Cost of carers

[Viva]

Hi there

My husband's Mum has recently been diagnosed with Mixed Dementia - vascular and Alzheimer's. She is still living at home though now struggles with showering, going out to buy food and eating. She has help from my other sister-in-law who visits her weekly. My husband and I live abroad but go over three times a year to see her and we stay with her whilst we are there. My husband has just filled out an attendance allowance form on her behalf which has a lot of questions in it about care needs. We are both POA for her finances and healthcare. My question is will the NHS or Social Services fund carers going in fully or partially or does it all have to be paid for by my MIL? If anybody could shed any light on this I'd be really grateful. Also where do you find carers from? Is it through Social Services or via private companies? Many thanks in advance.

 

[CardiffGirlInEssex]

It depends to some extent which part of the UK your PWD is in. If she is in England and owns a property and/or has more than a few thousand pounds in savings, she will have to pay. In my experience so far, paid for care tends to be more reliable than what the council or NHS will fund, but none of it is all that great.

 

[maryjoan]

The thing with the Attendance Allowance form is that one has to create the worse scenario possible - not exaggerate but tell it as it really is.

My friend whom I saw yesterday, has just had word back from their application, and was pleased to see that they were given the higher rate. On the other hand, I completed a similar form for a little girl I fostered who has spina bifida and was paralysed from the waist down, could do nothing for herself, could not speak etc etc - that form came back saying she was not sufficiently disabled !!

Shop around for carers if you are paying yourselves - some agencies are worse than others. Our saving grace in employing a 'personal assistant' so that it is the same person all the time. Most councils have a list of such people - or you could advertise. I know of some people who employ 2 or 3 PA's so there is always someone there with the PWD - which may be something to consider for the future.
Good Luck

 

[canary]

If she is in England and owns a property and/or has more than a few thousand pounds in savings, she will have to pay.

All the while she is living at home the home will be disregarded. If she has savings of more than £25,000 she will be self-funded; below this the Local Authority will part/wholly fund. The less she has in savings the more they will fund and the less she will have to pay - once her savings are down to £14,000 the LA will fully fund. Remember, though, that they have their maximum that they will pay - it varies by area, but generally the maximum that they will fund carers coming in is 3 or 4 times a day. They will generally fund day care too.

The best thing to do @Viva is to contact Social Services for a Needs Assessment and find out what they can offer. Even if you are self-funded they may know of something that you had not thought about, OHs Social Worker suggested day care in a place I did not even know about and will need a referral from SS in order to go.

After the Needs Assessment your mum will get a Financial Assessment to work out how much (if anything) she will need to pay. Of course, if she is self-funding there is nothing to stop you getting additional help. Carers are usually organised through an agency.

 

[Shedrech]

hi @CardiffGirlInEssex
here's a link to the main AS site's pages on paying for care

https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care

and the directory of local services
https://www.alzheimers.org.uk/find-support-near-you

 

[CardiffGirlInEssex]

hi @CardiffGirlInEssex
here's a link to the main AS site's pages on paying for care

https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care

and the directory of local services
https://www.alzheimers.org.uk/find-support-near-you

Thank you

 

[Viva]

Hi Everyone, thanks very much for your replies. They were useful. I have one more question though. When carers are needed does the GP make the referral to Social Services or could we make the referral ourselves? I don't know how it works. Many thanks again.

 

[Louise7]

You can contact social services yourself to request a care assessment, although a referral from the GP might help to speed things up a bit.

 

[Sirena]

Exactly as Louise7 says - you can ring SS yourself, but if the GP does it they tend to respond quicker. However that assumes the GP gets on the case quickly themselves.

 

[Viva]

We are at the stage where she needs help with washing and shopping. Also she needs to be encouraged to eat. Her daily diet is a bowl of Crunchy Nut Cornflakes for breakfast if she remembers and maybe a cuppa soup in the evening. When we're with her she eats three meals a day provided I make them for her. She will wolf everything on her plate. It's so sad she won't bother looking after herself when she's on her own. So she needs encouragement to eat. We took her for a Flu jab recently and the nurse told me that she needs a dietary review. My MIL denied there was anything amiss but I told the nurse about her eating habits and got her to weigh her. Also she did two blood pressure checks and they were both too high and the nurse suggested a GP appointment and review to put her on medication. So that's where we're at right now. The GP is very efficient so if she needs to get a needs assessment I'm sure she'll put her forward for one. Thanks everyone for your advice.

