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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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Hello, Colleen ---- Thank you for welcoming me. I've become caregiver for my soon-to-be 85 year old husband. He has fallen several times, the worst and most recent was one year ago ---- chipped vertebrae, small brain bleed, broken nose and doctors beginning to recommend a hospice discussion. My wonderful husband has four types of heart failure or heart disease, lots of arthritis, type 2 diabetes which is now insulin dependent, and stage 4 kidney failure, and some cognitive decline. When he fell last August the kidney failure suddenly dipped into light stage 5, very scarey. But he has stabilized since those early months of his body reacting to the injuries. I have become the one responsible for the home, finances, driving, etc. He has become very inactive, needing naps throughout the day, etc. His entertainment is television and slot machines at casino 30 miles away. I drive him there several days a week because he has so little activity left. (I hope I'm not over-sharing). During this past year, my husband has become much weaker, more tired, and much more wobbly while walking. He's also much more disconnected socially and emotionally. We used to have fun and tender conversations, but they almost never happen anymore. That's my biggest struggle ---- the loneliness of missing my best friend. We both have the best health care in the world. His family physician, nephrologist, and cardiologist have worked together continuously to give him the absolute best unified care, taking all health concerns into consideration. I really need to adapt to this change and stop harshly criticizng myself as a failure if he gives me any minor criticism. I've already learned a lot by reading these contributions in Mayo Connect. I thank you greatly.
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9 ReactionsSpot on. No one even asks me if I need any help. But I'm not having a pity party. No one would come! This is a good read. Thanks for sharing. Just what I needed.
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4 ReactionsThe Calvary is not coming - another great post in addition to this one.
I got a super bonus caring for my DLB husband - two kids too!
I LOVE the one - "you got to take care of you!". Yeah okay, want to take over 2 hours so I can get a haircut? Didn't think so!
Its sad. My husband's family doesn't even call or anything, haven't heard from them in years. After his DLB diagnosis, everyone disappeared.
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4 ReactionsYes! Yes! Yes!!!
I’ve heard them all!! lol
I was a caregiver for both of my parents! It was hard but like many others, I’m so thankful I was there with them at the end of their lives!
I think that is the greatest gift I could have given them. I do miss them every single day. Believe it or not, I even miss the awful things like changing diapers. It was as hard on my mama as it was on me. Humiliating but we kind of joked a bit to get through it. Yes you miss those things. 😢
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6 ReactionsThank you for nailing this thought train so well!
I'd like to start a Fantasy Wish List of what we'd really like to hear. Could we start with - #1 What can I do to help you? #2 Could I bring a meal one evening a week to give you some time off? #3 I'll come stay with your loved one for several hours if there's somewhere you'd like to go or just to have a break. #4 I'm going shopping, is there anything I can pick up for you? #5 I've got some time tomorrow, is there anything I can come help you with? #6 I'm pretty good with handyman stuff like plumbing, fixing things etc. Just give me a call if you need anything fixed. (That should maybe go higher in this list.)
Feel free to add to this list folks.
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7 Reactions"He seems just fine".
For those of us caring for a loved one who is balancing between Mild Cognitive Impaiment due to Alzheimer's and Moderate Impairment, the family and friends who spend a very short time with my husband and say, "He seems just fine" seems so dismissive of what you have gone through, and are currently going through.
"How are thing going for you two?" sounds a bit more caring.
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5 ReactionsI just found this site with classes for caregivers: https://www.powerfultoolsforcaregivers.org/what-we-do/
It’s all done via zoom so should be easy to access. The classes are on-going so should fit your schedule.
Let me know if you learn anything new!
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2 Reactions@blue2 Amen to that too. "He seems just fine." Uh huh, you should have been here yesterday when he was ranting at the television. I could come up with a hundred of these you wouldn't thinks he's fine if you had to deal with whatever. My husband is trying out a new behavior this week. He's decided to not eat until bedtime. I'm shrugging this one off. It will only last so long, he'll get hungry.
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6 ReactionsI echo this post! It can be so hard most of the time! Hugs to all in this position. I too feel the same way.
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2 ReactionsMy care-giving is recent enough to have to laugh and cry simultaneously. People can be very insensitive when they need to be very sensitive and vigilant with questions and statements when people are dying.
I blame society for this. No one teaches the emotional side of death and dying. And very few people know about the physical side either. I'd also like to add that dying from a disease is a process, not an event like being killed by a car. When someone is struggling to care for a loved one, they don't want advice. They also want to be heard. They want true, honest comfort, even just a squeeze on an arm. I hate the word loss, but what else is it? It's the worst pain that most people will experience, and then it's worse than that.
Thank you, Scott! I've printed it out!
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6 Reactions