Crisis Point after 9 days in a care home

[Kevinl]

I didn't know that someone getting CHC could make a first party top up, I'm sure a social worker told me that when I was talking about CHC. I also remember her saying that any CHC top up was only to be used to pay for services over and above what the home provided and should not be carried out by the home's staff.
I hope the social worker has got it right about using your dad's money as a top up, does anyone know? I thought it was only section 117 and when entering a DPA you can do it.
K

 

[Elle3]

I didn't know that someone getting CHC could make a first party top up, I'm sure a social worker told me that when I was talking about CHC. I also remember her saying that any CHC top up was only to be used to pay for services over and above what the home provided and should not be carried out by the home's staff.
I hope the social worker has got it right about using your dad's money as a top up, does anyone know? I thought it was only section 117 and when entering a DPA you can do it.
K

First of all it was the lady from the CHC who mentioned a third party top up, not the SW, but I later found out you can't do this with CHC funding, it isn't allowed. However, the lady who deals with the finances at the care home told me that sometimes the CHC will only pay for a certain amount of care and any additional care can be paid for by the resident or the family, it's not exactly a top up it's a payment for special services and apparently the CHC turn a blind eye to this not being provided by the home's staff. I still don't like this idea as it doesn't seem right and I mentioned this to our SW and she agreed, that there should be no need for a top up, dad is in the correct care home and in normal circumstances the CCG pays for this. It also brings up concerns regarding when dads funds run out, because if his funds pay for the additional services there is no higher and lower limit when the LA funding steps in, so dads funds would go down to zero. The question then is what happens regarding his care when there is no money left.

I have since had an email from the SW and she has been told by the CHC team that it is a contractual issue, not a funding issue, it's currently being escalated to the Assistant Director of the CCG. Personally I think it's because my dads care home is within a different LA to the one that is funding his care and that's the problem. However the SW said this can happen especially if there are no suitable places for my dad within the LA, which there aren't.

 

[Kevinl]

Sorry Elle, I'm more confused. You say you want to use your dad's money, that is a first party top up, a third party top up has to be paid by a family member, friend or a charity not from his money.
He isn't (as far as I'm aware) able to use his own money for a first party top up them money has to come from a third party like you or the family not him.
The CHC have to pay for all of his care and if he's high maintenance then the CHC has to cover that and the budget adjusted accordingly and the CCG shouldn't be "turning a blind eye" to anything that is not above board.
Quite frankly I think they're conning you into paying something they're actually liable for, but if you're happy with that...it's you're money...as his money can't be used to pay for his care, legally.
It'll be interesting to see what the AD of the CCG makes of all this, will they kick it back to the funding panel for a budget reassessment or accept your dad making payments that are...shall we say not what the law allows for rather than what I'd like to call it.
When his money runs out, should you go down that route then the LA can move him to a cheaper home of their choice or they could then up the budget to keep him there so the only loser will be your dad. Might as well bite the bullet now and see what the CCG offer you without a top up because when his money runs out like as not that's where he'll end his days.
When the lady from the CCG suggested a third party top up that was your money she was talking about, not your dad's money his is first party money so can't be touched other than for extras the care home don't normally supply, as I say I think you're being conned here.
K

 

[Relder]

