Hi there,
Been devouring this forum over the last couple of days and found it so helpful.
I am 55 and have previously cared for my MIL for 18 months in mine and my late partners home until we couldn't keep her safe so she is now end stage in a care home. She has Alzheimers and mixed dementia.
I was widowed two years ago and my life has gone completely to **** in every direction. Just as I decided to wind up my business in huge debt and relocate out of area for a myriad of complex reasons, I was also served notice on my rented house.
I could have dealt with all this but -
In mid January my Step Mum was admitted to A&E with delirium. She is 82. She has been married to my Dad for nearly 25 years, and they've been together for 40.
My Dad has a laundry list of physical health conditions including splenic lymphoma currently classed as in remission, atrial fibrillation, diabetes, hiatus hernia - oh it's all going on.
He has been my Step Mum's carer for about 14 years after she was sectioned due to well controlled paranoid schizo affective disorder going sideways - possibly due to her pretending to take medication and hiding it which my Dad found. She ended up sectioned twice because after her first section my Dad suffered a massive heart attack due to the stress of caring for her when she was still unwell. So back she went.
When she came home she was relatively stable and they have muddled along since January. There was an occasion when she went missing for five hours about three years ago. There has been confusion and paranoud delusions about my Dad having affairs for years, but as long as he said "how high" when she said "jump" things were manageable.
So she's vain and narcissistic and a shopaholic but resolutely independent in some ways and as long as she controls everything they have managed.
She has untreated brain aneurysms picked up a few years ago but refused treatment in case it messed up her hair.
Two years ago she had freezing / absence seizures, witnessed by paramedics and spent 10 days in hospital and then was released. She is incredibly secretive about anything health related.
She had them again on NYE. My Dad got her to the consultant who had seen her before, but was told to just take her home and rest. When he asked about a scan or investigation the consultant just said the brain changes over time and sent them on their way.
Step Mum slept for 12 hours then spent two weeks in a state of delirium. Up for up to 60 hours at a time, ransacking the house etc. Eventually my Dad managed to get the CMHN to come out who reckoned it was UTI and to get a sample to the surgery.
When this proved impossible I was drafted in. My Dad was at his wits end and I couldn't get one either. We rang the GP surgery who advised A&E.
Long story short we are in hell. A&E prescribed antibiotics for "faint markers" in her urine. I think that a UTI severe enough to cause delirium like this would have shown other symptoms but as I'm repeatedly reminded by HCPs I am not a doctor. I mean physical symptoms.
She was admitted to the acute elderly assessment ward then they tried to discharge her in less than 72 hours since she'd rocked up. We told them her history and the lead up over and over but they refused to do a brain scan. We blocked what was patently an unsafe discharge as my Dad was on his knees and brewing a chest infection that turned into borderline pneumonia that needed two lots of antibiotics over six weeks to clear. However, they had told SM she was being discharged before us so this lead to her being aggressive and the whole thing being put down to poor family dynamics.
In the 6 weeks my Dad was ill I visited every other day as they batted her from one ward to another Eventually ending up on the dementia ward. Her florid delusions including some that raised safeguarding flags against my Dad escalated. I communicated with the ever changing cast of HCPs our concerns over and over again.
Eventually the MH team got involved. She was put under section 2 and transferred to the dementia ward at our local mental health facility. There were many, many clusterfucks along the way but the hospital Psych agreed a scan would be a good idea (finally)
This was done about two weeks after transfer.
Fast forward to now. At the mental hospital, her new psychiatrist took her off section after three weeks, was vague about actual capacity (which I know is a variable thing anyway) put her on Risperidone for the agitation and aggression and finally agreed to see us before the discharge planning meeting which was this Tuesday gone.
He reported that the scan showed small blood vessel disease but she definitely did not have dementia, dismissed the aneurysms and basically said she needed to go home as recovery in the community was best and its basically up to us to seek support. He also implied everything was down to marital issues and my Dad's health and wellbeing is pretty much none of his concern.
During the discharge planning meeting it was made clear that SM is a voluntary patient now so if she wants to go home she can, so as my Dad was totally unprepared and it was agreed a phased return was in order.
Fine, we were beaten, and thought a few hours building up to an overnight might be manageable. Well that translated to two hours supervised that afternoon, which went OK apart from her constant disgust at "the state if the place" so all well and good. However, after we left the meeting to rush back and get ready for her arrival Dad tripped over his laces and measured his length on the pavement leading to scrapes and bruises etc so the next day he was feeling pretty rough.
