Tech innovators Indu Navar and her husband Peter Cohen were at the top of their game in Silicon Valley when Peter started having strange symptoms, such as not being able to flex his ankle.
It took the couple two years to receive the diagnosis of amyotrophic lateral sclerosis (ALS), a terminal neurodegenerative disorder.
“When we finally had the diagnosis, the disease took over rapidly,” Navar says.
Her new role as caregiver took up most of her time and began to isolate her.
“When I would talk with others I really couldn’t express the tragedy unfolding for Peter and myself. Death and dying is not something most of my friends wanted to dwell on,” she says.
Others didn’t offer the support she truly needed — offering only unhelpful, invalidating platitudes.
“People saying the wrong thing is common because most people have no idea of the complexity of being a caregiver, especially 24 hours a day like I was. I understood people really had no idea of the stress I was under,” says Navar, who later founded EverythingALS.com, a patient-focused nonprofit bringing new technology to research and treatment.
Whether you’re caregiving for a spouse, elderly parent, chronically ill child or other loved one, you’ve likely had experiences similar to Navar’s.
“People often struggle with what to say or how to support those caring for their loved ones because it touches on deeply emotional, complex situations that can feel intimidating or unfamiliar,” says Marvell Adams Jr., a health care industry senior living specialist and CEO of the nonprofit Caregiver Action Network.
Ironically, by being afraid to say the wrong thing, people often end up doing exactly that.
We asked caregivers and professionals what unhelpful — and sometimes even hurtful — things people commonly say and how to give them the support they really need.
[Read: Hiring an In-Home Caregiver: What to Consider]
What Not to Say to Caregivers
Because most caregiving happens behind closed doors, others don’t see the emotional, physical or mental toll it takes.
“When the challenges aren’t visible, others may minimize them or assume you’re exaggerating,” Adams says.
Other times, people genuinely want to help but don’t know what to say or how to give meaningful support. “Friends and family members might not fully grasp what it takes to bathe someone, redirect difficult behaviors or navigate the health care system daily,” says Dr. Julius Bruch, a former dementia researcher who’s now cofounder and CEO of Isaac Health, which provides virtual services for dementia patients and their caregivers. “This disconnect can create a painful loneliness — the sense that others don’t understand or appreciate what you’re carrying.”
In addition, caregivers often don’t want to burden others or ask for help, so they hold everything in. “This self-silence creates an even deeper emotional distance from others,” Adams says.
The result is that caregivers frequently receive awkward, unhelpful comments, such as:
[Read: Senior Home Care: Services, Costs and Tips for Aging in Place]
1. “Let me know if you need anything.”
We’ve probably all said this at one time to a friend or family member going through a tough situation. Although it’s intended to give support, it’s too vague and generalized.
“It places the burden back on the caregiver to ask for help,” Adams says.
What to do instead: Without asking the caregiver what to do, volunteer specific and practical ways to help.
“Actionable empathy goes a long way,” Bruch says.
You can offer to:
— Bring them meals, or come over and cook
— Run an errand
— Provide respite care by staying with their loved one so the caregiver can take a break
— Accompany them to an appointment
— Pick up groceries
— If you’re the boss of a caregiver who works, offer flexible hours, remote work or paid leave
Of course, make sure you actually follow through.
[READ: How to Manage Sibling Conflict Over Care of Elderly Parents]
2. “I could never do what you do” or “I don’t know how you do it”
Any comments that indicate the caregiver’s task is unimaginable reinforces the belief that others don’t — and can’t — understand what they’re going through.
In addition, caregivers don’t want to be set apart because they simply stepped up when needed.
“This sounds like admiration, but it can feel isolating, as if the caregiver is somehow fundamentally different or alone in their responsibility,” Adams says.
What to do instead: Leave yourself out of it to avoid shifting the focus away from the caregiver.
“Do not make everything about you,” Navar says.
It’s OK to admit you don’t fully understand.