Hi Elle3
So sorry to hear about your Dad
Your story with echos mine with my mum.
To cut a very long story short, my mum was placed in a care home as an emergency measure when my stepdad who was her carer was hospitalised after suffering a stroke.
The home was on one floor and had fire doors with push bars. My mum exited the building several times every day. The care staff had limited knowledge of alzheimers and would run after mum trying to get her back into the home which caused mum to become threatening both verbaly and physically. I was called daily by the home at all hours to drive there and calm my mum, get her back into the home and on the final weekend she was there, we were asked to provide 24 hour cover as the home could not cope with mum and didn't have enough staff. This went on for 2 weeks trying to get help, not knowing where to turn.
Eventually my mum was assessed and moved to a home that said they could deal with her behaviour. She was there for 3 days untill the home realised they too were unable to meet her needs. Mum was sectioned and taken to hospital for assessment. After 4 weeks in the hospital dementia unit, she is better now than i've seen her for ages. Of course she still has dementia but her meds have been thoroughly assessed and tweeked by staff who have a thorough understanding of her illness.
We are now in the process of finding a care home for her and feeling anxious about the next steps for her. We hope she will settle when we finally find the right place and doesn't end up back in hospital, Ive found out quite a bit about the limited number of homes that will accept residents with challenging behaviour also that they are very pricey due to the level of care needed.
Sorry to go on this really is the short version.
The things I was thinking when I read your story is that unfortunately your Dad can no longer make rational decisions regarding his own welfare therefore even though it is probably the hardest thing ever, you have to step in and insist that social services listen to your wishes regarding your Dads welfare. They have a duty of care. If he has a social worker she should be your first port of call. Also i'm assuming he has a mental health consultant. They will have a CPN who could come out and assess him.
I was very reluctant about my mum being sectioned but in hindsight it should have happened at the outset. She would then have been assessed by experts in the correct environment and her medication looked at. It would have saved her (and us) so much stress.
I truly hope you and your Dad get the help you need very soon x

 

[Elle3]

Hi Elle3
So sorry to hear about your Dad
Your story with echos mine with my mum.
To cut a very long story short, my mum was placed in a care home as an emergency measure when my stepdad who was her carer was hospitalised after suffering a stroke.
The home was on one floor and had fire doors with push bars. My mum exited the building several times every day. The care staff had limited knowledge of alzheimers and would run after mum trying to get her back into the home which caused mum to become threatening both verbaly and physically. I was called daily by the home at all hours to drive there and calm my mum, get her back into the home and on the final weekend she was there, we were asked to provide 24 hour cover as the home could not cope with mum and didn't have enough staff. This went on for 2 weeks trying to get help, not knowing where to turn.
Eventually my mum was assessed and moved to a home that said they could deal with her behaviour. She was there for 3 days untill the home realised they too were unable to meet her needs. Mum was sectioned and taken to hospital for assessment. After 4 weeks in the hospital dementia unit, she is better now than i've seen her for ages. Of course she still has dementia but her meds have been thoroughly assessed and tweeked by staff who have a thorough understanding of her illness.
We are now in the process of finding a care home for her and feeling anxious about the next steps for her. We hope she will settle when we finally find the right place and doesn't end up back in hospital, Ive found out quite a bit about the limited number of homes that will accept residents with challenging behaviour also that they are very pricey due to the level of care needed.
Sorry to go on this really is the short version.
The things I was thinking when I read your story is that unfortunately your Dad can no longer make rational decisions regarding his own welfare therefore even though it is probably the hardest thing ever, you have to step in and insist that social services listen to your wishes regarding your Dads welfare. They have a duty of care. If he has a social worker she should be your first port of call. Also i'm assuming he has a mental health consultant. They will have a CPN who could come out and assess him.
I was very reluctant about my mum being sectioned but in hindsight it should have happened at the outset. She would then have been assessed by experts in the correct environment and her medication looked at. It would have saved her (and us) so much stress.
I truly hope you and your Dad get the help you need very soon x

Thank you Relder for your post, I’m sorry to hear about your mum too, our circumstances do sound like they were going down a similar path.

I am not sure how much you have read in this thread, however things have moved on quite a bit since I started with the crisis. What helped was that we have a very good and experienced Social worker who has been very supportive. Dad is now in an excellent Dementia+ care home and has settled there very well, even though he is still challenging and unpredictable the staff know how to handle him and have lots of experience in how to deal with more challenging behaviour. It is only a small unit which suits dad, it is part of a bigger care home though. It has coded doors, locks on windows and fortunately the residents no matter how hard they try, they can’t get out. There is less noise and crowding, no mirrors (mirrors can cause lots of issues) and there are more staff, but as you said this kind of care does comes at a higher price which was a bit of a shock.

Fortunately with the help of the SW we applied for NHS CHC funding and dad was awarded it a couple of weeks ago now.

I hope you find somewhere suitable for your mum and everything works out ok.

