Six Things that are Hurtful to Caregivers, Six Things that Are Helpful and the One that Can End a Relationship

^{Credit: Jean-Baptise Santerre}

I originally wrote much of this in April of 2019, just a couple of months after my husband was diagnosed with a sudden and very aggressive form of leukemia. I’m not going to keep you in suspense: He survived and is in remission. He’s actually in the kitchen making his breakfast as I write this. Thanks to an incredible medical team, a dedicated caregiver (me!), innovations in the treatment of his kind of leukemia – this is the kind of progress that is now being stalled under the direction of Robert F. Kennedy, Jr – endless support from our friends, his own resilience and just sheer good luck, John is fine, but it was a really precarious and scary couple of years, especially as his most vulnerable time of having a zeroed out immune system completely teed up with the COVID pandemic.

Before my husband became sick, though, I had experience as a caregiver when my mother, who had Lewy Body Dementia and a form of Parkinson’s disease, lived with us for two years before her passing in 2013. While my husband had a long, uncertain and circuitous path to recovery, he generally had an optimistic attitude and prognosis once the first weeks were behind us. My mother’s disease, though, was progressive in the worst sense of the word with a steep downward trend to expect. The best we could hope for was maintaining and that was a distant dream. Understandably, the diseases hit her and her loved ones very hard physically and emotionally.

Caring for my mother was like observing the milestones one might track with her baby, instead in this instance, it was the reversal, the unraveling of her precious independence. Instead of learning how to sit up on their own or pull themselves to stand as they transition from baby to toddler, people with worsening diseases might not be able to dress themselves one day. That is a new milestone to adapt to, mentally and organizationally, for the afflicted but also caregivers and loved ones. Instead of learning how to lift the spoon up and feed themselves as toddlers do when they gain skills in caring for themselves, an adult with an acute, worsening disease may lose their ability to feed themselves. It is a change in one’s autonomy and a painful marker of a new normal that will likely not change as the disease worsens.

These experiences in the trenches with my mother and then my husband taught me that many people are well-intentioned but don’t realize the ways in which they may compound the emotional burden as well as actual labor of caregivers. I also learned how simple but singularly helpful other approaches can be for supporting someone who is caring for a loved one facing a scary health crisis. People often don’t realize how little it takes to hurt or help a caregiver.

I should be clear that my thoughts here are just that: My thoughts. They will not resonate with all other caregivers and I would never presume to speak for anyone else. Mileages will vary. Some people may consider the things on my personal “what not to do” list to be supportive and others may find the ones that brought me relief to be hurtful. Ideally, if you want to be the best support for a caregiver, the best thing is to pay attention and stay connected to that person so you can be as sensitive to their needs as possible.

Six Things that are Hurtful to Caregivers

1. Unsolicited dietary advice is not helpful

This is among the worst things with which to burden a caregiver who is already overwhelmed in my opinion. One thing I heard: “My grandmother recovered from Stage Four breast cancer by eating hemp seeds.” Along these same lines, other assorted tidbits of dietary advice like “Have you thought of a juice fast?,” “Raw foodists don’t get cancer,” or, conversely, “Maybe you should stop being vegan and drink bone broth,” etc. are 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. Become very familiar with the specific disease you are advising about. Then and only then, share your advice with your clients or those who expressly solicit it. I have noticed that people who are inclined spit out dietary advice like Pez dispensers will claim that they “only want” to help; they may also say cruel like “Well, fine, if you want so-and-so to stay sick, if you want to be a victim, keep doing things the way you have been,” as if you’re just a helpless whiner and they are the tough truth-tellers. It is not helpful. It’s actually mean. It’s also uninformed. You can drink green smoothies every day of your life and still fall down a staircase, or — guess what? —get leukemia. Yes, even that.

Speaking of, offering pseudoscience, like the myth about alkaline, instead of genuine care, is not only false, it is harmful. Please keep this and other fallacious explanations away from sick people and their caregivers. It is a form of what I call playing “pin the tail on the cause,” an attempt to find answers and order in a chaotic world that doesn’t always follow our expectations or beliefs 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 emotional 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?”

I am going to go against my general rule against giving unsolicited advice here and offer some: Avoid self-appointed dietary advisers like the plague if you are able to do so. If you are not able to fully avoid them, set some ironclad boundaries and stick to them like your mental health depends on it, because it does. As a caregiver, it is your priority to keep yourself as healthy and peaceful as possible.

2. Woo promoters also need to stop with that

Listen, as someone who has about 30 tarot decks and an appreciation for the mystical (Aquarius sun and rising, yo!), there is a time and a place for your speculations. That time and place really shouldn’t ever be with an overburdened caregiver, unless, of course, you know that they want to hear things like how chemtrails cause cancer, that there’s a $5,000-a-day wellness center constructed entirely out of crystals and pyramids that will cure your loved one, or, speaking of cures, have they tried water fasts, and while I’m at it, did you know that bad thoughts are what cause disease???

