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

Posted by @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.

REPLY

@IndianaScott Thanks Scott, this is just great I especially like # 1, 7 and 8. These are platitudes that just don’t work in any stressful situation! As for #9, rather than asking someone how they are doing, it is far better to say, “It’s so good to see you!”

This is so beautifully, honestly written. Did it get published on CNN? It needs to be common knowledge. I’d like a link to it in published form, if it’s ok with you, to share with others. What a gift your words are for caregivers everywhere. Thank you for writing this!

@concernedmtnmom

This is so beautifully, honestly written. Did it get published on CNN? It needs to be common knowledge. I’d like a link to it in published form, if it’s ok with you, to share with others. What a gift your words are for caregivers everywhere. Thank you for writing this!

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Thank you for the kind words, @concernedmtnmom. It was published by CNN, but back in 2012 and I can no longer find it on their site. Sorry!

Hi IndianaScott:
Just got a few minutes on a Sunday night to tell you how much I enjoyed your article about caregiving. It is one of the best, explains it all.
Probably the isolation is the worst especially on the weekends when there isn’t any interaction with the outside world. I am very lucky in
that I have a very small job that takes me away three times a week for several hours outside the house. And now it is snowing so we
become more contained b ecause of the weather. I know what you mean about personal care: it is difficult some days to get it all done and the phrase I hear most often is “I don’t know how you do IT” even from those that are in the same boat but just haven’t done it for very long.

I was hoping you were OK, haven’t heard from you in a while and because you are from the same area of my recent home, it is nice to hear from someone from home. As you know, Northern Michigan is absolutely beautiful in the Fall and we had a really long Fall this year, so that helped a lot. So the long
isolated winter is upon us; but the good news is that if we are able to travel in a few weeks, we will be able to see family for the Holidays. Can’t wait,

We really don’t have a lot to complain about just yet, but still can’t move about like anything that one would consider normal. There is always the
NEW NORMAL just around the corner as you know better than all of us.

God Bless!! OZYS

Thank you! For writing and posting this.
I would love for this to be a code of conduct, when dealing with caregivers.
Worldwide!
As care giver, of two adults (3 people for 15 years unitl 6 years ago) people have no clue what the life of caregiver,is likes.Until they walk in that life 24/7.
As my first time on here, this was the perfect first reading for me.
I was so pleased to read, that,I am not the only one who see red, when those kind of comments are said.
Just want to add, one more,that, I get told alot.’We all have crosses , to bear’.Yes, that is true, however I wish, my crosses would stop piling up or lighten up or have helpers to help carry them, for wile .Like Simon, carried,Jesus’s cross, on the road to Calvary.
Thank you !

@curlysunflowers

Thank you! For writing and posting this.
I would love for this to be a code of conduct, when dealing with caregivers.
Worldwide!
As care giver, of two adults (3 people for 15 years unitl 6 years ago) people have no clue what the life of caregiver,is likes.Until they walk in that life 24/7.
As my first time on here, this was the perfect first reading for me.
I was so pleased to read, that,I am not the only one who see red, when those kind of comments are said.
Just want to add, one more,that, I get told alot.’We all have crosses , to bear’.Yes, that is true, however I wish, my crosses would stop piling up or lighten up or have helpers to help carry them, for wile .Like Simon, carried,Jesus’s cross, on the road to Calvary.
Thank you !

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Hello @curlysunflowers Nice to e-meet you here and welcome to Connect!

I thank you for your kind words! I got a nice chuckle and nodded my head when I read your addition! Yes, yes, YES!

All too often, since caregiving can be so incredibly isolating, we need someone to, nonjudgmentally, simply know what we are going through!

I admire your dedication and your obvious hard work in you caregiving role!

Know I send you peace, strength, and courage every day!

Peace!

IMNSHO: The Top Ten Things NOT to say to a Caregiver
Scott, do you mind if I post it on my Facebook page? I have three other family members who are caregivers for the long term. A cousin had a brain tumor removed several years ago and then cared for her father when he was placed on 3 days a week dialysis He died last October at the age of 92. Her mother who has Alzheimer’s for a number of years has been living with her also. She has had more than her share of trials over the last several years.

Another cousin is caring for her husband who has stage three lung cancer and her elderly parents. And my sister-in-law who is caring for her husband, who was diagnosed with prostate cancer which has since spread to his bones. He has also had COPD since a severe auto accident many years ago.

I’m sure they would appreciate these words of wisdom.

@rmftucker

IMNSHO: The Top Ten Things NOT to say to a Caregiver
Scott, do you mind if I post it on my Facebook page? I have three other family members who are caregivers for the long term. A cousin had a brain tumor removed several years ago and then cared for her father when he was placed on 3 days a week dialysis He died last October at the age of 92. Her mother who has Alzheimer’s for a number of years has been living with her also. She has had more than her share of trials over the last several years.

Another cousin is caring for her husband who has stage three lung cancer and her elderly parents. And my sister-in-law who is caring for her husband, who was diagnosed with prostate cancer which has since spread to his bones. He has also had COPD since a severe auto accident many years ago.

I’m sure they would appreciate these words of wisdom.

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@rmftucker Please, be my guest! Thanks for checking. Scott

Scott (@IndianaScott) your list lives on the Internet including a great photo and your terrific smile! Thank you for putting this together. My niece has been the caregiver for her dad for a few years and now his health is failing rapidly. I’m hoping it helps me help her.

http://ireport.cnn.com/docs/DOC-1245802

God Bless!
John

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