Elle s

 

[Elle3]

I met dad’s GP today at the care home and we had a discussion about DNR’s and hospitalisation, not that dad is in bad health apart from the Dementia, it’s just that they like to be prepared if anything in the future happens and CPR is required. I feel that it’s not something I would like to put my dad through, I know how traumatic and damaging it can be, so I agreed that it wouldn’t be beneficial. But I did agree to hospitalisation though if dad falls seriously ill. Dad’s never been in hospital, so I don’t really know how he would react, especially with the Dementia, but I felt it was worth trying. Not the best discussions to have early in the morning.

I’m off on holiday tomorrow for a week, this is our first holiday in 3 years. We’ve not been able to leave dad for any period of time, but now he’s being taken good care of in the care home I felt we could try a short break. For some reason though I still feel guilty for leaving him and not seeing him.

Take care.
Elle x

 

[Relder]

Thank you Relder for your post, I’m sorry to hear about your mum too, our circumstances do sound like they were going down a similar path.

I am not sure how much you have read in this thread, however things have moved on quite a bit since I started with the crisis. What helped was that we have a very good and experienced Social worker who has been very supportive. Dad is now in an excellent Dementia+ care home and has settled there very well, even though he is still challenging and unpredictable the staff know how to handle him and have lots of experience in how to deal with more challenging behaviour. It is only a small unit which suits dad, it is part of a bigger care home though. It has coded doors, locks on windows and fortunately the residents no matter how hard they try, they can’t get out. There is less noise and crowding, no mirrors (mirrors can cause lots of issues) and there are more staff, but as you said this kind of care does comes at a higher price which was a bit of a shock.

Fortunately with the help of the SW we applied for NHS CHC funding and dad was awarded it a couple of weeks ago now.

I hope you find somewhere suitable for your mum and everything works out ok.

Elle s

Hi Elle
Yes I'm sorry I am new to the forum and didn't realise that since your first post things have moved on quite a bit for your Dad which is great news.
I'm glad you found him somewhere that can look after him. Yes I'm looking into NHS CHC funding too and trying to find the right place to meet mums needs.
regards x

 

[Elle3]

Our first visit with dad this morning, after being away on holiday for a week. No need to worry, we found him wandering around the corridor in his pj's and he greeted us saying he had nothing and had to get home. So no change, he hadn't missed us or forgotten us, it was as though he had only seen us just a few minutes earlier. You soon realise that life just carries on for them within a very small window and then it's forgotten, such are the benefits of dementia!

We had a lovely relaxing time on holiday, it was just what we both needed and we even agreed a week was just long enough. Although this has now got us planning our next holiday, hopefully near the end of September.

I did get some good news this morning when I sifted through my emails. The Social worker had emailed me to say that the CCG Assistant Director has approved dad at full cost for the CHC funding, so we don't have to pay any top up/special extras fees or move dad to another care home. Which is a great relief.

I did mention this to the care home this morning, but as yet they have not had confirmation of this, hopefully it's just going through the system, which usually always takes time.

Elle x

 

[love.dad.but..]

Glad you had a lovely holiday and really good news on full CHC

 

[looviloo]

That's good news all round, Elle - your lovely dad is still ok, you had a much needed break, and the CCG approved the funding! I'm really pleased for you and hopefully you've turned a corner and can relax a little.

We had 3 days away last week, but said we could really have done with a fortnight! Maybe later in the summer we'll have another break. It's good to get away and clear your head isn't it? x

 

[Elle3]

It's been a busy week this week, I finally decided it was time to get dad's house in order and bite the bullet and get some valuations and get it on the market in the next few weeks. So after spending a couple of days cleaning and de-cluttering dad's house, I have had two Estate Agents around to do their assessment/valuation on Wednesday and Thursday.

