IMNSHO: The Top Ten Things NOT to say to a Caregiver

Posted by Scott, Volunteer Mentor @IndianaScott, Dec 1, 2016

This one is long, but I wrote it for CNN.....not sure anyone agrees, but it is just my two cents plain.

Anyone who is, or has been, a caregiver knows the following: “Caregiving ain’t for wimps!”

It takes everything a caregiver has and on some days it demands more than we have. But just like the Energizer Bunny, caregivers do their best to keep on going, and going, and going, and.....

In my fourteen years as a primary caregiver I have learned to try and be levelheaded in my daily efforts. However, no matter how well-meaning they might be, when someone utters one of the following phrases to me the words drill into my ears and cause me craziness. It then takes me more than a few moments to defuse my reaction and lower my blood pressure.

So in the interest of keeping a modicum of peace in the world of caregivers, I offer these statements, which in my humble estimation should never leave anyone’s lips within earshot of a caregiver.

1) “You are a saint.” The hell we are! We know better than anyone we are not. We have our moments when our patience is drawn too thin, when we overreact, we hurt more than usual, are sleep deprived, or simply cannot manage all the demands that are coming at us at the same time.

2) “You need to take care of yourself.” Guess what? Every primary caregiver knows this, especially since after ‘you are a saint’ it is the phrase we hear more often than any other. The catch is that when you are taking care of someone else fulltime how is it that magically we can put all that on hold and go take care of ourselves? You want caregivers to take care of themselves, then prepare to offer more than just these words.

3) “You need to take some time for yourself.” This one is particularly rich. Time for yourself when you barely have time to go to the bathroom, take a shower, get the clothes washed, the bed changed, the meals prepared, the dishes washed, the bills paid? Think about it…chief cook, bottle washer, and caregiver.

4) “I wish there was something I could do to help.” Caregiving is extremely isolating. Sure, a caregiver is with their patient 24/7, but that is far different than any semblance of normal social interactions. No matter where you are, no matter how far away you are, there ARE things you can do. They don’t need to be big either. Small works just fine. You can reach out with a letter, an email, a call, or a card. You can send a flower, a photo, a joke, a book you like, a clipping from the newspaper, have a pizza delivered. Even the tiniest of tokens says ‘I am thinking of you and I want to help ease your burden’.

5) “How do you do it?” I’ll let you in on a caregiving secret here. There is NO magic pill, potion, or system for how any caregiver manages. How we do it is the same way a juggler keeps 10 balls in the air. We do it the same way a house of cards is built, and we, more than anyone, understand that caregiving is exactly that…a house of cards. One small change and the whole system can crash. Half the time it seems like we are doing it with smoke and mirrors, but at least it gets done.

6) “You should get some help.” Great. Thanks. Think that has never crossed a caregiver’s mind? Let me look back and try and remember whether the last time I thought of this one was before or after the now ex-relief caregiver never bothered to show up for her shift; or before or after the one I had to fire who then burglarized and vandalized our home? Perhaps it was before or after the one who emotionally abused my wife. By the way, are you offering help or just providing me with a platitude? Oh, and speaking of platitudes…

7) “God doesn’t give us more than we can handle.” Don’t ever, and I mean NOT EVER, speak this misquotation of supposed Scripture to a caregiver. First, you could go look it up, but surprise! It’s not anywhere in the Bible. The closest you will come is most likely Corinthians 10:6–13 and that doesn’t say what you may think it does either. So please, please, please! Do every caregiver in the world a huge favor and banish this erroneous statement that, as far as I can tell, only serves to make the one who utters it feel better.

8) “You’ll get your crown in heaven.” See #1 and caregivers are not in this for any stinkin’ crown now or after we are dead, thank you!

9) “How are you doing?” This one is OK, but please only say it in private. I cannot tell you how often I was asked this question in front of the person I was caring for. What is a caregiver supposed to say in response? Right in front of the person you are caring for are you expecting something like ‘gee, I am burning out, exhausted, at my wit’s end, in pain myself, depressed, etc.?

10) “You need to find some time to relax.” See all of the above and then don’t say it again, please.

Interested in more discussions like this? Go to the Caregivers Support Group.

This is so point on! I agree and have experienced the same. People just do not know what to say or how to help. Maybe there is a fear of becoming overly committed to assist long term.

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Just found this this morning and it made my day. I laughed through the whole thing and wished I could send it to everyone. I know who keep making these comments. thank you so much.
It was perfect

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Excellent post. I am guilty of all the above statements. People mean well, but until they walk in your shoes they are clueless. I am now walking in your shoes and I totally understand…

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A former co-worker of mine who had serious heart issues told me that she really resented people (especially close relatives) who'd say, "I'll pray for you" -- and leave it at that.

Nothing against prayer (it can help a lot), but how about something more immediately practical, like some help with housecleaning, or maybe a ride to an appointment? [Her words, not mine.]

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Amen for your comments. I was told all of this plus you are doing it all wrong.

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That was an awesome summary of what alot of caregivers feel. Thank you as a person who feels overwhelmed, happy, sad and many feelings at once. Actions speak louder than words. Again Thank you and God bless you for telling it like it is!

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Wonderful article..my husband's 2 siblings don't no how to spell compassion. I call them the "armchair quarterbacks". They constantly say this must be so depressing. I'm sorry you have to be going thru this. Don't let him drive. You need to quit your part time job and be at home with him???? They live out of time and never visit. My 4 sister live close by. They lift me up with phone calls. You can do this. We are here for you.. the call my husband and get him laughing.

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@beckboop13

Just found this this morning and it made my day. I laughed through the whole thing and wished I could send it to everyone. I know who keep making these comments. thank you so much.
It was perfect

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I was really angry by your comment! I didn't laugh at his story as a caregiver but cried! Do you realize how many caregivers actually died before their loved ones do?! About 70%!!! I was in the hospital at the same time my partner was. She was on a medical floor and I was on the stress management floor. She was released the day before I was. When I was called stating she was being released, I told them that she couldn't come home, she'd have to go to a nursing home. One of the hardest decisions, but best decision for me. She died 6 wks later from COPD! I ENJOYED sort of telling u off. I feel better now...rhank you!

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I’ve only been a caregiver for three years and I agree with everything you said, thank you! I remember when I used to shower every day, when I could travel to see my grandchildren and family, when I didn’t need to wash my hands 24/7 because of another person’s body fluids, when the person I love and care for is no longer the person I married nearly 50 years ago, when I wasn’t sleep deprived and exhausted and the heck with it, I have to run!!

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@jojok

I’ve only been a caregiver for three years and I agree with everything you said, thank you! I remember when I used to shower every day, when I could travel to see my grandchildren and family, when I didn’t need to wash my hands 24/7 because of another person’s body fluids, when the person I love and care for is no longer the person I married nearly 50 years ago, when I wasn’t sleep deprived and exhausted and the heck with it, I have to run!!

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You just spelled out all the things from my "i remember when..." list. I've never heard anyone else mention the missed showers. The physical exhaustion is my current issue. Dr. Advises hip replacement for me. There's no way to make that work, so i carry on with fingers crossed.

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