Compassionate Communication ... For Carers

[Early Girlie]

Hi
I'm sure most people have seen the fantastic piece of writing with advice on Compassionate Communication for the Memory-Impaired. It has helped me no end to support my hubby.
I'm just wondering if anyone has ever written, or seen, something similar, but with guidance for communicating with primary Carers instead?
I see many posts here and on other forums, and experience it myself, of friends and relatives making tactless, insensitive or simply rude comments which upset Carers "at the coal face" and cause a lot of frustration. Or people offering "helpful" advice from a safe distance, or simply being 'invisible'.
If we had a similar piece of writing it might be a good way to let people know how they can best support us, and what not to do! Might make it easier for us to actually speak up, rather than biting our lip.
If something already exists, please can someone share a link? If not, shall we use this thread to create one? I'm happy to pull it all together and summarise it?

EG

 

[LadyA]

Can I suggest the first thing? Don't tell a Carer that they must "MAKE time for themselves" unless you are prepared to help them do that by either paying for or doing some sitting!

 

[chris53]

Good afternoon EarlyGirlie,I wish I had a magic wand or a crystal ball to help us as carers,as people that care,or most important outside helpers/family,to understand dementia and understand how things can shift from being ok one minute to a crisis situation the next trying to live your life and live theirlife for them,can be so hard at times,am sure we all will find ways to make life better for the person we care for but at a cost of negative comments and frustratation of getting a kind word or a few minutes practical help,sadly dementia is not "one size fits all" can only say try to ignore the toxic people who don't understand just how unpredictable this illness is,one day they may have to face dementia,we can't think of how other people see us,if what we are doing is right or wrong,we can only do our very best.

 

[cragmaid]

You mean like how to phrase the answer to..." Now she's in a home, you can get on with your life"?

 

[Grannie G]

Perhaps we can build one here. We have two strong points to start with.


Don't tell a Carer that they must "MAKE time for themselves" unless you are prepared to help them do that by either paying for or doing some sitting!

Now they`re in a home, you can get on with your life"

 

[Casbow]

Perhaps we can build one here. We have two strong points to start with.


Don't tell a Carer that they must "MAKE time for themselves" unless you are prepared to help them do that by either paying for or doing some sitting!

Now they`re in a home, you can get on with your life"

Now he is in a care home you can stop worrying. Ok. I'll tell myself that.

 

[cragmaid]

Just thought of another one...." Do you not get bored, just sitting at home with your Mum/Dad/Gran?????"

 

[Scouts girl]

You mean like how to phrase the answer to..." Now she's in a home, you can get on with your life"?

What life??? I visit my mum every other day in her care home. But am I complaining, no I am not, I still get very upset in seeing her so unhappy and constantly pleading with me to take her home. I'm still racked with guilt that she is not still in her own home and I had to make the awful decision to place her in a care home. Can I get on with my life yes physically to a certain extent I can and know she is safe and being well cared for but emotionally, no, I can't get on with my life as she is constantly in my thoughts. But she is still my mum and until she is no longer with me I can't get on with my life.

 

[cragmaid]

Stop me, if the compassion is getting to you!!

" It's a good job you don't go out to work"


I have lots of Compassionate Comments!!! Mind I used to call them something else!!

 

[nae sporran]

I don't understand why Carers Allowance stops when the one you are caring for is in hospital, by the time I drive in and out twice a day to keep morale up it's usually harder then looking after C at home.

Take a chill pill used to be C's daughter's answer to me getting stressed until I went for counselling and she finally realised how hard caring is. IT really shouldn't need to get that bad. Sorry, something Maureen and Sylvia wrote struck a chord.

 

[Lavender45]

One of the better ones I've had was are you enjoying being a lady of leisure. I cannot remember my reply, but it wasn't what I was thinking!

 

[Beate]

If a carer gives up their job to look after a loved one, do NOT congratulate them on their early retirement!!!

 

[Sam Luvit]

When are you going to get a place of your own (after I've sold up to move in with mum)

Or the best one ... isn't it time you stopped sponging off your mum

And the cleaner, on being let go .. maybe now you'll get off your ar53 & do your mums cleaning for her

Wouldn't it be nice to occasionally be asked how we (the carers) are doing although, it's so rare that when it does happen I tear up

 

[nitram]

How about, at a significant wedding university, 'you've still got each other', my wife had not been able to recognise me for two years.

 

[Scouts girl]

I know people think they mean well when they say these things to us, and just don't realise how frustrating these comments can be especially 'it's not your mum now saying these things but the illness' and 'don't feel guilty, you did the right thing in moving your mum into a care home' I know, I know but it doesn't make it any less sad, upsetting and me feeling totally guilty to see my mum suffer with this awful illness and that I can't wave a magic wand and make it all go away and have my lovely mum back.

 

[Amy in the US]

When my mother was in hospital (the US version of sectioning), from a neighbor of hers:

-when is your mother coming home from the hospital? She would be better off here at home, you know. You need to get her home.

(Well, no, she wouldn't. She can't care for herself, take her medications, eat properly, pay her bills, or generally look after herself. She doesn't sleep at night and lives in a crippling state of anxiety, not to mention filth.)

When we moved my mother to the care home near me, same neighbor:

-you should have brought your mother back home to live, or at least have found a care home place her for her. This is her home and you're cruel to move her away.

(Well, I did agonise over that, but I lived 100 miles away and was killing myself driving to see her/take her to appointments/try to care for her anywhere from 2-5 times per month, for the last two and a half years.)

-why don't you move in with your mother, instead of putting her in a care home?

-why don't you bring your mother to live with you, instead of putting her in a care home?

(I'm not even going to deign to respond to those.)

-You're not selling your mother's car, are you? What will she do when she comes home and wants her car?

(Same neighbor. I hated that lady. Guess what, she's not coming home, and she can't drive, and she shouldn't have been driving for at least the past year.)

-You must feel so guilty, putting your mother in a home. I would never do that to my mother.

-Now that your mother is in a care home, you don't have to do anything for her anymore. When will you get a job/life?

And my all time favorite:

-Your mother doesn't seem that bad. Are you sure she has Alzheimer's?

 

[Grannie G]

He's bored. He needs a project. .....from my sister.

 

[Scouts girl]

If you didn't laugh, you would never stop crying!!!

 

[Beate]

Regarding mobility issues of PWD: "Can't you just ask the council to get you a ground floor flat?"

 

[Beate]

Providing info for a tick box form: "What's you employment status?" "I'm a carer." "For what agency?" "I'm an informal carer for my OH." "Oh, so you're unemployed?"