Things have gone slightly better than I thought, both advised me not to do any work on it, not even on the kitchen ceiling, which totally needs replacing due to the roof that was leaking for a couple of years which dad refused to get fixed as he kept saying he could do it himself, he couldn't. But I finally got it replaced in January, so I know it's now watertight. It also needs a new kitchen and bathroom, then you start looking at flooring and tiling and then the rest of the house could do with modernising etc and they both said, where do you stop, it's not worth it and they are right. It's not worth the stress or the money and the valuations were actually not that bad for it's current condition. I have one more Estate Agent visiting next week, then I will make a decision on who to go with.

Wednesday I visited dad at the Care home and he seemed to think I was his wife again and kept trying to hold my hand and kept asking for a kiss. When he's like this, which isn't that often now, I just can't get him to understand I am his daughter without upsetting him.

When I visited today though, he was totally fine and I ended up reading to him from a war comic which I found in the lounge area. He seemed to enjoy it and he only nodded off a couple of times.

Elle x

 

[Elle3]

Dad’s house went on the market last Monday 6th Aug and yesterday afternoon after receiving a few offers, I have agreed to an offer I am happy with, made by a young couple who are first time buyers.

It’s strange how many mixed emotions I have about this. I am relieved to have sold dad’s house so quickly, but sad that I’m selling his home without him knowing or understanding about it, plus it’s the home I grew up in and it holds so many memories.

Dad has been doing OK recently, there continues to be aggressive behaviour and refusal when it comes to personal care, but the care staff are managing this very well now as they have got to know him and know how to deal with him. We have had a few safe guarding incidents when for 2 days dad thought the lounge area was his and tried to remove all the chairs (including the residents sat in them) and those in wheelchairs from the lounge areas to the corridor, no amount of distraction techniques, removal etc could stop him, even I couldn’t get him to stop. He also wanted to knock down a wall or two!

I finally got around to purchasing some proper name labels for dad’s clothes. So over the last couple of weeks I’ve been sewing them into his clothes. I had originally used a fabric pen, but was finding that this was fading after a few washes and there constantly seems to be an issue at the care home with clothes going missing, I am always finding other people’s clothes in dad’s room, which I give back, but if other families don’t visit as often or as vigilant, things can disappear for weeks.

The paperwork for the CHC funding still hasn’t got to the home yet, so we are still paying the care home fees. I have been advised by the CHC team, that it is still all going through, it’s just all the extra signatures and staff absences that’s causing the delay, they continually assure me that it will be back dated to June, so we will get the care fees we’ve paid so far refunded by the care home.

 

[Sirena]

Sounds like the care home are dealing with you dad really well, it is encouraging to know there is always somewhere which will cope with a PWD's needs.

I know what you mean about selling the house, it's a sad thing to do. My mother's flat was rented, but we moved there when I was 12 so I felt an attachment to it. I heard last week it had been sold and the new owners have got the keys.

I used iron-on labels for my mother (I don't do sewing!) and so far they seem to work fine. Their bedrooms are locked when they aren't in there, so as long as clothes labels get through the laundry okay things don't go missing. I had a problem with shoes and slippers though, and her soft toys which she sometimes takes out of her room, and I was recommended Stikins, so will take some of those in (you just stick them on).

 

[Elle3]

Sounds like the care home are dealing with you dad really well, it is encouraging to know there is always somewhere which will cope with a PWD's needs.

I know what you mean about selling the house, it's a sad thing to do. My mother's flat was rented, but we moved there when I was 12 so I felt an attachment to it. I heard last week it had been sold and the new owners have got the keys.

I used iron-on labels for my mother (I don't do sewing!) and so far they seem to work fine. Their bedrooms are locked when they aren't in there, so as long as clothes labels get through the laundry okay things don't go missing. I had a problem with shoes and slippers though, and her soft toys which she sometimes takes out of her room, and I was recommended Stikins, so will take some of those in (you just stick them on).

Thanks Sirena, the care home is brilliant, I cannot fault them, they are so good at dealing with all the residents and they are all challenging in one way or another. It's quite funny though that usually when one resident is kicking off all the others behave impeccably, then when that one is dealt with and calmed down, another starts. They behave just like naughty children sometimes.