“Say instead, ‘I haven’t been in your shoes, but I’m here to listen if you want to talk,'” says Steve Barlam, a social worker and president of the Aging Life Care Association. “Balancing being frank and compassionate is where it is at.”
3. “You are a saint/angel/hero.”
This comment also casts the caregiver as different or superhuman.
“It can put caregivers on a pedestal and make it harder for them to express when they’re overwhelmed or angry,” Barlam says.
Dean Stephens, a health care start-up advisor in Larkspur, California, experienced this when he became a long-distance caregiver for his parents, who lived across the country.
“A comment I received regularly was that I was ‘such a good son,'” he says. “I took my role as a duty, an obligation that could not be ignored. I never thought that meant I was a good son. In reaction to that compliment, I found myself questioning whether I was doing enough.”
What to do instead: Recognize that the caregiver is just a regular person in a difficult situation. They’re not looking for praise, but an understanding of what they’re going through.
“What I would like to hear is the recognition that caring for elderly parents, as in my instance, is so challenging, and, ‘I know you are doing everything you can to make sure they are safe and well-cared for,'” Stephens says.
4. “Why don’t you get more help/place them in a care facility/move them in with you?”
While there are in-home caregivers and senior living facilities, there are no easy solutions to caring for a loved one who needs assistance. Assuming a caregiver hasn’t thought through all the options, or questioning their decisions about care, is dismissive and hurtful — and may put the caregiver on the defensive.
For example, people often asked Stephens why he didn’t move his mother in with him after his father died, instead of traveling cross-country to see her as she aged in place.
“Yes, I could move her 3,000 miles from the town she grew up in and where, in her late 80s, she still had some remaining local friends,” he says. “But Mom made it adamantly clear she wanted to die in her hometown. No way would she accommodate such a move.”
What to do instead: Make yourself available to the caregiver, but simply listen without giving advice.
“Just offering yourself with availability tends to land better, for example, ‘I know this must be really hard. I’m here to listen if you want to talk,'” Bruch says. “What caregivers need most isn’t advice — it’s presence. The support that mattered most, both for my family and the caregivers we work with, came from people who listened without judgment and simply showed up.”
5. “Don’t forget self-care/Make time for yourself.”
Although it’s true that caregivers should prioritize self-care, they probably already know this but have had trouble finding opportunities to do so.
“Though well-meaning, it can feel patronizing or dismissive, especially when the caregiver has no time or help,” Barlam says.
A caregiver might also hear, “You look tired — you need to take better care of yourself,” which comes across as blame rather than encouragement.
“Caregivers often already feel guilty about not doing enough, and this adds to that pressure without offering real help,” Adams says.
What to do instead: Because caregivers put themselves last, they may not have time to research the available resources to help them. Friends and family can help take some of their burden by locating and connecting them with professional services and support groups, including:
— A therapist familiar with caregiving stress
— A nonprofit that provides education, coaching and clinical guidance, such as Caregiver Action Network or Isaac Health
— A local caregiver support group through a hospital, community center, church/temple or senior center
— Organizations such as Everything ALS, the National Multiple Sclerosis Society or the Alzheimer’s Association for help lines, training and community resources for a specific illness
— An aging life care professional, a paid social worker who attends to the needs of the caregiver as well as the patient
6. “This is your purpose/your calling.”
Along with the dreaded “Everything happens for a reason,” these words assume the caregiver shares your sense of a greater plan that includes their loved one’s suffering and their own difficulties.
Using spirituality to avoid emotional pain is not helpful.
“This can feel like spiritual bypassing and may minimize the pain and reality of the situation,” Adams says. “Supporting a caregiver means engaging with pain, exhaustion, grief or even resentment: Emotions that many people aren’t comfortable confronting.”
What to do instead: Validate the importance, meaningfulness and difficulty of the caregiver’s role to help them feel seen.
