Crisis Point after 9 days in a care home
- Thread starter Elle3
- Start date
That is good to hear and even if you see or hear reports of a bad day remember that on the whole he is starting to settle. Dad never lost his resistance to personal care but I can understand with a confused mind how being approached by carers is very intrusive. Dad's wallet ...nothing important inside...went through the wash. Dad put things in pockets...he couldn't read his watch but always wore one and knew somwthing should have been on his wrist if it wasn't there...after going through 3 cheap watches in the wash or that he broke..I gave up and he got used to it. It is good that you can see physical evidence on your dad that he is obviously eating well...hopefully activities will be sorted soon..it is so important.
Lovely to hear an update and with such promising news. I’m so glad stopping the trazadone has helped. We had to stop the trazadone for dad too as even the smallest amount was making him so sleepy and fall off his chair. He’s so much more alert since coming off of it and the olanzapine, even more aware. Hopefully an activities coordinator will be found soon as the ones in dad’s home are worth their weight in gold.
Good luck with the house sale and continuing health care funding, although dad was so drugged up when they applied for it after being so challenging before that he no longer qualified for it as they said he was ‘stable’ so never got it.
It sounds quite usual to be resistant to care and often dad shouts out but I think that’s because he is scared and can’t see very well. As long as he doesn’t hurt anyone and usually he can be calmed down with gentle explanations.
I’ve also had to go out and buy all new tops and trousers for dad’s expanding waistline as he apparently gets a cooked breakfast every morning!
I do hope things stay as good as they can for you and your dad - it’s nice to enjoy the smooth parts of the ride rather than all the loop the loops in this rollercoaster xx
Good luck with the house sale and continuing health care funding, although dad was so drugged up when they applied for it after being so challenging before that he no longer qualified for it as they said he was ‘stable’ so never got it.
It sounds quite usual to be resistant to care and often dad shouts out but I think that’s because he is scared and can’t see very well. As long as he doesn’t hurt anyone and usually he can be calmed down with gentle explanations.
I’ve also had to go out and buy all new tops and trousers for dad’s expanding waistline as he apparently gets a cooked breakfast every morning!
I do hope things stay as good as they can for you and your dad - it’s nice to enjoy the smooth parts of the ride rather than all the loop the loops in this rollercoaster xx
I’m sorry to hear you didn’t get the CHC funding, it seems wrong that they get it refused based on medication subduing the challenging behaviour, even though it’s been treated it’s still a need and without medication which they have to be given they would again become challenging.
I’m hoping the Care home will assist when dad gets assessed, they have already told me they log all evidence of challenging behaviour etc and all the residents in the home get this funding so they know what they look for. Fingers crossed, my next job is chasing SS to get the ball rolling.
Take care.
Elle x
It sounds like the home is going to fight your dad’s corner for funding so that’s good. Good documentation is everything. Dad was in a psychiatric unit and the manager and social worker fought hard for dad with the paperwork spending hours over it, which made awful reading. By the time he was assessed he’d had no big ‘kick offs’ or episodes for a month so he was deemed stable - even though he has had several episodes in the home he is in in the last year. He has pushed residents and punched and bit staff, and even pushed a poor lady over and broke her collar bone and had to be moved to a different floor they said he wouldn’t get funding so we gave up.
Well yesterday I met with the SW at dads care home to review his care plan and to go through the CHC check list, to see if she can refer him for the proper review.
The review went OK, based on the evidence and the ABC scores dad has triggered a referral, which has to be done within 28 days. However, since dad has been in this new care home, which has now been 5 weeks and his medication has been changed to Risperidone he has become a changed man and according to his file there is now not as much evidence of his challenging behaviour. Yes this is good, but then not so good if you are trying to get a NHS CHC funding.
It appears that the Risperidone is making him a lot more sleepy so he’s not been has challenging, although he still has his moments. I have noticed this too because over the past week each time I have visited which is normally in the morning, dad has been asleep in a chair and when he wakes he just nods off again and he’s become very quiet, even the staff have said he sleeps a lot more now. I am now thinking this can only be a side effect of the medication as he wasn’t like this before, so you solve one problem, but then it causes another, unless you think being asleep most of the time is good.
The SW is now worried that if this continues he may get turned down for the funding when the proper review is carried out. The staff seem happy with the medication and don’t think it needs reviewing. She is also worried that the Care home staff are not actually writing down every challenging incident in his file, because for them as they are more able to cope it’s not such a big issue, we were told dad is always trying to break the window locks and even asked for something to cut them with, but this wasn’t in his file. She has told them they must write every incident down.