Missing clothes is becoming a big problem in their unit, not so much for my dad, but I have heard other families complaining. The problem is our unit is quite small but it is part of a much larger care home and the washing from our unit gets put with another larger unit and because this unit is larger the assumption by the staff who do the washing is that most of the clothes should go back to the other unit without checking for name labels. There have been meetings about it, so hopefully it is being sorted.

I don't do sewing usually, but I've found it quite therapeutic sitting with my dad whilst sewing on a few labels, I just do a few at a time and dad likes to watch me and sometimes offers to buy the clothes not realising they are actually his own clothes, lol!

Take care.
Elle x

 

[Sirena]

As I was reading your first paragraph I was thinking that they sounded just like naughty children - I think there really is something in that! The one time I saw a resident kicking off in my mother's care home (yelling and slamming her rollator into the doors) all the other residents behaved as if absolutely nothing was happening, my mother and her friend were chatting to me without a care in the world.

I can see why missing clothes in a problem in your dad's unit, I hope they get that sorted out. My mum's socks seem to go missing but I think that is because labelling is an issue (given I don't sew!) Sweet that your dad offers to buy 'his' clothes!

 

[Elle3]

I thought it was time for a little update. The house sale is still going through ok and we have made a good start of clearing dad’s house, although our garage is now looking a lot fuller as much of dad’s stuff has been transferred to our house, we really need to do a car boot. We have also done lots and lots of trips to the refuse tip. I have asked a charity shop to come round and see if they want any of the big furniture items and white goods and then I will have to arrange with the council to remove any bulky items that are left. Dad’s shed is the last thing to tackle and I have to say we are not looking forward to it, as it appears to be full of junk and god knows what, hazmat suit and gloves are required I think.

I visited our Property lawyer yesterday and gave him all dad’s house paperwork, the deeds and freehold etc and I gave him my POA and mums death certificate as the house was in their joint names. I think I signed my life away too with all the money laundering stuff etc.

Dad is still doing well at the care home, although he’s been very sleepy lately. Each time I have visited I’ve found him asleep and when he wakes, it’s for a short period then he’s asleep again. I had to feed him on a Tuesday as he’d slept through lunch, but the staff had saved him a jacket potato, beans and cheese. I cut it up for him but he just didn’t seem to know what to do with it and wouldn’t hold the fork, so I fed him. In the time it took me to take his plate away and come back with his pudding he was asleep again. I did get him to wake up with the help of a carer, fed him his pudding, then he went back to sleep again.

Last Saturday was ‘interesting’ when we arrived we found him asleep, but he’d fallen asleep holding a drink which had spilt all over his trousers. They needed changing. When he woke four different staff attempted to change him, the first was threatened with a knife and fork that dad had in his pocket which he had taken from the dining room, he told us he was going to use them to kill people. I managed to get him to give them to me to ‘look after’, thankfully within seconds dad’s forgotten about them. They left him for a bit, then the second carer tried but he got thumped in the stomach for trying. Then after another 10 mins or so, two carers tried together to get him to change (by this time he had also wet himself) but dad was still refusing and being aggressive. So again they had to leave him and he went off helping the laundry lady push her trolley, we found him 10 minutes later fast asleep again in the lounge still in very wet trousers so we decided to leave and let the staff deal with himas there was little we could do.

I also noticed on Tuesday that dad had large bruises on each of his hands, apparently he had punched a member of staff again the day before.

Yesterday I found an opportunity to tell them again that dad prefers drinking tea and not just coffee all the time. I also managed to get them to understand how he likes it made. They said they had found that most of the men in the unit seem to prefer coffee so they had assumed dad did too. I think care homes sometimes forget they are still all individuals, but I know it is hard to remember everything about each resident. I also took in a large stack of CD’s which were from dads house, mostly 50’s/60’s stuff, I though they might like them

 

[love.dad.but..]

How you describe your dad is exactly how my dad was during a phase and I think waking up within confusion adds to not being able to understand the intentions of people trying to help...flight or fright perhaps an immediate understandable reaction. With dad I likened it to me being in a dream and maybe not a pleasant one and that moment when you wake up and I was not sure if I was still in my dream or awake.

