Non-Helpful phrases said to caregivers

Hi, @carbry I'm Scott and I hear you! I was my wife's caregiver for 14+ years.

You might enjoy my take on useless phrases folks toss at caregivers:
https://connect.mayoclinic.org/discussion/imnsho-the-top-ten-things-not-to-say-to-a-caregiver/
They still grate on me, for sure!

Wishing you Strength, Courage, & Peace

Thank you! I feel like I should print out your list of phrases and give it to the next person who says I’m a saint. Most days I feel like the devil herself. 😂
Carol

I hate that phrase too!!!!!

This post really hit home with me. It would be so helpful if others just came by for an hour, so I could get a bath or just fold a load of clothes, or talk on the phone in peace. Many days it is as if I have a hyper, angry, jealous two year old in a 6'2" body. If I talk on the phone he gets upset that I am not talking to him or he gets paranoid that I am talking about him. If I fold clothes, he wants to help, but this task is becoming more of a hindrance than a help. (I thank him and refold later.) If I take a shower, he is constantly opening the door to see who is in there, or he decides to cook. Last week I came out after a QUICK shower, and he had a glass bowl of water on the stove ready to turn it on to make oatmeal. (Thoughtful but scary.) If someone would call and instead of saying "Let me know what I can do," just drop off a bowl of cut watermelon, a plate of spaghetti, a small pot of soup - this would help take care of the caregiver. Or, if i can't do things with friends, "why don't you get a sitter?" is not a great solution. Finding the right person to stay with an LBD patient, is a mountainous task and VERY expensive. If others would visit for a bit (even just 30 minites) and let me read, write a thank you note, or just close my eyes and have a moment to shed a tear or two would be such a help. The constant reminders to take care of myself are becoming empty words, because I would love to do that, but it is not possible. This journey is not anything I ever could have imagined. It is constantly fluctuating, changing, unpredictable, and emotionally confusing.
Thank you for starting this post...I needed a place to write this - even if it is 6AM and he is getting up now - so back to caregiving!

This subject hit home with me because as others have said, I am not a saint! What I have found is that I just want to tell a close friend or family member the reality of it all. But no one wants to listen. When I do have the opportunity to have an hour to myself, I actually panic! What should I do? Shower? Actually, get some chores done? Nap? There are so many things to choose from. I do one thing and that reminds me that there are so many other things I should have done!

Exactly. Having someone listen and synthesize without immediately trying to give advice on what we SHOULD be doing on how to fix the situation can often be very comforting. I’m sorry your family and friends don’t want to hear what you need to share. 😕 But many of us totally understand what you’re going through and are glad to listen even if it’s just a written complaint. Sending a smile your way.

Wow. You really have your hands full. I know what you mean about how even a 30 minute period of not being in charge can be a kind of respite. And I am always grateful for friends and family who just step in (doesn’t happen very often) and take over.
Frustrating, confusing, and unpredictable for sure. That’s what this job is. The bowl of water on the stove did make me smile. Too close for comfort, though!
It does help to vent. A bit of sympathy goes a long way!!

People without a clue just say stuff because they feel they have to say something and they don't know what to say. Our prison in our mind, our pain and suffering all emotional. We may even look and act fine but if you are a caregiver you are not fine. Bits and pieces of your mind are stress cracked and broken. Your prison cell is so claustrophobic you can't even move. Instead of all our pain being internal and we were really in a 5 x 5 x 5 prison cell and we were beaten and starved daily where our pain can clearly be seen what would people say ? If they were honest they would say "Sucks to be you, glad it isn't me." Or they try to be helpful and say a derivation of "Hang in there, you are doing great." Just humans being humans.

“You just need to take a short vacation…it doesn’t even have to be a full week. It would really help you. “
Ha. Ha ha ha. My responses have stopped being legit reasons why I can’t do this (they don’t really want to know). Something like, “I am having a terrible time deciding between Fiji and Ibiza. What do you think?” At least they look at me with a bit of jealousy after that.

Ha! That’s a good one. I’ll remember that next time someone suggest me “getting away” for a while. 😂