Care home fees

[Worrywart]

Hi all - I've posted before and you have all been great. Ina nutshell : mother had brain haemorrhage and now has vascular dementia - she lives at home with 4 care visits - deteriorated over last month - wandering / completely confused / regresses 40 yrs at times / turned cooker on / falls. I am recovering from a perforated bowel - been in hospitwl 3 months since coming out loads stress with mother and I'm not recovering well.
Care home looks likely. If we were able to rent her house out we could probably manage to pay care home fees ourselves ( from mothers pensions DLA etc) but my worries are -

To enable us to rent the house out it would required upgrading - could we use some of her capital to upgrade to enable us to rent it out. We have power of Attourney. But I'm thinking will the LA view this as some kind if deprivation. Her house is not worth much and she does not have lots of savings but we would probably need to spend about £5000 to bring it up to standard.
We live in Wales so not sure if rules are different.

I'm at my wits end. Can't keep worrying or I will be six foot under - the stress if the situation is tearing me apart.
On saying this I also understand mother can refuse to go into a home and if SS catch her on a good time, she will refuse and is extremely convincing. She will not even consider day centres to give me a break. She is hard work and I'm not up to it.

Thanks all again, xxx

[Henrietta]

That is a really tough one., I know that the new Care act means that houses don't have to be sold to pay for care until after someone has passed on but obviously this doesn't really anser your question.
Your proposal sounds reasonable to me. I am wondering if you used some capital for this purpose who would challenge you? It is not an enormous sum that you mention. Once the property was let out could the tenancy be in your mums name with you as POA so that any gains from the development went to your mum?

Even if you have to pay for the upgrade on credit card/bank loan I suspect you would be better keeping the property in the family and benefiting from it later on than leaving it sitting idle while the care home take and more of it away. It is really a sickening thought -one that I share completey.

As for mum agreeing to go into home- which kind of POA do you hold- is it just financial or is it also to cover her care decisions? If you don't have the latter perhaps it would be worth applying and then the decision is ultimately yours even if mum disagrees.

[bowlingbun]

It sounds like you are running out of time, as mum is deteriorating rapidly. Ring the CUK helpline for chapter and verse on whether the LA can even take mum's house into consideration. Here are some options:-
1.There was a ruling earlier this year which said that although a daughter didn't actually live in mum's house, it was "the family" home, and therefore had to be completely disregarded for financial assessment purposes.
2.The "capital disregard" applies, so you wouldn't have to sell mum's house to pay for the fees, but you would be expected to repay the money spent by the LA on fees once mum died.
3. Mum deteriorates to the point that she is eligible for NHS Continuing Healthcare, in which case care is completely free, funded by the NHS.
If mum has severe dementia she lacks "mental capacity" so, by definition, cannot make a reasoned decision about where she lives.
4. If the house needs redecoration and modernisation, have a word with your local council. They might have an "empty homes" policy. In my area, they will modernise a house and use it for people on the waiting list, as long as you agree for them to use it for a few years. After the period ends, they completely redecorate it again before handing it back.
Hope that helps. Your own health must come first now.

[crocus]

Hello worrywort, Im so sorry to hear about your mum. I understand where you are coming from as my mum has been diagnosed with Alzheimers and had the same problems as your mum - particularly the wandering. She is now in a care home.

The LA are only interested in deprivation of assets once your mum runs out of capital and they are looking at her financial affairs, so if her care home fees are covered by pension, AA, and rental then they wont be interested. Even if she did run out of money then Im sure it would be covered by explaining it as house maintenance. My mum is in a care home and her home is not yet sold (rental wont cover her care home fees) and during this time any work on her home is considered her financial responsibility.

Do you have a care home in mind? If so then its probable that they will have a waiting list for a room. I would get her name down now. Even if a room becomes available you do not have to take it.

On saying this I also understand mother can refuse to go into a home and if SS catch her on a good time, she will refuse and is extremely convincing. She will not even consider day centres to give me a break.

This can be a problem if she has not not been assessed formally as having lost capacity - and legally she has capacity until proven otherwise. Has anyone done a capacity test recently? It can be done by GP, memory clinic or Social Worker. I found this stage of dementia - when they need help, but will not accept any particularly hard. Mum, too could (and indeed, still does) present extremely well

Perhaps now is a time to request an up-to-date needs assessment and see what the SW thinks about a care home and her capacity. I think the wandering/falls/cooker issues are a safety issue and if the SW agrees that she now needs 24/7 care to keep her safe then it will make your life easier. In my case mum refused everything and eventually ended up in hospital where she was found to have lost capacity. She went into a care home from there and has been there ever since.

Good luck with it all xx

[jenny lucas]

Hi - just two quick comments (as the others have said such comprehensive things!)

£5000 to do up a house to rental standard seems pretty good to me! (Have you checked with the estate agents doing lettings in your area what actually needs to be done to make the house rentable? Might be an idea - you might find you don't have to do some things you're planning, but do need to do others, eg, fireproofing or whatever!)