Saying all this I did actually witness dad in an extremely agitated state just after the SW left, typical! Dad appeared to be very confused and agitated, he was walking around the lounge removing all the cushions and seat pads from the chairs, opening cupboards and throwing out the contents, trying to clean the floor with his hands, he didn’t know who I was, he was swearing and shouting, trying to break the window locks, he pushed me out of the way, then went to the main doors and was trying to open them, but as they wouldn’t open, he was trying to break them whilst still swearing and shouting. And whilst all this was happening he was being watched by 2 laughing Agency staff who were quite literally doing nothing and probably would not even think to record what was happening in his file, even though this is evidence that dad still has issues, which makes me question how many other things have been omitted. I went and told the nurse about this and he had the audacity to say dad does seem to do this more in the afternoons even though there was no written evidence to show this in his file, you can imagine I wasn’t very happy and I have informed the SW, so she will speak to them too.
Dad is now wearing pull ups and seems to have accepted them quite well, although he still has accidents.
I also went down to dads house again yesterday, I am slowly sorting and bin bagging things up. I’m not sure if I’ve mentioned before, that dad had about 3 buying and hiding obsessions whilst he lived at home. One was chocolate, another was disposable razors and the last one was umbrellas. I am finding less chocolate hidden away thankfully, but I’m still discovering new hiding places for the disposable razors and umbrellas. I have now found 23 umbrellas, mostly brand new, I’ve lost count how many razors it is, as they just go in the bin now.
The review went OK, based on the evidence and the ABC scores dad has triggered a referral, which has to be done within 28 days. However, since dad has been in this new care home, which has now been 5 weeks and his medication has been changed to Risperidone he has become a changed man and according to his file there is now not as much evidence of his challenging behaviour. Yes this is good, but then not so good if you are trying to get a NHS CHC funding.
It appears that the Risperidone is making him a lot more sleepy so he’s not been has challenging, although he still has his moments. I have noticed this too because over the past week each time I have visited which is normally in the morning, dad has been asleep in a chair and when he wakes he just nods off again and he’s become very quiet, even the staff have said he sleeps a lot more now. I am now thinking this can only be a side effect of the medication as he wasn’t like this before, so you solve one problem, but then it causes another, unless you think being asleep most of the time is good.
The SW is now worried that if this continues he may get turned down for the funding when the proper review is carried out. The staff seem happy with the medication and don’t think it needs reviewing. She is also worried that the Care home staff are not actually writing down every challenging incident in his file, because for them as they are more able to cope it’s not such a big issue, we were told dad is always trying to break the window locks and even asked for something to cut them with, but this wasn’t in his file. She has told them they must write every incident down.
Saying all this I did actually witness dad in an extremely agitated state just after the SW left, typical! Dad appeared to be very confused and agitated, he was walking around the lounge removing all the cushions and seat pads from the chairs, opening cupboards and throwing out the contents, trying to clean the floor with his hands, he didn’t know who I was, he was swearing and shouting, trying to break the window locks, he pushed me out of the way, then went to the main doors and was trying to open them, but as they wouldn’t open, he was trying to break them whilst still swearing and shouting. And whilst all this was happening he was being watched by 2 laughing Agency staff who were quite literally doing nothing and probably would not even think to record what was happening in his file, even though this is evidence that dad still has issues, which makes me question how many other things have been omitted. I went and told the nurse about this and he had the audacity to say dad does seem to do this more in the afternoons even though there was no written evidence to show this in his file, you can imagine I wasn’t very happy and I have informed the SW, so she will speak to them too.
Dad is now wearing pull ups and seems to have accepted them quite well, although he still has accidents.
I also went down to dads house again yesterday, I am slowly sorting and bin bagging things up. I’m not sure if I’ve mentioned before, that dad had about 3 buying and hiding obsessions whilst he lived at home. One was chocolate, another was disposable razors and the last one was umbrellas. I am finding less chocolate hidden away thankfully, but I’m still discovering new hiding places for the disposable razors and umbrellas. I have now found 23 umbrellas, mostly brand new, I’ve lost count how many razors it is, as they just go in the bin now.
I can totally sympathise with what you are going through Elle - it sounds very similar to my dad, where he wasn’t stable but was less troublesome due to the medication. It angers me that our loved ones have to suffer the side effects of all the medication in order to be more settled.
If you can try and document all the dates and times of any challenging or odd behaviour that your dad displays yourself and just emphasise to the staff the importance of all incidents being documented. It’s hard though, I know. I would be pretty upset if I found agency staff laughing and doing nothing. At least you have a good social worker on your side.
