What “NOT” to Say
Tuesday November 26, 2024
This blog is not for caregivers. This blog is for caregivers to post or share with family and friends.
Sometimes we just don’t know what to say.
Sometimes we say the wrong thing even though we mean well.
Recently, in a caregiver support group, we were discussing all the things that people say to those caregiving. Things that are meant to be helpful, but to the caregiver it does not come across that way.
Here are some examples of things that are often said to a caregiver that should probably be avoided:
Well-meaning statement: “Well, he/she looks to be doing fine…I don’t think he/she has dementia.”
Reality: Individuals with memory impairment can often “put on a show” and act as though everything is OK. Steering the conversation to safe subjects. Answering questions in a funny manner so they don’t have to give a real answer. Those with memory impairment may engage in seemingly normal conversation and pleasantries, putting their best foot forward. They may focus their efforts into having a “normal” interaction” but with their caregiver, they may be rude, short-fused and unable to really answer questions. They may be very repetitive and need constant reassurance and cues. These behaviors can be missed or not easily visible for those who only briefly interact with individuals with memory loss.
Well-meaning statement: “Well, you know it is only going to get worse.”
Reality: Caregiving is so hard. Having memory impairment is so hard. Caregivers are doing their very best to get through each day. The phrase “it is only going to get worse” does not provide any hope to the caregiver. Instead, it may just dishearten the caregiver. If the caregiver was having a good day, you have just brought forth the fear of all that lies ahead. If the caregiver is already having a bad day, you may have just pushed them over the edge.
Well-meaning statement: When a caregiver retires early or stops working to provide care for their loved one, they may often get asked, “So, what are you doing with all your extra time now that you aren’t working?”
Reality: Caregiving is NOT a vacation. As a caregiver, you don’t get any days off. You are on the clock all the time. Even if the loved one with memory impairment is at an adult-day program or has assistance from an in-home service, caregivers usually spend those hours running errands, making appointments, picking up medications, arranging future care – all the other responsibilities required to maintain a home and a family. Even when the caregivers have some “down time,” they are often physically and emotionally drained.
Free time? What free time? What extra time?
There are not enough hours in the day.
Well-meaning statement: “What you should do is (insert any advice here).”
Reality: Unless you are offering to go over and help, it’s best to not offer unsolicited advice. For the most part, caregivers are trying their best. They are giving all they have and trying 100 different ways to do things with/for their loved one. DEMENTIA IS DIFFICULT! The well-meaning advice usually tends to rub caregivers the wrong way, because they are already doing the best they can and trying everything. From the outside it may seem like there are simple solutions but when you are in the thick of caregiving there are seemingly no simple solutions. The well-meaning advice can often come across rude and leave the caregiver thinking – “if you have such easy advice, come on over and stay with my loved one for awhile and see how it goes.”
Well-meaning statement: “Don’t forget that caregivers need to take care of themselves.”
Reality: When? “When am I supposed to do that?” “Are you volunteering to come over and stay with my loved one so I can take a break?”
What should we say instead?
“I am here for you if you need to talk or vent.”
“How about I come over one day next week for a couple of hours and hang out with your loved one and you can do whatever you need to do?”
“I’m making spaghetti on Thursday. I will drop some by that evening at 6 p.m. Let me know if this does not work.”
“Is there anything on your ‘honey-do list’ that I can get done for you?”
“You are doing a great job. It is obvious how much you care for your (dad/mom/spouse/sibling).”
