Some things simply shouldn’t be said. When they come from people who don’t understand what you are going through, even well-intentioned comments and questions can be frustrating and hurtful.
Cindy Laverty, caregiver coach and author of Caregiving: Eldercare Made Clear and Simple, offers examples of phrases that can leave caregivers thinking, “Did they really just say that?”
What Not to Say to a Caregiver
“Why are you having such a hard time being a caregiver?”
Usually voiced by someone who has no experience caring for someone who is ill or elderly, this question can be very difficult for a caregiver to hear. Laverty points out that this sentiment effectively diminishes the role of providing care for a loved one.“We haven’t seen you in such a long time. Why don’t you get out more?”
Although it probably comes from a place of love, Laverty acknowledges this as an unproductive way to express concern for a friend or family member who is a caregiver. “The truth is that most caregivers do need to get out more, but this is an insensitive way of saying it,” she says.“You look really tired. Are you making sure to take care of yourself?”
Caregivers generally have a good reason for looking tired and frazzled—because they are. “The biggest issue is that they tend to sacrifice self-care. It’s the first thing that goes,” Laverty admits. Caregivers look tired because they rarely get enough sleep. They often spend their nights worrying and making sure their loved ones don’t wander or fall down. However, that doesn’t mean they appreciate having this fact pointed out to them.“Caregiving seems like a burden. You shouldn’t have to sacrifice your life for your mother.”
Caregiving is hard. That’s why caregivers and non-caregivers alike refer to it as a burden. But, according to Laverty, when a friend or family member compares caregiving to a burden, what they’re really telling the caregiver is that they aren’t handling the situation properly and that this isn’t what they should be doing with their life. “Caregivers accept this role because they are loving, caring people trying to do the right thing,” she says.“You need to get a ‘real’ life.”
As the old saying goes, you’re preaching to the choir. “Every caregiver understands that they need to start making time for themselves, their goals and their future,” Laverty says. But, telling a caregiver to get their own life is like telling them that what they’re doing now (caring for a loved one) isn’t a good use of their time or effort.“Why don’t you just put your mother in a nursing home? It would be better for everyone.”
Laverty says that comments like this can make a caregiver feel like they’re not doing a good job taking care of their loved one. The reality is that a nursing home might not be financially feasible, or a caregiver may be trying to keep their loved one at home for as long as possible. Outsiders think they’re offering good advice, but they rarely understand the details of the situation. Comments like these might (unintentionally) make a caregiver feel trapped and guilty.“Why do you visit your dad so much when he doesn’t even know you?”
If a caregiver is looking after someone who has Alzheimer’s or another form of dementia and lives in a long-term care facility, people may ask why they bother to visit someone who doesn’t remember who they are. “People need human contact and love to thrive,” Laverty emphasizes. “Elders in long-term care also need someone to advocate for them. Caregivers shouldn’t question going to visit someone who doesn’t recognize them. As long as they know who their loved one is, that’s all that should matter.”“Don’t feel guilty about…”
Caregiver guilt just naturally comes with the role, Laverty explains. We want to fix everything, solve every problem and ease every hurt, but the reality is that no one can do it all. When people tell a caregiver not to feel guilty about something, it can make things worse by bringing that guilt to the forefront of their mind.“Let’s not talk about caregiving. Let’s talk about something happy and fun.”
When it comes to your average small-talk scenario, caregivers generally don’t have a lot of fun and lighthearted things to contribute. Laverty says people should understand that caregivers need to be able to talk about what’s going on in their lives. Friends and family members should take the time to listen to what a caregiver has to say, no matter how unpleasant it is.“You must be so relieved that it’s over.”
When their care recipient dies, a caregiver is likely to be facing a whirlwind of difficult emotions. Relief may be one of those feelings, but Laverty believes it’s never productive to point this out to a person who has just lost a parent, spouse, friend or sibling. “If you diminish this person’s passing, you also diminish the life and effort of the caregiver,” she points out.“When are you going to get over it and move on?”
Grieving is an individual process. For most people, processing the death of a loved one will take some time. This is particularly true of caregivers who have poured a significant amount of time and energy into looking after their care recipients. Finding a “new normal” doesn’t happen overnight.
Tips for Responding to Callous Comments
Conversational courtesies tend to fly out the window when intense situations (like caregiving) and strong emotions collide. Caregivers already have a largely thankless job and tend to exhibit heightened sensitivity to criticism. “Everything seems to affect you more because you’re under a lot of pressure and trying to do a million things in a day,” Laverty recalls.
It’s easy for a stressed-out caregiver to take a well-intentioned comment or question the wrong way and snap at whoever said it. Laverty has a few suggestions for caregivers on the receiving end:
- Respond calmly to whatever is said.
- If you’re hurt by someone’s question or comment, say, “I know that you really care about me, but what you just said didn’t feel good. Here’s why…”
- Use these comments as an invitation to ask for help. For example, you could say, “I’d love to figure out how to make more time for myself. As my friend, would you be willing to sit down and brainstorm ways to help me balance being a caregiver and having time for my own life?”
Conversely, friends and family members bear some responsibility for expressing their concern in appropriate ways. Laverty’s advice to them: Put yourself in the caregiver’s shoes for a moment. Thinking before you speak will help you avoid saying something stupid or hurtful.
Interactions between caregivers and their family and friends have the potential to be supportive and fulfilling for both parties. When in doubt, follow the golden rule of treating someone how you would like to be treated. As Laverty says, “We get these packages that are labeled, ‘handle with care.’ Why don’t we make efforts to apply that initiative to each other?”