways in which they may add to the emotional burden of caregivers, especially with how they communicate to us. I also learned how simple but singularly helpful other approaches can be for supporting someone who is caring for a loved one facing a health crisis.
I should be clear that my thoughts here are just that: My thoughts. It will not resonate with all other caregivers and I would never presume to speak for everyone. Some people may consider the things on my no-fly list to be supportive and others may find the ones that bring me relief to be hurtful. If you want to be supportive of a caregiver, the best thing is to stay attuned to that person so you can be as sensitive as possible. You may notice that I started this first list with #2. Please read through — or skip ahead, I promise my feelings won’t be hurt — to the end to find the absolutely worst thing you can say.
What Not to Say to a Caregiver
2. “My grandmother recovered from Stage Four breast cancer by eating hemp seeds.”
Along these same lines, unsolicited dietary advice like “You should go on a juice fast,” “Raw foodists don’t get cancer,” or, conversely, “Maybe you should stop being vegan and drink bone broth,” etc. is super-duper, four-alarm fire not helpful. If you want to give dietary advice to people, here is what I suggest you do: Become a dietitian. Become very knowledgeable. Promote your business. Become very familiar with the disease you are advising about. And then only share your advice with your clients or those who overtly solicit it. I have noticed that people who want to dispense dietary advice will claim that they “only want” to help; they may also say really gross things like “Well, fine, if you want so-and-so to stay sick, keep doing things the way you have been,” as if you’re just a sniveling whiner and they are the tough truth-tellers. It is not helpful. I am going to go against my general rule against unsolicited advice here and offer some: Avoid these people like the plague if you are able to do so.
Variation #1: “He/she should go to so-and-so wellness center to get cured.”
Once someone has determined their treatment approach, jumping in with recommendations to far-flung spas, healing centers and sketchy YouTube channels is super unhelpful. Unless someone is asking for recommendations, it is best to keep that to yourself.
Variation #2: “Bad thoughts are what causes cancer.”
I am a believer in the power of optimism but this mentality is garbage-thinking and gibberish from followers of The Secret and other fuzzy self-fulfillment Ponzi schemes, desperately trying to find a reason why unfortunate things happen to good people.
This is so cruel and unfair.
Let’s look at Mr. Rogers. Fred Rogers was one of the most loving and progressive public figures I can think of, someone who embodied goodness, light and sensitivity, helping to model living in the world as a different kind of male years before we ever heard the words “gender fluidity”. He was miles ahead of most everyone else in the 1960s and 1970s and even helped to save PBS from Nixon’s chopping block. He was also slender, exercised daily and was a vegetarian. Yet he died of stomach cancer. Was his cancer evidence of “bad thoughts” or is this yet another convenient rabbit hole that those who are uncomfortable with mortality are willing to tumble down to be assured that there is order in the universe? I’m pretty sure it’s the latter.
3. “Cancer cannot live in a body that is alkaline.”
False. The alkaline myth is just one fallacy among many. Please keep this and other simplistic pseudoscience and facile explanations away from sick people and their caregivers. It is a form of what I have come to call playing “pin the tail on the cause”; it’s another attempt to find answers and order in an disorderly world that doesn’t always follow our expectations or attitudes about what is right and fair. Before saying something like this, I’d ask you to ask yourself: “Am I saying this because I am uncomfortable about my feelings of mortality and lack of control, or am I saying this because I know it to be helpful? If I can honestly answer that I am saying this to be helpful, did the person ask for my help or is this unsolicited? If it is unsolicited, can I keep in mind that what I am thinking about saying might very well be adding to the total burden on someone who is under a lot of stress and hardship right now and trying to navigate a lot of advice from a lot of directions?”
4. “Everything happens for a reason.”
Really? Everything? You might want to think about that because if everything happens for a reason, you must include incest in that maxim. Also: Genocide, airplanes falling from the sky, stepping on landmines, parents outliving their children, train crashes, domestic abuse and cruelty to animals. Obviously, I could go on and on. If you’re uncomfortable with chaos and unfairness, well, join the club. So am I. The fact is, though, you can drink green smoothies every day of your life and still fall down a staircase, or — guess what? — get leukemia. Yes, even that. Please don’t chalk things up to “God’s Divine Plan” or New Age claptrap unless you want to imply that those who are facing a very painful time in their life or recovering from a tragic event just need to “trust in the universe.” Oh, yeah. Please don’t say that, either. People in these circumstances are often managing their best and deserve to express their feelings without pithy platitudes being lobbed at them.
5. “You’re so brave” or “You’re so strong.”
Make no mistake, this is well-intentioned and kind but I believe it is generally not helpful because it’s another trope. When something terrible happens to someone, they are not necessarily brave or strong: they are dealing with a bad situation that has presented itself as best they can, a situation they didn’t seek out. Telling someone that they are brave or strong also may be subtly communicating that they need to not cry or show fear and vulnerability lest they no longer qualify as brave or strong. Again, I think it’s well-intentioned, just not always helpful.
6. “He’s/she’s going to win this battle.”
