Hello - it's complicated.......

[DarkSideQueen]

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.

 

[SAP]

Sadly I have heard very similarly things before and within my own family, literal could not make up the mess SS, an advocate and MH teams can make. So from that point of view I totally get you.
Whether you SM had dementia or not isn’t something I can comment on but clearly her past mental health conditions and missing meds had created the perfect storm. Mental Health services have gone to the dogs and I have worked with may families who have dealt with the same frustrations and brick walls you have face. However , unless your dad actually refuses to have your SM back there is very little you yourself can do. If you think your dad is at risk you can contact adult social service and put in a safeguarding referral.

 

[Kevinl]

Hello, welcome and never apologise to us on here for a long post. I hope my short post helps in some small way. All here to listen. K

 

[DarkSideQueen]

Thank you so much for your replies.

I probably do just need to vent.

My Dad managed to ring me as he has popped out to do some shopping - she's at home making phone calls to family - I hope she's still there when he gets back.

She got him to take her on a shopping spree this morning. As suspected the shop and gold sofa do not exist, but as she was determined they ended up at DFS. Eye wateringly expensive new sofa being delivered in May. He says she is alternating between being sweet, confused about where here clothes are in the wardrobes etc and combative. He thinks he just has to get used to when the medication kicks in. He sounds OK - perhaps he's relieved that she is home and can keep an eye on her himself.

Fingers crossed she stays relatively level. She's only tiny but when she loses her temper she terrifies me more than the lairy bikers I used to know lol.

Ah well. Onwards I suppose.

Thank you for giving me a safe space to vent xxx

 

[Kevinl]

Well a a now ex-lairy biker with a 4 foot 10 inch wife I only can be thankful our children haven't got both lots of DNA, I hope. Time will tell but the smallest is over 5 feet 6 and none so far has bought a motor bike, time will tell. K

 

[LadyLouise]

This sounds like an absolute nightmare for you and your dad. Whether or not your SM has dementia, her problems are clearly creating a stress load intolerable to your dad, who sounds on the face of it at high risk for stress-induced health problems.

Please take your feelings of alarm seriously and prioritise putting a plan together to protect your dad. Withholding someone’s income is coercive and controlling behaviour in UK law. At the minimum, your dad should have his own bank account that she can’t access, and get any income and benefits in his own name paid directly into that. He should also make sure there are no credit cards that are jointly held, so that he can’t be held liable for her debts. He can’t stop her spending her own money, but he doesn’t have to take her to the store. Maybe work on strategies for coping with the inevitable blow up when he says no.

This is a safeguarding issue for your dad, he is being abused even if she is acting out of delusion and not intent.

Please get advice from Alzheimer’s society and Age UK helplines. I am not convinced a dementia diagnosis can be ruled out, only that there are no obvious markers showing up on a scan. A social worker or domestic abuse helpline like ManKind might also be able to help on protecting your dad from coercive control. He may feel obligated to care from your SM but he shouldn’t be doing this at cost to his health and well-being.

Types of domestic abuse - male victims

The different types of domestic abuse and violence carried out against male victims - including physical, psychological, economic and more.

mankind.org.uk

Best of luck in this incredibly difficult situation.

 

[LadyLouise]

Also, your dad is entitled to a carer’s assessment by the GP. Maybe a good place to start if he has a sympathetic GP?

 

[DarkSideQueen]

Evening all.

Many thanks for all the kindness and replies. I'm honestly so stressed by what's been happening since my initial post, I'm barely on line, but I really need to vent again.

So my SM was actually discharged permanently on the Monday not the Tuesday. Dad was barely able to communicate with me all week except the odd sneaked text, but it seemed all was going reasonably OK.

However. On the Wednesday evening SM had another absence seizure which my Dad observed. When she came out if it, she denied it had happened and refused any input. Thursday morning the manic delirium was back - she'd got up in the wee small hours and when my Dad got up she was obsessively sorting her vast shoe collection and very argumentative when he spoke to her.

The CMHT nurse was due to visit on Friday, but Dad told her what had happened so she went round on the Thursday afternoon, but wasn't really concerned.

Another thing we were concerned about was that SM was sent home for the weekend with Lorezapam (which she binned but Dad retrieved and persuaded her to take) and was also on Risperidone. However, the ten different medications she was on overall had been cut to five, including physical issues, and there was no more Lorezapam. None of this was explained to my Dad as to the reasoning etc, but of course as she has capacity her confidentiality is paramount.

On the Friday of that week, she became more and more aggressive and accusatory. During one argument she picked up a waste paper bin and threatened my Dad with it. Later she tried to punch him but he restrained her by grabbing her wrist to deflect it.

Saturday morning was crunch time. I'd texted to see how things were and Dad said if it carried on I was in line for a lodger. An hour later he's at my house with two bin bags of clothes and medication because she had flown into a rage, poked him hard several times inthe face close to his eye and was on her third phone call to the police when he walked out if the door reporting him for theft and gas-lighting her because he had found the things she'd mislaid.

