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Carers UK Forum • Hi Everyone
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Hi Everyone

Posted: Fri Oct 12, 2018 9:37 pm
by Amanda_18081
Just wanted to say hello and introduce myself. I’m involved with the care of my mum who is in early 70s with Lewy body dementia which developed quite quickly. Things have stabilised and been fire fighting but now have time for lots of questions! Anyway hello to everyone.

Re: Hi Everyone

Posted: Sat Oct 13, 2018 6:32 am
by StarFish_1502
Hi Amanda

I'm rather surprised no one else has responded yet and I'm just wondering whether it's cos your post and the one before have the same subject line?

Anyway welcome! I'm so sorry about your mum. 70 is quite young still - im 67!

Your other post describes your brother's role but would you like to tell us more about your own situation? Do you live with mum? Have any other family - other siblings, partner, kids?

I understand firefighting. I'm still reeling from moving my mum (95) to a care home. She was ok at first but has suddenly deteriorated and had a week in hospital. She has severe memory loss but still knows me and is able to talk rationally. She'd only been there a month when my son was sectioned for the umpteenth time, so I was whizzing from home to hospital every day.

BTW, I'd suggest contacting the helpline for information on appointeeship.

Re: Hi Everyone

Posted: Sat Oct 13, 2018 10:57 am
by jenny lucas
Yes, hi - I glimpsed your post last night, but wasn't logged in (fatal for me to log in late at night!!!!!)

What's the set up with your mum in respect of (a) PoA (do you have it?) (b) her finances and (c) her 'place of care' (at home, care home, etc etc)

Sadly, as well as 'firefighting' you DO have to 'look to the future' and decide, basically, whether you want to preserve your life or your inheritance! (if there is an inheritance of course!)

The general 'tradeoff' for children who care for their parents is whether to provide the care themselves, and 'use up their lives' on it (years????), but ensure they can then have 'something to inherit' when the parent finally dies, or to say 'to hell with the inheritance, I'm not spending my life caring, so I'm going to let mum cash in her assets, and spend them on her care costs'.

What you do NOT want to do is start caring, hoping to preserve your inheritance, and then, out of weariness and exhaustion and despair a decade later to throw in the towel, sell her assets, put her in a care home to get your life back, what is left of it, and not get a bean in inheritance as the care home has got all her money off her....

So you really have to choose NOW - and stick with it!

Re: Hi Everyone

Posted: Sat Oct 13, 2018 10:58 am
by jenny lucas
PS - by the way, the very WORST scenario is if there are siblings, and only one of them does all the care, but the inheritance then divides up and the non-caring siblings 'walz off' with HALF mum's house value, when they have done SOD ALL to help look after her.

DO NOT let that happen!

Re: Hi Everyone

Posted: Mon Oct 15, 2018 9:01 am
by Sally_17031
Hey - welcome. I care for my Mum who has Alzheimer's. It developed when she was in her early 70s too - (now in late 70s).

She still lives at home with some help coming in.

I understand firefighting. 18months ago my Mum and Dad were both requiring care and the situation felt pretty desperate. Dad is in a care home now and things with Mum have stabilised considerable.

Tell us more if it helps. x

Re: Hi Everyone

Posted: Mon Oct 22, 2018 9:24 pm
by Amanda_18081
Sorry for not replying sooner. In terms of inheritance there isn’t any - Mum was a single parent all her life and we lived in council/social housing so she is dependent upon the state/ social services. Mum did not have any sort of Power of Attorney or a will - she’s never liked talking about end of life or illnesses.

Mum started developing symptoms about 3-4 years ago (visual hallucinations) but could hide them quite well but eventually went into crisis with them and was then diagnosed with LBD and vascular dementia.

She still lives at home in a flat (with 3 flights of stairs to navigate) with my brother. They pay rent to the local council as far as I am aware and my brother I think was helped in claiming Attendance Allowance by someone from DWP. My brother not terribly communicative and is doing most of the day to day care as well as a full time job so I prioritise things I need to talk to him about. I live about 100 miles away with my family and visit for a few days at a time every 2-4 weeks. I’m in my 50s with a part time but pretty full on responsible job in London with commuting and travel involved.

So priorities have been getting medication and minimal care package settled to get Mum over crisis, then Mum had UTI, hospital and current care package which is living at home with 4 days at a day care centre and care at home on 5 th day. Mum’s health is deteriorating but she’s actually doing better than expected and after the hospital stay is now being seen by a LBD consultant and Parkinson’s team.

Anyway, issues are that Mum and brother don’t like talking about finances (very private) and have always lived day by day and don’t like looking ahead. I’ve found this difficult as I’m a planner and like to obey the law! Latest psych report says Mum does not have capacity so we will need to sort out finances but I’ve been down there a lot recently so felt completely drained and needed a rest. Been trying to do some research but I think we’re limited to deputy but I need to look into that more.

Re: Hi Everyone

Posted: Mon Oct 22, 2018 9:39 pm
by jenny lucas
Is your brother on the tenancy of your mum's flat? If not, he will be made homeless if she has to go into care? Or when she dies, whichever is soonest.

This is THE most important question right now!

Re: Hi Everyone

Posted: Mon Oct 22, 2018 9:56 pm
by Chris From The Gulag
Alarm bells ?

Just in case it's needed ... the dreaded LAMPCHOP thread :

https://www.carersuk.org/forum/support- ... t=lampchop

One of our forum members made homeless.

Links galore ... which may be needed !!!

NOT a good read but ... essential in some instances !

Re: Hi Everyone

Posted: Tue Oct 23, 2018 8:34 am
by bowlingbun
The most worrying part of mum's current circumstances is that she lives up THREE flights of stairs. Has an application been made for a ground floor property?!

Re: Hi Everyone

Posted: Tue Oct 23, 2018 9:50 am
by jenny lucas
Yes, ideally, get mum moved to a ground floor easy access flat, that is in a joint tenancy with your brother, so he can't lose it when she dies/goes into a home. It's really important to sort this out now (because it will probably take ages for a good flat to come up for her!)

Dementia of any kind is a cruel, relentless business, and unless 'something else' takes her (pneumonia, heart attack, stroke, cancer etc etc) then she will eventually die of it - but the word here is, grimly, 'eventually'.

Dementia will in the end make her doubly incontinent (so think endless pads and changes), and immobile (so think padded chairs, even hospital beds)(lugged up three flights of stairs??). Your brother won't be able to cope on his own.

Stress to the council that dementia is an ILLNESS (which it IS) ....it is not just a question of being 'a little vague and ditzy' etc etc. It has punishing and inevitable implications.

As a precaution, at some point you should start checking out care homes that specialise in EMI (Elderly Mentally Infirm) (ie, dementia). As she is not a home owner, she SHOULD be eligible for council-funded residential care, but not all homes offer this (as in, some only take private, fee paying residents). Ideally she should not move homes once she is there (if it comes to that).

Also, are you aware that as she is mentally infirm now, she should not be paying council tax, so apply to have it reduced to cover your brother only, if you haven't done so! I never knew that till I was told it on this forum!!