Dad would have accidents and be wet at night but only when mum or I weren’t visiting as when we visited we would regularly toilet him and ask him if he would like to go to the toilet as he would not think to ask. Now dad cannot walk he is constantly wet and we have ask staff to toilet him using the hoist, which I think they only do when we are there, otherwise they just change his pad. It’s frustrating because we feel he wouldn’t need his clothes changing 3 x a day if he was toiletted more as the pads always leak.
I will keep my fingers crossed for you but I guess you will at least be ok if it rains now anyway!
If you can try and document all the dates and times of any challenging or odd behaviour that your dad displays yourself and just emphasise to the staff the importance of all incidents being documented. It’s hard though, I know. I would be pretty upset if I found agency staff laughing and doing nothing. At least you have a good social worker on your side.
Dad would have accidents and be wet at night but only when mum or I weren’t visiting as when we visited we would regularly toilet him and ask him if he would like to go to the toilet as he would not think to ask. Now dad cannot walk he is constantly wet and we have ask staff to toilet him using the hoist, which I think they only do when we are there, otherwise they just change his pad. It’s frustrating because we feel he wouldn’t need his clothes changing 3 x a day if he was toiletted more as the pads always leak.
I will keep my fingers crossed for you but I guess you will at least be ok if it rains now anyway!
Thank you 70smand, at least I felt a little forewarned after reading your replies about the possibility of the medication and the lack of written evidence in his file making a difference to the review. I was just shocked and disappointed with the care staff after they had been telling me how well they write everything down, well apparently not!
I am writing things down as I see things, but my visits are just small snap shots and mostly he’s been asleep, however, I will question the staff more on each visit.
Nobody can look after our loved ones or anticipate their needs as well as we can, to others it’s just a job, which some do well but others not so well.
Elle x
Ps. Yes, I don’t think I will ever need to buy a brolly again, I just remembered I have 3 more in my car which came from dad, so that now makes 26, lol.
Hi. I hope you don’t mind me butting in. I’ve read a lot of your thread but if I’ve missed the crucial bit I apologise.
Every afternoon without fail my polite confused Mum became a spiteful cow. I could time the flip to almost the minute. She would fall asleep after lunch and wake up a different person. Sundowning had her firmly in its grips. She thought she lived abroad, had a job as a teacher, she shouted at invisible children, imaginary animals I had hidden or killed, taken her freedom. The list was endless and she would snarl at me in her anger. Nothing could be said or done as I wasn’t in her reality. It may have been why the first home were giving lorasapan at 2ish to combate that sundowning.
Once again, apologies if I gratecrashed with inappropriate info.
Me
Every afternoon without fail my polite confused Mum became a spiteful cow. I could time the flip to almost the minute. She would fall asleep after lunch and wake up a different person. Sundowning had her firmly in its grips. She thought she lived abroad, had a job as a teacher, she shouted at invisible children, imaginary animals I had hidden or killed, taken her freedom. The list was endless and she would snarl at me in her anger. Nothing could be said or done as I wasn’t in her reality. It may have been why the first home were giving lorasapan at 2ish to combate that sundowning.
Once again, apologies if I gratecrashed with inappropriate info.
Me
Thank you and now I am butting in because you used the word snarl. And I have not heard this used on this site before but it is SO TRUE. Two of the residents in my OH nursing home kind of curl back their lips like wolves and snarl. At first I was really taken aback but I am used to it now. It is pretty threatening. I am sorry. This is so interesting that you reckon you could all but time the flippin to the minute. Thank you so much. Sundowning is such a problem. Thank you. Gx
Hi Onlyme, thank you for your reply, no need to apologise and I don't see it as gatecrashing at all.
I think Sundowning is definitely a factor with regards to my dads behaviour too and why dad was being given Lorazepam in the afternoon and we had to get the 121 care staff started just after lunch time, all to try and keep dad in check. Even the staff at his new care home have said they have noticed his behaviour gets worse has the day progresses.
My dad doesn't snarl, not at me anyway, but he just suddenly starts swearing for no reason and tightens his fists up and starts to threaten to hit the carers. Luckily they just deal with it very well now.
Elle x
If none of you mind, I'd like to keep this thread going with updates on my dad from time to time. I know the title is no longer applicable/out of date as dad is reasonably settled now in his new home and believe it or not, he has been there now nearly 2 months, no I can't believe it either.
Just to keep this thread updated with were we are now. A week or so ago I started a new thread as it was regards my dads NHS CHC funding assessment. But I will summarise it briefly here.
