"You'll know when it's time for residential care"...will I?!

New to Carers Connect
1

I apologise in advance for the length and waffley nature of this post (and if it’s in the wrong place) - I think it’s evidence of my state of mind.

My mum was diagnosed with mixed dementia in the summer of 2019. In those early days, she was independent, chose to give up driving to be safe and was involved in the decision in moving with me (her only immediate family) closer to local amenities. Luckily, we were advised by our conveyancing solicitor to arrange both the financial and welfare LPAs at that time. For nine months she was fine…then covid hit. Her cognitive stimulation therapy was cancelled, all the day centres and pop-in groups closed their doors, friends and our limited extended family couldn’t visit, I didn’t receive any carer ‘training’, and despite me being on furlough and home (alone) with her constantly, she began to decline rapidly.

During the summer/autumn of 2020, the local council completed a needs and financial assessment and despite needing care during my working day absence, concluded (incorrectly) Mum had deliberately deprived herself of assets by signing the house value over to me for our new home…which was chosen with her needs in mind - I challenged the decision without success. I have suffered from anxiety and depression for several years and found lockdown isolation particularly hard; a carer’s assessment concluded I needed assistance and respite as I was close to burnout…burnout is now a speck on the far side of a very distant horizon.

My old post was made redundant thanks to covid but I managed to find a very different post, with the same company. When my furlough ended and I returned to full-time work in December, I arranged two 45 minute private care visits a day (partly funded by Attendance Allowance) - more for welfare than anything else. Although Mum’s still capable of her personal care (mostly), she’s now incapable of organising her own affairs, housework or cooking, her appetite is poor to say the least, she doesn’t drink enough fluids, and she doesn’t leave the house alone. She’s not violent but she’s perpetually confused - lucid moments are few and far between; she asks for my dad (deceased 25 years) but not my brother (deceased 30 years) and the recently dead dog, frequently doesn’t recognise me (asking where her daughter is - I’m now an only child) but is occasionally in the belief her long-estranged sister is her daughter but accepting upon correction. Practically on a daily basis she’ll pack up her clothes and belongings under the belief she’s “going home” and becomes extremely frustrated and disbelieving when I try to tell her she is home. The Council have reassessed her needs, recognised further care is required, recommended 4 visits a day, but maintained the financial decision against us. It’s all well and good organising clocks to aid the memory and emergency call buttons but how is someone with dementia going to remember what that button is for or when to press it? Last weekend, Mum barricaded herself into her bedroom at night and I couldn’t gain access until she finally heard me calling her (she’s partially deaf now). She’d piled furniture (for 88 she’s very agile!), boxes and even a large stuffed toy against the door as “there isn’t a lock” and in the belief she wasn’t safe.

I’m juggling a relatively new full-time job (50 minute commute each way), caring for my mum and the house, and looking after my own mental health - even Mum recognised yesterday I’ve effectively got two full-time jobs. While on medication, I work through my anxiety by keeping busy and struggle to find my ‘off switch’ - I’ve collapsed 3 times with exhaustion.

So, after a VERY long narrative, how do you know when it’s time to look at residential care? I’ve asked the ‘professionals’ and they all say “you’ll know”…will I? How?!
Where do you turn when you’ve genuinely verbally and in writing begged the professionals for help and you’re turned down or don’t get a reply for weeks…or ever?
I’ve tried to broach the subject of care with Mum but she’s all about the money, quickly gets frustrated and confused and says we’ll talk about it later…when we’ll be talking about it for the first time.
With my mental health, everything is beyond my control, I’m trapped. I try to plan ahead but how can you when the rate of decline and prognosis are unknown?
I feel like the proverbial frog in cold water, slowly boiling to death as I’m unaware of the little changes, as I do more and more for Mum.
I’m worried if I make the decision to find residential care, will it be for Mum’s welfare or my own benefit? Both probably.
Mum only has about £15k in savings so that would only cover 4 months of residential care - then what? I feel like the Council expect me to sell the house but then I’ll be homeless.

As I said, I think my state of mind is evident.
Please, discuss, advise, relate.

Thanks in advance.

2

You need a specialist Community Care lawyer to sort this out.

Was mum ill when you bought the new home?
Could she have managed in her old house without your input?
Did you contribute to the house purchase?
What percentage?
How old are you and mum?
When a solicitor dealt with the sale of mum’s old house, purchase of the new one, was this scenario considered?
Is mum paying Council Tax?

There’s a real purpose to these questions, although they seem a bit random, I know.

I’m not a lawyer, but have had some experience around this sort of issue, and reclaimed £8,000 from Hampshire for wrongly charging mum!