Once someone has determined their treatment approach, jumping in with recommendations to far-flung spas, healing centers, influencers and sketchy YouTube videos/channels is super unhelpful. Again, unless someone is asking for recommendations, it is best to keep that to yourself. If you cannot resist, know that you can always keep these suggestions in your back pocket if a health crisis arises in your own life.

There is a deep-seated, often unexamined notion in this country, perhaps rooted in Judeo-Christian notions of sinfulness and godliness, that people bring their diseases upon themselves. I am a believer in the power of optimism but this mentality is garbage-thinking and gibberish that desperately tries to find a reason why unfortunate things happen to good people.

Let’s look at Fred Rogers, for example. Mr. Rogers was one of the most loving and progressive public figures I can think of, someone who embodied goodness, kindness 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. (Well, I mean, it’s back on there but…) He was also slim, 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 rationale that those who are uncomfortable with mortality are eager to slap on something to believe that there is order and fairness in the universe? I’m pretty sure it’s the latter.

3. Empty platitudes can make a caregiver feel worse.

For example, “Everything happens for a reason.”

Really? Everything? You might want to think about that because if everything happens for a reason, you must include child abuse 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. 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 challenging and scary 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 be able to express their feelings without unhelpful clichés being tossed their way.

Your discomfort is yours to own. Keep it to yourself.

Other broad platitudes like “You’re so brave” or “You’re so strong” felt condescending and like I was being pitied. Make no mistake, this is well-intentioned and kind but I believe it is generally not helpful. When something terrible happens to someone, they are not necessarily brave or strong: they are dealing with a bad situation that has presented itself in their lives the best they can, a situation they didn’t seek out. Telling someone that they are brave or strong may also be subtly and unintentionally 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 meant well, just not always helpful.

4. Battle language can be hurtful

As with the point above, this is well-intentioned but I have known good, deserving people who were fighting cancer with all they had who had less than positive outcomes and this sentiment made them feel like failures. Definitely dispense this with caution. My husband, the one directly in the health crisis, didn’t mind it, but it landed poorly with me. I’m not the only one who feels this way.

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 judgment 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 vs. Goliath story arcs  — sentiments like this can add more weight to the emotional load that person and their caregiver is already carrying. As a supporter, the best approach is to follow the patient or caregiver’s lead on this kind of verbiage.

5. Don’t put the onus on the caregiver for updates

It’s understandable if you’re feeling hurt if you were not one of the first people contacted about someone’s illness or you heard secondhand; the same applies to not getting personal updates. I get it. That said, the life of a caregiver is very overwhelming and at times, it can feel like your ability to remain upright is as precarious as a tall Jenga block tower. I had to let go of my people pleasing tendencies and just accept that my main priority was keeping my husband alive, not reach out personally to people.

Clinical psychologist Dr. Susan Silk developed a concept called The Ring Theory. It’s a very basic practice, but it’s one that offers so much relief to stressed out caregivers if people will abide by it. Again, the premise is simple: The Ring Theory says that whoever is most immediately in the center of the ring, or the middle, of the crisis, should not receive any stress from outside rings, which represent different kinds of relationships to the person in the center. To visualize, you could draw a circle in the middle of a piece of paper. Then write the name of the afflicted person in that center ring. Bull’s eye. Draw another ring. This ring holds those closest to the person in crisis: Partners and children, for example. The next ring is dear friends and close cousins, for example. The next ring is friendly colleagues, for example, or former roommates. With each concentric ring, it gets further from those most personally involved in this crisis. It doesn’t mean they don’t care. It means it’s just less directly felt.

The Ring Theory says that you should avoid dumping stress into the more interior rings. Comfort in, stress out. If you ask, “Why didn’t you call me?” or ask an abundance of questions to a ring that is closer to the center, especially the caregiver or person directly afflicted, you are dumping stress in. The farther from the center, the more okay it is to “dump” stress and worries; toward the center, you only want to send support and comfort. Don’t compound the stress and grief of those in the inner-ring by dumping stress in.

6. Reminders to sleep

Don’t remind caregivers to sleep, to take care of themselves, to rest. Like many of these recommendations I’m making here, it is well-intended but in many cases, it is an empty exhortation that compounds stress and pressure. In my case, my husband was in a virtual quarantine aside from doctors. I was the only one who was allowed to care for him, making sure he got his medications, ate adequate calories, was taken to appointments, and so on. Realistically, how was I going to rest? Instead of telling people to do something (else) that feels impossible, it’s more helpful to figure out ways that you can relieve the stress burden, like (if the care allows for it), staying with the person under care while the caregiver is taking a break, or sending food if not. More on this below.

