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Wondering what happens next

facline

Registered User
Jul 15, 2020
25
Birmingham
Hello all, hope you're all doing okay today. I'm a long-time lurker and first time poster! Sorry for the rambling post ahead but just needed to share where me and my nan are at with other people who understand...

Little bit of back story: Since lockdown started in March I have been helping my mom care for my nan at home. We moved in with her around 10 years ago after she started having more regular falls - I moved away for 4 years in the middle of this and came back, each time returned home I noticed that she seemed to be getting worse. My mom had been trying to get nan help and had asked GPs to look at a diagnosis or even just a memory test for most of those 10 years but none of them took her seriously because my nan seemed "fine" when they met her at the surgery. As time went on, my nan had more falls and became more confused and forgetful, along with horrendous mood swings and delusions which caused her to be physically and mentally abusive towards both of us. Myself and my mother both have long term mental illnesses and trying to deal with my nan's worsening condition alone made us worse, especially as we had no support to deal with it. My nan was left without proper care or activities and the council refused to fund home adaptations that were recommended by a Falls Team. She hasn't even been able to bathe herself for at least 2 years and refused to be washed down by either of us, only allowing us to use a wash cap for her hair.

Fast forward to June this year and my nan's condition is worse than ever. Following fall number 7 (of this year alone), a paramedic referred to her to the Early Intervention Team with a view to getting respite care for my mom as well as check-ups from a physiotherapist and an occupational therapist. A week later because the pain in her back was getting worse, my nan was taken to hospital for x-rays which included an overnight stay. The hospital didn't keep us in the loop at all and didn't ask us for any information even though she was alone and would have been obviously confused. The only time anyone rang us was when the social worker called about her discharge and recommended that we have one care call put in each morning to wash and dress her (which has been the only good thing about this whole experience!). She was brought back to us by ambulance and even the paramedics questioned if she was fit for discharge - it was horrifying. She was more confused than ever, visibly distressed and crying, talking about her dead brother, saying she saw the Royal Family in the hospital... My mother completely broke down and I attempted to stay strong in order to try and calm my nan down. We managed to get her upstairs to bed and she didn't come downstairs again for 2 weeks due to the pain from the last fall. Since then she has deteriorated rapidly, with even more frequent delusions, confusion, mood swings, hallucinations, calling out, wandering (including trying to go outside to "look for us" in the early hours) and barely eating or drinking - she also had 3 more falls (so 4 since June 8th).

In mid June, my nan was finally referred to a mental health team who assessed her and did a memory test and finally diagnosed her with vascular dementia. She received 2 visits from a physiotherapist who then discharged her saying there was nothing more she could do for her. An occupational therapist visited once and ordered us 2 commodes and a bed bar, all of which we have now returned after my nan refused to use them. The social worker we have been assigned is, frankly, useless and doesn't listen to our concerns when we say that the house isn't safe for her, not just because of the layout but because we are unable to care for her due to our mental illnesses. He seems to think we are trying to force her out of the house and into a care home (it's a council house and we'll be asked to leave when she does and will potentially become homeless so not sure where his logic is there!) even though my nan has expressed a desire to go into a care home herself during the very brief moments when she is lucid; she's even looked at a care home I was recommended by a friend and thought it looked nice. I'm aware that councils will want to put in 4 calls rather than fund residential care but we have expressed concern that the amount of people would confuse my nan, as well as it not being adequate with the high frequency of falls and because the last 3 out of 4 were in the early hours while she was wandering, plus residential care was recommended by the psychiatrist. The social worker also acted incredibly unprofessionally during the needs assessment; talking to my nan about coronavirus conspiracy theories (I think she's confused enough, thanks!) and complaining about his workload to me and my mom. He has also largely ignored all of my questions and made everything feel even more confusing. Due to not being listened to and seeing no end in sight, my mom has had a mental health crisis so I had to take over both my nan and mom's care.

And here we are now: After the fall last Friday my nan had even more weakness in her legs which deteriorated to the point where she couldn't use them at all by the Sunday. On the Saturday night, she spent (we think) the entire night taking her shoes on and off and when I went in to give her her morning meds, her confusion and the way she was speaking made her seem like a completely different person. It was like I'd lost my nan completely. We called an ambulance again and she has now been admitted to (a different) hospital. This is (so far) a completely different experience to the admission last month and with the Early Intervention Team - we are being kept informed, asked what our concerns are in regards to her care, able to have our illnesses taken into account - they even asked us what she likes to eat and other preferences. As we're not allowed to visit at the moment I had been calling twice a day but yesterday the doctor said that there's no change, she's still confused, they'd done some tests for routine things and they'd update us as and when. I'm not sure if she can walk again now or not. They've said that they won't discharge her back to her home and that the hospital social care team is going to be dealing with the care and funding plan (and even mentioned the name of the residential home I'd told them about in passing!). I suppose the reason I keep wanting to ring aside from wanting to know how she is is because I have had to be so pro-active over the last month to get things moving I'm not used to people... actually doing their job (!). I'm still full of dread that she's just going to be dumped on the doorstep again and left.

