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Say This, Not That, When Talking to Caregivers

Think about empathy, not orders

 

En español | I've had so much support from friends and family through more than 35 years of family caregiving. But every now and then, people have said things that really frustrate and annoy me. So I reached out to other family caregivers and asked if they had phrases that they also wished people would never say to them.

People don't intend to be offensive. They just might not understand caregivers’ perspectives or haven't thought carefully about what they're saying. If you know someone who is a family caregiver, please try to avoid saying these things that are truly not helpful and may be hurtful.

Say this when giving advice

"You're doing a tremendous job! If you have challenges that you're trying to solve, I'd be happy to help you brainstorm and research new approaches if that would be helpful. I don't want to suggest things you've already been doing or have ruled out."

Not that: “You should …” Any sentence that begins with this comment just makes us feel judged and defensive.

When it comes from people who aren't intimately involved in our caregiving situations and often have no idea of the actual needs of our loved ones, it makes caregivers feel resentful. It's particularly frustrating when people assume we don't know something obvious or haven't already tried what they're suggesting.

Say this when comparing situations

"I'm sure managing family caregiving is difficult and would be a challenge in any family.” Be aware that every family and situation is unique.

Not that: "Caregiving would be handled differently in my family."

Really? How do you know that? Is your situation exactly the same? That's simply not possible. We all play different roles in our families, have different abilities, financial situations, illnesses, relationships and strengths.

Unless or until you are in the exact same situation, you cannot really know how you would handle it. This is especially frustrating when the words come from people who have never met our loved ones. Sharing your caregiving challenges and solutions is helpful; judging ours is not.

Say this to an exhausted caregiver

"Let me cook a few meals for you and your dad. What are your favorite foods?” Or “What time next week is good for me to stop by so you can get a few hours away?”

Or “I'm gifting you a massage, and I'll help arrange for care while you relax."

Not that: “You look really tired. You really need to take care of yourself."

Caregivers are aware that they are tired, have gained weight and have health issues. They don't need you to point it out over and over again. Instead say — and do — something that will ease their stress.

Say this about being too busy

"I see that you are rearranging your life and juggling so much to be involved in caregiving. I realize that if I were a caregiver, I would have to rearrange my priorities, too."

Or “I know you are making a lot of changes in your life to care for our mom. I'm going to look at my priorities and step up to the plate to help, too."

Not that: “I just couldn't do what you're doing because my life is too busy.” “I can't help care for her with all my other responsibilities.” Or “You've put your life on hold to be a caregiver.”

This suggests that a caregiver does not have a busy life and has nothing else to do but provide care, or that a caregiver can stop the clock to put life on hold, which is never the case.

It also implies that your activities, relationships, responsibilities, self-care and work are more important than those same things happening in a caregiver's life, not to mention more important than caring for someone who needs it. A caregiver needs to keep living life, too.

Say this to one giving the most care

"I think it's unfair that you are providing the majority of the care for Dad. That must be frustrating. I'd be willing to help you try to find services to supplement the care you provide” and help pay for them if necessary.

Or “I feel badly that you are providing more of Mom's care. Let's set up a schedule and come up with ways that I can take on more responsibilities."

Not that: “There's always one person in the family who does the caregiving. You're just that person."

Just because all too often one family member ends up taking on the bulk of caregiving responsibilities doesn't mean it's right or desirable.

Say this to show appreciation

"Thank you for what you are doing. It must be very challenging at times, but you keep forging ahead, and I admire you for that. I'd like to do X, Y or Z to support you.”

Or surprise a caregiver with a supportive card, gift certificate, present or anything that makes her feel appreciated.

Not that: "You are a saint.” Or “Your reward for caregiving will be in heaven."

What about now? Caregivers’ ultimate reward is precious time spent with loved ones, knowing they are doing their best for them and being appreciated for it. Believe me, caregivers, myself included, are far from perfect. We often feel inadequate, angry and exhausted.

When you play the “saint” card, it makes us feel as if we shouldn't expect support or appreciation now while we are in the midst of caregiving. It also suggests we are superhuman and don't need support.

Say this when offering assistance

"Would it be helpful if I did X, Y or Z?” Or “I would be happy to stay with her for a while so you can have a break. How about next Saturday, or is there a better time?"

Or “Let's talk about some specific things I could do that might be helpful. Could I run some errands for you? Sort your mail? Water your plants? Come and visit with your loved one? Bring a meal?"

Not that: "Just let me know if you need anything,” or “Let me know how I can help."

It's always nice to offer help, but caregivers often are so overwhelmed and exhausted that it's hard to think of things for you to do or guess what you'd be willing or have the time to do. And caregivers often don't have the energy to reach out when they need support the most.

Say this to struggling caregivers

"I can see how hard this is for you, and I so appreciate and admire what you are doing. I'd like to help [with specifics]."

Not that: “If it's hard for you, then why don't you just put your mom in a nursing home?”

Many people have no idea what this suggestion means financially or how complicated it is to advocate for and care for someone who is in a facility. They assume that a facility takes care of every need, but that's not true. While a nursing home or assisted living might be a good choice for some people, it's not always feasible for everyone.

Say this when you want to stay away

"It's hard for me to see the changes in our loved one, and I know it's hard for you, too. Can you help me get past that so I can visit, help provide care and also support you?"

Try to focus on the person who is ill and his current abilities and needs, rather than the deficits. Grow, learn new skills and help care for the person, or figure out how you might enhance his quality of life. It can be very rewarding.

Not that: “It's too hard for me to see how he's changed due to his illness. I just can't handle seeing him like that, so I can't visit or help.”

This is a very selfish viewpoint that caregivers may hear from other family members or their loved one's friends, particularly when dealing with dementia. If you think it's hard for you, imagine how hard it is for the person living with the illness or disability. It's hard for every caregiver. That doesn't mean it's OK to stay away.

Say this on caring for aging parents

"I appreciate the way you respect and support your parents as they age, and I can understand the challenges of seeing them change over time."

Not that: "Isn't caring for your aging parents just like raising children?"

Please never make that comparison! While our parents’ abilities may change over time, they never will turn into children, and it's disrespectful — and not helpful — to view it that way. Caring for an adult is very different from caring for children in every way, physically and emotionally, both for them and for the daughter or son who is doing the caregiving.

When caring for an aging parent, the adult children may feel like they are losing Mom or Dad little by little. It's a long grieving process. Unless you are caring for a child living with a disability, children grow up and move toward independence while caregivers struggle to support parents so they can remain as independent as possible.

Say this about loss and age

"It's always painful to watch someone you love suffer or change — at any age. I can imagine how hard this is for you."

Not that: “Well, at least your mom had a long life."

Losing a loved one at a very young age is a totally different and horribly tragic experience. I lost my niece at age 19. But that doesn't mean an older person's life is not valuable and their changed abilities or death are not a huge loss. My grandfather lived to be 98 years old, and I was still heartbroken when he died.

Above all, remember that most family caregivers are emotionally invested in this journey. It's full of ups and downs, and, yes, we may be sensitive. You may not be able to see the whole picture, so choose your words carefully and intentionally. We need and value your appreciation, reinforcement and support — and above all your practical help. You would be surprised what a positive influence you can have on our lives with a few well-chosen words.

Editor's note: This article was originally published on December 11, 2019. It has been updated with the AARP Top Tips video.

Amy Goyer is AARP's family and caregiving expert and author of Juggling Life, Work and Caregiving. Connect with Amy on amygoyer.comFacebookTwitter, in AARP's Online Community and in the AARP Facebook Family Caregivers Group.


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