Secondly, this is depressing, but actually, £5k only represents a couple of months fees for care homes (my MIL's for dementia is £2,400 a month)(and that's cheap!), so I can't see the LA getting that fussed about such a 'small' sum!!!! (I hope!)

Thirdly - you say your mum refuses to go into a care home - BUT, if you withdrew the care you are providing her with (ie, over and above what she gets anyway from outside carers) could she actually cope any more at all? If you did that, and warned the outside carers you were doing it, then they could see your mum can't cope, and then whatever your mum might say, their 'testimony' would surely activate SS?? While you 'enable' your mother to continue to live on her own, she will continue to want to do so. Sad but true....

Definitely start checking out care homes and 'lining them up' for your mum, and make that your priority so that you are all prepared for getting your mum in before long.

All the very best with it. I - and others here - can tell you that once your mum is in a good home, and your 'care burden' is massively reduced, then you can actually enjoy your time with her when you visit and take her out. You will be far less a 'worrywart' (!:) and your mum will be well looked after.

Kind regards, Jenny
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[Worrywart]

Thank you all so much for your wise words. I need to look into this in detail. I may be shocked to find the care home fees are more especially as she now wanders - I seem to think that may need a more secure home. I do hope not. Im finding it so hard to cope, my own health so badly affected by the op that went wrong inJanuary. I agonised over the decision of whether to have a hysterectomy and it ended ina perforated bowel - I still have sinus holes and God knows what to contend with. The hope it will fully heal in time. But life is stressful with my mother and I know if she does have to go into a home I will be heartbroken deep down. I didn't realise the deterioration could be so sudden - today she was looking for her chikdren as they were late home from school . Yesterday she was saying my father was having an affair - he died 16 years ago. It's torture.
I live inWales so I'm not sure if the same rules apply - I will start looking into things and thanks again . If anyone has any tips or experience of perforated bowel ( good stories please ) I would be grateful - I need to believe I will get better.
Thanks everyone xx

[Henrietta]

Hi Worrywort
I can recomend a couple of web sites where you will find others with hysterectomy complications. The uk web site is called Hysterectomy Association and a global one with a USA emphasis is Hystersisters. Both were an invaluable source to me for a couple of years. Here are the links

http://forums.hysterectomy-association. ... le=desktop

http://www.hystersisters.com/vb2/

Put in Perforated Bowel into the search box or check through the archives for post op complications- both sites will have loads of info .

[Worrywart]

Thank you Henrietta - I have had a look at these - the uk one is great and very supportive. The USA one tends to have some horror stories about bowel perforation after hysterectomy, I'm scared to dig any deeper to be honest. That can be the trouble with some forums - you only get the horror stories as people don't often post when everything is running smoothly.
Thank you so much though for the recommendation - il take another look when I'm not feeling so down xx

[jenny lucas]

Dear WW

I just wanted to tell you that 15 months ago I was on the edge of a nervous breakdown (or already heading over the edge!). I was at my wits end coping with MIL with dementia 'landing' on me and I could not solve it or get my life back or have any time for anything other than 'coping' day after day after day after day with MIL who had just 'collapsed' on me....

It was, without the shadow of a doubt, the worst time of my life other than when my husband died. If I had had to continue looking after my MIL personally I would have killed myself - (taking her with me, as I could not possibly have left the burden that she was to anyone else). My life was utter, total misery. I could not bear it - I just could not bear it...even thinking about it now makes me start to shake. My life was, to be blunt, 'over'. It was not worth being alive, every day was a ghastly dreadful torment, I was a slave to another human being 'for ever'.....

BUT, 15 months later I'm a different person. I'm back to 'me'.

BECAUSE my MIL is in a care home.

It's that simple - that brutal.

So, I say to you, that however grim and bleak and dreadful life seems now, once your mum is in a good care home, and the 'burden' of her daily care is lifted from you, and you can just enjoy the time you spend with her, and get your relationship with her back, then your life will 'come back to you'.

I'm so sorry I can't help about the perforated bowel - but you have helped me! I had a hysterectomy myself a few years ago, and I sailed through it, and it was absolutely painless and worked a treat. And reading about your horrible experience makes me very very very appreciative for myself.....I clearly got off very very lightly.

I do hope on that front that things will improve and I'm sure that once the difficult situation with your mum is sorted, you will have the time and energy to look after yourself and start finding enjoyment in life again....

Kindest wishes, Jenny.

[Worrywart]

Thanks Jenny - yes I am in a dark place at the moment. What with spending 3 months in hospital and then coming home to lots of stress, I too feel what's the point, nothing will ever change. I'm not sure where my bowel perforation complication will lead - it may heal but it may not and then I would need more surgery. It's all very worrying. My husband and I are falling apart - he is completely resentful of my mother which is not fair and I'm sure I even want to be with him anymore. I just feel exhausted from the daily drudge that my life has become. Sorry - so depressing, I've a lot to be grateful for but at the moment I feel so exhausted by it all, I can't see the wood for the trees so to speak.
Thank you for your words of encouragement Xx