The Whitworths of Arizona, bringing science to you in everyday language.

Friday, June 19, 2015

What Not to Say to a Caregiver

This week’s blog is from Lisa Cooke’s Lewy Warriors blog. Next month, I’ll post her blog “How to Help a Caregiver.” Lisa is an active LBD caregiver and has good stuff to share.

We’ve all been there. That uncomfortable conversation with someone who is providing care or dealing with an illness, and we don’t know quite what to say. Do we ask about their situation and risk upsetting them, or do we ignore the elephant in the room and risk upsetting them? Either way, we’re doomed because people in tough situations get upset rather easily. They’re usually exhausted and their nerves are frayed beyond repair.

Recently, I asked the members of an on-line caregiver group for examples of things they wish people would stop saying to them and the responses I received were surprising. I had assumed I was the only one who felt the hair stand up on the back of my neck over silly things people say that shouldn’t matter to me. Boy, was I wrong.

I’ve compiled the list below and attempted to explain why these seemingly innocent comments make many caregivers cringe. You might want to send this to friends or family members who just don’t get the picture.

“You need to take care of yourself.” Oddly enough, this comment was mentioned more than any others by the caregivers. Seems strange that something a person might say in an attempt to sound supportive actually hits the proverbial nerve, until you think about the statement.

First, it’s said so often to caregivers that it borders on cliché. Caregivers know they need to take care of themselves. They read the same articles everyone else does and telling them to do it brings forth a strong urge to say, “Duh.” But the people offering that sage advice fail to offer a plan for how exactly to “Take care of yourself.” How is a caregiver supposed to do that? If their loved one is well enough to be left alone, they don’t need to take a break. If the situation is all consuming, the caregiver either has to ask someone to relieve them or hire an aid so they can take care of themselves. (From Helen: Many blogs on this site are about just to go about taking care of yourself. So important, but just saying it without offering help is understandably annoying!)

Finally, telling a person to “Take care of yourself” feels like a command. On top of everything else the caregiver has to do, now they’re supposed to squeeze in respite somewhere along the way, and if they can’t then they aren’t doing the caregiver thing correctly.

“I read on the internet about this new treatment that can reverse his illness.” or “If she would just exercise and eat right, she’d get better.” Most caregivers are very well read on their LOs illness. It’s doubtful you’ve read something we haven’t seen months or even years ago. We also know about the physiology of the brain. According to the national Parkinson’s Foundation, at the time of diagnosis, more than half of the brain cells producing dopamine are already dead. Those internet treatments will not make them come back to life. If a treatment has merit, our doctors are using it. Most caregivers are diligent in their research and attempts to find something to help their loved ones. They’ve read countless books and talked to other caregivers for tips and ideas. Telling them you’ve found a cure in your twenty minute browsing session is like saying you know more about the disease consuming their lives than they do.

“I know how you feel.” Nope. Impossible. You might have been in a similar situation or maybe knew someone with the illness, but you are not in our shoes. You don’t know about our personal relationships, financial struggles, emotional trials, or any of the other aspects of our battle. And please, whatever you do, don’t compare what we’re going through with an illness suffered by your pet.

“You look really tired.” Thanks. It’s nice to know that on top of everything else, I look like crap.

“S/he looks good to me.” Of course he does. I’m totally lying about his condition. Of course, you’re seeing him at his best because at his worst, we can’t go out in public. He’s also a master at showtiming. If you’re not familiar with that term, that’s when our loved one kicks into his or her best behavior because there’s company around. They don’t do it intentionally, it’s just a natural response to do your best around other people. Once you leave, however, he will crash. The show will wear him out and he will sleep for hours. One of the caregivers in our group says when someone tells him his wife looks good, he responds with, “You would too, if I were your caregiver.”

“Is s/he getting any better?” Nope. Our loved ones have a progressive neurological disease. Progressive diseases progress. You can quote me on that.

“I hope you’re taking him to a good doctor” or “Are you taking her to a specialist?” ::ahem:: Yes. We’re aware we need to take our loved ones to specialists. One of the caregivers in our group was asked that question by a case worker in the healthcare system. Her response was, “That’s a stupid question.” And it was.

“How long is she going to live like this?” Or “If I’m ever like that, I hope someone shoots me.” Despite all the difficulties and challenges we face with this disease, please don’t forget you’re talking about someone we love very much. Imagine if someone made those comments about you.

“Are you sure she needs to go to an assisted care facility?” Or “Can’t you just take care of him in your home? Why are you selling the house where you raised your children?” Gee. I hadn’t really given it any thought. It just sounded like fun. No caregiver wants to place their loved one in a nursing home or to give up their home. It’s every caregivers wish to keep their LO home, but the facts are that eventually there comes a time when the caregiver needs help. If they can afford hiring 24/7 aids to come to their home, then that might be an option.

But the bottom line is that unless you are willing to move in with them to help with the care, don’t judge. The decision to move our loved one to a facility, or to sell our home is one of the hardest we have to make. Hours of research, sleepless nights, and tears go into that decision. It’s not taken lightly. One member of our support group said her daughters thought she shouldn’t sell their family home and move to a one story, despite the fact their home was two stories and she couldn’t get her husband upstairs to the bathroom. They said, “Dad wanted to stay here until he died.” She replied, “But what am I supposed to do with him between then and now?”

“If I were in your shoes, I’d be really depressed.” Or “I feel so sorry for you.” Staying positive and upbeat is the hardest challenge we face. Despair and depression are always at the edge, creeping toward us like a reptile. We don’t need or want pity. Call it pride, or whatever you want, but don’t remind us that we’re pitiful. No one wants to be thought of in that manner.

“You’re a saint.” Or “You’re so brave.” Not even close. There are days we want to run away, screaming like banshees, but that’s not an option. No one chooses to have this thrust upon them and even though you might not believe it, you would do what we’re doing if you were in our situation. I don’t know who it was who said, “You never know how strong you are until being strong is the only option you have,” but I’ve found that to be so true in recent years. Or as my mother always said, “You just do what you gotta do,” and Momma was right.

Thanks, Lisa. Readers, feel free to comment on your own pet peeves!

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

1 comment:

  1. Your words are right on. My husband passed 18 mos ago from LBD. I think I heard everyone of these comments. People were trying to help. They just did not know what to say.