Finding the right words to say to a dementia caregiver can be tough. Many people think that they’re saying something well meaning but really it comes across are hurtful or lacks compassion and empathy.
I’ve had the strangest things said to me in the past. I’m only sharing a few (I don’t want to embarrass anyone with the most strange I’ve heard!) but sometimes I do want to react or shout mind your words back at them!
5 Phrases to Avoid When Talking to Dementia Caregivers
Knowing what NOT to say can mean as much or more than saying the right thing sometimes. If people use thoughtful words and inclusive language it can make a huge difference to how dementia caregivers and those living with dementia feel.
“The way we communicate with others and with ourselves ultimately determines the quality of our lives.” – Tony Robbins
Here are 5 phrases to avoid when talking to dementia caregivers!
“They’ve Lived A Good Life”
What does this even mean? They’re still here, they can hear you talking about them as if they’re not here. WTF, why do people say things like that. What do they think I’m doing, mum’s lived a good life and that’s it, is it?
No point in my trying to help her continue to have a meaningful fulfilled life living with dementia then?
Is that what you mean?
This one makes my blood boil, and I do normally respond to this one.
First of, stop talking about someone as if they’re not in the room and THEN recognise that they still have a life to lead and I’m working my damnedest to make that happen!
What the hell do they think we do all day?
“You’re Doing It Wrong!”
You’re doing it wrong, whoa! I’ve had people (let’s be honest here, I mean family) come into our home and tell me I’m doing something wrong. Whether that’s cooking a traditional meal, helping mum to sit more comfortably, helping her with personal care etc.
These people have tried to correct me, with no understanding that I’ve made adjustments to everything that I do to fit mum’s needs as she is now.
They have no idea of having to make changes to allow mum to eat safely without choking on certain foods, or that she needs to be moved in a certain way to avoid pressure sores or her hand needs to be supported to eat etc. They just come in and try to correct the way I’m doing something that isn’t the way it was done before!
It’s like they don’t want to accept that mum has changed, that brings me to my next point!
“I Couldn’t Bear To See Them Like That”
This one just makes me sad, because you’re missing out on so much by staying away or not picking up the phone to speak to a loved one with dementia. I had this expressed to me on the phone once, and I was so incredulous at the time that I didn’t say anything back. They just said I don’t know what to say to her, she keeps repeating things, I can’t talk her and they stopped calling.
What was very sad about this one was they used to speak to each other several times a day. I felt so sad for mum.
And I just thought what do you think it feels like for mum now and for me, I’m on my own doing this, how dare you say that to me!
I’m watching mum deteriorate but I’m not turning away from her, when she is in most need. They were there for you when you needed them most and now you turn away from them when they need you, you selfish git!
Sorry relieving some of these is making me really angry!
“You Look Tired”
How to make anyone not feel great, tell them they look tired! Does that statement come with any qualifiers? Are you offering to help in any tangible way? Did you think before you said this? Maybe I was having a good day beforehand, on the back of a great night’s sleep feeling much in better in myself for any number of reasons, how do think that statement is going to make me feel!
If I look tired, it could be that I’ve been looking after mum for over 10 years, and physically & mentally I’ve changed so much from the strain of caring. I’m no spring chicken, and I’ve barely anytime or the inclination to really take care of myself the way I used it. Countless sleepless nights, constant worry & stress takes a toll, it’s just the nature of caring.
But telling someone that they look tired is not helpful, mind your $%@!! words!
Your Sacrifice Will Be Rewarded!
There’s different versions of this one but all mean the same thing, that you’re some kind of martyr and you’ll be rewarded in heaven for what you’re doing now. We come from a religious background and every person that comes to visit, especially if they haven’t seen mum in ages say this to me. I’m thankful that they’ve come to see mum, but I now loathe these words.
I really hate hearing this from every visitor, it’s like a mantra! I don’t care for mum to be rewarded, I do it because I love her and to be honest I didn’t even think about it.
Looking back on it now, I just stepped into the role, I didn’t discuss it with family I just did it and no one has suggested that they want to take over from me, surprise, surprise!
So, no, I’m not a martyr that needs to be rewarded in heaven for caring for my own mum!
Ok, that’s it for now, I have many more but my blood is starting to boil remembering some of these phrases being said to me.
I just wish people would think before they say these things, these are things NOT to say to a dementia caregiver, they lack empathy or understanding, they can make caregivers feel bad about themselves, or question their role or ignore that we also have emotional needs.
What about you? What things have been said to you that make your blood boil, are insulting or make you think that they’ve no clue what we do as dementia caregivers?
Let me know in the comments below, and once I’ve calmed down, I’ll add the second part of all the other phrases to avoid when supporting dementia caregivers! I have at least 10 more, so share what’s been said to you, I’m sure I’ll be able to relate and I can add them to the next blog, not doubt we’ll have some that are similar!
If you’ve just stumbled on to my blog, then sign up to get the latest blogs and tips. I post every Sunday with a life or dementia caregiver tips update. Read my previous blogs below, they might help ⬇️
Carers Rights Day – What Every Carer Needs to Hear!
Understanding the 7 A’s of Alzheimer’s: A Caregiver’s Perspective
8 Gift Basket Ideas for Loved Ones with Dementia
Caring for a Parent with Dementia? How to Navigate Sibling Tensions
Gentle Games for Staying Active With Dementia And Limited Mobility
Solo Caregiving For A Parent With Alzheimer’s
Beyond Self-Care: Finding Caregiver Positivity
Dysphagia and Dementia Care: Moving to Level 2 Liquids and Level 6 Foods
Anna Richardson’s Love, Loss and Dementia
5 Ways to Manage Dementia Caregiver Guilt
10 things Not to Say to Caregivers!
13 Tips for a Safe Halloween for Dementia Caregivers
Coping with Caregiver Guilt During Dementia Progression
10 Craft Ideas To Share with Your Loved One with Alzheimer’s
9 Ways Being A Dementia Caregiver Can Change Your Life For The Better!
A Dementia Caregiver’s Path to Empathy
8 Caregiver Tips to Reduce Swollen Legs and Ankles for Elderly & Disabled
Dementia as a Disability: A Caregiver’s Perspective
Don’t forget to take care of yourself. How I wish I had the time and energy to do that!!!
Yep, that one is definitely on my list, like we don’t know, or have the time or energy as you say! Thanks for sharing.
From my brother (the one who is only five hours away and can’t be bothered to come more than once since I moved in with mom to care for her almost a hear and a half ago): “You shouldn’t have to do this!”
Ha, “you shouldn’t have do this”, lol, did he suggest that he do it instead, bet he didn’t, did he think saying that to you a caring loving daughter that he was diminishing your care for your mum? Sometimes you just want to aaarggghhh. so sorry!
I put my life in storage and moved in to care for my mom. My sister just quit communicating with mom and she needed help. My sister is now accusing me of taking advantage of my mom by moving in here. I’m incredulous truly. We are now not speaking. My mom had ago be placed in long term care. My sister wants to quickly sell her house. She’s so angry that I’m here. Jealousy and greed.
That’s so sad that she doesn’t see that you’re supporting your mum, there’s nothing you can do except be there for her. So sorry your kindness is not seen for what it is.
Sounds familiar but in my case it’s extended family.