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!
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!