If your lo has dementia and is in a care facility, how much is it costing per week.

[TheSummerGrinch]

I know it all depends the area etc.

Mum has Alzheimer's, 7 years in to it now.

She wasn't doing too badly, she lives at home with dad and between my sister and I and a morning carer we were doing ok. Mum was (mainly) continent and went to a day centre twice a week. Things were stressful as they are with dementia but ok.

However, that all changed 6 weeks ago. Mum fell in the garden breaking her hand, dislocating her knee and fracturing her neck. Although mum is ok now with her physical injuries the 3 week stay in hospital has exacerbated her dementia. They allowed her to toilet in the bed and now she is double incontinent.

She came home two weeks ago. She is still often double incontinent although the carers are able to get her on the commode or toilet. They can also get her walking with support and a frame but she is still very weak (she also has osteoporosis and breast cancer). Our carers are wonderful but it's hard going.

We have 6 carers working on a rota 4 times a day but it's very expensive and it still leaves 20 hours a day where mum is either in mine, my sister's or my elderly father's care. We are exhausted and miserable.

We never wanted to put mum in care, no one does but I can't help thinking for maybe not much more than we are paying for the carers to come 4 hours a day we could have mum looked after 24/7 and gain some life back for ourselves?

Tbh, I hate to even contemplate it, I hate the thought of her in care but I'm done. Going to my parents on an almost daily basis has wiped me out.

How much do you pay for a care home privately?

It is less likely nowadays for Social services to move a resident when they take over the fees, simply because there are very few Local Authority care homes left. In our area, there is only one. So often an LA won’t be able to find a cheaper placement.

You are right, SS are not interested if the person has funds over the threshold. You can continue to claim AA when she is privately funded in the care home, so that helps.

My mother was in a dementia care home for 7 years until her recent death. She was paying around £4400 a month, the care home was excellent (south east). The LA took over her fees for the last 18 months and there was no question of her being moved. (Her fees were very 'reasonable' compared with some homes, others nearby charge £6k a month.)

My mother never lost any clothes or other possession - except her glasses. Which she didn’t remember to wear anyway!

I found her care home on

https://www.carehome.co.uk/

It was a homely care home with a lovely atmosphere and I could tell it was right for her as soon as I walked in.

Does your Dad still drive? Or willing to get the bus? If so somewhere he can get to independently everyday/as often as he likes might work well.
If not you could arrange a taxi firm to take him at regular times maybe.

I agree with just turning up to view - our home had no visiting hours, you could visit when you liked between 7am - 10pm. The staff were always very welcoming.

It is truly depressing and I find myself giving it a lot of thought these days.

My neighbour is 92 and in excellent health, he still drives, plays tennis and has a seemingly great life but as you say, he is the exception. The day centre mum was going to tells a different story as does the elderly ward mum was in when she fractured her neck. Wards full of skeletal old people crying out in pain looking like they are willing themselves to die. That has really left it's mark on me, being old and dying is not a peaceful and calm event for most people (certainly not like the serene scenes on films and tv shows).

My dear nan used to tell me to thoroughly enjoy my younger years because old age is often a shit show, she was not wrong.

Yes, there are so many capitalising on this obsession we have with keeping people old and alive yet in poor health. I googled the care company the hospital had organised for mum's rehabilitation care, they made a £6 mill profit last year and have nothing but poor online reviews (which I will also be contributing to) and Barchester care which is owns of the care homes recommended to us is owned by billionaires.

I have certainly come to that conclusion since mum's sudden decline. My parents are lucky to have savings but seeing how woefully inadequate the state paid care has been I fear there must be so many elderly and disabled people out there in a hellish state being left for hours on end and without proper care. it's really not acceptable and the government know this.

It's so awful. My dh had a work colleague who was a gentle giant, he retired then developed dementia, unfortunately it made him violent and he ended up breaking his wife's jaw, she was devastated, he had turned into someone unrecognisable. I despise dementia, it ruins life for all involved.

Thank you for the advice, I need all I can get right now.

The issues is that we never once told SS we were willing to care for mum at home. They came round, found out my parents had savings, said sorry we can not help and left. No other help offered. All doors slammed in our face.

Same with the hospital, the discharge team never once asked who was there to assist dad etc, just offered this care company and that was that. In fact they never once contacted me, I had to do all the chasing. They only told us with an hours notice that mum was to be discharged.

A lot of people my age say they are going to enjoy their lives now and spend spend spend and they are not going to worry about old age. Well, they have been lucky not to have a parent with dementia or complex care needs. After going through this I feel terrified at the thought of having no money put aside for private care and being at the mercy of my local authorities.

Unfortunately due to his challenging behaviour, the reason he couldn't be discharged home was that it wasn't safe for the community - nothing to do with his needs. The hospital will try and send home wherever possible....

Thank you, that's exactly what I am looking for for mum. The lady from ss did offer up one nugget of advice and that was not to be bamboozled by the all singing and all dancing large care homes, she said the smaller and homelier ones are often much nicer in her experience.

Then the LA will do a financial assessment and partially, or fully fund the place. My stepfather had a funded place - he paid £780 a month which was his pension less personal weekly allowance. The LA paid the rest of his fees. However, we couldn’t choose his home, and it was pretty basic but the staff were lovely.

Luckily he still drives. He used to play golf several times a week and is longing to go back to this, we are hoping he can go back to this.