So... Does anyone have any advice for what we should expect next? I'm assuming it won't be as plain sailing as it feels at the moment? And how much should I keep phoning the hospital? What we want and what all of the medical staff are in agreement with is that my nan should be transferred to a residential home. But I am still worried it won't happen because of funding. And who should fund it in this case, the NHS or the council? I feel a bit lost. I also felt a thud of reality when the doctor called me asking me for DNR consent "just in case". Is that usual? Another thing we haven't been able to sort out is an LPA - our GP refused to be the certificate holder and we don't know anyone else who could do it. Could that be an issue in regards to getting my nan the care she deserves?

If you read to the end, thank you!
 

Louise7

Registered User
Mar 25, 2016
2,248
Welcome to the forum @facline Things are a bit different at the moment with regards hospital discharge funding due to the covid-19 situation. On the plus side if someone requires a care home then the NHS will fund this which may mean that social services will be less reluctant to insist on a package of care first. A 'best interests' meeting should be held prior to discharge involving input from the medical team, social worker and family. This is to discuss the best care option for your nan on discharge.

Hospital staff are usually really busy so maybe ask the ward staff when would be the best time to ring, and how often, particularly as they seem to be already keeping you regularly updated/informed. Ask them for a contact number for the hospital social work team too so that you can speak with them directly. It does seem quite usual for DNR's to be put on elderly patients - we didn't get asked for consent in mum's case so at least they have consulted with you first. It would be best to get LPA's in place as soon as you can - would a neighbour who knows your nan agree to sign the forms? Not having a Health & Welfare LPA won't necessarily be too much of an issue at the moment as it seems that you are being involved in decisions but a financial LPA would be helpful when dealing with thing like care funding and benefits although this shouldn't make a difference in terms of her current care needs/funding on discharge. I can appreciate your concerns about the discharge process after what happened last time but it does sound as though things are a bit more organised this time so hopefully the discharge arrangements will be properly discussed and professionally organised. Fingers crossed for you and your nan and keep posting to let us know how you are getting on.
 

Frank24

Registered User
Feb 13, 2018
32
In a different situation to you but have had some of the feelings you describe. It’s so hard especially when your worried about your Mum too. Getting information can be difficult but it sounds like this time they are doing their jobs l. I certainly hope so. Had experience with a social worker like that too who had in my opinion conversations Thst were not appropriate for someone in my mums state of confusion about being homeless etc.. me and my mums sister found it all a bit bizarre.
 

facline

Registered User
Jul 15, 2020
25
Birmingham
Welcome to the forum @facline Things are a bit different at the moment with regards hospital discharge funding due to the covid-19 situation. On the plus side if someone requires a care home then the NHS will fund this which may mean that social services will be less reluctant to insist on a package of care first. A 'best interests' meeting should be held prior to discharge involving input from the medical team, social worker and family. This is to discuss the best care option for your nan on discharge.

Hospital staff are usually really busy so maybe ask the ward staff when would be the best time to ring, and how often, particularly as they seem to be already keeping you regularly updated/informed. Ask them for a contact number for the hospital social work team too so that you can speak with them directly. It does seem quite usual for DNR's to be put on elderly patients - we didn't get asked for consent in mum's case so at least they have consulted with you first. It would be best to get LPA's in place as soon as you can - would a neighbour who knows your nan agree to sign the forms? Not having a Health & Welfare LPA won't necessarily be too much of an issue at the moment as it seems that you are being involved in decisions but a financial LPA would be helpful when dealing with thing like care funding and benefits although this shouldn't make a difference in terms of her current care needs/funding on discharge. I can appreciate your concerns about the discharge process after what happened last time but it does sound as though things are a bit more organised this time so hopefully the discharge arrangements will be properly discussed and professionally organised. Fingers crossed for you and your nan and keep posting to let us know how you are getting on.
Hi @Louise7, thanks for your reply and information - all very useful to know. I managed to not call at yesterday but had no updates so think I'm going to call and see how she is today. Going from doing everything to not knowing anything is doing my head in a bit!

