Mum behaves for carers but not for me

[Ray96]

They have started to come in twice a day for personal care and now to feed her too, mainly liquid food, Ensure, shakes, soup, sometimes she refuses but mostly is ok. But with me she refuses all help and gets aggressive even if I offer her a cup of tea or a beaker of water, she has become very paranoid of late too, it looks like delirium when I am with her, I'm her son and main carer by the way. She still smiles and is happy around other people though even if she does not know who they are.

The carers have said that I should not worry and they will take care of her, but its getting to me that she can be so negative and aggressive with me, and she needs more nutrition and liquids per day than what they give her anyway.

The last 3 months its been up and down like a yo yo, her bad behaviour towards me has got worse and worse and is getting me down now.

 

[karaokePete]

I have seen it stated here that people will often react differently to a carer in uniform - something to do with obeying officials.

Would the issues with you have anything to do with failure to recognise who you are, introducing an element of mistrust. The first time this happens it's a bit of a shock but I got used to it and I hope you can do the same in time.

I have had to introduce myself to my wife more than once in the past so maybe you could try that, with a bit of an explanation and some reassurance. I have also seen it suggested that if food/drink is refused to just try again later as if it's the first time. If there is agitation sometimes soft music in the background can help.

If you feel that the current care package is inadequate maybe you could ask for a reassessment.

 

[Ray96]

Thanks Pete, yes 3 visits a day was suggested but I never realised that she would become so negative towards me, it may well be the way forwards. I will try to introduce myself to her again, that sounds like a very good idea that I didn't think of. Maybe get a doctors coat too.

 

[Grannie G]

There is something called `hostess mode` which ridiculous though it sounds is used by many with dementia to people other than primary carers.

 

[Sam Luvit]

Aggression & distrust to the main Carer seem quiet common unfortunately. Mum certainly followed that path Although it feels very personal. It isn’t. It’s the blooming disease

I’d walk in the room & offer “cup of tea, Mum”, if I got an aggressive “no”, I’d walk away, wash up, go to the loo (I spent a lot of time going to the bathroom ), then walk back in, smiling, “cup of tea Mum”. Sometimes the second & sometimes the fifth “cup of tea Mum” wouId get a response of “oh, yes please”

Sometimes, I’d just make her a drink. She liked cappuccino, (I’d buy the instant packs in £land), given with a biscuit That was never refused. But I’d only do that once a day.

Other times, making myself a drink & one for her, then sitting with her as I drank, encouraged her to drink it. I did the same with food. Somehow eating & drinking with her encouraged her

The main thing I found was not to make an issue of food or drinks. Don't make it a battle than someone has to “win”.

Lots of walking away to let the aggression calm down, lots of smiling when you want to scream

 

[Ray96]

Yes its certainly a rollercoaster ride, I have heard of hostess mode and I can see that with mother, she also likes the company. Today after a bad start she is a lot better, sitting up and smiling, but when she is in that angry/stubborn mode all bets are off. She would quite literally prefer to die than comply.

Yes Sam patience is the only way to deal with this, and lots of it, verging on saintly temperance, and lots of cunning too. I bet you could make a lot of money inventing a Strategy-board game called DEMENTIA!

 

[TheBearsMummy]

Love the idea of a board game which would obviously come with no rule book and no instructions on how to play

 

[Bod]

Thanks Pete, yes 3 visits a day was suggested but I never realised that she would become so negative towards me, it may well be the way forwards. I will try to introduce myself to her again, that sounds like a very good idea that I didn't think of. Maybe get a doctors coat too.

"Doctors coat" Do the Carers that she is good with wear any form of uniform?
Could you get one of the Carers uniforms, or something that looked very close?
She might be ok with another one of them. (When you need to give her more food/drink.)

Bod

 

[Andrew_McP]

Lots of walking away to let the aggression calm down, lots of smiling when you want to scream

That's the one. I find it sometimes helps if I agree with everything horrible my mother says to me, egging her on, if anything, until she seems to think I'm on her side, so she slowly warms to me again. It's a kind of emotional bomb disposal involving hitting the bomb with a hammer until the ticking off stops.

Sometimes the bomb goes off though, so it's not a strategy I would recommend for others without a disclaimer or steel vest. I think walking away is probably a better idea, on balance. But sometimes I need to get the stress out of my system too, and agreeing with Mum about how bad I am is a kind of twisted way of venting about how awkward she can be. I know she can't help it, but my lizard brain doesn't know that.

I've also done the getting changed into different clothes thing. I don't have any uniforms (that I'm prepared to admit to, anyway) but I'm sure that would help. Sometimes putting on a coat and hat, nipping out the back and coming in the front door as a 'new person' can help. I can tell Mum I've sent the other bloke (or woman, depending on who she thinks I am that day) back to the agency and they won't be coming back. It either works or it doesn't, but costs nothing to try.

Today is, so far, a good day. But yesterday everything was a battle for no discernible reason. However even then, when nothing I did or offered was acceptable, if I just left a cup of tea nearby, or some food within reach, five minutes after Mum'd told me she didn't want any of my poison, she'd be quietly eating or drinking.

That doesn't always happen, but persistence is everything. That and a thick skin. And gin*.



*Other forms of self abuse are available; I prefer to eat a whole bag of wine gums if I'm honest, playing Russian Roulette with my kidneys and pancreas rather than my liver.

 

[Ray96]

Well mum is totally toxic today, she slept on the floor last night and refused to go back to bed, we got her up when the carers arrived at 11.30 but she has been very angry since last night when she pushed a glass of water agressively away as I offered it to her and some got spilt on her. The agency have changed one of the carers that she likes again, why do they change carers all the time just as she gets used to someone I have no idea!

Anyway she has not been compliant with them either today, they have said to me that she is a very, very stubborn lady. She finally took her medication at 12 but she is not eating or drinking again today, refusing everything, mouth tightly shut. We have also noticed that her fear of water is getting worse, strange one that.

 

[Bod]

We've found that you have to be very firm with agencies, impress on them that staff have to be consistent, as PWD's respond better to routine, and that means not only times of visits, but far more importantly the same faces, a small team is by far the best. Everybody get to know each other.
It's amazing how many "professional" agencies don't know/appreciate this.
Doesn't like water, will she take orange squash, fruit juice, milk, chocolate milkshake?
Anything non alcoholic will do to wash down medication.
Trick is to find, what she really likes. Then use that as a temptation to take the medication.

Bod

 

[Ray96]

Pineapple juice did the trick a couple of weeks ago, but if anything mum is much worse this time round. Refusing medication again this morning, very stressed, either holding herself very tightly in a ball or picking at everything around her, looks very unhappy. She even managed to spread chocolate all over the table as if she was trying to clean it with the chocolate.

She is on 15mg of Mirtazipine for depression and anxiety, her GP said she may have to got up to 30mg, I don't think that they are very interested at this late stage, Hospice next I would think.

Yes am going to call carers agency on Monday about this chopping and changing of the carers.