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Lack of respect - Carers UK Forum

Lack of respect

For issues specific to caring for someone with dementia.
Hi all,

My mum has a disease consistent with dementia. She was assessed but the consultant responded to her fear and didn't use the word. He referred instead to cognitive defect. She is forgetful, her personality has changed, and doesn't care about much. She has forgotten how to wash her hands so doesn't, and sometimes, she places things in odd places, opens the air tight container with coffee and leaves it open all night, and doesn't think it peculiar. (We keep it in a container for a reason.) In her view, I'm the one with issues; not her.

We have two PAs who cover 9.30 to 1.30, so take mum out, make her lunch and wash up, six times a week. I look after the house, clean it, organise repairs, oversee evening meals, and look after mum when they don't.

The problem is the attitude of the PAs. When mum was breathless and in pain, I wanted her to see a GP but they attributed it to stress and refused. I was pretty sure of things so made an appointment anyway and by the time that came round, mum was keen to go. She had a chest infection and has now had a blood test for ovarian cancer.

The PAs don't respect me. This morning, one brought in the food rubbish bin and placed it on my cardigan and skirt to be mended, both folded neatly on top of my suitcase in the hall. I asked that next time, she might not do that. Her answer was that it was an old cardigan. Then she said 'it's going to be one of those days. Oh yes it is'. I've been rather speechless since, as I don't think you talk to an adult like that.

My friends tell me to move to escape all the stress, which would mean mum having to go into a home. but while I search for something affordable, I'm stuck with the PAs. (They don't really do hygiene, ergo rubbish bin on clothing. They see me as OCD. Something dirty on something clean. No problem in their eyes. One even placed a new kitchen mop outside in the wind and rain as mum asked them to, so flew off into the wet flower bed and a drain. And they weren't going to clean it. Get my drift?) I'm really starting to doubt myself. Fatigue AND OCD?

Mum likes the PAs. If she didn't, I'd look elsewhere. Actually, I have but none really suited us. They weren't willing to do what I want. (After the 10th time that I'd asked an early carer not to dump the washing up in the main basin so I could use it without having to move the stuff, I gave up and persuaded mum she could not have both of us in the house).

The GPs don't recognise the stress of caring, so I've had no assistance there. My physical health has suffered. I've found a private psychologist to offload, though she isn't around for two weeks.

At the moment, I am not speaking to the PA. I did hear say to mum when they returned from shopping that she was surprised they had not been locked out. Why would I do that? Just because she placed a dirty rubbish bin on my clothes? This is between the PA and me.

Does anyone have a suggestion how to deal with comments like 'it's going to be one of those days', when you've asked someone not to do X in future? and if you do place something dirty on something clean, isn't the appropriate response 'sorry'? Am I going crazy?

Best to all carers.
Ellen, I don't know the ins and outs of how these sorts of things are funded (I'm sure someone who does will be along) so I don't know if my 'thoughts' will be of any use but (1) that is an incredibly rude thing that she said and also (2) who on earth puts a bin on top of someone's clothes?? It goes on the floor, surely? I'd have been really fed up about that as well. Doctor's appointments are nothing to do with them so why on earth they felt they should be commenting on that is beyond me and very negligent of them, in my opinion (imagine if you hadn't taken her??).

Do they have a boss/manager you can complain to? If that's too strident can you be out when they are they or avoid contact with them, ie, are there parts of the house you could be in that they would have no need to access? Can you change the provision so that someone comes in to do the cleaning and other household jobs and you do the care for your mum and perhaps just have someone take her out (so that you're not in contact with them and having these issues). I don't know if any of that's feasible due to funding etc but from my perspective if someone's in my house it's my rules and I wouldn't want the level of interference or rudeness that you seem to be having to put up with.
I agree entirely with both of you. I struggle to keep my place as tidy as I'd like at times, it's a busy place, but everything in my home has been bought with hard earned money and I don't want to have to replace any of it until it's absolutely worn out. OK, maybe I do have a touch of OCD, I like to shower once a day, have clean clothes every day, smell nice, but to me that's normal behaviour. I vacuum my carpets regularly, because they are good carpets and I won't be able to afford the same quality next time. I can't help but wonder what the homes are like that these carers come from!! I'd ask for them to be replaced by others.
Thank you for your empathy. I'm afraid that mum owns the house and the carers are self-employed, so I can't complain to their boss. There is none. Haven't found a replacement yet.

Everyone I've talked to has said that you shouldn't place a rubbish bin on clothes. I was nice to her and also asked that she didn't do it again. I felt 'over it' until the gardener told me she shut the garage door with an inside lock so one couldn't get into the garage from the outside. I wrote a request not to touch the inner lock and it's stuck above it but she ignored it. Now I'm miffed.

Mum told me her PA wasn't feeling well today.

An immature person would place the bin on her cardigan tomorrow but sadly, we're all wise old souls here. Was tempting though.