Hello everyone,
I’m new here so please forgive me if this is an old issue and has been answered elsewhere.
My mum, 90 with advancing dementia, moved in with us about a month and a half ago. It’s just me and my partner, but he’s away with work through the week so most of the time it’s just me. And I’m struggling.
The TLDR is, my mum shouts my name periodically through the night and I haven’t had a solid night’s sleep in weeks. It didn’t seem to happen when she was in her own home alone, and has only started since she’s moved in with me. It’s affecting my ability to care for her and my relationship with her. What should I do?
The long story - and it is a long one though I’ll try for brevity - is this:
In order to understand the situation with my mother, I first need to talk about my auntie because it helps to explain why I’ve made the choices that I have. In 2018 I was called on to step into my LPA role for my auntie (who passed away last August). She had vascular dementia. At the time all she needed was someone to organise her life and do some shopping for her. I lived far away and this meant that I needed to reorient my career so as to allow me to travel the hundred-or-so miles to her town once a week or once a fortnight to fill her cupboards up. My auntie had the support of two neighbours (one of whom was very kind, whereas the other, it turned out, was made of nothing but spite - but I didn’t know that at the time) who had both volunteered to be ‘first responders’ on her careline. Eventually of course, she had carers coming in four times a day.
Time progressed and eventually my auntie had to go into a nursing home via a hospital stay. She had skin cancer so needed more care than a regular residential home and there was only one in her area. While she was in hospital, the medical staff suggested that we get an LPA for Health and Welfare in place so I could make decisions regarding my auntie’s care. We hadn’t done that one before but the staff thought it was important. Our family solicitor visited her at the hospital, conducted appropriate capacity tests, and obtained the LPA.
My auntie started to settle into the nursing home and that was when the spiteful neighbour decided to strike. She had been a social worker, I believe, in her working life so knew just how to cause the maximum amount of trouble. I think it was mainly because I had neglected to replace my auntie’s cleaner when she moved away. At least, that was one of the reasons (read: lies) that she put in her email to the Office of the Public Guardian. I’m guessing, but as one of the ‘first responders’ she had been met with some unpleasant situations at awkward times and simply wanted to get her own back.
You‘ll be asking how I know for certain it was her. Complaints to the OPG are supposed to be anonymous, aren’t they? Yes they are. The OPG included her unanonymised email in the evidence pack that they eventually had to produce. It’s a massive GDPR breach, but that’s for Her Spitefulness to deal with, not me.
In any case, the OPG conducted an investigation as they do in ALL complaints whether they’re founded or not. It turned out that they did have a problem with the signing of the LPA HW as their investigation had turned up conflicting reports of my auntie’s capacity at the time. This is all happening through lockdown so things are moving very slowly.
The summary here is that I had to go to court on my auntie’s behalf to fight for her right to continue to have me as her representative rather than some uncaring court appointed deputy who basically only checks to see if she still has a pulse. Why fight so hard and spend so many thousands of pounds? Well….
In 2021 the nursing home staff had organised skype calls with residents as families were unable to get into the home to see their relatives. Over the course of weeks I noticed that my auntie was dozing off more and more in the middle of our morning conversations. I became concerned and enquired. That is when I discovered that the nursing home had been giving her the maximum dosage of Zopiclone for many months. She only weighed 45-50kg, so this is an enormous amount of sedative. She can’t possibly have ever excreted it before the next dose was given. I asked why they had done this and they said it was “because she was walking around at night”.
The nursing home had never sought my permission to administer Zopiclone, nor did they have authorisation from DOLs (Deprivation of Liberties) to conduct chemical restraint.
With the assistance of DOLs, the CQC and Safguarding I was able to force the home to stop sedating my auntie. There have been (to date) no repercussions for the company that runs the home, though I continue to fight. Disappointingly, the CQC’s attitude when it was over was, “well, it’s stopped now”.
By the way, yes I do have the proof that this happened. A subject access request forced the home to hand over the MARS charts (the drug administration records).
Fast forward to July 2022 when a nurse at the home called me at work to tell me that my auntie’s skin cancer had maggots in it.
So that’s why I was fighting. My auntie passed away in August 2022 and no other relative of mine is ever going to be subject to such circumstances.
And now my mum needs more full time care. We’ve moved cities and reorganised our lives so that she can move in with us. She’ll never be subject to the experiences my auntie went through in the nursing home so long as I can help it, but…
…she’s not letting me sleep and I feel like I’m failing her.