Now in my books that's a crisis, right? So after a cuppa and getting the full story we talked the OOH crisis team, who were sympathetic, but eventually after talking to managers said all we could do was call 999 if we were worried, which we did. We had to sneak down, my Dad was hiding at the end of the road, and I spoke to the paramedics as by then SM was in the ambulance so couldn't see me.

The paramedics said their hands were tied SM had passed their capacity test, the mention of the absence seizures and untreated aneurysms and mental health cut no ice, plus, SM had said she was afraid of my Dad and was refusing to go to hospital, so as there was no proof either way they couldn't do anything. SM claimed she had no key, yet the house was locked up, and I persuaded the paramedics to essentially search her pockets - where the key was located, strangely enough. So Dad and I beat a retreat and they saw her safely into the house and made sure it was secure.

So that was night 1 of my Dad moving in with me. My house is a wreck due to imminent moving, so my son came round, set up his old bed in the only room with enough space to do so and I'm now in carer mode for him.

So since January he's had repeated chest infections and four lots of strong antibiotics has failed to clear it. With all his health conditions the horrific persistent cough is a clear sign something us wrong. He has list 1.5 stone since his last GP visit before Christmas. It has been the devil's own job to get a GPs attention, but finally he's being tested for everything. It could be his lymphoma, it could be his heart - we're waiting on results of rafts of tests at the moment. And if course stress isn't helpful, although he's remarkably stoic - or completely disassociated - difficult to tell which although he has broken down a few times.

On the Sunday morning we had a call from the police. They were at the house, very concerned because SM had called again about thefts and they couldn't gain entry as she had list her keys again. Fortunately they have a key safe, so Dad was able to give them the code. After they'd done their welfare check essentially, they came to my house, said they could see she wasn't right after briefly talking to her, and said Dad had done the right thing by leaving and not to return if he felt unsafe.

In the meantime OOH adult social services who we'd called the day before, finally sent two carers round to make sure she had eaten and to check medication. SM rang Dad several times begging him to go back, but was also resolute that the Carers were useless and a nuisance so they were off the table. They visited once, yet she complained they had come all through the following week disturbing her.

On the Monday we reported to her CMHT nurse and SW in charge, who went round to check on her. She was fine apparently. And remains fine. She has drafted in a handyman, taken delivery if the new couch, ordered a new washing machine, goes to the convenience store nearby multiple times a day, and even has one lovely neighbour doing her ironing. Another puts her bins out for her. She is shopping for England and thinks my Dad will continue to pay for the bills in the house, although he has stated clearly to her and the agencies involved that his health precludes him from going back while she's as volatile as she is, which may be forever given the track record over the last five months.

There is now some investigation imminent of the seizures and aneurysms but it's the usual long, slow procedure of referral etc . It could take weeks or months to stabilise her apparently. In the meantime my Dad is essentially homeless and I now have a deadline of 20th to move into a new flat, far away from his GP surgery and not big enough for both of us anyway. We've started the process to get him hopefully sheltered accommodation but that will take time, so we're going to find him something temporary where he'll be close to all the health support he needs.

The SW has finally agreed to escort him to get paperwork and clothes tomorrow because going aline could be fatal, to be Frank, and I'm such spawn of the devil if I go she has said she'll sling me out on my ear. She thinks Dad is in a lodging house because if she knew he was staying with me she'd have an absolute conniption.

She's allowed to speak to my Dad like dirt, in between obsessing over her clothes , his birthday (several months away) and Christmas plans. We're not blocking calls as if she's particularly off the wall we report to the CMHT but they are impressed by her I dependence and functionality so never mind anything else. Her "show-timing" is indeed impressive, especially with professionals because she loves the attention.

The community psychiatrist has persuaded her not to sell the house just yet. She wants my Dad back as chauffer, chief cook and bottle washer, and despite his poor health being explained to her she is dismissive claiming he always bounces back.

Honestly reading this back, it seems utterly unbelievable but I promise, you couldn't make it up.

The council are umming and aahing over whether my Dad has made himself intentionally homeless as well, as there is no apparent proof he has left due to DV. But the CMHT and the GP are sending supporting information so fingers crossed eh?

And today, after yet another day of sorting through all the dead people's things in my house, trying to downsize, I got a call from paramedics who had attended my MIL who has end stage dementia in her care home, to say she's had a funny turn, her care us essentially on the palliative path, so no hospitals etc, although she could survive another few years..... a whole other level of hell in the mix.

I wish I had some vodka in the house, but it's probably for the best that I haven't.

I'm disgusted and frustrated by the apparent apathy of the agencies involved though. My Dad has cared for my SM for about 14 years, and he has been shrugged off essentially because her rights and wishes supercede everything else. I won't express my frankly uncharitable opinion of my SM right now. I know she can't help it to a degree, but even my Dad has said she has a nasty streak that whatever is going on with her has massively amplified.

But ultimately, truly, my heart is breaking. This not how I hoped their twilight years would be.

If you've got this far - thank you.