As with the point above, this is well-intentioned, and I can tell you that since my husband is doing well, it doesn’t hurt me. But…imagine if he weren’t doing well. Imagine if he were getting bad updates. I have known others who were fighting cancer tooth-and-nail with less than positive results and this sentiment made them feel shitty. Definitely dispense this with caution.
One of the more stressful binaries for someone facing a life-threatening disease is they either win or they lose. The “battle” language seems to be especially strong with those dealing with cancer. The fear of judgement or disappointing people when things are not going well is reinforced through this kind of verbiage. While on the surface, it may be seen as cheering a person on — we love our David and Goliath/Rocky Balboa story arcs — sentiments like this can add more weight to the emotional load that person and their caregiver is already carrying.
Six things that are helpful. I have a lot less to say about these: you can power through!
1. “I love you.”
Three little words yet they mean so much to someone who is in pain. It’s not trite if it’s genuine.
2. “I’m so sorry.”
The fact is, you don’t have to offer far-fetched solutions or so-called cures; we’ll feel better if you refrain. One of the most powerfully supportive things you can do is acknowledge the pain this person is in and sit with the uncertainty of it with them without trying to fix things or reactively live-and-light your way out of the discomfort of vulnerability. This are another set of three little words that can mean so much.
3. “I am thinking about you and just wanting to check in.”
Making yourself available in this way is a gentle reminder that caregiver is not alone. Illness can be a very isolating experience and it can sometimes make those going through it, including their caregivers, remove themselves from interacting with others because they don’t want to be downers. Saying something like this — and meaning it — is a way of throwing a lifeline out to someone who is perhaps feeling more and more alone. Letting the caregiver know that he or she is remembered might seem like stating the obvious, but, trust me, it’s not. Lives are busy and stressful for everyone; we understand that. Taking a minute out to touch base with a caregiver in your life doesn’t take too much effort and it makes a big difference in our lives.
4. “How are you? No, really. How are you?”
Speaking for myself, I know sometimes it’s very tempting just to say “fine” and smile but often that is a way to deflect or to not be a burden. (It’s also how we’ve been socialized to answer in general, in times of sickness and in health.) If you have the kind of emotional intimacy with the caregiver where this would be appropriate, it can be valuable to communicate that they can off-load to you the victories and the difficulties of their lives. It’s a great release for many of us to know there is someone who not only cares about us but wants to understand the reality of our lives without judgment. Keep in mind, though, that it is up to the caregiver what they want to speak about and don’t add additional pressure by insisting the person reveal more than is comfortable at that time.
5. “I am planning to get some groceries for you: what is a good day to drop them off?” [Or, clean the house, do some errands, shovel your walk, make some calls, whatever.]
Oh, this one! When people ask, “How can I help?” it is kind, thoughtful and appreciated but can often add to the sense of overwhelm a caregiver may be experiencing. Also some people are just uneasy in the role of stating what they need. The goal in all of this is to lighten the load on caregivers, after all. This is why I suggest offering specific ways of helping, like saying, “I am going to the grocery store. Can I drop some things off on your porch?” or “I’d love to babysit Teresa if she’s free on Saturday so you can get some alone time,” or “We’re going to have a bake sale to help defray some of your medical costs and earning loss. Is April 17 okay? You don’t have to be there!” We had a friend just ask for my address so she could sign us up for a week of Purple Carrot deliveries, which was so considerate and helpful. Being an ally in this doesn’t need to mean spending money but figuring out ways you can help reduce stress on caregivers facing difficulties whether you are near and far, and offering specific ways definitely relieves the load.
6. “You are doing such a good job.”
Just thinking about this makes me cry. Navigating a medical environment can be deeply humbling, frightening and difficult. It can make you feel like a failure and you can also be short-tempered or impatient with the person in your care, which may just heighten your sense of not being cut out for the role. Not everyone is a born caregiver. I know I’m not but it’s the role for me now. As such, it’s often uncomfortable and mistakes are made. Hearing someone acknowledge that even if it is challenging and you’re not perfect, you are doing a great job is so important. We may not hear it from the person we’re caring for; they have their own battles and shouldn’t be expected to have that fall on them. Acknowledgement from others, though, is so helpful; again, it’s a lifeline for someone who may feel like she’s barely keeping her head above water at times. We are doing our best but often incredibly fragile. This small acknowledgement can revitalize us.
Okay, now we are now officially at The Worst Thing you can possibly say to someone with a loved one who is facing a life-threatening disease. The very worst thing is…to say nothing. To be so wrapped up in awkwardness or discomfort or fear of mortality or whatever and say nothing. Of course this depends on your relationship with the caregiver and your intimacy; I also understand that it can be awkward and uncomfortable. The absolutely worst thing, though, is to be a friend or family member who says nothing. Do not make the person who is acting as caregiver reach out to you to tell you what is going on. Do not say things like, “I would have loved to help but I wasn’t sure if you wanted to talk.” Just bite the bullet and reach out. Acknowledge what is going on. Understand that you may be uncomfortable or feel bad that you can’t do more. Sometimes, too, there are old wounds that can get in the way of communication. Caregivers understand this. What is difficult to accept or forgive, though, is radio silence.
I hope this helps and, as a reminder, these are just my thoughts. The best way to know how to be there for individual caregivers is the simple gift of your presence and ability to listen without judgment.