Over the past month, we have had the initial assessment with the Social worker, doing the ABC's (13th June) and he scored enough A's and B's to be referred to the Assessment board. The Assessors came out on the 26th June and did their assessment with the Priority/Severe/High/Medium etc scores and they also said he was eligible for funding due to scoring Severe for Behaviour, and High for both Communication and Cognition as well as Medium for many of the others. This went to Panel on Monday 2nd July and the Panel agreed with the Assessors and it has been confirmed that dad will be getting NHS CHC Funding.
I can't tell you how relieved and pleased I am that he has been awarded this, to be honest I never expected him to get it, mainly as I had read so many stories on here of people that have been turned down, which I find all very sad and unfair. I am also a bit sad that it is now confirmed how bad Dad's Dementia is.
I think the key to us getting it, was down to Dad's unpredictable behaviour and with his inability to communicate or understand this makes it far worse, he requires almost one to one attention to ensure he does not harm himself, break items or harm others due to his lack of understanding of situations. He also does not cope with noise or more than a few people being around him, even now with only 12 people in his unit it can make dad become agitated. The other key thing was the evidence the care home had been gathering and the fantastic support from dad's Social worker who we will be very sad to lose now that she has to hand dads care over to the CHC team.
I have no idea what happens next, all I know is that the funding will commence from the date of the assessment 26th June, but I'm waiting for all the official paperwork to arrive to tell me what I have to do, if anything. I assume dad will no longer get Attendance Allowance but I'm not sure what happens regarding his pension, so if anyone can help with that, it would be greatly appreciated.
All this is new experience for me, so keeping a record here as it happens hopefully will help me remember and maybe help others.
Take care all.
Elle x
Just to keep this thread updated with were we are now. A week or so ago I started a new thread as it was regards my dads NHS CHC funding assessment. But I will summarise it briefly here.
Over the past month, we have had the initial assessment with the Social worker, doing the ABC's (13th June) and he scored enough A's and B's to be referred to the Assessment board. The Assessors came out on the 26th June and did their assessment with the Priority/Severe/High/Medium etc scores and they also said he was eligible for funding due to scoring Severe for Behaviour, and High for both Communication and Cognition as well as Medium for many of the others. This went to Panel on Monday 2nd July and the Panel agreed with the Assessors and it has been confirmed that dad will be getting NHS CHC Funding.
I can't tell you how relieved and pleased I am that he has been awarded this, to be honest I never expected him to get it, mainly as I had read so many stories on here of people that have been turned down, which I find all very sad and unfair. I am also a bit sad that it is now confirmed how bad Dad's Dementia is.
I think the key to us getting it, was down to Dad's unpredictable behaviour and with his inability to communicate or understand this makes it far worse, he requires almost one to one attention to ensure he does not harm himself, break items or harm others due to his lack of understanding of situations. He also does not cope with noise or more than a few people being around him, even now with only 12 people in his unit it can make dad become agitated. The other key thing was the evidence the care home had been gathering and the fantastic support from dad's Social worker who we will be very sad to lose now that she has to hand dads care over to the CHC team.
I have no idea what happens next, all I know is that the funding will commence from the date of the assessment 26th June, but I'm waiting for all the official paperwork to arrive to tell me what I have to do, if anything. I assume dad will no longer get Attendance Allowance but I'm not sure what happens regarding his pension, so if anyone can help with that, it would be greatly appreciated.
All this is new experience for me, so keeping a record here as it happens hopefully will help me remember and maybe help others.
Take care all.
Elle x
Hi Elle, I've been catching up on your thread... what a lot you've been through! I have some idea how stressful this must all have been but hopefully, for a while at least, you'll have a more settled period to look forward to.
Thank you for being so open and sharing all of this, and everyone else who has contributed too. I have taken a few points from the discussion that might be useful in my own situation, with dad and his potential move to a new care home (I'll update on my own thread).
Yes, I think you should definitely continue to provide updates here. I for one am interested to know how things go for you and your dad, and it will also be a valuable source of information and possibly comfort for others. Plus, it's always something you can refer back to! Take care x
Thank you for being so open and sharing all of this, and everyone else who has contributed too. I have taken a few points from the discussion that might be useful in my own situation, with dad and his potential move to a new care home (I'll update on my own thread).