As for the LPA unfortunately we don't speak to any of our neighbours and the one's that know my nan are all elderly and frail themselves. In terms of finances, my mom has been paying my nan's bills for quite some time and the only bank account she has is a joint account with my mom. We're also on the tenancy for the council house - going to have a phone meeting about how long we'll be able to stay here on Tuesday. Would we still need an LPA just to deal with her benefits?
 

facline

Registered User
Jul 15, 2020
25
Birmingham
In a different situation to you but have had some of the feelings you describe. It’s so hard especially when your worried about your Mum too. Getting information can be difficult but it sounds like this time they are doing their jobs l. I certainly hope so. Had experience with a social worker like that too who had in my opinion conversations Thst were not appropriate for someone in my mums state of confusion about being homeless etc.. me and my mums sister found it all a bit bizarre.
Hi @Frank24, makes you wonder how they got the job, doesn't it?! Hope you're doing okay today.
 

facline

Registered User
Jul 15, 2020
25
Birmingham
Just had a call from the hospital social worker who told me that we won't be able to choose which care home my nan goes into. I'm absolutely crushed by this after having our heart set on a place and also because we don't want her to just be put anywhere :( The social worker knew nothing about her case and was just filling in paperwork which I'm sure is usual but... sigh. She said we should know where she's going by Monday or Tuesday. I assume 4 weeks before being passed to a long-term team is the usual process? Would we be able to maybe ask for a transfer to the preferred care home after the 4 weeks? Although that isn't ideal because of confusing her more... They also said it would be the council paying for care, not the NHS.

I still have no idea how my nan is medically as I haven't been able to speak to anyone on the ward yet, they keep telling me to call back. I know they're all probably busy but I'd just like to know if she's been able to walk again yet, if her test results have come back normal, if she needs clean pyjamas...

The thought of her not coming back home has just hit me hard too. I knew it would have to happen at some point but... everything has just been thrown at us in a month. It's all so sad.
 

facline

Registered User
Jul 15, 2020
25
Birmingham
Just managed to get through to the ward. Sounds like my nan is completely "gone" at this point. Isn't following guidance or commands. Isn't urinating. Hasn't been out of bed at all (they didn't seem to know that she had no use of her legs before I told them just now?!) but has opened her bowels so I assume that means she did it in the bed. They've tested and checked her over completely and found nothing else wrong so confirmed it must be a deterioration due to her vascular dementia. I'm so worried for her. So worried about where she will be taken. I can't believe she has gone so quickly.
 
Last edited:

lemonbalm

Registered User
May 21, 2018
400
Hello @facline . It's not unusual to be unable to follow guidance or commands when you have dementia, so don't worry too much about that. Your nan will be very much more confused in the hospital environment. Anyone with dementia is far more confused in hospital. Once she has been discharged to a care home, she should have chance to settle down. It is a very worrying time for you and it's incredibly stressful feeling that you have no control over what is happening but your nan is on the way to getting the 24 hour care she needs. I assume they will be investigating the reasons for your nan not urinating in the meantime. They should be keeping her hydrated.
 

canary

Registered User
Feb 25, 2014
12,861
South coast
Would we be able to maybe ask for a transfer to the preferred care home after the 4 weeks?
That depends on what your preferred care home is like.
Firstly - will it accept the Local Authority rate of payment? Not many places do and if you insisted on her going there you would have to pay "top-up" fees which tend to go up each year and can become cripplingly expensive.
Secondly - not all care homes will accept the same sort of residents. The care home will want to assess your nan before accepting her so that they can see whether they would be able to meet her needs.
Thirdly - they may not have any vacancies. many care homes have waiting lists (especially the popular ones).

Talk to your preferred care home, find out whether they would want top-up fees. Be brutally honest with them about what your nan is like and find out how they would manage this - woolly answers usually mean that they dont have the experience. You dont want to move her there, only for them to give you 28 days notice to find somewhere else because they cant manage her.

If they would accept her and they dont charge top-up fees, then go back to social services and talk to them.
 

PatAnn

Registered User
Mar 6, 2019
32
As regards your nans council house if you are on the tenancy I'm under the impression that you will be able to stay in the property so please dont let them tell you other wise to be on the tenancy you must have contributing to the rent I hope this will be helpful when you have your meeting best wishes for yourselves and your nan I hope she settles in the CH xx
 

facline

Registered User
Jul 15, 2020
25
Birmingham
Hello @facline . It's not unusual to be unable to follow guidance or commands when you have dementia, so don't worry too much about that. Your nan will be very much more confused in the hospital environment. Anyone with dementia is far more confused in hospital. Once she has been discharged to a care home, she should have chance to settle down. It is a very worrying time for you and it's incredibly stressful feeling that you have no control over what is happening but your nan is on the way to getting the 24 hour care she needs. I assume they will be investigating the reasons for your nan not urinating in the meantime. They should be keeping her hydrated.
Hello @lemonbalm - I'm hoping that the delirium will ease when she's at the home - I'm just so worried now that it will be one of the many local ones I've read bad reviews of :( The doctor yesterday said they've scanned, x-rayed and tested for all eventualities but can't see anything wrong other than the worsening of her dementia. They said she hasn't got a UTI either so are "a bit confused" as to why she is retaining (her bladder had a litre of urine in it). I know they had been giving her fluids via a drip earlier in the week.
 

facline

Registered User
Jul 15, 2020
25
Birmingham
That depends on what your preferred care home is like.
Firstly - will it accept the Local Authority rate of payment? Not many places do and if you insisted on her going there you would have to pay "top-up" fees which tend to go up each year and can become cripplingly expensive.
Secondly - not all care homes will accept the same sort of residents. The care home will want to assess your nan before accepting her so that they can see whether they would be able to meet her needs.
Thirdly - they may not have any vacancies. many care homes have waiting lists (especially the popular ones).

