Things not to say to me - rant warning!

[Life]

’How are things at home?/ how is pwd?’ Said at the start of every conversation I‘ve had this week. I get that people are being nice, possibly even concerned, but just for once I’d like to talk about something (anything!) else.

‘I admire how well you are coping’. Said by someone who has no idea how I’m coping, but it makes them feel better about not offering any help.

‘He’s still the same person’ said by people who didn’t know him before and don’t understand how unreasonable and controlling this illness is. Also particularly unhelpful said to our children, who feel rather differently.

‘Living well with dementia’. Well he might be, but the children and me are not ‘living well’, we are surviving.

Anyone else?

 

[Beate]

"You're doing a great job" by people who had no idea what kind of job I was doing.

 

[Amethyst59]

My favourite (not) is ...’oh I think we all have a touch of dementia. I’m always forgetting people’s names.’

 

[LadyA]

"keep on keeping on". I've never figured out what that means!

 

[Life]

So how do you all deal with the (usually) well meaning comments? Let it go? -I’m so tempted to give a succinct answer, but realise it probably isn’t a good idea, that or I’m just not brave enough!

 

[Amethyst59]

So how do you all deal with the (usually) well meaning comments? Let it go? -I’m so tempted to give a succinct answer, but realise it probably isn’t a good idea, that or I’m just not brave enough!

I don’t think any of us are brave enough...or have the time, which is probably why people keep saying these things.

 

[imsoblue]

"How can I help?"
First, it makes me feel badly that I need help. And, secondly because I don't know how you can help. What do you like to do? Instead say, "I'm bringing dinner over tonight" and "I'm coming to sit with OH while you go to a movie."

 

[Rolypoly]

I don’t mind if people ask about pwd/home if I know they are genuinely interested but not when they’re asking because they feel they should. I don’t bother going into any detail with these people, I just say fine, or relate an incident to let them know life ain’t no bed of roses, put that in your pipe and smoke it (this is normally to my line manager who tends to go through the motions of caring, but on the plus side she is very understanding if I have to suddenly dash home to deal with something).

 

[Loopiloo]

My favourite (not) is ...’oh I think we all have a touch of dementia. I’m always forgetting people’s names.’

That one in particular got to me. Others mentioned here also, but that one really did test me when it came to holding my tongue. It still does and even more strongly.
Loo x

 

[jugglingmum]

‘He’s still the same person’ said by people who didn’t know him before and don’t understand how unreasonable and controlling this illness is. Also particularly unhelpful said to our children, who feel rather differently.

‘Living well with dementia’. Well he might be, but the children and me are not ‘living well’, we are surviving.

Luckily I haven't come across people that say this sort of thing regularly, but in my case whilst there are sparks of mum, the real mum disappeared some time ago, and she's still early stages.

and the phrase 'living well with dementia' to me creates a myth for the public who don't realise the issues.

Rant away.

I'm lucky I work in an office with several women with parents in the same boat as mine, so we sympathise with each others struggles (not on a daily basis or even weekly - but the underlying understanding is there).

Despite it being 3.5 years since crisis with mum OH still is in the land of 'it's just old age forgetfulness - it's just normal' - with friends who clearly are in early stages.

.

 

[Bee.quilt]

Worse still are the life long friends of OH who say all the right things when I explain the situation then disappear. Even the only brother (of five )who OH has any affection for has needed a terse reminder from me that he needs to phone. I despair sometimes.

 

[canary]

The ones that really get me are: "but he looks so well", or (even worse) "he doesnt look like he has dementia"

So what do people with dementia look like? Two heads? Green skin?

 

[Suzanna1969]

'Oh my grandma had dementia..'

And as her grandchild you were probably protected from the worst of it. You almost certainly didn't have to change her if she soiled herself.

*Cheerily* 'Well, she did it for you!'

Yeah cos changing a toddler's nappies and an elderly person's sodden pull-ups is EXACTLY the same.

'So how is it going with your parents?'

Do you REALLY want to know? REALLY? OK, brace yourself... *person blanches and takes on appearance of rabbit in headlights*

I never actually said the first two. I DID say the third one a few times. People who ask that rarely genuinely want to know, but I think people SHOULD know.

 

[Life]

The ones that really get me are: "but he looks so well", or (even worse) "he doesnt look like he has dementia"

So what do people with dementia look like? Two heads? Green skin?

I had someone recently say to me that my OH looked better. She hadn't actually spoken to him mind, but he looked 'better'!

 

[Life]

'Oh my grandma had dementia..'

And as her grandchild you were probably protected from the worst of it. You almost certainly didn't have to change her if she soiled herself.

*Cheerily* 'Well, she did it for you!'

Do you REALLY want to know? REALLY? OK, brace yourself... *person blanches and takes on appearance of rabbit in headlights*

I never actually said the first two. I DID say the third one a few times. People who ask that rarely genuinely want to know, but I think people SHOULD know.

You are so right, I think I might have to try that.

 

[Canadian Joanne]

When my mother was first diagnosed, the question I hated most was "Does she still know you?" Then, 10 years later, "I'm sure she knows who you are" when it was patently obvious she didn't.

 

[Lawson58]

Mostly the people I know understand about Alzheimer's from experience with family or friends but just occasionally someone says the 'Everybody forgets things when they get old' bit. True but they don't forget the first twenty-two years of their life, they don't forget how to use a mobile phone, don't forget when they lived in Spain, Portugal or Mexico, don't forget how old his children are and so on.

 

[kindred]

Oh yes. When I got braver, or on the days I was a bit braver, I would say that I only answer questions if they are asked with an offer of help at the end. I think the whole emphasis on memory is a problem. It isn't really the right focus, it's the terrible behaviour, the fear, the aggression, the incontinence (hard one to ever talk about, that. My OH used to make duck models out of his poo. How do you tell anyone that? This is the first time I've ever said, but I'm joining in the rant!! Good on us all.

 

[Josiejo]

Hi,
I have found this thread so true.
No one knows what to say or do unless they have had to go through the sadness & heartbreak of Dementia. Our darling Mum lost her battle on 26.3.18, (and it is a battle and dementia always wins) and one person at the funeral was honest enough to say to me ...I don't really know very much about Dementia, to which I replied, i honestly hope that you never have to.
Living Well with Dementia ......? I had never given this statement much thought as my Mum was definitely were not living well with Dementia at any stage.

 

[70smand]

My mum hid just how bad my dad was from me for years - I think she was trying to protect him and me so she took the brunt of it with lots of cover stories and excuses. Once I realised I didn’t wait for her to ask for help I used to just turn up and plan stuff with dad to give her a break and made sure she always knew where I was when a crisis hit. Family always used to say how well dad looked, and he did, but I wasn’t upset with them, as my mum and dad were quite private people so I had to respect that as they were always used to helping others in need and not fussing about themselves.
One thing that did upset me was a generic post doing the rounds on Facebook that people copied and pasted and asked others to do the same if you knew someone with dementia. It was very negative and was no use whatsoever and I told everyone who posted it how much it upset me because it only showed one aspect of dementia when I was trying to glean some positives whilst helping my mum and dad through it.