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.

@jhilbish

I am NOT the caregiver type at all!! My Mom had a girl that came in and helped as her Alzheimer's progressed. She heard me on the phone before leaving and she said, I could never do that! You are so impressive, one hell of a businesswoman. I said, no, I am in total awe of what you can do. I had tears in my eyes thinking I can't take care of my Mom. Am I a monster? But as things got worse, I had parents moved to fla. where I was so I could help out. Even in assisted living, it's a big job. Dad had emphysema so it was a lot! In Dad's last stages, he was so fragile, the girl that we brought in to shower Dad was too rough when she washed his hair. he asked if I could help. We did not have that type of relationship. I had never seen my father in his underwear, and he was white collar, country club. I was the black sheep. Those precious moments while showering Dad, we had more laughs, tears and honesty than we had ever had. Sometime beautiful things can happen. I gag when I see a kids diaper getting changed, can't wrap gifts, so I'm not the Mommy type. When you are needed, you become capable of things you never knew possible before......God Bless Everyone

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@jhilbish Yes, "you do what you have to do" is often what people say. Probably true. But still, as I think of caregiving, it seems mostly about heroics. Hard work has been my whole life, and it still is. I don't mind all kinds of labor, physical and intellectual. Another aspect of caregiving is that it often happens when the caregiver is already old, and needs help himself, or at least, would like some help. It can make old age miserable.

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@jshdma

@jhilbish Yes, "you do what you have to do" is often what people say. Probably true. But still, as I think of caregiving, it seems mostly about heroics. Hard work has been my whole life, and it still is. I don't mind all kinds of labor, physical and intellectual. Another aspect of caregiving is that it often happens when the caregiver is already old, and needs help himself, or at least, would like some help. It can make old age miserable.

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I can't explain it? I never had kids, not my thing! Never changed a diaper, newborns terrify me. Give them to me when they are three, take them back at 5 or 6. My parents were in assisted living and it was still a lot! I don't think it's about heroic's, if it is, the caregiver is doing this for the wrong reasons........We hired a woman to come in and bathe my father, it's an extra level of care and they had the means thankfully to be in a great place with great care. I guess being his skin was paper thin and he always bruised and had those purple spots etc... He was so frail, when he asked me, I was shocked! And the bottom line is, you can't change it. My husband had stage 4 Neuroendocrine Cancer PNET. I never thought this would happen to us?? I guess you just have to play the hand you were dealt.....

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@jhilbish

I can't explain it? I never had kids, not my thing! Never changed a diaper, newborns terrify me. Give them to me when they are three, take them back at 5 or 6. My parents were in assisted living and it was still a lot! I don't think it's about heroic's, if it is, the caregiver is doing this for the wrong reasons........We hired a woman to come in and bathe my father, it's an extra level of care and they had the means thankfully to be in a great place with great care. I guess being his skin was paper thin and he always bruised and had those purple spots etc... He was so frail, when he asked me, I was shocked! And the bottom line is, you can't change it. My husband had stage 4 Neuroendocrine Cancer PNET. I never thought this would happen to us?? I guess you just have to play the hand you were dealt.....

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@hilbish Yes, everything you say is right. Maybe I would magically rise to the kinds of occasion you mention. I always thought that I can do a lot of things that I was trained for: my professional work as a scholar doing research, house work, cooking, playing the musical instrument I studied, etc. How does one suddenly learn nursing at old age? But there is a difficult family history in my life. My younger sibling was diagnosed mentally ill. But he earned several high-level academic degrees. His illness manifested as being unable to anything practical, and his disease caused him to spend all his money. Bottom line--he always had to be cared for and supported. The entire family fortune and effort was used "caregiving." Somehow I got tired of that, and eventually just didn't agree. That made me the black sheep.

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@jshdma

@hilbish Yes, everything you say is right. Maybe I would magically rise to the kinds of occasion you mention. I always thought that I can do a lot of things that I was trained for: my professional work as a scholar doing research, house work, cooking, playing the musical instrument I studied, etc. How does one suddenly learn nursing at old age? But there is a difficult family history in my life. My younger sibling was diagnosed mentally ill. But he earned several high-level academic degrees. His illness manifested as being unable to anything practical, and his disease caused him to spend all his money. Bottom line--he always had to be cared for and supported. The entire family fortune and effort was used "caregiving." Somehow I got tired of that, and eventually just didn't agree. That made me the black sheep.

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I don't blame you. I am a very no nonsense type person. I moved out to NJ (from NYC) where my family is and I noticed my mother was declining mentally. I mentioned it to my father and sister, they hit the roof? They said I don't know why/what you trying to do......So after a Sunday dinner where the chicken wasn't in the oven etc., then she got lost and I put my foot down! She was evaluated and had Alzheimer's, beginning stages. And I guess it's common sense. but I would watch my sister and Father and think, not only are you being cruel, you're an idiot! They would ask questions and try to get her to remember??? I said, She's not going to remember, you can't re-teach this away. I said I get on the bus with her and go wherever it is that she thinks she's going. I wouldn't be able to watch common sense go by the wayside..... I hope your family kept enough or got long term care. Good luck with everything

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There is some truth in what you say--comments as these can sometimes be unhelpful. I'll offer an alternative view though: As a caregiver for a spouse with a grave medical condition, the fact that family and friends expressed concern for me touched my heart and spirit. Some of these statements helped me overcome feelings of guilt and inadequacy by acknowledging that it is okay to find time for yourself or to ask for help. To be fair, the people in our lives making caring comments often then took action to help us through the difficult times.

Thanks for raising the issue--good to reflect on!

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@lisab2

There is some truth in what you say--comments as these can sometimes be unhelpful. I'll offer an alternative view though: As a caregiver for a spouse with a grave medical condition, the fact that family and friends expressed concern for me touched my heart and spirit. Some of these statements helped me overcome feelings of guilt and inadequacy by acknowledging that it is okay to find time for yourself or to ask for help. To be fair, the people in our lives making caring comments often then took action to help us through the difficult times.

Thanks for raising the issue--good to reflect on!

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I agree with so many things! When we talk to people, whether a caregiver, family member, friend, patient, we all just do the best we can. I listen to so many people say, if it ever happens, the first thing I'm going to is......BS You don't know until you are there and it happens and you seem to know, you just know....And people also do dumb stuff! We had 2 family members that just walked away! And we were both so good to both of them, we had friends walk away. People just don't know what to do. You have to set your own boundaries. AND LIVE!!

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