 

[Sirena]

Hi @Viva It isn't that she doesn't 'bother' to look after herself, it's that it either doesn't occur to her, or if it does she cannot remember how to do it. She has lost those life skills. She will probably not acknowledge that or understand she needs help.

My mother was at that stage when I got carers in for her. She could not prepare food and she needed encouragement to eat. It was important for the carers to be there for her meal times and sit down with her while she ate - and also important that they gave her drinks and made sure she drank them so she didn't get dehydrated. My mother had self-funded carers so they had time to do this. SS visits are 30 minutes so unfortunately the care tends to be more cursory.

 

[Rosettastone57]

Hi @Viva It isn't that she doesn't 'bother' to look after herself, it's that it either doesn't occur to her, or if it does she cannot remember how to do it. She has lost those life skills. She will probably not acknowledge that or understand she needs help.

My mother was at that stage when I got carers in for her. She could not prepare food and she needed encouragement to eat. It was important for the carers to be there for her meal times and sit down with her while she ate - and also important that they gave her drinks and made sure she drank them so she didn't get dehydrated. My mother had self-funded carers so they had time to do this. SS visits are 30 minutes so unfortunately the care tends to be more cursory.

I agree with @Sirena. My MIL simply lost the ability to plan meals and decide for herself what she needed in the way of shopping and food to organise and cook a meal. If a meal was prepared for her and put in front of her and the other person was still present chatting to her she would eat it. She had a carer come in every lunchtime 7 days a week to prepare her a meal and would sit and chat with her and make sure she had a hot drink with her as well. If that never happened she would have starved to death by now. My mother-in-law never do this on purpose as other posters have said it simply never occurred to her to make herself a drink. Eventually this became a crisis situation and she went into hospital with dehydration in the heatwave . Even with carers coming in at lunchtime she simply couldn't remember to continue to drink when the carers were never there . Eventually she ended up in full-time residential care. The situation you are describing I'm afraid is very common and it's a progression of this illness

 

[Duggies-girl]

My dad is the same. He truly thinks he has eaten and he truly believes that his shirt was clean on this morning. If I don't do him a meal he won't have one.

It's just part of the dementia, he can't help it.

 

[Sirena]

I agree with @Sirena. My MIL simply lost the ability to plan meals and decide for herself what she needed in the way of shopping and food to organise and cook a meal. If a meal was prepared for her and put in front of her and the other person was still present chatting to her she would eat it. She had a carer come in every lunchtime 7 days a week to prepare her a meal and would sit and chat with her and make sure she had a hot drink with her as well. If that never happened she would have starved to death by now. My mother-in-law never do this on purpose as other posters have said it simply never occurred to her to make herself a drink. Eventually this became a crisis situation and she went into hospital with dehydration in the heatwave . Even with carers coming in at lunchtime she simply couldn't remember to continue to drink when the carers were never there . Eventually she ended up in full-time residential care. The situation you are describing I'm afraid is very common and it's a progression of this illness

My mother had lost a significant amount of weight before I realised what was happening. Originally I had the carers give her breakfast and lunch, and leave her a sandwich for dinner. But one day she ignored the sandwich and tried to make herself toast in the evening, and set the grill on fire. So we then had a carer for an hour in the evening to give her dinner as well. I found you tend to resolve one problem only to be met by another, and as you say you end up at crisis point. My mother is now in residential care too.

 

[Viva]

Hi there

Yes I know that not eating and drinking is part of dementia. With my MIL there are some contributing circumstances though to her eating habits. Her husband had stomach and throat cancer and gradually could eat only soup. He used to get angry with her if she prepared herself any food so gradually to avoid being shouted at she started eating what he ate. She lost weight rapidly. This was six years ago. He died in 2013 and her eating habits stayed the same. She drinks copious amounts of milky sugary tea all day so is actually hydrated. Her other issues include low self-esteem where she feels she's worthless and also believes she will run out of money if she spends on food. These issues were there before the dementia started. She has denied herself things all her life and this includes buying anything for herself be it clothes or otherwise. So it's a bit more complicated than I had explained. However, I agree that she will be needing carers imminently and we are looking into that. Thanks for all your replies.