If you are just joining us, Outside Looking In is written in three parts, and written specifically for the individual who truly wants to better understand how we caregivers think and feel. As important, it also conveys what our families are going through, and most importantly, what our loved one, stricken with dementia, shares with us.
Parts 1 and 2 are from the caregiver's perspective. Part 3 is from the perspective of the family and the loved one with dementia. Our recommendation is to read Part 1 before Part 2.
These sentiments are honest and raw and offered with the utmost respect.
Let’s continue. . .
WHAT WE AS CAREGIVERS WOULD LIKE YOU TO KNOW, but are too afraid to say:
*If there is a portion of our to-do list you are able to help us with, super-duper. It could be hourly, daily, or weekly, whatever your schedule might allow. Some ideas would be: bring in the mail, walk our pup, feed the kitty, be the Uber driver for our kids, pick up medications, prepare a meal, or even do some needed house cleaning.
Ask us what would be the most helpful to us on any given day. At the same time, please keep in mind two things: 1. We may have a problem asking for help, and/or 2. We may not know what we need because our brains are not working correctly due to the ongoing stress we are under in our caregiving role. Therefore, do make gentle suggestions. See what resonates with us. It is also possible that the time you ask us might not be the best time; however, ask again at a time that may be more appropriate. The smallest favor can save our life. I’m not kidding.
*This job can kill us. The grim statistics are that 67% of caregivers die before their loved one from a stroke, a heart attack or suicide. Keep an eye on us. See if we are getting taken in, or taken down, by caregiving. If you notice anything disconcerting in our behavior, encourage us kindly to find an appropriate Support Group where like-minded individuals understand our lives. You can even urge us to find a qualified therapist in a caring and loving manner.
*Be patient with us. Be patient with our mood swings. We are tired and scared and probably haven’t slept in days, or months, or even years.
*This last suggestion is probably the most important one and deserves more reading time because of that. It is you knowing and understanding the difference between empathy and sympathy. People can have both.
Empathy means you are willing to get in the murky dark waters with us who caregive, doing the backstroke and that fancy flip-turn with us.
Sympathy means you are standing poolside without getting your feet wet. Sympathy offers a benevolent gesture such as, “Your circumstance looks really tough. I wish there was something I could do.” Sympathy is fine, but it does not translate into being helpful. Take notice. That response didn’t ask what they could do to help.
The following stopped me dead in my tracks when I heard it. It is HUGE and clears up what empathy is and why it is very different than sympathy. The following is a verbatim excerpt from Brene Brown’s talk on The Practice of Empathy.
“Empathy fuels connection, Sympathy can have a tendency to drive disconnection.
There are 4 qualities of Empathy:
1) Perspective-taking. The ability to recognize another person’s perspective as their truth.
2) Staying out of judgment – not easy when we enjoy it as much as most of us do
3) Recognizing emotion in other people, and
4) Mirroring and communicating that emotion.
Empathy is feeling WITH people. When someone is in a deep hole, and they shout out from the bottom of that hole, “I’m stuck. It’s dark. I’m overwhelmed.” Empathy is climbing down to be with them and say, “Hey, I know what it’s like down here. And you’re not alone.”
Sympathy is looking down from above, or outside our circle of confusion and darkness and subtly relaying that you’re not getting in there with us.
Empathy is a choice, and it is a vulnerable choice because in order to connect with someone, I have to connect with something inside myself that knows that same feeling of being stuck and being in darkness and confusion.
Rarely, if ever, does an empathetic response begin with “At least.” When somebody shares something with us that is incredibly painful, sometimes we try and silver-line it. Someone says, “I had a miscarriage.” “At least you can get pregnant.” “I think my marriage is falling apart.” “At least you have a marriage.” “John is getting kicked out of school.” “At least Sara is an A student.”
Quick sidebar from Vic: In caregiving, someone says, “My Dad can’t dress himself anymore.” “At least he still knows who you are.” “Mom had to give up driving and it was really tough on her.” “At least she has you to drive her.” “Dad doesn’t know Mom anymore. He thinks she is the maid.” “At least he’s not aggressive or mean.” These responses mean well but are not helpful.
“One of the things we do sometimes in the face of very difficult conversations is we try and make things better, we “silver-line” it. If I share something with you that is difficult, I’d rather you say, “I don’t even know what to say right now, but I’m so glad you told me.” Because the truth is, rarely can a response make something better. What MAKES something better is connection.” -Brene Brown
Word of caution about being empathetic: Be responsible to yourself and know when you need to get out of the pool of murky water. Set boundaries for yourself, otherwise, you run the risk of being taken in and taken down, and that doesn’t do either one of us any good, not you as our friend/advocate, nor us as the caregiver.
What Is True For Me
I'd like to add another type of sympathizer, “The disingenuous sympathizer.” These people are not capable of connecting with us as caregivers on any level. They are unable to even “mean well.” My advice? Take the high road and leave them there. Or, take my suggestion in Part I, unholster your firearm and shoot ‘em in the foot. Save them the trouble.
Learning the difference between Empathy and Sympathy has helped me in the caregiving world as well as in my life outside of caregiving. I can distinguish between the two now, and therefore able to choose what I need in any given situation and go from there.
I hope you can now recognize the difference between empathy and sympathy and decide for yourself who is in what camp. Again, no judgment. People are what they are. And when they show you who they are, by all means, believe them.
The next blog is Part III: WHAT THE INDIVIDUALS WITH dementia would like you to know, and WHAT FAMILY MEMBERS WOULD LIKE YOU TO KNOW. Then you’re done! Whihoooo!
See you there. . .