Mum battling with carers

[Rosie56]

I'm my mother's main distance carer (living in a different county). My brother has also started help after not being interested for some years, which is a very positive development, but he also lives a long way from her. She won't consider moving and I can't move closer to her.

She had some scarily incompetent carers paid by SS and in the end we had to fork out for private care. The new people are a big improvement - Mum is obviously healthier, better fed, better cared for in every way, and the house is a lot cleaner and less smelly (she has double incontinence).

However - the new people come in for longer each day, at times which Mum doesn't approve of (for reasons I won't bother you with, they can't be changed) and precisely because they take more interest in her personal hygiene, she resents them. The old ones used to 'pop in' for 15 minutes, fling down a sandwich and go. She wouldn't let them try to wash her. She won't let me help her with personal hygiene either. She was filthy BUT there was no conflict because they'd given up and weren't actually tackling the hygiene issue at all.

I'm now getting regular furious phone calls with Mum hissing and spitting down the phone: 'Who's this woman? What's she doing here? I don't want her,' 'Did you send her? I want a word with you, we're going to bloody well sort this out,' followed by a long list of things Mum fondly imagines she's doing for herself, like showering, cleaning the house, shopping, feeding herself and administering her own meds. In fact she can no longer do much for herself at all. She tears off the pads the carer lays out for her or coaxes her to wear and stuffs her knickers with toilet paper instead - with predictable results.

I can't find an answer that will pacify her during these calls. My brother and I have tried telling her that the doctor (whom she loves) wants her to have a carer - that worked for a short while, but not now. I've tried 'everybody needs a bit of support as they get older' and 'it's just in case you have a fall, so people would come and find you and help you' and she just screams at me that she never falls (completely untrue). Everything I try fails.

She could be quite fierce and bullying when I was a kid and after many years of not seeing that side of her, it's coming back now. The poor carer is getting the brunt of it.

If I pick my time and phone when the carer isn't there, Mum seems to forget about her and we can actually talk and be friendly. I'm beginning to think I should just leave the answering machine on when she calls about 'this woman' because talking to her is counter-productive. She just stokes herself into a worse rage. What can I say? Has anyone got any suggestions? I also feel sorry for the carer who is doing a really good job but is fought with and insulted at every turn. :-(

 

[Beate]

You probably don't want to hear this but I think it's time for a care home. You live too far and she is personal care resistant. She might be the same in a home but at least she would be safe, with an army of people around her, and staff that hopefully know how to deal with her resistance in a productive way. I don't think it's fair on her or the current carer to let things continue as they are.

 

[Rosie56]

You probably don't want to hear this but I think it's time for a care home. You live too far and she is personal care resistant. She might be the same in a home but at least she would be safe, with an army of people around her, and staff that hopefully know how to deal with her resistance in a productive way. I don't think it's fair on her or the current carer to let things continue as they are.

In fact I agree with you, Beate, but it's not an option. She wouldn't even go into one for two weeks last year (for respite care) so that I could be sure she was safe while I was out of the country- in the end the respite accommodation had to be cancelled. So far she has passed every assessment carried out on her as regards legal capability - she passes the memory test (which IMHO doesn't address her almost complete lack of function - she can't even feed herself without prompting). She also states loudly and clearly 'I don't want to go into a home, I want to stay in this house.' I've been told that while she has legal capability (can form a wish and express it) and refuses to go into a home, her preferences have to be respected. I have no legal right to override them. She has another assessment in September and if she fails this the situation will change, but I fully expect her to pass again.

One of the carers has been able to get Mum to shower but although they have case conferences and have tried to share skills, the others don't seem able to pick up the knack from her. It may be that there's nothing they can do and Mum just likes the face of one of them more than the others - she is surprisingly 'looksist' in her old age. I say 'surprisingly' because she herself was always told as a child she was plain and (quite rightly)resented it, but I suspect she has a strong prejudice in favour of the prettier carers. Still, I'm hoping someone on the forum might have the suggestion that will work the miracle....

 

[la lucia]

She sounds EXACTLY like my mum except it was me not carers.