Talk to your preferred care home, find out whether they would want top-up fees. Be brutally honest with them about what your nan is like and find out how they would manage this - woolly answers usually mean that they dont have the experience. You dont want to move her there, only for them to give you 28 days notice to find somewhere else because they cant manage her.

If they would accept her and they dont charge top-up fees, then go back to social services and talk to them.
Hi @canary, Thanks for the info - I've already checked with the care home we were looking at about Local Authority Rate of Payment and all is fine there. They also definitely have a space as they were ready and willing to take her 2 weeks ago after a brief needs assessment over the phone (it's also a dementia-specific home - was recommended by a friend whose grandad is there currently and has vascular dementia) but the social worker stalled with putting the funding application in because he didn't think my nan "really wanted to go". It was only when I got her to talk to him during one of her lucid moments that he realised - unfortunately the next day she then had the fall that hospitalised her. The only thing I don't know about is the top-up fees so I will call and ask about that today. The hospital social worker said that when the long term social worker takes over in 4 weeks I could potentially ask to have her transferred to our preferred home (funding pending, obviously) but it definitely couldn't happen before then. I'm not sure if it would be fair on my nan to transfer her? I don't want to cause her even further distress. I just want to do what's right for her and would make her the most comfortable at this point :(
 

facline

Registered User
Jul 15, 2020
25
Birmingham
As regards your nans council house if you are on the tenancy I'm under the impression that you will be able to stay in the property so please dont let them tell you other wise to be on the tenancy you must have contributing to the rent I hope this will be helpful when you have your meeting best wishes for yourselves and your nan I hope she settles in the CH xx
Hi @PatAnn, although we were on the tenancy we didn't contribute to the rent as my nan received housing benefits (and was also stubborn about us not paying as she said we were only there to look after her!). We do have a good relationship with our housing officer so fingers crossed. Thank you x
 

canary

Registered User
Feb 25, 2014
12,861
South coast
Hi @facline

Im wondering whether its a similar thing to when mum had a TIA and moved to a care home. When mum was discharged from hospital she had 6 weeks under the re-ablement scheme and I didnt have any choice about which care home she was moved to. At the end of the 6 weeks there was a Best Interest Meeting where is was decided where mum should be after that - there was the choice of 1 - go home with a care package, 2 - stay at that care home or, 3 - move to another care home. In mums case she stayed at that care home as it wouldnt have been safe for her to return home and I was very happy for her to stay there, but if I had wanted to (and the care home would have accepted her) she could have been moved at that point.
 

facline

Registered User
Jul 15, 2020
25
Birmingham
Hi @facline

Im wondering whether its a similar thing to when mum had a TIA and moved to a care home. When mum was discharged from hospital she had 6 weeks under the re-ablement scheme and I didnt have any choice about which care home she was moved to. At the end of the 6 weeks there was a Best Interest Meeting where is was decided where mum should be after that - there was the choice of 1 - go home with a care package, 2 - stay at that care home or, 3 - move to another care home. In mums case she stayed at that care home as it wouldnt have been safe for her to return home and I was very happy for her to stay there, but if I had wanted to (and the care home would have accepted her) she could have been moved at that point.
That sounds like what is going to happen in my nan's case yeah... Thank you for making me feel less alone with this, @canary.
 

facline

Registered User
Jul 15, 2020
25
Birmingham
Hey all, hope you're all doing okay today. Quick update: communication from the hospital has been lacking since I Thursday so not really sure how my nan's doing other than she was meant to have been discharged yesterday but I'm assuming that didn't happen as I didn't get a call - think there's a delay as the home is waiting for a special mattress to be delivered for her (presumably a pressure relief mattress). On the upside the social worker told me the home she'll be going to yesterday and it looks great. Has a sensory street and uses a lot of animal therapy which she'll love! I'm so relieved on that front... It also looks like she needs a nursing home rather than residential so our original choice wouldn't have been appropriate anyway! Hoping she likes it at this home and she is able to stay after the 4 weeks...
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,298
69
Dundee
That’s great news @facline.

This sounds wonderful -
Has a sensory street and uses a lot of animal therapy which she'll love! I'm so relieved on that front
.

Fingers crossed all goes well.