Yes, I think you should definitely continue to provide updates here. I for one am interested to know how things go for you and your dad, and it will also be a valuable source of information and possibly comfort for others. Plus, it's always something you can refer back to! Take care x
Thanks for the update, it’s good to know that CHC has been awarded. Sorry I can’t help with what happens next but I’m sure someone will be able to say. Please keep posting, I use my thread (what day is it?!) as a way of recording and remembering what has happened in my mums journey
Haha. I wrote this yesterday and forgot to post it.
Haha. I wrote this yesterday and forgot to post it.
Thank you @looviloo and @Rolypoly for your comments, would you believe there has already been a slight hitch with things and a spanner has been thrown into the works with regards the CHC funding.
I've just had a call from the CHC team this afternoon, there is a problem! Apparently because dad is in a Dememtia+ unit, they do not have a contract with this unit in the Care Home he is in. She asked why dad was not in just residential care, I told her about the previous Residential Care home which dad was in and why he had to leave and that I was advised by SS to look for a Dementia+ Care home and the trouble I had finding a suitable home for dad.
She said due to this problem, dad may have to be moved or we would be required to pay a third party top up fee of approx £450 per week which is over £1900 per month. Well we certainly can't afford to pay that. I did say this surprised me as when dad went into this Care Home, I was told that the five existing residents all had CHC funding (no mention of top ups) and one of those residents was from the same town as my dad.
She has gone away to talk to her Manager to see what they can do as I don't think she really wants to move dad due to him being so settled there.
Why us? Aaarrgghh!!!!
I've just had a call from the CHC team this afternoon, there is a problem! Apparently because dad is in a Dememtia+ unit, they do not have a contract with this unit in the Care Home he is in. She asked why dad was not in just residential care, I told her about the previous Residential Care home which dad was in and why he had to leave and that I was advised by SS to look for a Dementia+ Care home and the trouble I had finding a suitable home for dad.
She said due to this problem, dad may have to be moved or we would be required to pay a third party top up fee of approx £450 per week which is over £1900 per month. Well we certainly can't afford to pay that. I did say this surprised me as when dad went into this Care Home, I was told that the five existing residents all had CHC funding (no mention of top ups) and one of those residents was from the same town as my dad.
She has gone away to talk to her Manager to see what they can do as I don't think she really wants to move dad due to him being so settled there.
Why us? Aaarrgghh!!!!
I have spoken to the care home Finance person today regarding the CHC funding. She has explained it slightly differently. She said with CHC you cannot pay a top up fee, but you can arrange to pay a private supplement for the additional Dementia+ element that this care home provides and this can be paid for just like the self funding from my dads funds. There is already someone else who is doing this. So the £400+ would be what my dad pays and the rest will be paid by NHS CHC funding. I am waiting for the CHC to confirm this.
I received the formal letter today from the CCG with the positive outcome for the funding, it was a unanimous decision to award dad the funding which was good to know. They felt dad had care needs in most domains, (they look at the range and levels of needs recorded in the DMT and to reach a recommendation on whether the individual's primary needs are health needs they consider the following domains: Nature, Intensity, Complexity, Unpredictability), but the severity of his cognition and his displayed behaviours impacted on all of his activities and daily living. They concluded that his needs were complex to manage and not routine in nature, hence the reason for awarding the funding.
I received the formal letter today from the CCG with the positive outcome for the funding, it was a unanimous decision to award dad the funding which was good to know. They felt dad had care needs in most domains, (they look at the range and levels of needs recorded in the DMT and to reach a recommendation on whether the individual's primary needs are health needs they consider the following domains: Nature, Intensity, Complexity, Unpredictability), but the severity of his cognition and his displayed behaviours impacted on all of his activities and daily living. They concluded that his needs were complex to manage and not routine in nature, hence the reason for awarding the funding.
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Elle, I've been following your thread... thank goodness this hitch was sorted out?! Why can't anything be straightforward? Have you heard from the CHC yet? Are you happy with this outcome (if happy is the right word)?
I don't know about you, but with regards to my dad I live on my nerves these days, so little situations like this can make me anxious and stressed. It's been a slow build up over the years, but I don't think people in authority (who no doubt have enough stress of their own) realise how much this sort of thing can affect those of us in caring roles. That's certainly how I've found it, anyway. Just my thought for the day ;-)
Thank you looviloo, no it isn't sorted yet I'm afraid, but I've managed to get our amazing Social worker involved even though she was supposed to be handing over to the CHC team. She offered to help and has told me not to worry. She has said she's never come across this problem before so it's an experience for her and today she has emailed me to to let me know that she has spoken to the CHC team and they have advised that it is a contractual issue, which has been raised with their manager and is now being raised with the Assistant Director. So watch this space.
Why can't life be easy sometimes?
Elle x
