Wednesday, August 15, 2012

You Said What to a Caregiver?

Sometimes I am amazed by the things people say.

I have to believe they mean well.  I want to believe what they were thinking was much nicer than what came out of their mouths.

Or maybe they just didn’t realize they said these things out loud.

In case you need some help in knowing what not to say to a caregiver, here are a few things to avoid and a suggestion about what to say instead.  It might be hard to believe but all of these were said at one time or another to me, my husband or friends who are caregivers.

What People Say:   “Your marriage will never survive.” 

Ouch.  (This, by the way, appears to be one of the most common things said to a caregiver.)

A friend and his wife recently made the decision to modify their home so the wife’s ill father could live with them.  Upon hearing this, several of their well-meaning friends (?) immediately predicted the demise of their marriage.   

Gee, thanks.  This young couple agreed early on (between themselves, thank you very much) they would take care of their parents when the time came so I think they’re pretty solid.

What to Say Instead:  Instead of thinking their relationship is so fragile it couldn’t possibly survive caregiving, how about saying, “When is a good time for me to bring my tools and come help build the new room?”

What People Say:  “Do you know how much stress this is going to put on you?” 

What??  Caregiving is stressful?  Who knew?

My husband has heard this one from family members concerned about him caring for his mom and Robert. 

Yes, thank you, we do have an idea about how stressful caregiving will be.  I also know it will be exceptionally rewarding and, after much thought and consideration, know this is the right decision for us. 

What to Say Instead:  “This sounds like a stressful undertaking but have faith you’re up for the job.  Can I come over for a few hours to give you a little break?“

What People Say:  “I don’t see anything wrong with your caree.” 

Deep breath.

A friend who cares for her husband who was diagnosed with Mild Cognitive Impairment at the young age of 55 years old has heard this more times than she can count.

Apparently because her husband doesn’t have any visible signs of disability, people think it is okay to be dismissive of his diagnosis.   As if this caring wife and mother of a teenager doesn’t have enough to deal with in managing her husband’s medications, adjusting to his having to retire early, his depression from the diagnosis and his impaired memory, she has to justify the “unseen” diagnosis to these misguided people.

What to Say Instead:  “It must have been difficult to hear that diagnosis.  Do you want to get coffee and talk about it?”

What People Say:  “When your daughter is 18 you’ll have to make her do everything herself.” 

A friend of mine has a daughter who lived with a heart defect which went undiagnosed until she developed a related, life-threatening illness at 16 years old.

First, several doctors have already failed this young girl due to either their haste or their incompetence.  She will always need her mom’s assistance managing her numerous medications, doctor visits and therapy appointments.  Telling someone how to manage their loved ones care (in a judgmental way, no less) is probably the least helpful thing a person can do.  This illness has been devastating to this family and they are managing the best anyone can expect.  They need loving, gentle support – not meddlesome edicts.  Doctors have failed them; they don’t need their friends and family to fail them too. 

What to Say Instead:  “You’re doing such a good job with your daughter under such trying circumstances.  Approaching adulthood is difficult for any parent and teen.  Can I help with any paperwork in order to make the transition a little easier for the two of you? Or maybe we could go see a movie for some fun?” 

For the most part, people are supportive and want to help.  Sometimes, their mouths just start working before their brain kicks in. 

Are you a caregiver?  What has been said to you that made you shake your head and what would like to hear instead? 

4 comments:

Nett said...

My personal favorite: oh he knows more than you think he does. I always say: You think? Cuz he eats his feces every so often..what is he thinking at those delicious moments? Yum?

Assisted Living Directory said...

I am learning that most people who judge, and say 'dumb' things usually don't have any experience with or understanding of what they are commenting on.

Trish Hughes Kreis said...

Assisted Living Directory, That has to be true and applies to so many topics. I think we just have to give each other the benefit of the doubt and use these opportunities as a teaching moment. :-)

Trish Hughes Kreis said...

Nett, I love how people not involved in the situation know more than you do - who is in the trenches every day. Hang in there - you know the truth.