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?

I would just advise - if you haven’t already - separate their money so it’s only her half being used to pay.

We have. They have a financial adviser and that was suggested as soon as mum was diagnosed 7 years ago.

Good luck OP - it’s a tough decision to make but a necessary one - I know my brother is safe 24 hours a day and has carers who look after him - I can just be his sister again and not have the worry about his safety needs x

You need nametapes on all the clothes. When my mum went into a care home, it was really reminiscent in that respect of when she sent me off to boarding school.

@TheSummerGrinch why wait two weeks? You could probably have her moved into a home in that time frame.
Bluntly, this isn’t going to get any better, in fact it will only get worse.
You are at the stage of needing 24hr professional care, you, your dad and sister could be back to being child and spouse rather than carers. I can’t see delaying it is going to help any of you.

If you don’t know any of the local homes, local social media groups are often good places to get an idea of ones to go and view. We found it a bit like looking round schools - you got a good idea from the initial response from them what it would be like.
I hope you can find somewhere that suits you all, please don’t wait until you are all utterly exhausted.

Thank you! That’s what I thought it was and I couldn’t think of anything else.

sorry for the derail op!

We did that but they still went missing, apparently they were found under a big pile in the laundry room lol!

I agree but I have estimated that time frame as we will need to start looking around care homes to find the right one.

I want to start researching on the QCC website and asking on the local FB group for recommendations, we need to visit the homes we feel are the best set up for mum. All of this is obviously going to take time, especially as I have other things going on too.

Also, I have to take into account my father's current state of grief, he has lost his partner of 52 years, he wants to spend as much time with mum in their marital home, for the last time,even if that is just two weeks.

When looking for homes for mum (who didn't have dementia but was lonely and tired) we quickly realised what she needed was somewhere sociable, with a good non-dementia offering, good food, not a prison-like approach and open to her having a glass of wine if she wanted one. We did some basic research and turned up unannounced at lunchtime to see what the initial response was. Was a very helpful approach.

It’s very hard. I’m very glad MIL didn’t come home, it would have been a disaster and just delaying the inevitable, and they didn’t have anything like the resources to throw at it that your parents have OP. FIL was not capable of making the decisions that needed to be made - swinging between unrealistic ‘optimism’ and outright denial and not wanting to be the ‘bad guy’. I hope you are able to get more appropriate care in place without delay.

Oh OP - it’s is so difficult - my brother is single so I didn’t have the worry of his partner’s grief but our dad also had to go into care. My mum was devastated but I had to explain that I would have to stop answering her calls at 2 in the morning as he had wandered out of the house, drive an hour to London to look for him whilst having a full time job and children - I went to the doctors for something and just broke down in front of her and said I couldn’t cope anymore (brother was healthy then but did nothing). She was great and talked things over - my guilt was awful. Dad then went into respite care after a hospital stay and never went home. 4 months later mum went to sleep and never woke up - I think she just couldn’t cope with it. It took me a while to stop feeling it was my fault - it wasn’t - it just had to be done - I dread to think what could have happened on his night walks - dad lived for another 3 years. I do hope your dad understands that it is best for your mum. I love seeing the husband/wives of residents in the care home being so loving and caring to their partner - dementia might have taken the person they were but they are still very much loved and cherished x

I've been told on many occasions to turn up unannounced so that's probably what we will do over the next few weeks.

£4000 a week for my uncle, in the most horrible dingy depressing place, but he was rejected by 45 care homes who assessed him, and had to have a 1:1 whenever he was awake due to extremely complex and challenging behaviour, so we just had to take what we could get.

We didn't get to see the home in advance, we were just told this was the only option as he couldn't be discharged home and the hospital wanted him out....

Try and reframe your thoughts; you're not putting your mum in care - you're trying to meet her needs and those of your family, particularly of your dad. He needs to be able to see his wife without the stress of dealing with continence issues. I hope you find somewhere suitable for your mum, that gives her continuity of care.

I am truly sorry for your losses, dementia is a wicked disease and affects everyone involved, it's far reaching.

I truly believe mum going into care may give dad a new lease of life, he is in good health for his age but he is currently stressed and angry. When mum was in hospital for those 3 weeks he said although he was sad she was there he actually felt lifted, he was able to sleep solidly without worrying about mum, he could go out whenever he felt like it and simply potter in the garden without constantly checking in on mum. He's just putting the stoppers on atm because he knows a care home will be permanent, not like the hospital stay.

