Things not to say to me - rant warning!

[Lawson58]

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.

I think my husband is 'living well with dementia' but then the form his Alzheimer's takes is pretty different to most others here on TP. He is mobile, eats well and still takes care of his personal hygiene.

He still plays bridge four days a week and occasionally gets away to another city for a Congress, all of which he really loves. He doesn't have to pay the bills, clean the house, mow the lawn or do the gardening, he doesn't have to get the groceries, or worry about the car. He has not a sniff of responsibility but is still functioning at a high level. He just ignores all the things he can't do and takes it for granted that I will do everything.

His physical health is the thing that causes him most problems, certainly not the dementia.

 

[Rosie4u]

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

Yes agreed !!!

 

[mab]

The one I found unanswerable (from neighbours) was 'Well, at least he's not violent'.

 

[Izzy]

I'm on the other side of this as my husband died nearly 2 years ago. For me it's comments like 'at least you can get out and and about and go on holiday now'.

I'd give up all of that to have him back.

 

[Beate]

I'm on the other side of this as my husband died nearly 2 years ago. For me it's comments like 'at least you can get out and and about and go on holiday now'.

For me it's "So when are you going back to work?"

 

[kindred]

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.

Yes, I know. I was asked that question out of the blue by a colleague in a full staff meeting. All eyes turned to me. I was able to explain that having to answer that question, let alone in a work context and in public, about my beloved OH was trauma.

 

[Amethyst59]

I'm on the other side of this as my husband died nearly 2 years ago. For me it's comments like 'at least you can get out and and about and go on holiday now'.

I'd give up all of that to have him back.

Oh! That one...I’m getting that now. How happy I must be now that I ‘have my life back’. I’m just speechless.

 

[carolynp]

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

YES!!! Or - as even a dear friend did the other day - the people who say it's best not to put a label on this like you do, when it's just normal ageing really, and people in India/Italy/fill in blank with country of your choice/ take no notice of western diagnostics, respect the aged, look after them within the multigenerational family ...

 

[Fullticket]

Well said Josiejo about the person who said they didn't know much about dementia and you replied "I hope you never do." At least they were honest - although it is something I have had to say to organisations like banks over time, sometimes in a derogatory "I hope you never have to look after someone with dementia" way. I have two friends, one a neighbour who did not say she hoped she could help but positively said she would come and 'mummy sit' for me and another friend who mummy sat for the odd weekend so I could get out and about a bit without having to put mum into respite.
Who writes/produces these generic articles about dementia? I can honestly say that, expert or not, they never hit the spot but I guess that is in common with the professionals who visit with good ideas that you know will never work for you or your PWD.
I, too, got totally fed up with every conversation starting with "How's your mum?" She was fine as fine goes with dementia but I was at screaming pitch sometimes and no-one wanted to talk about me!
Mum died in February and so I am looking back on it with a slightly more practical head now and can see that most if it was just that people did not understand what we on TP all understand only too well.

 

[Beate]

When I gave up work to look after OH full-time, someone congratulated me on my "early retirement". I was speechless.

 

[john1939]

After describing strange behaviour in a local store a "friend" said "surely it can't be that bad"?
My wife had put a plastic mixing bowl on her head and started walking around.

 

[Caz60]

In the midst of my hubby heading towards final stage Lbdementia I was at my lowest point I now realise.While speaking to a distant friend who knew all about it because of an aunt who suffered previously i became very emotional and her reply was "why are you crying".....

I haven't been able to get back in touch with this person as she upset me more than anything that day,why do people do this ,a little understanding is part of life isn't it?
Love to all xx

 

[Izzy]

@Caz60

why are you crying

I'm beyond speechless with that one. I can understand why you haven't been back in touch.

Now I get the 'you must be getting over it now' comments - perhaps not those exact words but that's the sentiment.

 

[Duggies-girl]

People who talk about stress because they spent two hours in a traffic jam or were nearly late for work or some other silly situation.

I want to yell at them.

 

[Peachez]

So he's having a good afternoon, and enjoying a pint with some friends, he goes to the bar , and one of the others leans over to me and asks conspiratorially , "is he better now ? "

that was months ago... and I'm still speechless...

 

[Havemercy]

The thing is what can people say that is helpful? I found the most comforting response when mum was very unwell was something like "tell me what I can do to help". I have said some silly things in my time - unthinking perhaps but try very hard not to nowadays. The risk is that people will avoid saying anything or avoid you altogether . Having been diagnosed with leukaemia and needing to start treatment soon, I have been surprised at some of reactions from friends/family - brother who said he had a friend who died due to the chemotherapy (Thanks!!!) but I know he didn't mean it - it was the shock and awkardness - and so I won't hold it against him!!

 

[karaokePete]

So he's having a good afternoon, and enjoying a pint with some friends, he goes to the bar , and one of the others leans over to me and asks conspiratorially , "is he better now ? "

that was months ago... and I'm still speechless...

Oh yes, having a good time in a bar. People don't understand that a PWD can have a drink in their hand, a smile on their face and engage in small talk at times. A few month's ago we were talking to an old friend in a bar and as he left he leaned in to me and whispered "She seems to be doing fine, there's nothing wrong with her,". As soon as he left our table my wife leaned over to me and asked who he was so I just walked over and told him that she wanted to know who he was - the look on his face was a mixture of disbelief, shock and horror.

 

[karaokePete]

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

Oh boy, do I hate that one. I won't tell you how I reply, but I do reply.

 

[Izzy]

Well I had another this afternoon!

Sadly a friend of mine's husband has died this week after a very short time with pancreatic cancer. I was out with other friends this afternoon and we were all saying how sad it was. One of them said something along the lines of 'well at least with dementia you a while to prepare yourself'. I replied that I thought it wouldn't have mattered how long I had to prepare myself the loss was just as strongly felt.

 

[Amethyst59]

Well I had another this afternoon!

Sadly a friend of mine's husband has died this week after a very short time with pancreatic cancer. I was out with other friends this afternoon and we were all saying how sad it was. One of them said something along the lines of 'well at least with dementia you a while to prepare yourself'. I replied that I thought it wouldn't have mattered how long I had to prepare myself the loss was just as strongly felt.

I’m so sorry to hear about your friend, what a horrible shock for his family. And I’m also sorry you had to hear that comment ....it’s as if some people think grief is a finite thing. You do x amount of grieving before death, therefore only y amount left...and then, job done.
I’m getting now...well, you have been through this before so you know what to expect.