My brother was comparatively young when he became ill - it became obvious to me when he was 70 and I suspect he knew long before that things weren’t right. I’m 68 and intend to enjoy my red wine and cigarettes so I’ll just drop one day and save my children the hassle.

Have your parents separated their savings and bank accounts? If not, it would be wise to do so. Obviously anything that’s solely in your DMs name is hers, same with DF, but joint savings accounts need to be split and any income from pensions etc need to be paid into each person’s own bank account.
If your DM lacks capacity, which it sounds like, then your DF should open new accounts in his m]name and transfer half of everything jointly held into his own account.

@TheSummerGrinch that is a good piece of advice from SS. Some care homes have all sorts of bells and whistles - cinemas, hair salons, cafes - which the resident pays for but will never use.

Most of the senior staff at my mother's care home had worked there for 10+ years, some for 20+ years. They understood the residents' needs and were genuinely committed to their care. It was independently owned, not a chain.

Best of luck finding a good placement for your mother. It can feel very daunting, but sometimes it really is the best option.

Yes my mums was basic too @Soontobe60 but then, she had advanced dementia and stared at a wall 24/7 when she wasn't sleeping so didn't really need anything other than a comfy bed and chair and caring staff.

My dad had dementia and qualified for full CHC funding, he didn’t actually have any other health problems but the dementia meant challenging and unpredictable behaviour including violence so your statement isn’t entirely true.

I want to go as my dh's grandfather did. He had been having a great evening in the pub, came home and as he passed through the doorway had a massive heart attack and was gone before he hit the ground.

Yes, everything was separated several years ago.

We've looked at a lot of care homes for various parents over the past few years and my very general observations (though obviously there is variation) are: those part of a big chain tend to have a very high staff turnover and lower staffing levels in general. Individual or small chains are either lovely and homely or grim and obviously cutting costs to the bone. Not for profit organisations are more consistently nice without being OTT on fancy facilities but not necessarily cheaper as staffing levels are at the higher end.

You wouldn’t need to pay anything at all.

Your parent would have a care needs assessment and financial assessment which looks at what their income is and how much they have in savings (including housing if they own their home). If the savings level is below £14k then social services pays, plus the pension is used, leaving a small amount of “pocket money” for them each week for things like haircuts, new clothing, toiletries. If it’s between £14k and about £23k in savings, there is a sliding scale of how much they pay. If more than £23k then they’d be expected to pay for the care home until their savings drop below that level.

If their spouse is still living in the home they own then that amount isn’t taken into account as there is someone else living there.
https://www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-a-care-home/

Thank you.

That's the conclusion I am coming to. Mum went into respite in April. It took several visits to various homes and we thought we had found the perfect one, run by a brother and sister and the building had previously been their family home which I thought was lovely but upon reflection I don't think it was as great as we initially thought, it too had a grimness about it which I can't quite put my finger on.

It's why we can't simply place mum into care asap because I really want to find the best home we can afford and that will take a while.

Btw, how do we find a not for profit care home? Do they advertise the fact or do we have to start looking on Companies House or something?

That’s most definitely the way to do it or perhaps a toy boy ……

Have you made a short list of possible care homes that offer the right care and are close enough to you?

It can take a while for a space to actually become available and sort a move, so I would get onto viewing them and making a decision ASAP. Two things I would recommend in this:

1. ask other people locally who've been through this with their parents for their recommendations. If you don't personally know anyone, ask on a local site like Facebook or Next Door.

2. look at newer buildings if you can. Purpose built facilities will have things like wider corridors making it easier for residents to get around and not have to squeeze past one another, better equipped toilets and so on.

FWIW it's well worth the money to know your loved one is safe, and such a relief to not panic every time the phone rings.

Re grimness, I think I know what you mean. But a dementia care home is full of confused unwell people, it's a foreign environment. For the first few months I hated visiting, it was sad my mother was reduced to this and I found it very challenging. But gradually I got to know everyone, and all I felt was the kindness shown by the staff. It takes a while to get used to the whole idea, but I miss going there now (and I never thought I would say that). So as long as it feels 'right', don't expect it to feel perfect from day one.

I looked at a not-for-profit home. Unfortunately it was clear the manager only wanted early stage 'easy' dementia patients. He would not tolerate even basic dementia behaviours like pacing 'because it will upset the other residents'. Whereas at my mother's care home they would tolerate any behaviours - except violence.

For MIL it was one on the social services list as she was LA funded. It was a bit of an emergency as FIL had hung on resisting MIL going to a care home until he was dying of cancer. For my mum I started with the CQC website filtered on dementia and good plus assessments and looked at the ownership of my shortlist on their websites. I also checked whether they would accept LA funding with no top up when her money runs out. You are right that just doing the research can be a massive task. We had a shortlist of 8 over quite a wide area. I rejected one purely on their attitude on the phone so we are down to 7.
Mum is only just getting to the stage where she probably needs a care home, not due to personal care needs like washing etc, but because of unsafe behaviours and none of us are local. She pings between being desperate to go into a home and screaming at me that I'm horrible for suggesting visit. So far we've seen 4 of the 8 with an update visit to one and another one next week (this has been a journey of 2 years so far!). 2 we rejected as utterly grim, 2 we liked but thought one might be in too rural and quiet a location for mum (but 2 years on might be a good fit). So far mum.still has the capacity to make her own decision so I have to sell the visits as "so we know in case of an emergency" but given the last few weeks I think we are fast approaching a need for SS to assess capacity again.