FIL - stroke, vascular dementia. MIL not coping.

[supersop60]

My Fil (85) had a severe stroke about 3 years ago. He spent about 15 months in hospital and a care home, then came home to live with MIL(82)
Although he is getting physically stronger - can walk with a walker around the house etc he has carers coming in at least twice a day to help with getting dressed, personal care and so on.
However - he is extremely difficult to live with. He refuses to wear his hearing aid, so can't hear/doesn't listen. His eyesight is getting worse - cataracts, and his personality is becoming really nasty and demanding. My DP says he always was bossy and controlling (I'm thinking narc) and now he expects MIL to run around for him ALL THE TIME, and gets angry and huffy when she can't.
She is getting very depressed and tearful and my DP says she's a shadow of herself physically. She has always been very fit and healthy (used to run ladies' keep-fit classes). Recently she tore a tendon in her leg (didn't tell us) and has been hobbling around trying to do the usual things when she should have been resting. They have had extra helpers and my DP is there now, but he says it's awful. The two of them start the day shouting at each other (Fil wakes up at 5.30 demanding to stroke the dog or whatever, and just keeps shouting until someone appears) and the atmosphere is vile.
DP, Mil and Sil have decided it's time he went permanently into a home. Unfortunately, 3 care homes, where he's been for respite, have refused to have him back. We're not sure if he will be taken in for physical reasons, or if his care will have to be paid for because he has dementia.
Can anyone shine a light in any part of this dark tunnel?
For info - PILS moved to a remote area to retire, and it's about 5 hours away from DP and SiL.

Presumable he's had a social services assessment of needs in order to get the helpers. You might like to have him reassessed. Does he still have capacity to make decisions? - if so, you will need is consent to move him into a care home.

MIL is also entitled to an assessment of her needs, as a carer. I've never been down that route so I don't know how helpful it is.

if his care will have to be paid for because he has dementia Care isn't paid for on the basis of the underlying illness, it on the basis of his needs. So if his needs are social - eg washing, feeding, getting around - then he won't get his are paid for. If they're mainly medical, then he may get Continuing Health Care funding (CHC).

If he doesn't get CHC (and that's the most likely outcome with dementia, although if he's getting aggressive and hard to deal with in a care environment, that gives him a few more "points"), then care can be provided, but on a means tested basis. IF MIL is still living in the home, its value won't be taken into account in the means testing.

Thank you. Quite a lot has changed since I posted last week. My DP is with them now, and has taken Mil to the doctor, so he is aware of the effects this is having on her.
There will be a new assessment - current social worker is on annual leave, but her manager has been made aware of the urgency and immediacy of the situation.
Mil has lost 2 1/2 stone - a quarter of her body weight. She just can't cope anymore.

Your poor MIL.

did the care homes refuse to have him back because of his behaviour?

Rosawaiting - yes. In the most recent respite care he was verbally abusive to a carer. In two others he was grumpy and continually demanding. We are hoping that these homes will bear witness to his awful behaviour - MIL has to put up with it all the time. She's threatening to take the dog and just leave.They've been together nearly 60 years, and she hates and resents him now, and yet is also consumed with the most awful guilt.

been

would he be privately funded?

I think if she has somewhere to go, she should leave.

He would only be privately funded if they sold the house, and even then, it's a finite amount.
I've said she can come to us. In fact, I told DP to tell the social worker that if she doesn't get things moving immediately, he will bundle his mum into the car and bring her home with him.

Oh good...glad she has somewhere to go.

Hi op. I've had / have something similar with my MIL who had a stroke 10 years ago.

To be blunt she made my fil's last few years hell. He was far too proud to say anything and when we visited once a month (they're a 2.5 hour drive each way on a good day), she's perk up so we didn't realise what she had become. She literally ground him down. Taking over her care has been a rude awakening.

I pushed very very hard for mental health / psychiatrist involvement via the gp. They have tinkered with medication over the past 9 has helped to a degree.

Turns out she has vascular dementia, but also psychosis and frontal lobe damage (uninhibited and has brought out a monster in her) as a result of the stroke. Things remain very tough but they're a hell of a lot better than they were even 2 months ago.

Do you / husband and / or MIL have power of attorney? If not you really need to get that sorted ASAP it will make your life a hell of a lot easier in the future.