And sending love and solidarity ❤️

 

[Banjomansmate]

It permanently amazes me that social workers and medical workers have apparently never heard of host/hostess/showtime mode in people with dementia and believe implicitly in everything they say or claim, ignoring the input from relatives and carers who live with them and experience totally different behaviour on a daily basis!

 

[DarkSideQueen]

Thank you x Yes it's a huge source of frustration and I'm getting a bit sick of trying to be deferential and respectful when we're spoken to like a pair of interfering naughty children. I have been a bit challenging to one or two professionals over the last few months, and the results have been less communication so I'm trying hard to play nicely.

My Dad and SM have been together nearly 40 years, their 25th anniversary us later this year, nit that it means much beyond SM adding a nice card and present to her list of demands of my Dad..... his birthday is in October and she has already bought him card, cake and presents and given him a considerable list if her expensive desires for Christmas, anniversary and her birthday next year.

Tomorrow when Dad is trying to do a hit and run for his essentials she is adamant he must try on the shoes she's bought for him and the cardigan, as if they don't fit they're going to the charity shop and she'll have to buy something else.

She's listed over and over again the menu and timings of his birthday visit. Which is I suppose an improvement from when she was in hospital and obsessing over his funeral plans. She told me that I'd be allowed to go to the wake for a short time, but I and any supportive friends would have to leave as it's a "nice" venue and they wouldn't want us lowering the tone. Honestly, how I kept a straight and respectful face, I really don't know. She supposed I might be a bit upset, but I'd have to deal with it somewhere else.

So I'm going to loiter on the street tomorrow out of sight, because Dad will need help getting his stuff back in a taxi and also if it doesn't go well, I'm on hand. Plus I really want the SWs opinion of it all.And Dad is telling her that his financial support is ending and they're going to have to sort out her admin somehow, as she's not even capable of understanding her bank statement. Or keeping track of her debit cards which get stolen and returned regularly due to gremlins in the house

Also Dad has applied for his own Pension Credit so hers will get re-assessed. Oh, tomorrow is going to be fun. Which is why, despite being exhausted mentally and physically, I have stress induced insomnia. Not helped by listening to my Dad cough his lungs up periodically. But at least if I hear him coughing it means he's still alive I suppose.

Reading through other similar posts, I'd love to know how they can categorically rule out dementia as her behaviour, other conditions notwithstanding, seem to be absolutely classic and way beyond "pleasantly confused" which is what a multiplicity of professionals have described her as.

Sorry, waffling away again x

Thank you so much for your reply 😊

 

[Kevinl]

Waffle all you want, I'll have maple syrup on mine and chocolate sprinkles.
All here to listen. K

 

[DarkSideQueen]

Ah, thank you so much 💖

Now I fancy a waffle too. Maple syrup and cream would be lush.

 

[SAP]

I have no pearls of wisdom just want to say that this is all so wrong . Your poor dad, I swear some sw are trained “not to see”
dementia and poor MH.

 

[SherwoodSue]

Thank you x Yes it's a huge source of frustration and I'm getting a bit sick of trying to be deferential and respectful when we're spoken to like a pair of interfering naughty children. I have been a bit challenging to one or two professionals over the last few months, and the results have been less communication so I'm trying hard to play nicely.

My Dad and SM have been together nearly 40 years, their 25th anniversary us later this year, nit that it means much beyond SM adding a nice card and present to her list of demands of my Dad..... his birthday is in October and she has already bought him card, cake and presents and given him a considerable list if her expensive desires for Christmas, anniversary and her birthday next year.

Tomorrow when Dad is trying to do a hit and run for his essentials she is adamant he must try on the shoes she's bought for him and the cardigan, as if they don't fit they're going to the charity shop and she'll have to buy something else.

She's listed over and over again the menu and timings of his birthday visit. Which is I suppose an improvement from when she was in hospital and obsessing over his funeral plans. She told me that I'd be allowed to go to the wake for a short time, but I and any supportive friends would have to leave as it's a "nice" venue and they wouldn't want us lowering the tone. Honestly, how I kept a straight and respectful face, I really don't know. She supposed I might be a bit upset, but I'd have to deal with it somewhere else.

So I'm going to loiter on the street tomorrow out of sight, because Dad will need help getting his stuff back in a taxi and also if it doesn't go well, I'm on hand. Plus I really want the SWs opinion of it all.And Dad is telling her that his financial support is ending and they're going to have to sort out her admin somehow, as she's not even capable of understanding her bank statement. Or keeping track of her debit cards which get stolen and returned regularly due to gremlins in the house

Also Dad has applied for his own Pension Credit so hers will get re-assessed. Oh, tomorrow is going to be fun. Which is why, despite being exhausted mentally and physically, I have stress induced insomnia. Not helped by listening to my Dad cough his lungs up periodically. But at least if I hear him coughing it means he's still alive I suppose.

Reading through other similar posts, I'd love to know how they can categorically rule out dementia as her behaviour, other conditions notwithstanding, seem to be absolutely classic and way beyond "pleasantly confused" which is what a multiplicity of professionals have described her as.

Sorry, waffling away again x

Thank you so much for your reply 😊

There are no words…… Sending love and strength. Keep posting