So when SM informed the staff she was going home for an overnight visit, they couldn't stop her, giving my Dad no time to recover. I went round to help. They sent her back in a taxi unsupervised and she immediately beetles over to her neighbours leaving the taxi driver who was obviously under instruction to deliver her home flapping. We saw all this from the window so I went flying down to intercept her. She was most ****ed off declaring that the psychiatrist had insisted she visited her neighbours first and it was none of my business.
I headed her off from seeing the second neighbour - she needed to talk to her about neighbours cat who has been looking for their cat who sadly died around Christmas and make sure it was properly explained to neighbours cat that theirs was dead. (I know, I know, you couldn't make this **** up).
Anyway, I stayed to help make dinner etc then had to leave them to it.
Transpires she really resented my existence and that Dad had bought me soup and a sandwich.
God, I'm sorry this is so long.
Anyway, she is now home for the weekend. My Dad can only contact me in secret as she controls everything. He rang while she was in the shower and said it's going okayish but he's had to be firm with her. However this afternoon they have to go out and buy a sofa she's been obsessing over the whole three months. We're convinced neither sofa nor shop she describes exist.
There's loads more but I'm trying to be concise lol.
She has also withheld his pension credit (as she wanted to divorce him and sell her house - it is hers outright that's another can of sodding worms).
She refused POA so no help there.
Honestly I'm on pins. I don't know how long she can showtime for, nor how she would cope in a crisis of any sort. I won't be able to have a proper conversation with Dad until she goes back on Monday ready for permanent return on Tuesday. My Dad has not been asked for feedback - she's controlling the narrative and everything is fine in her world because my Dad is in "anything to keep our bunny happy" mode.
I just feel helpless and scared for both of them TBH.
So if you've got this far thank you.
I want to complain but PALS have told me firmly to butt out and my Dad doesn't want to rock the boat.
I mean, is this all standard or does it sound as bat**** to you veterans as it does to me? I'm beginning to feel as if I'm the mad one.
Oh she has a longstanding diagnosis of paranoid schizo affective disorder, but her recent personality changes are off the map.
Any insight most welcome.
Been devouring this forum over the last couple of days and found it so helpful.
I am 55 and have previously cared for my MIL for 18 months in mine and my late partners home until we couldn't keep her safe so she is now end stage in a care home. She has Alzheimers and mixed dementia.
I was widowed two years ago and my life has gone completely to **** in every direction. Just as I decided to wind up my business in huge debt and relocate out of area for a myriad of complex reasons, I was also served notice on my rented house.
I could have dealt with all this but -
In mid January my Step Mum was admitted to A&E with delirium. She is 82. She has been married to my Dad for nearly 25 years, and they've been together for 40.
My Dad has a laundry list of physical health conditions including splenic lymphoma currently classed as in remission, atrial fibrillation, diabetes, hiatus hernia - oh it's all going on.
He has been my Step Mum's carer for about 14 years after she was sectioned due to well controlled paranoid schizo affective disorder going sideways - possibly due to her pretending to take medication and hiding it which my Dad found. She ended up sectioned twice because after her first section my Dad suffered a massive heart attack due to the stress of caring for her when she was still unwell. So back she went.
When she came home she was relatively stable and they have muddled along since January. There was an occasion when she went missing for five hours about three years ago. There has been confusion and paranoud delusions about my Dad having affairs for years, but as long as he said "how high" when she said "jump" things were manageable.
So she's vain and narcissistic and a shopaholic but resolutely independent in some ways and as long as she controls everything they have managed.
She has untreated brain aneurysms picked up a few years ago but refused treatment in case it messed up her hair.
Two years ago she had freezing / absence seizures, witnessed by paramedics and spent 10 days in hospital and then was released. She is incredibly secretive about anything health related.
She had them again on NYE. My Dad got her to the consultant who had seen her before, but was told to just take her home and rest. When he asked about a scan or investigation the consultant just said the brain changes over time and sent them on their way.
Step Mum slept for 12 hours then spent two weeks in a state of delirium. Up for up to 60 hours at a time, ransacking the house etc. Eventually my Dad managed to get the CMHN to come out who reckoned it was UTI and to get a sample to the surgery.
When this proved impossible I was drafted in. My Dad was at his wits end and I couldn't get one either. We rang the GP surgery who advised A&E.