“Avoid comments that minimize, romanticize or generalize the caregiving experience,” Barlam says. “Use empathy and language that validates their challenges.”
7. “Think positively.”
As with spiritual bypassing, using toxic positivity ignores the complicated feelings caregivers experience.
“Caregivers often carry complex emotions: love, guilt, frustration, grief (and) exhaustion. Without a safe space to share those feelings, especially if people respond with ‘just stay positive,’ the caregiver can feel misunderstood and silenced,” Adams says.
What to do instead: Rather than telling them how or what to feel, give caregivers the space to express whatever they’re feeling, good or bad. Simply sit down, give them your full attention and have a conversation.
“Ask them to be completely truthful, which opens the door for them to say what they really feel,” Navar says.
By engaging in “active listening,” the listener demonstrates concern in a nonjudgmental way,
8. “At least your loved one is still alive.”
This one often comes up with caregivers of loved ones with dementia or Alzheimer’s.
“One woman caring for her husband told me a friend had said, ‘At least he’s still here,'” Bruch says. “What they didn’t see was how painful it was to watch the man she’d shared her life with no longer recognize her.”
Some may think a comment beginning with “at least,” such as “At least you get to spend time with them,” points out a silver lining, but it’s probably going to come across as condescending.
In addition, it’s never helpful to tell someone that what they’re going through isn’t as bad as it could be.
“This invalidates the caregiver’s grief or pain, especially when dealing with a loved one whose personality, memory or independence has drastically changed,” Adams says.
What to do instead: For caregivers of those with dementia or Alzheimer’s, acknowledge how hard it must be to watch a loved one change, Adams says.
9. “He/she probably doesn’t even know what’s going on.”
Caring for a loved one who needs memory care and isn’t aware of their surroundings doesn’t necessarily make it any easier.
Statements like this ignore the pain of seeing someone you love in that state.
Bruch grew up with a grandmother who had dementia and saw this firsthand. “I watched my family carry that role, often without the understanding or support they deserved,” he says. “People would say things like, ‘She probably doesn’t even know what’s going on,’ which, though well-meaning, felt dismissive. It didn’t acknowledge the grief of losing someone in slow motion or the constant emotional labor.”
What to do instead: It’s not necessary to make the caregiver feel better — you probably can’t anyway, and you could end up dismissing their stress, grief or emotional fatigue.
“Consider, ‘I imagine this is both rewarding and really tough. What’s it been like for you lately?'” Adams says.
10. “You chose to do this.”
For many caregivers, taking on the role may not have felt like a choice, but rather something they had to do. This assertion ignores this complexity, and guilts the caregiver about any negative emotions they express.
“It suggests they have no right to feel overwhelmed or frustrated,” Adams says.
Even when framed with less blame, such as, “You must really love your husband to choose to do this,” the comment is reductive.
“It frames caregiving as a choice made purely out of love, when in reality it’s often complex, exhausting or done out of necessity,” Barlam says.
What to do instead: Acknowledge and validate the caregiver’s role. Caregivers may feel unappreciated or invisible, as if their own identity is fading as they focus on their loved one.
“When people don’t acknowledge that shift, it can be very lonely,” Adams says.
Bottom Line
Many people feel unsure how to help caregivers or fear saying the wrong thing, so they say nothing or offer vague reassurances, but neither is helpful.
“Because folks don’t know what to say, people avoid conversations, and that can be a lot worse, as it leads to the caregiver feeling avoided and neglected,” Barlam says.
Simply checking in can help caregivers feel connected.
A heartfelt message, without expecting a call or text back, is best.
“Often, people think support needs to be grand or perfectly worded, but the truth is, simple, consistent kindness, presence and good intent — checking in, offering time or respite, acknowledging the caregiver’s role — can be deeply meaningful,” Bruch says.
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Hiring an In-Home Caregiver: What to Consider
10 Things You Should Never Say to a Caregiver originally appeared on usnews.com
