10 things Not to Say to Caregivers!

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If you’ve ever found yourself unsure of what to say to caregivers, or maybe said something that was met with a forced smile or silence, it’s probably because you’ve made some comment that has basically missed the mark, isn’t supportive and maybe added to the burden caregivers already carry. Words have power, and we need to be mindful of their impact talking to caregivers.

So below are 10 things NOT to say to caregivers, dementia caregivers in particular. Hopefully they’ll help you avoid the mistakes many people unintentionally make!

“You Chose This Role“

Just because I’m complaining or stressed out by caregiving, it doesn’t mean that you can throw this in my face, “you chose this role.”

No I didn’t.

Many people take on a caring role because of love, duty or it’s a necessity as there aren’t any other options, so it’s not always a choice!

Talking about a caregiving role is very different from actually doing it. It’s hard, we make a lot of sacrifices.

We don’t get any training on what the role entails, you learn as you go, and the majority of us are working many, many more hours than a normal 9-5 job, there isn’t an clocking off time when caring!

So please don’t say this to me, especially as some kind of response to my explaining how difficult the role is!

“You Need to Get Out More” or “Take A Holiday”

I know that this is said with good intention, you want dementia caregivers to take a break or do something outside of caregiving that benefits both our physical & mental health. But the reality is caring for someone with dementia leaves little time for personal activities.

It’s not that easy to take a break. It takes military precision to arrange time away, finding someone to cover for you who understands the complexities of caring for your loved one, making sure everything is there and accessible for them e.g meds, meals, activities, emergency contacts and the guilt & worry of leaving them! Instead of telling me what I already know why not start with an offer of a few hours break first.

So instead of telling caregivers what to do, offer a time to help that gives me a chance to take break, offer to take care of your loved one for a few hours or even better take them out so that we both have an opportunity to be away from home.

“My Relative Had Dementia, It Wasn’t That Bad“

You can bet the person who said that was’t caring for them in any capacity! Every person living with dementia is different, with over a 100 types of dementia, different progression stages and level of support needed. Every case of dementia is different, and while one person’s experience might seem “mild,” others are dealing with severe behavioural issues, aggression, or deep personality changes that feel overwhelming to caregivers. Every person with dementia and every caregivers experience is unique, there is no one size fits all, so stop comparing situations.

“It Must Be Nice To Have So Much Free Time at Home”

And that goes with this comment “At Least You Can Work From Home Whilst Caregiving“

Both are basically saying that caregiving isn’t more than working a full time job. The person saying this doesn’t understand how time consuming looking after someone with dementia can be.

How hard it is for a person living with dementia to accept care and the tight rope balance that caregivers have to walk being supportive & helping to maintain independence.

I can’t imagine trying to take business calls or zoom calls with a loved one “shadowing you” where they feel safest being near you. I can’t even use the bathroom alone, without mum calling out to me for whatever reason. Even when someone is fully independent you’re on tender hooks watching out for any issues, slips, falls, lack of awareness of doing something dangerous.

So no, I don’t have any free time, and if someone is working from home, they have to manage all that & still do their job probably working crazy hours to manage both!

First of all, don’t say it, and if you did, try to remember the body language, facial expressions of the person you said it to, I doubt that you were getting any positive or warm feelings emanating from them!

“You Must Have the Patience of a Saint”

Hate this one, the idea that you’re this amazing caregiver, when we know that life isn’t that simple. There are good and bad days caring for someone living with dementia, some days I am frustrated, angry or worse.

I’m no saint nor is any other caregiver, and it reduces what we do just being patient, caregiving is much more complicated and complex than that. And if people think like that you’re setting such high expectations for us, that we don’t make mistakes, so when we do the burden of guilt we feel can be overwhelming.

So please stop using these terms of impossible standards to live up to!

“I’m Sure There Are Services That Can Help”

Yep, you’d be right, they’re out there. But most them of them have limited resources, waiting lists or limited availability to provide help. And if you’re going to say that to me, you best be coming with a list of resources you’ve researched rather than using this accusatory phrase like I not trying to help myself. It takes a lot of time to find resources that can help and get them at a time that you need!

“Why Don’t You Move Them To A Care Home? Life Would Be Easier For You.”

This is one of the hardest choices for loved ones living with dementia and their families to make. I know many loved ones with dementia don’t want to be a burden and others who fear going into a care home.

This is not an easy choice, but the complexity of care needed may mean you don’t have a choice to ensure your loved one is well supported. There’s a lot tied up in this decision, whether it’s financially viable, the emotional guilt involved, finding the right place that really cares for your loved one, so many variables

But….

the one thing not in consideration by any dementia caregiver is thinking how life would be easier after such a decision!

Don’t Forget To Take Care Of Yourself

I had this comment from a reader on my article on Mind Your Words: 5 Phrases to Avoid When Talking To Dementia Caregivers! It’s a familiar comment to caregivers and it’s meant in a good way.

But her response from being told “don’t forget to take care of yourself” was as she said “How I wish I had the time and energy to do that”

And that’s exactly it, when do we have the time to really take care of ourselves. It takes energy to do things and sometimes we just want rest or someone to offer help so that we can take the time to go out and meet friends, go for dinner, watch a movie or sleep but finding the time to do that is so difficult when caring.

Have You Tried This, I’ve Read That It Could Help?

I know you mean well, but at the moment there isn’t a cure for dementia, and anything you read is experimental or not available in this country or financially viable. There are medications that are out there that can ease symptoms, but there are no cures, and a lot of the dietary things you read about usually apply to helping you reduce your risk of getting dementia.

Let me know about things that can help my day to day life, if you’ve read of a new support group or class for caregivers that I could contact. Dementia affects more than memory and treatment needs are more than just medications, it about emotional and physical needs being met as well.

“You should…..”

Any statement that starts with “you should” to caregiver can be really irritating. It’s so frustrating to hear, you should do this, you shouldn’t do that, it implies that I don’t know what I’m doing, or haven’t tried something before.

It doesn’t induce confidence in caregivers, it can be incredibly rude to be told something that you’ve already done or tried. You really don’t know what caregiving is like unless you’ve stepped into the role for more than a few days without support. Next time, just try to rephrase what you’re say into something more helpful!

Suggestions for Better Communication with Caregivers

Showing empathy and understanding is key to making caregivers feel respected. Here are some tips to improve talking with caregivers.

Practise Empathy and Understanding

Connect with caregivers by recognising their hard work and feelings, just by being there and listening can make us feel supported, if you’re going to offer advice then let it be constructive, supported by actions that we can take forward, that means you doing the work ahead of mentioning it to us.

Put yourself in our shoes, and think how you would feel if someone said what you may voice before saying it to others.

Offer Specific Help Instead of General Offers

Specific help is more useful than vague offers. Say things like “Can I help with the cooking or washing up?” or “Can I take your loved one out for a walk, for a visit or take them to an appointment?” I know I’d be grateful for any real help!

Finally

At the end of the day, I don’t need your advice, I’ll ask for help if I need it, but I do appreciate it when you take time to have meaningful conversation, ask how I am and being there as a friend or someone I can vent to without judgement is what I’m looking for.

Simply put, respecting our decisions, being kind and understanding and thoughtful in how you communicate to us!

Don’t forget check out our other article on 5 Phrases to Avoid When Talking To Dementia Caregivers!

Thanks for reading and let us know in the comments other things that have been said to you that shouldn’t have been or whether any of the above ’10 Things Not To Say To Caregivers’ resonate with you!

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