We used to go to a dementia cafe in a local care home and there was a man there, his wife was a resident and he spent most days volunteering in the home, it gave him a purpose and he could still go and see his wife whenever he wished. I do hope dad finds peace once mum is in care.

We were never given the option for a care home upon hospital discharge.

Tbh, the hospital were next to useless when it came to offering up any help or information, I had to push for everything. They organised a 6 week rehabilitation care package via a care company but they were awful, were meant to stay for 4 visits per day, at 45 mins each time but would only stay for 10-15 mins at a time and would offer up the bare minimum in care. The private carers have done more in this last week than the other carers have done in double that time. They would simply clean mum up and go. The private carers have managed to get mum walking to the bathroom, they shower her every morning and put her in her recliner in the living room. Still not much of a life but far better than the care company.

This is why I want to take some time looking for a care home, it needs to be the right one for mum and her care needs.

Its truly awful isnt it? We proudly parade people of 95 plus in the media but we have to remember that they are the exception. There are all the other elderly people who are having a miserable time,who dont want to be a burden (but are!), who put what they want before any one else's. Its not necessarily their fault. They are just very old.

My late parents didnt want to live as long as they did. One in particular was in a very bad state, at the end she looked like a concentation camp victim. We wanted her to slip away with dignity. She begged to be allowed to go. I found some of the carers literally trying to force her to eat. She didnt need plates of food.

We honestly need a grown up conversation about keeping people alive regardless of what they want and what the consequences are for the wider family.

Someone is making an awful lot of money out of old people. My late Father paid nearly £500k in care home fees. His old house of course needed to be sold. That was something I needed to do and it was in a terrible state.

There must be so many people with dementia and other care needs that are suffering greatly because they could no way afford these care home fees.

Thank you for your words - yes it is a truly horrible disease. Your dad sounds as if he realises this is the best thing for your mum. He will also be able to be her loving husband again instead of her carer. When my brother has needed hospital visits for some personal, intimate stuff, the care home have always sent a male carer with us so I don’t have have to be in the room with him - generally the hospital has also been very understanding- he gets very agitated so he’s seen quickly. Please let us know how you all are doing OP x

(Another) relative has just had a deterioration in his dementia and is going to have to live in a suitable home - £71k pa is what I've been told. Heartbreaking - he and his wife loved each other and up until now she's managed to look after him at home, but very recently he's had spells where he doesn't recognise people and becomes violent. Poor souls.

if they can’t afford it and residential care has been deemed the only option, then the tax payer will foot the bill. Why do you think so many local councils are reducing service precision and on the brink of going bankrupt?

CHC funding will only fund if there are very specific nursing needs. If her needs are mainly ‘social’ then it won’t be funded. So personal care, general incontinence, feeding, giving medication are all social care needs. She might be entitled to Funded Nursing Care however which is an amount that is paid directly to the NH. Any decent NH would automatically apply for FNC is they felt she qualified. DO NOT go through any of the companies you see advertised on tv. They promise you the world but don’t get CHC funding any easier than doing it by yourself and will charge tens of thousands of pounds to do so.

It’s certainly not the staff who are mainly wonderful. I go to a monthly relatives meeting and at the one a few months ago, we were asked if we would help raise funds for a minibus. I researched the company and their profits were over £4 million last year - they have a few care homes. At the next meeting I said the company should provide it but I’m not holding my breath.

What you are describing is the standard care package that most people fight to get. It’s great for your family that they can afford to buy in a higher level of care, but that is not what the tax payer is generally willing or able to provide

If you told social services that you were planning to care for your mum at home, and they already know she’s self funding, then no one is going to try and persuade you to do otherwise. When MIL was facing discharge from hospital, it was clear that they would be fine to have her going home with just the standard 4-visits a day care package and my FIL at home. She was in a very similar situation as your mum OP - dementia, advanced osteoporosis, doubly incontinent and immobile. It was unbelievable that they thought this was appropriate and only backed down when DH pointed out that if she soiled herself overnight, she’d have to lie in it until the next day as there was no way FIL could deal with that. They grudgingly agreed this was the case. We also coached FIL to say out loud that he could not care for her safely at home, and they eventually agreed that residential nursing care was the only option 🙄.