I'd try and totally avoid the phone calls if possible or divert the conversation "ooh I'm glad you called I need to ask about..... blah blah"

The paper in knickers and cutting pads was my mother's trick, it was awful, caused horrendous messes and so on. I solved it by removing ALL underwear from the house completely and replacing with pull-ups. All pads were also removed or hidden out of sight. If she stuffed tissue down the pull-ups it didn't matter.

I found I had to be totally inventive, sneaky as hell, and start trying to look at the world through her eyes. This meant all scissors were 'confiscated' along with sharp knives, pads, bleach (she would 'clean' with it neat on delicate fabrics etc),

I think you are the target of her fears and frustrations, as I was and still am, at times. Thus if you can find ways to deflect 'blame' it'll help.

I sold day-care to my mum as a 'hairdresser with lunch', and so-on and the increased activities help with her negativity. She now also goes to 'arts and crafts with lunch' all arranged with transport. I never use the word daycare or anything related.

I wouldn't worry about the shower as long as she's getting washed but maybe the 'shower technique' needs modifying? It's hard at a distance but I don't understand why the other carers can't do it? Does she fight with them?

You cop it on the phone so maybe a new answering machine message may help?

It's really hard isn't it and whether you are there or not the pressures of caring are huge. I hope you find some ways round all these problems.

 

[NatB123]

Hi, I'm new here so I hope I am doing this right!
I am having the same problem with my Grandma. She has only just come out of hospital (last Friday) and her partner refused to have carers saying that we could do the caring instead. Since Friday every shower/bath time has seen her battle against me, shouting, swearing, hitting and throwing things.
Unfortunately, I do not have any tips yet on how to make things easier as I'm very new to all of this but I'm hoping that someone may come along on your thread who has some ideas for both of us!

 

[Shedrech]

Hi NatB123

Hi, I'm new here so I hope I am doing this right!
I am having the same problem with my Grandma. She has only just come out of hospital (last Friday) and her partner refused to have carers saying that we could do the caring instead. Since Friday every shower/bath time has seen her battle against me, shouting, swearing, hitting and throwing things.
Unfortunately, I do not have any tips yet on how to make things easier as I'm very new to all of this but I'm hoping that someone may come along on your thread who has some ideas for both of us!

dad became reluctant to shower, I realised there were several reasons - he had forgotten the process; he didn't like getting wet; he definitely didn't like his face/head being under the shower or getting wet at all; he was very unsteady and worried about falling ....
I did for a while manage to continue the showering by making sure everything was ready before he knew he was to have a shower - soaps within reach, bathroom warm, clothes laid out in bedroom, towels all ready ... and I got him undressed in the bedroom, put on a towelling robe, had hand rails for him to hold, then in the shower I hand held the shower head and only wet him from neck down, he used flannels to soap himself and I did his back - I talked him through every step of the procedure and prised him a lot
we only did this 1 or 2 times a week
other than that he had a wash at the sink with flannels - again I talked him through - and also a whole body wash at times - the bathroom needed to be very warm as he felt the cold easily
eventually I did the flannel wash in his bedroom as he wasn't steady at the sink in the bathroom
and I gave him a foot bath a couple of times a week when I realised his feet stank as they were rarely done properly - I made this a pleasure for him - indeed I tried to make the showering pleasant too, and for a woman maybe the pampering side is worth exaggerating ie having lovely scents around, favourite soaps, comfortable robes and towels (though not too thick and not too big as dealing with the weight and size can be a problem), perfume afterwards etc
it's a tricky issue - being both personally intrusive and a difficult procedure to remember
pick you moment and pick your battles - no-one needs a shower every day (my opinion) and not having a wash for a few days is not the end of the world - there are adult wipes that can be used and dry shampoos (I don't wash dad's hair with a shower fixture or even water from a jug, I use flannels again, though his hair is fine and short so it's not too difficult)

and this may well sound rotten, apologies - if your grandma's partner refused care at home because HE was going to do it, then don't take over too much - for his own good and certainly for your grandma's he needs to reach the moment when he realises that they need to have someone come in to support them - otherwise he will rely on you

best wishes to you all

 

