I am very very proud of you for continuing to read all of Outside Looking In!
Boy did I appreciate everyone's constructive feedback for Part 2, specifically your comments on the difference between “empathy” and “sympathy.” Several of you brought up a very good point I feel is worth mentioning before you read Part 3 below.
Some folks felt regretful, and even ashamed, after reading Part 2, thinking their comments to a caregiver may have been insensitive. In my opinion, these sweet folks second-guessed themselves when they thought they may have been inconsiderate or hurtful.
I am pretty darned sure they were neither of those things. Why? Two reasons. Number one, most people live in the sympathetic camp, myself included. We are well-meaning, sincere individuals who never intentionally offend. I would even go so far as to say our words are comforting.
Number two, our Forgive and Forget Community is made up of conscious, conscientious, accountable, and honest people and most importantly, so are the people we hang out with. Therefore, as a friend or relative, you were entrusted with reading Outside Looking In because you possess the same qualities and personal philosophy as our FF Community. You are not, in other words, “The disingenuous sympathizer” I mentioned in Part 2!
Brene Brown’s statement read: “Sympathy can have a tendency to drive disconnection – a “tendency” is not an absolute. She did not say “Sympathy drives disconnection,” only that it has the potential to do so. She and I gave examples of what people say that may not be helpful but can certainly be said with sensitivity and care. Genuine, well-intentioned sympathy is better than no sympathy at all. My hope is that all caregivers, at the very least, have genuine sympathizers in their camp.
Those who are empathetic are rare. Not everyone can get into that pool of murky water, do the backstroke and that fancy flip-turn with us because their life circumstances at the time may not allow them to. However, they are capable of a response that does create connection such as, “I don’t even know what to say right now, but I’m so glad you told me.” Or, “I realize there may be nothing I can do for you but know I am in your corner.” Or, “Let me finish what I’m doing, and I will call you right back.” These responses create trust, and along with that, a deeper connection.
So, thank you for your input and responses, kudos to you!!
Moving forward, as I mentioned in Part 1, the responses to my question, “If you could let someone know one thing that would help them better understand your life as a caregiver, what would it be?” were humorous, and humbling, and all relatable.
I hope these insights are helpful to you.
WHAT THE PERSON WITH DEMENTIA WOULD LIKE YOU TO KNOW,
but unable to say:
*I am still the same person I was before my diagnosis.
*Let’s continue to do the things we have enjoyed doing together even if my responses are different now.
*Ask me what I am still comfortable doing and/or what I may need help with.
*Please do not make assumptions because of my diagnosis. My symptoms may be similar to others with this disease, but they may not be the same as someone else’s. Dementia is complex and multi-layered.
*Ask me how I am doing. I am living with the disease. Dementia is a disease just like cancer or heart disease.
*Do not dismiss me as if I am not in the room. I am still here, and I do matter. Look at me. Look into my eyes while we are having a conversation. I still have, and need, my dignity.
*Try not to pull away from me even if my behavior is now confusing and scary to you. Believe me, it is scary to me, too.
*I understand a smile. A smile has no language barrier.
*I understand a kind touch. A kind touch has no language barrier.
*It is okay if you are scared. That makes two of us.
*It is okay if you don’t know what to do or say. Just be with me. Be. With. Me.
*It is okay if you don’t trust me because of where I am in this disease, just take care of me. Don’t betray me. Make sure I am cared for.
*If I pull away or have become frightened of you, it’s the disease. Please understand that. It is not you.
WHAT FAMILY MEMBERS WOULD LIKE YOU TO KNOW, but are too afraid to say:
*We need time to adjust to the diagnosis just as our loved one needs time to adjust also.
*Be patient with us.
*We will act wonky. Do not judge. We are overwhelmed, exhausted and scared.
*Sometimes we need time to ourselves. We are grieving.
*We appreciate small gestures; mail a card, leave a voicemail, or text an emoji.
Better yet, if you know our sense of humor, send something that will crack us up. Small gestures are terrific acts of both genuine sympathy and empathy. They both are compassionate, and we more than appreciate any and all, truly.
*Ask how we are doing, then listen. If you want to tell us something about your life, and our eyes glaze over, we mean no disrespect. Our world has changed from your world. We cannot focus, and we are pooped. Please understand that. It is not you.
WHAT IS TRUE FOR ME
To Forgive and Forget Subscribers and Members:
I realize a Guide like this doesn’t mean others will suddenly “get” our caregiving circumstances; however, it is something. It is better than the nothing I didn’t have in my early years caring for my Mom.
To the recipient of this blog:
I hope you find Outside Looking In helpful.
THANK YOU for reading this to the end.
You are genuinely supporting the person in your life who has taken on such a tough, yet sacred, job. Showing up and being there for them, on any level, is the most important gift you can ever give them. Thank you again- Vic
As a unique and fun thank you to guests and our Forgive and Forget Community, here’s a code for your brain to crack. They are beautiful words to live by. The photograph is a clue.
Thank you again- Vic
ANSWER ----- Jeopardy Daily Double!! Whihoo!!!! : A 20th Century domestic communications device that offers both numeric and character symbols
on its keypad from 2 to 9?
-What is the telephone, Alex?
469 93 9255 9484 843 276536, 773257 568337 8426 469 93 748 9484 843 47328.