Do not rely on social services. Our experience has been nothing short of dreadful and is the subject of an ongoing complaint.

Good point about POA. I think my DP and his dsis are pushing for this. Fil has to agree though, which might be tricky. Because of his memory problems, he denies doing (or saying) what he said the day before. I've suggested that DP videos him.
testing Can you tell me what your complaint is? we are struggling with the fobbing off and lack of urgency (they're on annual leave, not in the office today etc etc)

testingtesting and RosaWaiting - thank you both for your input.
Great news for us today! The Social worker in charge of my Pils case came to the house for a meeting, and everything can now go ahead asap for my Fil to go into a home. She expressed surprise that Mil had waited so long to ask for help!!! (you have to ask - they don't offer!)
Finances are all in place - there is a fixed contribution by my Pils, and the LA make up the rest, whichever home he ends up in.
It's all moving swiftly now, thank goodness.

Hi @supersop60 sorry for the slow reply. Re SS where do I start. I'd like to make clear I'm sure my experience is not representative of everyone but basically in my experience re my MIL, social services have been nothing short of useless and dismissive. Our experience sounds like yours - ignored, fobbed off etc. They tried to financially assess my MIL despite being clearly capable of checking in and qualifying for continuing healthcare. We have to be frank had no help other than to be told we "need nursing care" and to look and find it ourselves because we're self funding - this was a few months before continuing health care was approved.

Pleased to hear there is movement and things have progressed a Definitely keep an eye on the caretobedifferent website as at some point you may find you qualify for continuing healthcare - it isn't easy to get but definitely worth fighting for. Good luck.

Update - not moving so swiftly. Fil really liked one home they looked at yesterday; unfortunately, they don't have room for him with his particular needs (this didn't go down well - eg how dare they victimise me, I haven't got dementia, DW is lying again etc)
This afternoon, another home turned him down after seeing his assessment and also talking to carers from the home where he blotted his copybook. DP is dreading telling him. DMiL has gone from elation to despair very quickly.

It sounds like a psychiatric assessment would be helpful. They should be able to work with staff in the care home to help them manage his behaviour, although this may involve considering medication. You also need an assessment of his capacity , and he needs to be capable to grant you Poa, otherwise you might have to consider guardianship. ( this is Scottish law, may be slightly different in England)
Your GP should be able to make to make the psych referral.

You

How would a psychiatric assessment actually help? Sorry - that sounds accusing and just want to understand what else it would achieve. He's already had a needs assessment.
The main problem is his rudeness and nastiness towards the people who are helping him. My DP and I have slowly come to the conclusion that he has always been a controlling, selfish narc, but it was always filtered, and now it's not. He's been to 3 care homes for respite, and they've all refused to have him back. If there's no-one in the home qualified to meet his particular needs (or in his case, wants) what the hell do we do?

Are you suggesting he might have some kind of 'calming' medication?

You have my utmost sympathy. My DM had a massive stroke 4 years ago and it’s been extremely hard for the family. My DF was driven to a suicide attempt by the aftermath.
DM is reasonably settled in a nursing home now, but it’s still stressful.
The home DM is in has a dedicated dementia floor.

I’m a bit confused why homes are refusing him because of his behaviour- surely dementia patients are always going to have behavioural issues.?

The Vascular dementia is a fairly recent diagnosis. His awful behaviour has been apparent since the respite care after his (massive) stroke, where he became very demanding and complaining. He expects there to be some kind of servant waiting around to attend to his every need at every moment of the day eg move me into the sun/out of the sun, take my jumper off/put it on, who's taken my pen? where's my pen? I need my pen! The blanket goes over there OK???,

My DP has been with them for nearly 3 weeks (half the school holiday) and he's going nuts with the constant demands and arguing.
So how much of this is his 'true' personality and how much is dementia, I don't know.
Sorry - that was very rambling - my DP vents to me and I'm just sharing the love!

Hi OP, your Situation sounds frighteningly similar to mine.

Re the psychiatrist after my MIL's stroke she was put on anti depressants. Since the psych involvement, get have changed medication and added some other things - initially we resisted as we were worried she would be like a zombie. However, they seem to have helped to a degree although she is to be frank still a nightmare. We may reach the stage where we need to give her stronger drugs that could have a sedating effect but that will absolutely be a last resort.