3

Michelle,

What a stressful situation.

I can’t advise on the financial side and the whole deprivation of assets thing - I suggest you call Carers Uk or Age Uk helplines re that.

Re when is the time for residential care; for many caring for someone with dementia several things can trigger this eg a lack of sleep because the caree is keeping the carer awake, incontinence, the person keeps ‘escaping’, the person becomes aggressive.
Usually the person needs more care than one carer can provide - they need a team of people available 24/7.

I suggest you start looking at what is available now and get advice re your Mum’s finances.

Melly1

4

I forgot to say earlier, it’s now vital to keep a diary. If mum barricades herself in again, don’t try and deal with it yourself, call the ambulance or police. It’s so important to gather “evidence” of mum’s state of mind. If she is considered to be a danger to herself or others, then she may be entitled to NHS Continuing Healthcare, which is entirely FREE, but it’s a postcode lottery I’m afraid. If you can afford it, print off the relevant sections of the NHS Continuing Healthcare Framework and go through it with a highlighter pen.
If you are over 60, the value of the house would not be considered by Social Services. That’s why I asked how old you are! How far away from that are you?
If you google “Charging for Residential Care” you will see that there are other options apart from selling the house. The council could put a “charge” on the house. Were you aware of this? Has it been offered to you?

5

Hi,

Thank you so much for replying.

You need a specialist Community Care lawyer to sort this out.
I had a 45 minute (free) consultation with a specialist lawyer. He said ultimately I could take the council to court over it but the legal bill would out-weigh any financial gain.

Was mum ill when you bought the new home?
She’d been diagnosed a couple of months before we moved. The decision had been made prior to that but how do you prove that to the council? Our word against theirs.
Could she have managed in her old house without your input?
No. The garden was too big and work was required. And having given up her driving licence on diagnosis, she was also too far to walk to the nearest shop.
Did you contribute to the house purchase?
Yes
What percentage?
10%
How old are you and mum?
Mum is 88, I’m 50.
When a solicitor dealt with the sale of mum’s old house, purchase of the new one, was this scenario considered?
We deliberately used separate solicitor firms during her sale and my purchase so there was no conflict of interest; they were both aware of her diagnosis. Mum said my name may as well be the only name on the deed as I am her sole beneficiary anyway - therefore, the solicitors requested a handwritten letter from Mum confirming the ‘deed of gift’, and letters were sought from her GP and specialist to confirm she had capacity; we were not made aware of the possible implications or the existence of the term ‘deprivation of assets’. Hindsight is a wonderful thing.
Is mum paying Council Tax?
She was at the old address but not at the ‘new’ one (been here nearly 2 years now). I was advised to request the discount and it was awarded due to her condition.

Thank you for your input.

6

And thanks for the diary suggestion. It’s been suggested in the past but it had slipped my mind. I’ve looked into the Continuing Healthcare assessment and I’ve requested the GP refer for the assessment…twice.
I’ve only just turned 50.
I’ve not been offered the “charge” on the house but my extended family are very opinionated that I shouldn’t risk my home. I have pressure from many directions.

Thanks again.

7

Hi,

Age UK were absolutely lovely when I spent about 45 minutes on the phone to them re the financial side. He was of the opinion that I should reapply for financial assessment and even provided me with a court case to reference. However, when I spoke to Mum’s (near useless) social worker, she said without the appearance of new paperwork, there would be no point.

Going by your list of criteria, Mum doesn’t need residential care: she does wake me up when she gets up to go to the loo but that means her incontinence is pretty much under control at night (not so much during the day), she isn’t a wanderer (had to be brought home by the police once when she got lost soon after we moved), and as I said, she’s not aggressive - the occasional clip around the ear but that’s not changed since childhood! Verbally she becomes quite spiteful sometimes.
I think I’m suffering because I’m effectively dealing with everything alone - I’m genuinely exhausted and fearful for myself driving to and from work.

I’ve made some preliminary enquiries to local residential homes.

Thanks for your input.

8

I’m genuinely exhausted and fearful for myself driving to and from work.

Then how about arranging your Mum some respite care? This could be in a local care home that you like. This would give you breathing space and an opportunity to rest and then think about your situation.

The examples I gave are real life ones from this forum - however - every carer is different - and when caring gets too much, then it’s time to stop for the sake of self preservation (says someone who should take her own advice!)

Melly1

9

You need to look for a care and nursing home, so that wherever mum goes, it will be her last home.

From how you are feeling, utterly exhausted “doing nothing” is not an option.

