Deciding mental capacity when self neglect is occurring

LHS

Registered User
Oct 5, 2018
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My mum lives on her own and is stubbornly defiant about her condition. She cannot cook she cannot use the microwave she often goes to Tesco's to buy one random thing she has eaten raw chicken she has thrown food away that I've bought for her and put in the fridge. The only time that I know she eats is if I or a friend sit down with her to eat or witness her eat . Nightmare. She is deemed to still have mental capacity but she is neglecting herself because she doesn't recognise that she has to eat and drink. I'm caught between a rock and a hard place because Mum needs the support but she refuses it and I cannot provide sufficient support on my own. She's already had a couple of falls which I believe are related to dehydration and lack of food. Help.....
 

Sirena

Registered User
Feb 27, 2018
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Has your mother had a recent SS assessment?
You say she refuses help - do you mean that when you suggest getting help, she says no? Or do you mean when a carer arrives she refuses to let her in or co-operate?
Do you have LPA?
 

LHS

Registered User
Oct 5, 2018
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Mum gets agitated whenever any kind of support is mentioned because she is defiant about not being able to cope. She has grudgingly had her first home care with meal visit today but it got very close to mum throwing her out and it was only cos i was here to smooth things through that it worked. Yes i have lpa but it is worthless re health until mum is declared to have lost mental capacity. Until then if she dies not accept ongoing external support she half starves and gets upset and falls.
 

LHS

Registered User
Oct 5, 2018
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Unintentional typo in my last post - was meant to say 'does' not 'dies' but it kind of speaks the truth.
 

la lucia

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Jul 3, 2011
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Mum gets agitated whenever any kind of support is mentioned because she is defiant about not being able to cope. She has grudgingly had her first home care with meal visit today but it got very close to mum throwing her out and it was only cos i was here to smooth things through that it worked. Yes i have lpa but it is worthless re health until mum is declared to have lost mental capacity. Until then if she dies not accept ongoing external support she half starves and gets upset and falls.
I had to lie through my teeth to get my mum to do anything the first few years and play endless strategy games. Luckily, everyone around us was happy to play along so the word dementia was banned, daycare was the 'arts and crafts club', carers were everything from cleaners to nurses...

I couldn't even drive her to daycare because she would refuse or make an excuse but she'd happily get in a van with the staff ("taxi"). It was initially exhausting but bit-by-bit we got there and she ended up loving her daycare days.

I never told her anything until just before it was about to occur so then she didn't get wound up about things.
 

LHS

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Oct 5, 2018
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As you say it relies on strategy games. It is all so exhausting and relentless having to watch what you say and do the whole time. mum is neglecting herself but she doesnt realise it and is just so damn stubborn. I cant carry on like this much longer - this may sound selfish but i am not prepared to become a full time carer or wreck my family and work life which is already suffering big time. It takes me 45 mins just to get to mums house from where i live.

She is either going to have to accept the ongoing daily support visits or she will have to go hungry until she rings 999 or falls over. I have ordered in delivery pizzas a few times but that would not be necessary if she accepted support visits.
 

Sirena

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Feb 27, 2018
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The reason I asked if you had LPA was I wondered if you had access to her finances and could buy care for her, but it sounds as if that is already happening, as you say a carer came in today.

I wouldn't talk to her at all about carers, it will just upset/annoy her and it's unlikely she will agree in advance. But she did grudgingly accept the carer today so that's good progress, doesn't really matter if she is reluctant as long as she does accept their presence.

My mother never 'agreed' to anything - because I didn't ask her, I just went ahead and made arrangements. Once care was in place, she accepted it. I never referred to them as 'carers' either, I just said a nice lady was coming to help her with things she found difficult, like carrying shopping. I'm sure it's difficult to accept a stranger into the house when you are already confused, but hopefully your mother will become less reluctant as it becomes a part of her routine.
 

Rosettastone57

Registered User
Oct 27, 2016
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As you say it relies on strategy games. It is all so exhausting and relentless having to watch what you say and do the whole time. mum is neglecting herself but she doesnt realise it and is just so damn stubborn. I cant carry on like this much longer - this may sound selfish but i am not prepared to become a full time carer or wreck my family and work life which is already suffering big time. It takes me 45 mins just to get to mums house from where i live.

She is either going to have to accept the ongoing daily support visits or she will have to go hungry until she rings 999 or falls over. I have ordered in delivery pizzas a few times but that would not be necessary if she accepted support visits.

If you wait for a person with dementia to agree with you or see your point of view then you will wait forever. The default answer is always going to be no. My mother-in-law had carers in 3 times a day for 3 years before the situation changed and she ended up in care.

As I had LPA for finances and she was self funding, I just organized a care package for her. I didn't discuss it, just told her a lady was coming to help her get a nice cup of tea in the morning in bed . As far as she was concerned she had nothing wrong with her, a stance she took even in a care home . I told her the carer was free,that she had to learn the job by helping out with "normal, healthy people " first ie my mother-in-law, as part of her training, before going on to help out ill people . I told my mother-in-law that she had to rate the girl and tell me so I could pass it on to her trainer. The care agency was obviously in on this ruse. Mother-in-law was resistant but I stood firm and kept the carers coming, ignoring her abuse and anger. Gradually the calls increased to include lunch and teatime. My husband and I were never going to be full time carers . Eventually her needs became so great, there was no alternative other than a care home.
 

LHS

Registered User
Oct 5, 2018
80
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Thank you all for your posts, very much appreciated. Via this forum and via direct experience i have learned many things. The way this disease affects her means that it is just a constant challenge for her and everyone around her. Frightening for her, exhausting for the rest of us. I want to be able to be a daughter again, not a carer.....