I’m new here so please forgive me if this is an old issue and has been answered elsewhere.
My mum, 90 with advancing dementia, moved in with us about a month and a half ago. It’s just me and my partner, but he’s away with work through the week so most of the time it’s just me. And I’m struggling.
The TLDR is, my mum shouts my name periodically through the night and I haven’t had a solid night’s sleep in weeks. It didn’t seem to happen when she was in her own home alone, and has only started since she’s moved in with me. It’s affecting my ability to care for her and my relationship with her. What should I do?
The long story - and it is a long one though I’ll try for brevity - is this:
In order to understand the situation with my mother, I first need to talk about my auntie because it helps to explain why I’ve made the choices that I have. In 2018 I was called on to step into my LPA role for my auntie (who passed away last August). She had vascular dementia. At the time all she needed was someone to organise her life and do some shopping for her. I lived far away and this meant that I needed to reorient my career so as to allow me to travel the hundred-or-so miles to her town once a week or once a fortnight to fill her cupboards up. My auntie had the support of two neighbours (one of whom was very kind, whereas the other, it turned out, was made of nothing but spite - but I didn’t know that at the time) who had both volunteered to be ‘first responders’ on her careline. Eventually of course, she had carers coming in four times a day.
Time progressed and eventually my auntie had to go into a nursing home via a hospital stay. She had skin cancer so needed more care than a regular residential home and there was only one in her area. While she was in hospital, the medical staff suggested that we get an LPA for Health and Welfare in place so I could make decisions regarding my auntie’s care. We hadn’t done that one before but the staff thought it was important. Our family solicitor visited her at the hospital, conducted appropriate capacity tests, and obtained the LPA.
My auntie started to settle into the nursing home and that was when the spiteful neighbour decided to strike. She had been a social worker, I believe, in her working life so knew just how to cause the maximum amount of trouble. I think it was mainly because I had neglected to replace my auntie’s cleaner when she moved away. At least, that was one of the reasons (read: lies) that she put in her email to the Office of the Public Guardian. I’m guessing, but as one of the ‘first responders’ she had been met with some unpleasant situations at awkward times and simply wanted to get her own back.
You‘ll be asking how I know for certain it was her. Complaints to the OPG are supposed to be anonymous, aren’t they? Yes they are. The OPG included her unanonymised email in the evidence pack that they eventually had to produce. It’s a massive GDPR breach, but that’s for Her Spitefulness to deal with, not me.
In any case, the OPG conducted an investigation as they do in ALL complaints whether they’re founded or not. It turned out that they did have a problem with the signing of the LPA HW as their investigation had turned up conflicting reports of my auntie’s capacity at the time. This is all happening through lockdown so things are moving very slowly.
The summary here is that I had to go to court on my auntie’s behalf to fight for her right to continue to have me as her representative rather than some uncaring court appointed deputy who basically only checks to see if she still has a pulse. Why fight so hard and spend so many thousands of pounds? Well….
In 2021 the nursing home staff had organised skype calls with residents as families were unable to get into the home to see their relatives. Over the course of weeks I noticed that my auntie was dozing off more and more in the middle of our morning conversations. I became concerned and enquired. That is when I discovered that the nursing home had been giving her the maximum dosage of Zopiclone for many months. She only weighed 45-50kg, so this is an enormous amount of sedative. She can’t possibly have ever excreted it before the next dose was given. I asked why they had done this and they said it was “because she was walking around at night”.
The nursing home had never sought my permission to administer Zopiclone, nor did they have authorisation from DOLs (Deprivation of Liberties) to conduct chemical restraint.
With the assistance of DOLs, the CQC and Safguarding I was able to force the home to stop sedating my auntie. There have been (to date) no repercussions for the company that runs the home, though I continue to fight. Disappointingly, the CQC’s attitude when it was over was, “well, it’s stopped now”.
By the way, yes I do have the proof that this happened. A subject access request forced the home to hand over the MARS charts (the drug administration records).
Fast forward to July 2022 when a nurse at the home called me at work to tell me that my auntie’s skin cancer had maggots in it.
So that’s why I was fighting. My auntie passed away in August 2022 and no other relative of mine is ever going to be subject to such circumstances.
And now my mum needs more full time care. We’ve moved cities and reorganised our lives so that she can move in with us. She’ll never be subject to the experiences my auntie went through in the nursing home so long as I can help it, but…
…she’s not letting me sleep and I feel like I’m failing her.