Six Things that are Helpful for Caregivers

1. Stay in touch

This may sound contradictory to my general message of not overwhelming a caregiver, but in all the time I spent in caregiving mode, it never added to my stress to just hear simple messages of thought and love from the people in my life. As long as it didn’t have added expectations of returning messages, they were always gratefully received. Telling someone you love them over text can be just the medicine an overloaded caregiver needs. Sending an email that you’re thinking of them can make a caregiver feel less alone. Leaving a voicemail just as a reminder that you are sending best thoughts may feel trite but it can be so uplifting to someone who feels barely afloat in churning waters. It matters so very much.

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. Reminding a caregiver that you’re thinking about them  is a way of throwing a lifeline out to someone who is perhaps feeling more and more alone and close to burnout. Letting the caregiver know that they are being thought of 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 their lives.

2. Allow the caregiver space to be real about what they’re experiencing

The fact is, you don’t have to offer unsolicited advice, so-called cures or forced cheerfulness; you can just allow caregivers the freedom to process the messy human experience honestly without trying to “love and light” a difficult time and without judgment. 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 force your way out of the discomfort of vulnerability.

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 both the victories and the difficulties of their lives. It’s a great relief for caregivers to know there is someone who not only cares about them but wants to understand the reality of their 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. As always, take their cue.

3. Offer specific ways you can help.

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. It’s also possible that there is SO much needed, the caregiver can’t even come up with one idea. Further, some people are just uneasy in the role of stating what they need. Caregivers are often just putting one foot in front of the next, not able to run through the multitude of ways someone can relieve their burden. 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 your kids on Saturday afternoon 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 friends who took it upon themselves to send us meal kits, slip-on shoes for John, medical supplies and more, which was so considerate and helpful. We had one particular angel who organized our whole support network via a spreadsheet and updated everyone over email.

You don’t need to be near to help. 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 and offering specific ways definitely relieves the load. A bunch of great ideas for supporting a caregiver can be found here, and if you are long-distance, you can always stay in touch, offer to be the go-between for communications to the caregiver’s community, organize an online medical relief fundraiser and that sort of thing. There are many things you can do from afar.

4. Offer heartfelt compliments.

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 any feelings of guilt. Not everyone is a born caregiver. I know I’m not but it was the role I found myself in. As such, it’s often uncomfortable and mistakes are made. Tempers can flare. Hearing someone acknowledge that even if it is challenging and you’re not perfect, you are doing a great job is so important. Caregivers may not hear it from the person they’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. There were many times my friends helped me off the metaphorical ledge in the middle of the night, and I don’t know what I would have done without them. General compliments are great – “You are doing such a good job!” – but specific ones can feel more real. For example, “I love the way you ask for the help you need,” “Your organizational skills are impressive!” and “Your mother looks so happy in this photo – you’re doing an amazing job.”

5. Remind them of their lives before caregiving

Caregiving can be such an overloading experience, caregivers can lose touch with who they were in the “before times”. If you have fun or meaningful memories together, that can be a joy for someone in the deep, heavy throes of caregiving to relive. Did the caregiver love to dance before they found themselves in the role of caregiving? Did they make pottery? Garden? Remind them that there is a life again after caregiving and that they were vibrant, three-dimensional people before this time. Sometimes just bringing up a passion that has nothing to do with caregiving can be a welcome opportunity to think and talk about something else. One of the most disconcerting aspects of caregiving for me was how robotic I could feel at times as I was trying to schedule appointments, give medications, clean the house, etc. Reminders that we are human beings beyond this experience is helpful.

6. Include them

Tell them about your life. Include them in your plans even if they can’t join you. Just inviting a caregiver in helps to relieve the sense of seclusion. It reminds them that life is more than this one difficult situation they may feel mired in at the moment.

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Okay, now we are now officially at The Worst Thing you can possibly do to someone with a loved one who is facing a life-threatening disease. The very worst thing is…to say nothing. To ghost. To disappear. 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 level of intimacy; I also understand that it can be awkward and uncomfortable.

Saying things like, “I didn’t want to bother you when you were so busy,” well, I’m sorry, that is a cop out, unless you know that the caregiver did not want to be reached. Knowing that it takes so little to acknowledge what someone is going through or that you’re thinking of them, and it helps caregivers so much, I’d say to just reach out without expectations with decent consistency. (Being mindful of the Ring Theory best practices, you can also reach out to someone who knows more of how you can be helpful.) Acknowledge what is going on. Understand that you may be uncomfortable or feel bad that you can’t do more. That is OKAY. 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 dipping out entirely.

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, your kindness and ability to listen without judgment.