[Shedrech]

Hi Rosie56
you've probably already done this - but to go alongside the actual tests that may be done, do write out in detail a list of all your concerns for your mum; all the things she can no longer do for herself; all the things you now do (and/or aren't allowed to do with her reasons why not); all the changes in her behaviour (compare with 1 the 2 years ago) ... be brutally honest - hand/send a copy to all concerned before the meeting so that hey have a wider perspective on her situation
might you even record one of her phone conversations?
it may be that your mum is still deemed to have some) capacity but at least the medics will have a fuller view of what's going on
so very tough when her wants are one thing and her needs are very different
best wishes for the assessment

 

[Pear trees]

My mum used to battle with her carers as well. They were arranged by SS following a stay in hospital after she broke her hip and wrist. She used to hide all her food around the house, and accuse them of stealing her money. She even used to chase non English or non white carers out of the house with her stick, and was verbally abusive to them!
We decided as a family to provide care once her wrist mended as her dementia was not too bad, but, following another stay in hospital we have decided to use a private agency for 1hourly visit and 1 half hour visit daily. She now needs help with all personal care and they will make simple meals and drinks. They start tomorrow. If this does not work long term we will have to consider a care home against her wishes.

 

[Rosie56]

Thank you, everybody, for your suggestions. I've got several new ideas to try out.

I'm amazed that you were able to do personal hygiene with your dad, Shedrech, in awe actually! That was just never going to be possible with Mum and me. Unfortunately perfumed soaps etc aren't a help as she just shouts 'Stinky perfume! I'll get asthma' even though her breathing is fine (she did this even before she had dementia - for years I was embarrassed by her rude comments in public about other people's perfumes - just because she didn't like it, she seemed to think nobody else had a right to enjoy wearing perfume). So a 'pampering' bath time won't appeal much, but she does go to day care 3 times a week (it took some selling to her but she loves it now) and while she's there she often has her hair done. I also pay a chiropodist to give her a pedicure since her toenails are like horn, and that way her feet also get cleaned up a bit on the sly.

I don't think it's fear of the shower, since she lets one carer do it and if she was afraid, they'd all have trouble. I think it's mostly rage at being in that situation and yes, it's probably directed at me. I notice recently I'm getting a lot of, 'How do YOU know I might fall, I never fall, you're never here to see me' etc, etc, which is quite telling. I do visit, though not as often as I should, but she forgets I was there as soon as I drive off. I can't leave the place where I'm living as my work depends on being here and I won't get my pension for another 6 years so have to go on working as long as I can, plus (to be honest) I'd go mad if I went back into my childhood home and had Mum yelling at me day and night. Before she got this bad I pleaded repeatedly with her to come and live nearer me, but of course she wouldn't. So her resentment is going to continue, I'm afraid.

 

[LadyA]

Rosie, are the carers in uniform? I know some wear "proper" tunic type uniforms and some just wear tee-shirts/sweatshirts and trousers. My husband was very resistant to personal care and washing while he was at home here too. He wouldn't accept it from me at all and even the male care assistant had problems with him. But when he went to the nursing home, the staff there never had any problems at all - he even used to seek them out if he needed the loo, after being incontinent here for over a year! I think it was the easily recognisable uniforms that was the difference. He recognised that they were there to help him. He could tell by the clinical type uniform. And that generation was quite inclined to co-operate with people in uniform!

 

[Shedrech]

Hi Rosie56
I had never expected to see parts of my dad that I have seen and to help him in the ways I have - but I was amazed and humbled that he had the confidence in me to allow me so close to him - so there has been real dignity for us both in just getting on with whatever needed to be done - for me making a fuss or refusing when he was in dire need of a helping hand would have stripped us both of dignity and trust - the difference between my dad and your mum, though, is that he is content to allow me to help him
it was a surprise that I can cope - and I fully appreciate that each relationship is very individual and to be dealt with as is appropriate to the people concerned - I could not be a carer employed to provide personal care for others - I am in awe of those marvellous people

you mention that your mum does accept some personal car at her day centre - I know some centres will also shower/bath/wash their charges - might you ask her day centre staff if they are able willing and able to try this?