Long story short we are in hell. A&E prescribed antibiotics for "faint markers" in her urine. I think that a UTI severe enough to cause delirium like this would have shown other symptoms but as I'm repeatedly reminded by HCPs I am not a doctor. I mean physical symptoms.
She was admitted to the acute elderly assessment ward then they tried to discharge her in less than 72 hours since she'd rocked up. We told them her history and the lead up over and over but they refused to do a brain scan. We blocked what was patently an unsafe discharge as my Dad was on his knees and brewing a chest infection that turned into borderline pneumonia that needed two lots of antibiotics over six weeks to clear. However, they had told SM she was being discharged before us so this lead to her being aggressive and the whole thing being put down to poor family dynamics.
In the 6 weeks my Dad was ill I visited every other day as they batted her from one ward to another Eventually ending up on the dementia ward. Her florid delusions including some that raised safeguarding flags against my Dad escalated. I communicated with the ever changing cast of HCPs our concerns over and over again.
Eventually the MH team got involved. She was put under section 2 and transferred to the dementia ward at our local mental health facility. There were many, many clusterfucks along the way but the hospital Psych agreed a scan would be a good idea (finally)
This was done about two weeks after transfer.
Fast forward to now. At the mental hospital, her new psychiatrist took her off section after three weeks, was vague about actual capacity (which I know is a variable thing anyway) put her on Risperidone for the agitation and aggression and finally agreed to see us before the discharge planning meeting which was this Tuesday gone.
He reported that the scan showed small blood vessel disease but she definitely did not have dementia, dismissed the aneurysms and basically said she needed to go home as recovery in the community was best and its basically up to us to seek support. He also implied everything was down to marital issues and my Dad's health and wellbeing is pretty much none of his concern.
During the discharge planning meeting it was made clear that SM is a voluntary patient now so if she wants to go home she can, so as my Dad was totally unprepared and it was agreed a phased return was in order.
Fine, we were beaten, and thought a few hours building up to an overnight might be manageable. Well that translated to two hours supervised that afternoon, which went OK apart from her constant disgust at "the state if the place" so all well and good. However, after we left the meeting to rush back and get ready for her arrival Dad tripped over his laces and measured his length on the pavement leading to scrapes and bruises etc so the next day he was feeling pretty rough.
So when SM informed the staff she was going home for an overnight visit, they couldn't stop her, giving my Dad no time to recover. I went round to help. They sent her back in a taxi unsupervised and she immediately beetles over to her neighbours leaving the taxi driver who was obviously under instruction to deliver her home flapping. We saw all this from the window so I went flying down to intercept her. She was most ****ed off declaring that the psychiatrist had insisted she visited her neighbours first and it was none of my business.
I headed her off from seeing the second neighbour - she needed to talk to her about neighbours cat who has been looking for their cat who sadly died around Christmas and make sure it was properly explained to neighbours cat that theirs was dead. (I know, I know, you couldn't make this **** up).
Anyway, I stayed to help make dinner etc then had to leave them to it.
Transpires she really resented my existence and that Dad had bought me soup and a sandwich.
God, I'm sorry this is so long.
Anyway, she is now home for the weekend. My Dad can only contact me in secret as she controls everything. He rang while she was in the shower and said it's going okayish but he's had to be firm with her. However this afternoon they have to go out and buy a sofa she's been obsessing over the whole three months. We're convinced neither sofa nor shop she describes exist.
There's loads more but I'm trying to be concise lol.
She has also withheld his pension credit (as she wanted to divorce him and sell her house - it is hers outright that's another can of sodding worms).
She refused POA so no help there.
Honestly I'm on pins. I don't know how long she can showtime for, nor how she would cope in a crisis of any sort. I won't be able to have a proper conversation with Dad until she goes back on Monday ready for permanent return on Tuesday. My Dad has not been asked for feedback - she's controlling the narrative and everything is fine in her world because my Dad is in "anything to keep our bunny happy" mode.
I just feel helpless and scared for both of them TBH.
So if you've got this far thank you.
I want to complain but PALS have told me firmly to butt out and my Dad doesn't want to rock the boat.
I mean, is this all standard or does it sound as bat**** to you veterans as it does to me? I'm beginning to feel as if I'm the mad one.
Oh she has a longstanding diagnosis of paranoid schizo affective disorder, but her recent personality changes are off the map.
Any insight most welcome.