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If you have a dementia caregiver in your life, you have two jobs: Reduce their stress and make them feel supported. It’s not to fix and it’s definitely not to add to their stress. Make them feel supported and reduce stress. That’s it. Seems simple, huh? I get that it’s not.

On one hand, all it takes is showing up. By showing up, what I mean is simply not retreating. Being there like you always have. In person, on the phone, on text, on Facebook etc. However you’ve communicated and connected in the past, keep connecting. Whether your friend has the capacity to express their gratitude in those moments or not, they appreciate you being there. They appreciate you showing up. And someday they’ll express their gratitude.

On the other hand, what do you say to a friend when you know they’ve been living Groundhog Day since you last spoke? Sure, there are good days and bad days and the details vary, but generally speaking, it’s the same routine every day. You know what they’ve been up to. So what do you say to them? How do you say it? It’s hard.

Granted, the lens I view this topic through is somewhat unique. I’m currently primary caregiver for Mom, living with Alzheimer’s and also a small part of my father-in-law Steve’s care team–as Lindsay is her dad’s primary caregiver ensuring he’s living his best possible life in spite of Lewy Body Dementia. I’m a dementia caregiver myself, and at times, I’m at a loss for words that will help Lindsay. It’s so hard!

Thankfully, I’ve learned to think before I say something. Novel, eh? Well it’s never been a personal strong-suit of mine but I’m learning–and I think it is helping. I run through this mental checklist before making a comment or asking a question:

Is this comment about me? Am I projecting?

What’s the point of this question?

How would I feel if I were stressed and someone asked this?

If I can’t immediately answer, I opt to say nothing–and just listen. Who knew that could be so powerful?

So in the spirit of reducing stress for the dementia caregiver in your life, here are a few things not to say to them. It’s a list shared with love, curated from mistakes I’ve made talking with Lindsay and things that have been said to me by generally well meaning and caring people.

I don’t know how you do it.

This is a super well meaning comment. I truly believe every time I’ve been told this, it comes from the heart and out of a lack of anything else to say. I understand that but it still makes my skin crawl. In my head, it over dramatizes the situation–and makes it about them. What you know is not really my concern at this point. More than that, how am I supposed to respond?

Yeah, well thanks. I’m pretty awesome.

Don’t think so. I wish Mom wasn’t dealt this hand and I wish I didn’t have to be her parent. But life happens and you do what you can to get through it with a smile.

I’ve come to see this comment (and I hear it a lot), as an uncomfortable space filler. If they need to say something, I’d prefer they simply say “How are you doing?”

Why don’t you __________?

It’s worth noting here that I love the word why because it’s an indicator of curiosity. I can’t overstate my appreciation for the word.

Yet as a caregiver, it makes me feel like I stuck my finger directly into a socket. Even if the nature of the question is logical and helpful–doesn’t matter. It’s an unpleasant shock to the system and strong reminder to me that our choice of words is important.

Why isn’t he/she on X medication?

Why is she sleeping so much?

Why doesn’t she go to a support group?

Why aren’t you X?

Why don’t you ________?

It could be the most positive of intent (and usually is), but all I hear is scolding. To my caregiving self, it implies failure.  Instead try:

Have you  _______?

Could you  _______?

Would you ever consider _________?

Would she enjoy __________?

Might it be helpful if he __________?

The intent is more or less the same, but the words change the game for this caregiver.

I know what you’re going through

These seven words make me grind my teeth to the point of a headache. Now, no doubt the commenter lived through an exceedingly difficult time with a family member or someone close to them living with Alzheimer’s or another form of dementia.

In some cases the commenter was in fact a primary caregiver for their loved ones, other times they were not. Truth is, for me, that doesn’t matter. In either case, they don’t know what I’m going through any more than I know what they went through.

Can they relate? Absolutely. Are there similarities? Probably. But the reality is, dementia is an umbrella term spanning a number of conditions–and even if two people have Alzheimer’s, they (and all who love and care for them) will walk a path that is uniquely their own.

When I hear “I know what you’re going through”, I feel minimized. Right or wrong, that’s how I feel. Something as simple as I can relate would be more helpful and much less abrasive to me. Same sentiment, different words. Instead of feeling minimized, I’d feel identified with.

Is he/she always like this?

Yuk. Another question asked from a place of love and compassion. But yuk.

It’s asked most often after a visit. And I understand where it comes from. The person he or she just visited with is no longer the person they know (on the surface). Visits often are an emotionally difficult one-way street and it’s natural, if not easy, for the visitor to forget the person they’ve just visited is the same person they’ve known for decades.

It’s another question coming from a place of love but it offends me. And stresses me out. The guttural reaction I have in my head (but don’t say)  is don’t talk about my mother like that. Overreaction? Probably. But it’s how the question makes me feel.

A better way to phrase it might be: How has he/she been doing? Is this a good day for Mom/Dad?

You haven’t called me back and I’m just looking for an update.

I can feel my hands tensing as I write this. I have no alternative for this one but you need to know:  If you have a dementia caregiver in your life, don’t do this. Do. Not. Do. It.

Their job is not to provide you with updates. Of course part of their job is to keep the person they’re caring for connected with family and friends. Please know that the dementia caregiver in your life understands this and they will continue doing their best to keep you posted on how your shared loved one is doing.

Feel free to visit and call and email as much as you’d like (please do!) but don’t ask for updates. And definitely don’t demand them.

The bottom line

What this boils down to is that it’s not about you. It’s about your friend or brother or sister or niece or nephew–supporting them and reducing their stress. And remember, showing up is more important than what you say–unless you’re saying stuff like this.

What else would you add to the list?

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