IMNSHO: The Top Ten Things NOT to say to a Caregiver

@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.

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.....

@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.

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

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!

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!!

I just want to say thank you. I was amazed at how you responded to those comments made to caregivers. They may mean well..but it is hard not to scream silently when one or mkre or said. Actions speak louder then words. Remember someone cares who is a caregiver.

Of all the comments I have read (I'm new to the caretaking game) your comments spoke to me loud and clear. It makes me want to be your best friend on this journey. We are in the trenches..didn't expect to be here..didn't ask for a ticket..and find there is no choice B. We do what we do because marriage vows mean something. For better or worse...but really, did we starry eyed newlyweds ever think about the worse? Never. I would have signed up again even knowing what I know now. We had a good marriage, have great daughters and grandchildren, have had a fulfilled life. Unfortunately, the ending chapter isn't as good, but that doesn't mean you don't bother reading the book. I really enjoyed reading your comments. Thanks.

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.

@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!