I've had so much support from friends and family through 35 years of family caregiving. But every now and then people say things that really frustrate and annoy me. So I reached out to other family caregivers and asked if there were things they also wish people would never say to them. People surely 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.
1. "You should…" This comment just makes us feel judged and defensive. When it comes from people who aren't intimately involved in our caregiving journeys and often have no idea of the actual needs of our loved ones, it makes us feel resentful. It's particularly frustrating when people assume we don't know something obvious, or haven't already tried what they're suggesting.
Instead: Consider saying, "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."
2. "Caregiving would be handled differently in my family…" Really? How do you know that? Is your situation exactly the same as mine? That's simply not possible. We all play different roles in our families, have different strengths, relationships, illnesses, abilities and financial situations. Unless or until you are in the same situation as my family you cannot really know how you would handle it. This is especially frustrating when it comes from people who have never even met our loved ones.
Instead: Be aware that every family and situation is unique. Try saying, "I'm sure managing family caregiving is difficult and would be a challenge in any family."
3. "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." This is a very selfish viewpoint 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 him. Don't you think it's hard for me, too? That doesn't mean I stay away!
Instead: You can acknowledge that it's difficult, but come on — try to focus on the person who is ill. 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.
4. "You look really tired; you really need to take care of yourself." Tell me something I don't know! I am aware that I'm tired, have gained weight, have health issues and more; I don't need you to tell me this.
Instead: Help me take care of myself in practical ways. Offer to cook some healthy meals. Take a night shift so I can sleep. Gift me some exercise classes or a personal trainer who will come to the house. Care for my loved one for a few hours so I can rest.
5. "I just couldn't do what you're doing (or I can't help care for her) because my life is too busy with other responsibilities," or "You've put your life on hold to be a caregiver." This suggests that in fact my life is not busy and I have all the time in the world to be caregiving, or that I can stop the clock to put life on hold — which is never the case. It also implies that your responsibilities, work, relationships, self-care and activities are more important than mine (not to mention more important than caring for our loved one). I need to keep living my life, too.
Instead: "I see that you are rearranging your life and juggling so much to be involved in caregiving. I realize that if I were the 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 also and step up to the plate to help care for her, too."
6. "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, it doesn't mean it's right.
Instead: "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 care responsibilities."
7. "You are a saint," or "Your reward for caregiving will be in heaven." How about now? Our ultimate reward is precious time spent with our loved ones, knowing we are doing our best for them and being appreciated for what we are doing. Believe me, we are all far from perfect. We often feel inadequate, angry and exhausted. Sometimes when you say things like this it makes us feel that we shouldn't expect support or appreciation now, while we are in the midst of it, or suggests we are superhuman and don't need support.
Instead: "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, Z) to support you." Or surprise a caregiver with a supportive greeting card, gift certificate, present or anything that makes her feel appreciated.
8. "Just let me know if you need anything," or "Let me know how I can help." It's always nice to offer help, but we are often so overwhelmed and exhausted that it's hard for us to think of things for you to do or guess what you'd actually be willing or have the time to do. And we often don't have the energy to reach out when we need support the most.
Instead: It's so much more helpful — and seems much more sincere — when people offer specific things they can do. Try "Would it be helpful if I did (X, Y, Z)?" or "I'd be happy to come 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?"
9. "If it's hard for you, then why don't you just put your mom in a nursing home (or other facility)?" Many people have no idea what that 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. Not true. While it's a good choice for some people, it's not always feasible or desirable for everyone.
Instead: "I can see how hard this is for you, and I so appreciate and admire what you are doing. I'd like to help..." (see above).
10. "Isn't caring for your aging parents just like raising children?" Please never make that comparison! My parents will never be my children and I will never treat them that way. Caring for an adult is very different from caring for children in every way — physically and emotionally — both for them and for us. When caring for an aging parent we may feel like we are losing them little by little; it's a long grieving process. Children are growing up and moving toward independence, while we struggle to support our parents so they can remain as independent as possible.
Instead: "I appreciate the way you respect and support your parents as they age, and can understand the challenges of seeing them change over time."
11. "Well, at least your mom's had a long life." I understand that it's a whole different thing to lose a loved one at a very young age — a horrible loss that I've experienced myself, with the death of my 19-year-old niece. But that doesn't mean that an older person's life is not valuable and their condition or death is not a huge loss. My grandfather lived to be 98 years old, and I was still heartbroken when he died.
Instead: "It's always painful to watch someone you love suffer or change, or to lose them — at any age. I can imagine how hard this is for you."
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 so need and value your support, reinforcement and appreciation — and above all your practical help. You'd be surprised what a positive influence you can have on our lives with a few well-chosen words.
She spends most of her time in Phoenix, where she is caring for her 93-year-old dad, Robert, who has advanced Alzheimer's disease. Follow her blog and videos and connect with Amy on Twitter, Facebook and LinkedIn. For ongoing caregiving support from Amy and AARP, text "AMY" to 97779
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