Independence versus safety

[Elizabeth_1612123]

I've just joined CarersUK as like alot of people I find dealing with dementia as a carer is a minefield and always seems to be at least one step behind!

Mum has vascular dementia and has a wonderful live in carer which works very well except in the independence area. Mum has lived on her own for the last 30 years and is struggling with someone else doing things for her but she has AMD so not only can she not see properly but in certain situations her brain can't work out what she is looking at or supposed to be doing. She finds this hugely frustrating and upsetting.

Mum's main bugbear at the moment is that she wants to go out on her own, mutters alot about not being allowed out. She will take her shopping trolley so the 'falling over' issue is greatly reduced but she struggles with money and occasionally where she is which leaves her very vunerable to being taken advantage of (luckily this hasn't happened yet) or her being extremely upset at not being able to cope. Mum has been admitted to A&E 4 times in the last 3 months having fallen over because she won't use a stick or walker.

The question is: should I let her go out on her own and potentially become a cropper or just continue saying not without someone with her? She will go out with me quite willingly but not the carer although I can't be there whenever she wants to go out. Please help!

[Sometimes]

Make her take someone with her. If she has an accident or things go wrong you'll forever feel guilty.

[Elaine]

Hi Elizabeth
Role reversal comes with dementia. You are now the 'parent' and know best. Would you allow a small child out on their own? Mum probably does not want to go alone so much as want the years to roll away so that she could go out on her own if she wanted to. That's not going to happen but the things you fear might. Mum will get used to it in the end. Perhaps remind her than at least she is able to go shopping when someone is with her. Not everyone can still do that. Also tell her it's not her that you don't trust but other people. (Pickpockets maybe? Kids on bikes, bad drivers? Elderly people on scooters!)
I'd stick to your guns on this one.
KR
E.

[susieq]

Hello Elizabeth and welcome to the forum

How long has the live-in carer been with Mum ? Might be that she's willing to go out with you because she knows you well and feels 'safe' - but she doesn't know the live-in carer as well so is more anxious ? Perhaps try going out as a threesome occasionally and see how that works ? Then as your Mum gets used to someone else being with her you could dial back all going out together and just see how the two of them get on.

My Mum had Alzheimer's and until I moved in with her she was adamant that (a) she manage perfectly well on her own thank you and (b) didn't need a walking stick or frame (in reality she actually needed a wheelchair after having had both knees replaced !).

It's a fine line we have to walk to ensure that they don't feel like they're being treated like a child when in reality they need a lot more support than they will admit to !

[Elizabeth_1612123]

Thank you for your advice, it is the same as me. I just wondered if I was being over protective and a bit unfair but very glad to hear I'm not. Mum relationship is very good with her carer even when we go out she says she's disappointed that she's not coming and if Mum doesn't like someone everyone knows! This was my first post and will very definitely not be my last, it's great to hear about other people's experiences.

[bowlingbun]

Did you know that mum is probably exempt from Council Tax on the grounds of severe mental impairment? Have you claimed Attendance Allowance for her? Are you her DWP appointee?