I remember driving from mum’s house to mine one day, when a voice came into my head that said “I just can’t do this any more”. It wasn’t that I didn’t want to, I just couldn’t. Mum had been housebound for 30 years, as well as her I had a brain damaged son, I was widowed, and disabled myself. Achingly tired.
Your health has to be top priority. If mum has dementia, by definition she is incapable of making rational decisions.
You have POA for exactly this scenario.

I worked out all mum’s income on a weekly basis. Pension plus Attendance Allowance, and in the home she was also entitled to “Funded Nursing Care”, that’s about £150 a week now, I think.
I took this amount away from the fees every week, and worked out how much mum would have to contribute on a weekly basis.
In her case, she would definitely die before her money ran out.
Your mum is 88, older than mine was, and is clearly getting ill very quickly. If she is already so confused, then you have to decide if her dementia is going to get so bad that she becomes entitled to Continuing Healthcare, before her money runs out. That’s assuming that Boris doesn’t finally get round to keeping his promise.

Find the home which you like that is affordable, and let mum go there for respite care. You need a break. Then you can assess how it is, and just as important, the home can assess her too.

Had you not bought a house with mum and cared for her, by now she would have been in residential care anyhow, think how many thousands you have saved her.
Once her money goes down to under £8,000 you could investigate if legal aid was available.
Look after yourself, especially when driving.

10

It’s funny you should say about respite in a care home I like the look of - I’ve found just that - not sure they have room at the moment but worth a go.
Mum lives her life by the clock and heaven help me if I’m late back - it’s like being a teenager again! Just being able to spend the day doing whatever takes my fancy, wherever I feel like going would be luxury.

Thanks.

11

You can’t go on like that. My mum was very, very frail in her last year. She was in a home down the road from me, literally on the way to Waitrose.
When she was still at home, every time I visited, as I walked in the door, she would reach for a little notebook in the pocket of her recliner, and say “before I forget, can you…” How I hated that book. The stream of jobs was never ending, and I was struggling to cope with everyone’s competing needs.
Visiting mum in the home was so different, I still got little jobs to do, but it was lovely knowing that someone else was responsible for mum’s care, I could pop in and out whenever I wanted, every day or every other day. We went back to the old mum and daughter relationship.

12

You really do ‘get it’. It makes me feel better that someone else has been through similar feelings. After a particularly gruelling evening last night, I think that voice was trying to make itself heard. You’re right - it’s not that I don’t want to care for Mum, it’s just the fact it’s taking it’s physical and mental toll on me now.
What’s “Funded Nursing Care”? It’s probably on the link you suggested earlier - I’ll have a look. It’s so awful that you have to weigh up what’s going to happen first - complete incapacitation or death. As we’re all living longer, Boris really does need to sort this out for an ever increasing elderly population.
There’s a residential home I’ve passed on the way to my favourite dog walk for about 20 years. I always thought it looked well kept and in a lovely location. I’ve looked into it and it’s no more pricey than other homes in our area and they do offer respite (unlike some).
And on a positive note, I’d never considered the money I’ve saved her! :smiley:

Thank you so much. x

13

Six years on from mum’s death, and I realise I will never ever get back to how I was before she was ill, further complicated by the fact I was ill and my brother had died of pancreatic cancer the year before, abroad, and I’d been left to sort out the house, complete with 10 years of undone filing, 6 motor bikes in a million bits, and a 50’s Chevrolet with no bonnet, steering, or wheels fitted. Fortunately, eldest son is mechanically minded, so he took charge of dealing with that lot, but both things took a huge toll on me.
Try to think about balancing mum’s needs with your own.
Become mum’s care manager, not hands on provider.
Apparently, the very elderly, classed as over 85’s, increasingly become totally self focussed, unable to see what others are doing for them. Certainly the case with our parents.

14

Funded Nursing Care is a payment usually made direct to the home by the NHS. Google should find more for you, however the NHS is supposed to do a Continuing Healthcare Assessment first, and then award it to those who don’t qualify. In my area, they just gave it without the assessment as far as I could tell!

15

That’s what I hate - we’ve lost our relationship. I spend every day trying to learn new tasks in a new (not by choice) job and dreading going home; I spend every evening being told I’m not her daughter, she doesn’t live her and when am I taking her home - helps my anxiety no end. It’s no wonder I’m perpetually exhausted.

16

I have researched the continuing healthcare and I understand if need is obvious during step 1 of the assessment you can skip step 2.

17

Moving when we did and sorting the power of attorney actually went in my favour as it meant I had to sort all of mum’s paperwork and empty the overflowing cupboards. As I’m sadly single and didn’t have children, I knew I’d never be able to deal with it alone when that fateful day arrives.