I think I mentioned before my MIL has frontal lobe damage due to her stroke. This means she is uninhibited / has no filter - it has brought out the ugliest parts of her personality. It has been helpful to establish this as we now know that much of our problems at present is that, not the dementia. Also, because her behaviour is so extreme (with aggressive outbursts to herself and others) the psychiatrist has referred her to neurology for a brain scan to really get to the bottom of things - we're awaiting a follow up appointment to discuss the results.

I'd definitely push for an assessment if I were you, it might help. Sorry you're going through this. All I can say is remember you can only do what you can do. We've tied ourselves in knots trying to keep MIL happy and preempt problems. I've had a lightbulb moment though over the past 6 weeks and realised it just isn't possible because she constantly moves the goal posts, it is as though she wants to be difficult. I've no idea if she means to and is being vindictive or not but it's been helpful to stop putting so much pressure on ourselves.

The fact that 3 respite homes have refused to have him back suggests that care homes may be reluctant to accept him, or may struggle to cope when he is admitted. A psychiatric assessment can help to put together a plan to help to support staff to manage his behaviour. Some services have clinical psychologists who can form a behaviour plan so that all staff are approaching him in the same way. There can be a community nurse who visits the care home to support staff and family if things are difficult. Medication to calm him can be part of this but should always be a last resort and the risk/ benefits should be fully discussed and agreed to. Some care home will be happier to accept an admission if they know the psychiatric team is involved.
I am suggesting it because sounds as though his behaviour is very difficult. I can only relate to how things would happen in Scotland and have no knowledge of services elsewhere.
I also think a capacity assessment would help you to know how to manage his needs and this is usually done by a medic ( gp can do this, but often they are short of time.)
A Cpn might also offer your mil some support in such a difficult situation. Some people take advise from a health professional more than from family

testing - oh dear, that does sound similar. Your last sentence in particular - are they being wifully difficult, or can they not help it? Who knows.
nooddsocks - I'll suggest it to my DP, although I think FiL may already have seen a psychiatrist. He's had a medical assessment and gets care at home, but only for short times during the day, and he's awful to those carers too.

Sympathies, SuperSop, my relative also had a change in emotional responses after a stroke, becoming angry, demanding, impatient and aggressive, where this had not been a characteristic. It is very hard to live with.

A form of anti-depressant which a nurse recently described as 'mood calming' helped a lot. I can't be sure but I think it might be Mirtazapine.

I would also suggest he needs to be seen by an old age psychiatrist. Given how bad his behaviour is, he may need specialist placement or medication, or at the very least it would guide which homes you look at so stop you wasting your time getting your hopes up on homes that turn you down or can't meet his needs.

@MiggyInThePiddle Yes we've had made some good progress with mirtazapine in conjunction with some other medications.

@supersop60 re intent. I think my MIL can and does sometimes make a conscious effort to try to behave - she makes a big effort for her son (my husband) that she doesn't make unless he is in the room. That said she still can't control herself quite often despite him being there. The way it's been explained to us is that the frontal lobe damage has enhanced and brought out ugly elements of her personality that have always been there but she held back - my husband has admitted she has always had a vicious and selfish streak 😫. Even if she isn't aware at the time, she acknowledges it after the event unless she has really crossed lines (extreme verbal and physical aggression) in which case she becomes like a naughty toddler that knows it has been caught out but is determined to lie it's way out of trouble.

Re psychiatrist assessment, my MIL had been "assessed" and scanned but as it turns out from more of a capacity point of view. As she passed with flying colours and my FIL was too embarrassed to say anything about her behaviour it was completely overlooked. Even when we subsequently were begging for help (think physical attacks with scissors etc) from everyone we were ignored for 6 months until we applied for continuing healthcare at which point everyone was falling over themselves to "help" in an attempt to thwart the application. The input has improved things so definitely worth asking for an assessment, again your life will be made easier with a power of attorney.

I hope your FIL finds a good placement soon.

testingtesting111 you have my deepest sympathy.
You saying about your FiL's unwillingness to tell the truth about her behaviour sounds familiar. I think that this generation still have a 'stiff upper lip, stuff and nonsense ' mentality, and a feeling that they should be just getting on with it.
Our latest situation is that two applications have been turned down (one because they don't have space on the dementia floor) and the social worker has applied for a third one today.
I keep wondering what people used to do in the "olden days"