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IMNSHO: The Top Ten Things NOT to say to a Caregiver
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.
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This is so important. I have heard these same remarks at caregiver support groups, which I no longer attend due to my wife's inability to be away from me, and, no relief from our 5 children or 17 grandchildren. Our daughter calls her faithfully once a week, but rarely do any of them ask how I am doing. After 9 years, I am burned out.
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5 ReactionsOMG i've heard every one of these til i'm SICK of hearing them....and i'm still relatively new to caregiving....i'm overwhelmed, overworked, over tired, emotionally drained, and SOOO tired of hearing these...i'm so tired of #4 and when you tell them what they can do to help, magically there's some reason they can't do whatever it is...
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1 ReactionI haven't read the entire thread, but what are ten things to say instead?
My wife, who has heroically taken care of me since the stroke nearly five years ago, deserves endless praise and gratitude.
Some things I tell her:
1. I love you.
2. Thank you for working so hard for us. (She used to say this to me, back when I could work.)
3. Let me get that for you. (Now that I can move a bit better, I can fetch small things. It helps.)
4-10. [Private stuff.]
Other ideas?
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4 ReactionsHaving worked as a caregiver to a cancer patient for 18 months, I would have to say that the original CNN item demonstrates attitudes harmful to both the caregiver and the patient. Take it easy! Give everybody a break! If they are trying to help, work with them and thank them. Positive words and reinforcement are always what is needed.
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6 ReactionsThey say being direct with your requests is useful. I am in early stages with my husband, and I most like having an hour or so of just straightforward conversation about nothing in particular. I am lucky so far to be able to go to my mahjong one short afternoon a week. It is a real relief. I have tried an online group, but itis difficult to do a zoom class with my person nearby.
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6 ReactionsYes, people are dumb! I am now taking care of my husband as he starts his journey through memory loss. I am blessed as we live in a gated over 55 community and most people here are very kind and will help as we need it. He has always made friends here, so they are very nice to him and don't mind him repeating things. We went through this with his folks. so not looking forward to it again.
We have a neighbor down the street that is starting on this journey too. We compare notes as they have the same doctor and same medication.
We have dogs, so they really help him, so far.
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2 ReactionsI really am starting to take offense with a woman in town I know. She is a huge advocate for a Rife machine??? The first time was in a supermarket, I am a 3x cancer survivor and had been having issues with my health as well. She proceeded to tell me my husband HAS TO try this machine. She names a man from town that completely healed himself with this machine! It's only $15,000 and if I buy it, she will buy it from me when I am finished with it?? Well, the man she was speaking about was in my clinical trial at a cancer hospital. I explain this to her, thank her for her suggestion and she continues on.....I explained that my husband has a very rare cancer etc. and that is just not something that would work with his cancer. Again, she goes on and on.... I wiggle away. A friend of mine that is battling breast cancer see's her, same thing! I almost feel like I should say something to her? Someone could find that very offensive, like if you don't use this and your husband dies it's all your fault! I feel like I have to defend our right to go to one of the top 5 caner hospitals???
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2 Reactions@jhilbish You know, you don’t owe her any explanations at all. Just say “thank you very much for thinking of us, but we just stick with doctors and science.” End of discussion.
She just loves attention and you won’t give it to her!
Do you think you could try this?
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3 ReactionsThis 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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1 ReactionI 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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