I saw dad's tastes change as he declined things he never ate pre dementia food he had always ate refused... maybe because he wasn't recognising food the same or just not bothered because of the dementia. For as long as it is apparent your dad still prefers tea then the staff should ensure everyone knows that and that should be offered first...at dad's NH they had a list of every resident...tea or coffee...sugar or not ...important for diabetics also...thickened or not etc so easy to check for all staff...there will come a time when it probably won't matter or as I found with dad..drinkibg anything was a plus.

 

[Sirena]

That sounds like a difficult visit Elle. Sounds like the staff are very good with your dad but small thinks like drinks are important both for 'comfort' and for keeping him hydrated. My mother's CH spent a long time giving her squash to drink - she doesn't like it so it got ignored! She gets plenty of tea and coffee so it doesn't really matter. She seemed to become unable to feed herself earlier this summer, and the carers realised she had forgotten how to use cutlery, so they make her food which they can cut up and she can eat as 'finger food'.

Well done on the house clearance, sounds like you have made very good inroads and are moving towards a sale. It all takes a lot of time and energy, but good to feel you are getting somewhere. Good luck with the shed!

 

[Elle3]

How you describe your dad is exactly how my dad was during a phase and I think waking up within confusion adds to not being able to understand the intentions of people trying to help...flight or fright perhaps an immediate understandable reaction. With dad I likened it to me being in a dream and maybe not a pleasant one and that moment when you wake up and I was not sure if I was still in my dream or awake.

I saw dad's tastes change as he declined things he never ate pre dementia food he had always ate refused... maybe because he wasn't recognising food the same or just not bothered because of the dementia. For as long as it is apparent your dad still prefers tea then the staff should ensure everyone knows that and that should be offered first...at dad's NH they had a list of every resident...tea or coffee...sugar or not ...important for diabetics also...thickened or not etc so easy to check for all staff...there will come a time when it probably won't matter or as I found with dad..drinkibg anything was a plus.

You are definitely right about the dream bit, I sometimes watch dad whilst he is asleep and he mutters quite a lot and moves about sometimes, then when he wakes he has such a blank expression on his face as though he still isn't quite there. He barely notices or reacts now to me when he sees me, it's as though I'm there all the time.

I think dad will mostly eat what he is given, but the staff have found that he does struggle with some foods, like trying to eat soup with a knife and fork, so they tend to break up the sandwiches and put them in the soup so he can still use the knife and fork. However some times he just refuses to feed himself, but I wonder if he just doesn't recognise what the food is anymore and doesn't know how to eat it.

Regarding the drinks and dads preferences I gave them all that when he entered the unit, but then there was only five other residents so it was easy for the staff to remember what he liked. Now there are about 16 residents and more new staff I think they need to be re-minded sometimes.

 

[Elle3]

That sounds like a difficult visit Elle. Sounds like the staff are very good with your dad but small thinks like drinks are important both for 'comfort' and for keeping him hydrated. My mother's CH spent a long time giving her squash to drink - she doesn't like it so it got ignored! She gets plenty of tea and coffee so it doesn't really matter. She seemed to become unable to feed herself earlier this summer, and the carers realised she had forgotten how to use cutlery, so they make her food which they can cut up and she can eat as 'finger food'.

Well done on the house clearance, sounds like you have made very good inroads and are moving towards a sale. It all takes a lot of time and energy, but good to feel you are getting somewhere. Good luck with the shed!

My dads the same he looks at squash and doesn't know what it is, he sometimes thinks they are trying to give him alcohol and he definitely won't drink that.

As I just said in an other reply I'm beginning think that sometimes dad doesn't quite know what to do with some food, like trying to eat soup with a knife and fork, but the staff do seem to come up with solutions to manage that. He is certainly not losing weight or wasting away.

The house clearance is going better than I expected the charity finally came this morning and they are literally taking everything, things I didn't even expect them to take, which is a good thing. It is also going to a good cause as they help a large number of people; homeless people, drug rehabilitation, re-house battered wives and ex soldiers etc.

I did try and tempt them with the shed contents, but I think that was going a bit too far, lol