 

[Rosie56]

Rosie, are the carers in uniform? I know some wear "proper" tunic type uniforms and some just wear tee-shirts/sweatshirts and trousers. My husband was very resistant to personal care and washing while he was at home here too. He wouldn't accept it from me at all and even the male care assistant had problems with him. But when he went to the nursing home, the staff there never had any problems at all - he even used to seek them out if he needed the loo, after being incontinent here for over a year! I think it was the easily recognisable uniforms that was the difference. He recognised that they were there to help him. He could tell by the clinical type uniform. And that generation was quite inclined to co-operate with people in uniform!

They do wear uniforms, LadyA, and they are persistent in looking for ways to win her over. She is SO proud and stubborn and won't even allow incontinence pads or toilet rolls to be stored inside the toilet 'in case anyone sees them' (nobody except Mum, carers or family ever uses the toilet). I was about to list some more of her funny little ways here but I know you all have examples of your own and don't need mine! The point is - the slightest infringement and she's in a rage.

I know lots of people do comply once in a home, though. I hope that when we finally get there, Mum will respond to a new environment by being more cooperative.

 

[Rosie56]

Hi Rosie56
I had never expected to see parts of my dad that I have seen and to help him in the ways I have - but I was amazed and humbled that he had the confidence in me to allow me so close to him - so there has been real dignity for us both in just getting on with whatever needed to be done - for me making a fuss or refusing when he was in dire need of a helping hand would have stripped us both of dignity and trust - the difference between my dad and your mum, though, is that he is content to allow me to help him
it was a surprise that I can cope - and I fully appreciate that each relationship is very individual and to be dealt with as is appropriate to the people concerned - I could not be a carer employed to provide personal care for others - I am in awe of those marvellous people

you mention that your mum does accept some personal car at her day centre - I know some centres will also shower/bath/wash their charges - might you ask her day centre staff if they are able willing and able to try this?

I'm still incredibly impressed - by both you and your dad.

And yes, the carer gets such a hard time from Mum I really admire her patience and persistence.

The day care centre people have cleaned her up on occasion when she's had an accident there. They are very good about it but I don't think they offer anything more than that - we've discussed her various hygiene problems and they've never mentioned anything more than hairdressing. They do marvels but are understaffed and hard worked - the hairdresser comes in from outside once a week. I don't think Mum would consent either. She likes to spend all her time at day care drinking tea and talking with the other clients, or watching films. One of the big resentments with the new carers is that the morning one comes later than Mum would like and then insists on trying to wash her. The enraged phone calls I get quite often say, 'I'm missing Choices! What's this bloody stupid woman doing here, I'm already washed and ready, with my coat on! Why doesn't she take me now?' (The reason being that Mum is smelly, unfed and has had no medication, but she doesn't realise any of that!) So I think if she went to Choices and was asked to take time out for washing, there'd be uproar. BTW I have tried to get the time of the morning call changed but it's difficult. We were on a waiting list to get Mum in with this agency and they could only manage it if we accepted a later start time. We couldn't leave Mum with the previous agency which had twice made dangerous mistakes with her meds (and we think there might have been a third time which was hushed up). She was actually taken to hospital on one occasion. So a late start seemed worth it. I didn't realise there would be such resentment from Mum though perhaps I should have anticipated that. Hindsight is always 20-20!

Thank you, everybody - it may seem as if I keep saying, 'Yes, but...' to everyone's suggestions but believe me, I'm very grateful and am making notes. It's just that I've tried a number of things already and most of them fall flat with Mum.

 

[Rosie56]

knicker theft

Well! Before I could talk to the carers about confiscating knickers, they did it anyway. Mum phoned me to say the carers had stolen her underwear, which at least gave me a rare laugh, but apparently that hasn't worked either - one of the carers told me it started well, but then she started tearing off the pull-ups, so now her knickers have been returned to her and it's back to square one.

She's still screaming at them and tonight called me to ask why 'that woman' was there. The usual call. No matter what I say, both the carer and I just come in for abuse and threats.

I just hope this stage passes relatively soon...