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.

@lisab2

@billiekip I love your comment that even knowing that the ending chapter would be a hard one, you would still choose to read the whole book. Yes--that's just how I feel. Thank you!

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I loved that comment too! How very true!

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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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@lisab2 I agree with your take on well meaning comments from loved ones. So often conversations can be only about my husband and his needs, troubleshooting how to care for him, getting him help. I love it when loved ones turn the conversation to me and my needs. I, too, take them as support for and acknowledgment of my needs. There really is nothing they can do at this point but they are clear that they are available at a moments notice for a phone call, coffee, lunch or even staying with hubby while I go out. I assure them I won't hesitate to reach out if I need them.

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@jshdma

This is a comment on the topic "caregiving." The stories are a description of sacrifice/devotion but also of horror. While I am not a caregiver, it is easy to imagine some of the terrible situations that people write about. Having been a close observer of some care-giving situations, I have often asked myself: "why not just walk away (for a few hours)?" Probably nothing will happen. There are some people born to be martyrs-- after all, certain early Christians went into the Roman arenas and were killed (eaten?) by lions. But this is not most people.
Any comments ?

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jshdma
Walking away for a few hours could mean finding my husband on the floor with a broken bone, or all of our important papers pulled out of their files while he looked for a notepad, or, the worst, hours of tears because he was sure I was never coming back and he got scared.

I know it's difficult to imagine this situation if you're not experiencing it. We caregivers don't share all that we are going through. It comes at us so fast that we don't have time to think. Responding just becomes second nature. We're all making this up as we go.

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omg i hadn't seen this til today (or if i had then i had forgotten it) but this could have been written by me...i'm so over these comments being made to me ESP the "you need to take care of yourself" one...and just how in the heck am i supposed to take care of myself and my own cancer battle while i'm continuing to take care of my best friend who has said "enough is enough i'm done with treatments"? oh yea i'm supposed to turn my back on him, leave him alone when he has no one except my husband and myself and tell him oh well too bad you'll just have to go in a hospice house and die alone because i've got my own cancer battle to fight....... uhhh no it don't work that way....THANK YOU for writing this and making me smile today...Lord knows i needed it after the day i've had...

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I’ve heard these as well and cringe. What are some of the comments you have gotten that resonate well with you? Perhaps we can then gently educate those who mean well but haven’t a clue what it is like.
Love and light

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My favorite is call me if you need anything I am always here but they never give you their phone number.

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Yes, I understand everything you are saying. They don’t understand at all. Thanks.

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Hello, thanks so much for writing this. I was beginning to think it was just me who was resenting all of the things you wrote about.

People just don’t understand that you do it because you love the person and care and don’t want to see anything happen That they don’t deserve .
My husband does great with me and I enjoy taking care of him.

God bless all of you who are doing this job. it makes me feel proud. This is what I do.

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@michaelfreese88

Thank you for the excellent article. I would add, "Stay strong," and "Keep fighting," to your list.
Often when I receive platitudes or empty compliments like these I feel irritation or anger. I know the speaker means well and doesn't understand but I still have a visceral reaction. I have found it helps to tell myself that such comments come from a lack of knowing what to say combined with a genuine feeling of sympathy. So I feel sorry for them, a bit, in their lack of ability to better communicate their supportive feelings. I may share this article with selected friends and family.

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Welcome, @michaelfreese88. Are you also a caregiver? I look forward to learning more about you.

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I would like to add one more. This was recently said by a well -meaning friend who kindly reminded me how much my husband and I love each other. Love? He doesn't know my name or who I am. Yes, we did love each other, and we had a wonderful marriage for many years until ALZ destroyed my husband's essence. It is very hard to love a stranger regardless of the deep love you had that bound you together in the past. When you can't share your past, you have no future, and the present is just treading water, it is painful to be reminded of the love that is just a past memory for me and a blank for my husband. Maybe as a caregiver, I'm suffering from PTSD, but right now I feel vacuous. He compiled 27 family picture albums all neatly labeled, and it surprised him that I was in the pictures. I do cherish the memories of our life together and am saddened that my husband can't enjoy them too.

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